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Blogging Against Disablism Day May 1st, 2009

April 13, 2009

Goldfish has just announed that for the fourth year running, Blogging Against Disablism Day (BADD) will be hosted at her blog, Diary of a Goldfish, on May 1st, 2009. I will definitely be participating, and I hope those of you who blog about DisAbility will too. Spread the word, please!

Amazonfailgate

April 13, 2009

I got to like Amazon while I was at university, trying to study. I’m not sure I like them that much right now, though.

It seems they’ve been taking lessons from certain BBC watching adults about what they should and should not be selling. As Textual Fury puts it, they are removing books that might upset children.

This story has the attention of the mainstream because the plans mean that books on homosexuality, bisexuality and transgender issues will be removed. However, what most mainstreamer’s are not mentioning is that the list of books to be removed will also include those  on DisAbility and sexuality.  My thanks must go out to the always sensitive Jennie for being the exception.

Thanks also to Lisybabe for mentioning Tom Shakespeare et al’s sociology textbook The Sexual Politics of Disability. The Ultimate Guide to Sex and Disability in her post on this. Something to add to the ever-growing list of books I want to read!

Many articles about this are citing Twitter, where the matter is being called #amazonfail. Yes, Amazon certainly do fail. They fail to understand one simple fact- that people with DisAbilities have feelings, too. Thanks to them, I’m one step closer to understanding the actions of a certain Lucy Baxter.

I wonder if Amazon have heard of the Disability Discrimination Act? Because I’m sure that if they act on these plans, they’ll be breaking it.

Taking Apart Recent Research Into Autism

April 12, 2009

This is a guest post by Unity. It was originally posted here. Thanks to Unity.

The business for today is yet another piece of piss poor science/health journalism by the Independent:

Vinyl flooring ‘doubles chances of children being autistic’, study shows

Children who live in homes with vinyl flooring have double the chance of being autistic, research has discovered. The finding – which amazed even the scientists conducting the study – provides one of the first clues as to a possible cause of the condition.

Shall we run down the checklist?

Scary sounding and, for preference, incurable/untreatable/terminal (delete as applicable) but poorly understood illness/condition (autism)? Check!

Sympathetic ‘victims’ (childrens)? Check!

Common household item (vinyl flooring)? Check!

Meaningless statement of relative risk derived from a wholly speculative and unverified epidemiological correlation (’doubles chances’)? Check!

Right, so this is all a load of bollocks? CHECK!

But don’t just take my word for it, let’s take a look at the rest of the article, by Geoffrey Keen and Nina Lakhani, and explain exactly how we arrive at that last conclusion, starting with…

The study, by scientists in Sweden, Denmark and the United States, stumbled across the connection almost by accident.

Well that’s a bad sign for starters.

Yes, science is no less prone to throwing up its fair share of serendipitous accidental discoveries than another field of intellectual endeavour but for every such discovery (electric current, radioactivity, pencillin) there’s are thousands of other unlooked for ‘discoveries’ that rapidly fall by the wayside and into well-deserved obscurity for the simple reasons that further investigation shows them to be complete and utter rubbish – and this is particularly true of apparent epidemiological ‘discoveries’ arising from post hoc analyses derived from data that was originally collated for an entirely different purpose.

This is precisly the situation we have here. The main study, from which the data used in this paper was abstracted, was primarily concerned with an altogether different set of common childhood ailments and conditions:

The present paper describes the results of a study undertaken as part of a larger project devoted to the connection between properties of the indoor environment and asthma and allergy in young Swedish children. The larger project, The Dampness in Buildings and Health (DBH) Study, began in the year 2000 with a questionnaire distributed to parents of all children 1–6 years of age in one Swedish county (DBH-I).

So, we start with an asthma/allergies study and now, nine years down the line, we have an alleged ‘connection’ between autism and vinyl flooring with the researchers getting from A to B as follows:

The original survey collected information about the child, the family situation, practices such as smoking, allergic symptoms, type of residence, moisture-related problems, and type of flooring material, which included polyvinyl chloride (PVC). The 2005 survey, based on the same children, now 6–8 years of age, also asked if, during the intervening period, the child had been diagnosed with Autism, Asperger’s syndrome, or Tourette’s syndrome.

There is a screamingly obvious problem with this particular methodology.

The main study was designed specifically to look for possible causes and contributory factors relating to asthma and allergies and, consequently, would have collated information relating to a range of factors that the researchers thought might be relevant to the study. It also means that there’s a wide range of other factors relating to the families included in the study which were excluded from consideration because they were thought not to be relevant to the study’s main purpose any one (or collection) of which could also be correlated with the prevalence of autism found by the follow-up study AND also correlated with the prevalence of vinyl flooring. That’s one of key reasons why one cannot infer causation from correlation, because an apparent correlation between two factors may, quite easily, be the product of individual correlations between each of these two factors and third, unknown, factor (factor X).

The classic example of a false assumption based on a ‘factor X’ correlation was the miasmatic theory of disease, which was popular from the Middle Ages right through to the 19th Century and which was, at one time, thought to explain why diseases such as cholera and the ‘Black Death’ were endemic in areas where the water supply was unfiltered, untreated and foul-smelling. Ironically, the wholly mistaken belief that cholera was transmitted by ‘bad air’ did lead to improvements in public sanitation that did result in fewer outbreaks of cholera, all of which appeared to support the validity of the miasmatic theory and it was only when John Snow traced the cause of an outbreak of cholera in Soho (in 1854) to the public water pump in Broad Street, that miasmatic theory was disproven.

Despite this very obvious problem with the articles headline assertions, the Indy goes on to add:

It is being taken seriously because autism has long been thought to result from environmental factors.

All of which completely misrepresents the current state of autism research.

As most people are, I think, perfectly aware, we don’t know exactly what cause autism or even if there is a single common cause for the condition – increasingly the prevailing view of the condition is that its an extremely complex disorder in which its core aspects have distinct but co-occuring causes. There is no single cause for autism, rather there are a number of complex, overlapping causes in which environmental factors may play some part, even if it well established that autism has a strong genetic component, one that is equally complex to the point where its not clear whether it occurs as a consequence of complex multi-gene interactions or due to rare mutations with major effects. There is also a growing body of evidence linking the condition to ‘de novo mutations’ (mutations found in the child that are not present in its parents) which suggests that autism is heritable but not inherited, i.e. that what children may actually inherit from their parents is a genetic susceptibility to autism that may become active due to the influence of anything from environmental factors to simple random chance.

So, while there are many environmental factors that have been put forward as possible causes for autism (including certain foods, infectious disease, heavy metals, solvents, diesel exhaust, PCBs, phthalates and phenols used in plastic products, pesticides, brominated flame retardants, alcohol, smoking, illicit drugs, vaccines and prenatal stress) there is no solid evidence of causation for any of these candidates as yet and if de novo mutations are, indeed, part of the causal mechanism, no guarantees that eliminating any of the alleged causal factors will actually have any impact on the prevalence of the condition

Between 133,000 and 200,000 British children are thought to be autistic, but nobody knows for sure, or whether their numbers are increasing, because they are not counted. But the numbers of babies born with the condition in California has risen more than seven times in the past two decades, convincing scientists that pollution must be to blame.

Convincing some scientists but not all, not be a long way and, again, the article woefully misrepresents the findings of a 1999 report by the California Healthy and Human Services Agency to support its already poor line of argument as the National Autistic Society point out in its own, excellent, overview of the existing evidence for the prevalence of autistic spectrum disorders.

At present, it is not possible from the California study to draw any definite conclusions concerning the apparent rise in rates. The author of the California report comes to the same conclusion. The report emphasises the complexity of the problem and the need for properly designed research.

Quite… and please do read the NAS’s article in full, it does provide a very good overview of both the current state of knowledge and understanding of the prevalence of the condition and the difficulties that arise when attempting to calculate accurate incidence/prevalence rates for autism and autistic spectrum disorder.

Skipping quick over the next bit, which give only a bit of basic factual information about the study…

The new research, which traced nearly 5,000 Swedish children from infancy to at least six years old, set out to investigate links between air pollution and asthma and other allergies. The scientists – from Karlstad University in Sweden, the universities of Rochester and Texas in America, and the Technical University of Denmark – identified the type of flooring in each home at the start of the study, but only started to look at autism later.

…the articel goes on to state that:

Their paper, published in the journal Neurotoxicity, describes the findings as “puzzling, even baffling, and not readily explicable at this time”. But it adds: “Because they are among few clues that have emerged about possible environmental contributions to autistic disorders, we believe that they should be weighed carefully and warrant further study”.

Oops – looks like its the sub-editor’s day off. The article doesn’t appear in a journal called Neurotoxicity, in fact you’ll be hard pushed to find such a journal as it doesn’t exist and the actual journal it appears in is called Neurotoxicology, but having tracked down the abstract, what we find is not only that the researchers have been, as always (and as the article notes, belatedly), much more circumspect in their conclusions but that vinyl flooring is only one of five factors where the study found an apparent correlation with the incidence of autism in the study group:

An analysis of the associations between indoor environmental variables in 2000 as well as other background factors and the ASD diagnosis indicated five statistically significant variables: (1) maternal smoking; (2) male sex; (3) economic problems in the family; (4) condensation on windows, a proxy for low ventilation rate in the home; (5) PVC flooring, especially in the parents’ bedroom. In addition, airway symptoms of wheezing and physician-diagnosed asthma in the baseline investigation (2000) were associated with ASD 5 years later.

So, in theory, the article could have been headed up as “Maternal smoking ‘doubles chances of autism’, say study”, or maleness, poverty or even poor ventilation and condensation, but it doesn’t because all this is leading up to a specific point… this:

A possible explanation, they suggest, is that vinyl, or PVC, flooring produces dust full of phthalates, which are then breathed in. Experts who have reviewed the study believe that, if this is the cause, the children may have been most vulnerable when their brains were developing in the womb.

That’s a big if there and all the more so for having tracked down the researchers previous study on phthalates and asthma, which was found to be subject to an important limitation, the data on exposure to phthalates was too imprecise to draw any kind of solid conclusions from the study.

Nevertheless, it seems that phthalates, a plasticising agent used to increase the flexibility of plastics, are set to become the ‘next big thing’ in ‘environmental’ autism scare stories, with this latest paper following closely on heels of an epidemiological study by researchers at UC Davis, which revisited and updates the statistical data used in the 1999 California prevalence study and claims to show a substantial real increase in the prevalence of autism in the state, although its not clear from the abstract alone whether this paper has adequately addressed the methodological issues that the National Autistic Society highlighted in their article (linked earlier). It may well be that the researchers, here, have hit upon an interesting line of future enquiry but, and its a very big but that the Indy have chosen to ignore, its far too early to say whether this will lead anywhere in particular or prove to be yet another blind alley. Other than the two papers already linked in this article I can find only two other research papers on PubMed which reference both phthalates and autism, a 2004 animal study (using rats) which looked at the possible connection to motor hyperactivity in autism and ADHD and a new study, published in January this year, which postulates that a transient thyroxine deficiency in pregnancy might be a causal factor for autism. This last, and seeningly new, hypothesis has yet to be tested but, if the abstract is anything to go by, could well lead, in the fullness of time, to a rich vein of autism scare stories relating to what are, otherwise, very humble and mundane vegetables of the brassica family (cabbage, cauliflower, broccoli, etc.) all of which contain natural chemicals (goitrogens) which suppress the function of the thyroid gland.

But that’s almost certainly part of the appeal, to press, of this kind of story, as the articles final paragraph hints…

If this is so, the threat may come from more than just vinyl flooring. Californian research has also found high levels of the chemicals in wall-to-wall carpeting.

Quite – and if one does nothing more than consult Wikipedia, one also finds that…

Phthalates are used in a large variety of products, from enteric coatings of pharmaceutical pills to viscosity control agents, gelling agents, film formers, stabilizers, dispersants, lubricants, binders, emulsifying agents, and suspending agents. End applications include adhesives and glues, agricultural adjuvants, building materials, personal care products, detergents and surfactants, plastic objects, paints, printing inks and coatings, pharmaceuticals, food products and textiles.

Phthalates are also frequently used in soft plastic fishing lures, nail polish, adhesives, caulk, paint pigments, and sex toys made of so-called “jelly rubber.” Phthalates are used in a variety of household applications (shower curtains, adhesives, perfume), modern electronics and medical applications such as catheters. The most widely-used phthalates are the di-2-ethyl hexyl phthalate (DEHP), the diisodecyl phthalate (DIDP) and the diisononyl phthalate (DINP). DEHP is the dominant plasticizer used in PVC, due to its low cost. Benzylbutylphthalate (BBzP) is used in the manufacture of foamed PVC, which is mostly used as a flooring material. Phthalates with small R and R’ groups are used as solvents in perfumes and pesticides.

Phthalates are pretty much everywhere in any modern work or home setting, all of which makes this story perfect fodder for the jobbing but terminally lazy journalist – its one of those gift stories that just keeps on giving because there’s always going to be another scare story just around the corner… just pick a product off what is an already very long list and run the same basic story over, and over, and over, and over…

Bags I get the ‘Jelly Dildos Cause Autism’ headline.

Same Difference To Host The Next DisAbility Blog Carnival!

April 10, 2009

Hello Readers! Big, exciting news! The next issue of the Disability Blog Carnival is to be posted on May 14th and will be hosted by me, right here at Same Difference! You can submit posts for the carnival from here. The theme will be DisAbility… Obvious choice, really.

I’m already looking forward  to reading your submissions. Happy blogging!

Thank You Home And Away!

April 10, 2009

I’m just writing this quick post to thank the writers at Home And Away for the brilliant way they are covering Brendan Austin’s autism. In today’s episode, Xavier Austin, Brendan’s little brother, reluctantly introduced Brendan to two of his friends. Reluctantly, because he was worried that they wouldn’t like the way he behaved around Brendan. They both loved him, though, and assured Xavier that he had nothing to worry about. Home And Away are using this storyline to send out very positive messages to the mainstream, and making me, as a DisAbled viewer, feel proud to be a fan.

JK Rowling Quits MS Charity

April 9, 2009

This story combines two of my great loves- literature and DisAbility.

JK Rowling has stood down as patron of the Multiple Sclerosis Society Scotland claiming that the charity is being split by an internal row.

The Harry Potter author, whose mother had the disease and died aged 45, has backed the charity for nearly a decade.

But she said conflict between Scotland and management in London had resulted in resignations and demoralisation.

Ms Rowling said in a statement: “I have now reluctantly decided that I cannot, in good conscience, continue to be the public face of a charity that is changing beyond recognition from the one with which I have been so proud to be associated.”

She said she had taken the decision to stand down “with profound sadness and regret” but added that her financial support of a research project at Edinburgh University would continue.

She added: “I also remain committed to financing future research into the treatment and causes of multiple sclerosis, and to campaigning for better care and treatment of people with MS in Scotland, which is the MS capital of the world.

“I have not taken the decision to quit my position as patron of MSSS lightly. Late last year I initiated and attended a mediation session, in the hope of sorting out long-standing and escalating conflict between the Scottish council and management in London, driven by the imposition of changes by London.

“Unfortunately, this achieved very little. With mounting frustration and disappointment, I have witnessed resignations of immensely dedicated people within MSSS and the increasing demoralisation of staff whom I have come to know and admire over the 10 years of our association.”

She said her disappointment could not be overstated and expressed hope that the MS Society Scotland manages to resolve its difficulties.

An MS Society spokesman said they were sorry JK Rowling was stepping down after being a great patron for many years.

He said: “The society is in the middle of a governance review to make sure we are properly organised to build on the excellent work we already do in Scotland and across the UK.

“We are a strong, democratic organisation and this review is being done in consultation with all of our 43,000 members.

“We would have preferred to do this with JK Rowling’s involvement, but we appreciate that significant change can be difficult.”

He urged supporters of the MS Society to work with them to deliver the best possible support to more than 10,000 people living with MS in Scotland.

I am very pleased to find out that, as well as being a very talented children’s writer with a brilliant imagination, Ms Rowling is such a keen supporter of DisAbility charities. I wish more celebrities could use their fame to support and raise awareness of DisAbility, because the mainstream gives celebrities so much attention and respect.


April Blog Carnival At YANUB

April 9, 2009

Yet Another Never Updated Blog hosts a DisAbility Blog Carnival linking to loads of DisAbled bloggers. See if you can spot my contribution!

DisAbility In Summer Bay At Last!

April 9, 2009

I’ve always loved Home And Away, just as much as I’ve always loved Neighbours. I have always had one little problem with Home And Away, however. While Neighbours has made several attempts to cover DisAbility over the last 23 years, Home And Away has never featured a DisAbled character in over 20 years.

Never, that is, until now. Brendan Austin, who has autism, hit British screens in today’s episode. I’d like to thank the people at Home And Away for creating him. It’s about time Summer Bay had a DisAbled resident.  I hope he stays around for a long time to come, and that the storyline represents him, and his DisAbility, in a positive light.

A Small Tribute To A Blogger I Never Read…

April 7, 2009

Several of the DisAbled bloggers whose writing I read carry tributes to a blogger called Sara, who kept a blog called Moving Right Along for almost four years. Sara died in late March 2009. I never knew about her blog, unfortunately, but, as a DisAbled blogger, she made many friends in the world of DisAbility blogging. Some of them also met her offline.

I may not have known Sara, but I did lose a close friend several years ago to severe DisAbility. I wish I’d had a blog at that time so that I could have recorded my thoughts. I know now that that would have been a great help to me. But that was long before blogs existed.

In tribute to Sara, and the strong and real friendship that she shared with many DisAbled bloggers, I’d like to link, here, to the posts they wrote in her memory. I believe that these are the times when DisAbled people need blogs the most, and I think these tribute posts prove my point.

First, the post at Moving Right Along by Erik, the person Sara herself described in her profile as ‘the love of her life.’

Elizabeth McClung writes about Sara, (and herself), brilliantly as usual, at Screw Bronze.

The Goldfish’s tribute at Diary of a Goldfish.

Jana shares her offline memories of Sara at Pilgrimsteps.

Kay pays tribute at The Gimp Parade.

Penny Richards links to all these tributes, and several of her favourite posts by Sara.

Wheelie Catholic’s tribute is here.

Wheelchair Dancer’s is here.

My thoughts are with them all, and with everyone who has ever lost a friend to DisAbility.

From what I’ve read about Sara tonight, I can tell that she was truly DisAbled and that she inspired many people. May she Run In Paradise.

BBC Three Are Looking For Dancers On Wheels

April 6, 2009

BBC Three are searching for wheelchair-using dancers to get involved in a new series. The winners could go on to take part in an international wheelchair dance sport competition. So if you use a wheelchair and think you’ve got what it takes to be the best, BBC Three want to hear from you.

If you are interested, you can phone 020 7428 5752 or 020 7428 5755 or email wheelchair.dancers@fevermedia.co.uk.

The closing date for entries is 14th May.

You need to be available for the selection process in May, training in June and a potential five-week filming period in July.

Same Difference Climbs Up The Wikio Rankings! Free Plugs For My Mainstream Friends

April 6, 2009

I’m pleased to announce that, for the month of April, Same Difference has climbed up the rankings at Wikio. In the Top Blogs: Politics category I have climbed 19 places from No. 134 to No. 115 and in the Top Blogs category I have climbed a massive 93 places from 339 to 246.

I’d also like to congratulate some of my mainstream friends for their rankings:

Liberal Conspiracy stays at No 3 in both categories.

Pickled Politics climbs 2 places to No 26 in Politics.

Aaron Heath climbs 9 places to 69 in Politics, and a massive 38 places to No 108 in top blogs.

Iraqi Child To Receive Specialist Treatment In London

April 5, 2009

I’m writing about this case because it proves that there are still some generous people in the world.

Shams Karim, 3, was caught in a car bomb explosion at home in Baghdad two years ago. It killed her mother and left Shams badly disfigured and without any eyesight.

Now, thanks to generous donations from Sunday Times readers and the personal efforts of its Middle East correspondent Hala Jaber, Shams is to be given the best treatment possible at Moorfields Eye Hospital and Great Ormond Street Hospital for Children.

Doctors at both hospitals are waiving their fees for treating Shams, who is having her first examinations on Monday and may undergo some initial surgery on her eyelids later in the week.

The doctors have already cautioned that miracles should not be expected.

Shams’ left eye is completely gone, leaving only a gash that still looks raw although it is two years on.

Her right eye is sealed shut. There is thought to be an outside chance that a small amount of sight might be restored, but that will not be clear until tests are done.

But doctors are confident that reconstructive and cosmetic surgery can at least restore Shams’ looks, and she could be given prosthetic eyes.

A generous Iraqi Foreign Ministry official has lent the family his apartment in London during Shams’ treatment, which will see her coming and going for months while multiple operations are carried out.

The Iraqi embassy has offered to help her father and his aunt find their way in a city where they are bound to feel bewildered.

We must not forget that,  in Iraq and in Afghanistan, there are many other children and families who have been left in similar situations by the wars in their countries. They will never be as lucky as Shams and her family have been. But this story proves to me that, once in a while, something really good can come out of what might seem, to most of us who watch it from the comfort of our homes, to be endless media coverage of war. There is a point to it after all.

Of course I wish Shams the best possible results from her treatment.

What’s In A Word?

April 3, 2009

This post has been in my mind for quite a while. I finally decided to write it this morning, after reading a news report that Scottish police have been told not to say ‘blind as a bat’ because the phrase may cause offense.

I’ve always loved the English language, but I’ve been thinking recently about how disability-unfriendly our clichés are. So, let’s start with ‘blind as a bat.’ Bats are ‘flying mammals’ according to a dictionary. They’re found in dark places, and, as the phrase above suggests, they don’t have the greatest eyesight! The thing about bats is, they scare most people. So to compare blindness and bats may have been meant to suggest that blindness was negative, which it is. These days, however, it’s easy to understand how blind people might be offended by the phrase, because they could take it to mean that sighted people should be as scared of them as they should be of bats. It’s not very disability-friendly, that’s for sure.

The Scottish police think the instruction not to use the phrase is a crazy waste of time. But let me give them ‘paws’ for thought by considering rabbits for a second. Rabbits, unlike bats, have great eyesight. They also use any available surface as a toilet. So I wonder how a sighted person would feel if they were ever to be described as ‘sighted as a rabbit?’ I don’t think I’d like it, any more than I’d like to meet a bat while walking down the street.

Which leads me nicely to the next phrase I have a problem with. Those who can’t walk could easily find ‘walking down the street’ an offensive phrase. How are you supposed to get down the street if you’ll never take a footstep in your life?

There’s another one. ‘Standing on my own two feet.’ What if you can’t stand? The phrase is used to suggest independence. True, if you can’t stand, you’ll always need help with some things that people who can stand can do without help. But I know some very independent wheelchair users, thank you very much! When are they going to be told that they are able to ‘sit on their own four wheels’ without it being considered an original play on words?

Or how about ‘seeing is believing’? What if you can’t see? If every blind person took offense at that phrase, which maybe they rightly should, they would be able to accuse all sighted people of being liars, because since they can’t see, they can never believe anything that they are told.

The only slightly disability-friendly cliché I’ve ever heard is ‘love is blind.’ But that is seen as a negative characteristic of love, because it suggests that love doesn’t question things that, maybe, it should. So does that suggest that blind people, like love, don’t question anything negative? I can definitely see why they would find that offensive. I’m sure they do question anything they don’t agree with!

So what’s in a word? Well, to turn another cliché on its head, ‘sticks and stones may break bones, but words can break hearts.’ Bones forget and heal, hearts don’t. So let’s invent some disability-friendly cliché’s! Suggestions welcome.

Siera Leone – amputee football – Violent Coasts – BBC Travel

April 2, 2009

A friend showed me this video today. I thought some of my readers might be interested.

Vodpod videos no longer available.

more about “Siera Leone – amputee football – Viol…“, posted with vodpod

World Autism Awareness Day

April 2, 2009

Today (April 2nd 2008) is World Autism Awareness Day. So please try to raise awareness of this DisAbility today in any way you can!

autism-awareness-day

April Fool’s Day At BBC Ouch

April 1, 2009

Today, Wednesday, April 1st, BBC Ouch’s News page is displaying a whole list of hilariously unbelievable headlines. They can only be April Fools!  For those who fancy a disability related laugh, here are my favourite five:

Inclusive spaghetti shapes now in supermarkets

Food Glorious Food Magazine, Wednesday 1st October

The leading manufacturer of spaghetti hoops and letters has released a new product: spaghetti formed into the likenesses of disabled people using wheelchairs, walking sticks and guide dogs. More

Blunkett secures new high profile ad campaign

TV Gossip, Wednesday 1st April

The former ‘hard man of British politics’ is showing a softer and gentler side as he stars with his guide dog, Sadie, in a new series of primetime advertisements for Good Guide Choccy Treats. More

Pistorius adopts new sport

Athletics Almanac, Wednesday 1st April

Paralympic runner Oscar Pistorius has vowed to achieve his ambition of taking part in the next able-bodied Olympics, thanks to modifications to his prosthetic legs which will enable him to Zebedee bounce to extraordinary heights in the pole-vault event, but without the use of a pole. More

Beyond Boundaries: the toughest challenge yet

Adventurers Journal, Wednesday 1st October

The final series of the BBC’s Beyond Boundaries will see a team of fearless disabled people attempt to cross London by underground, from east to west. Safety campaigners have criticised the plans as extremely foolhardy. More

Chocolate biscuits ‘can help disability’

Medical Matters, Wednesday 1st April

Researchers at the University of Birmingham believe that eating four chocolate biscuits a day may ‘significantly improve’ problems with balance and unsteadiness experienced by people with walking difficulties. More

Thanks to Ouch for making me laugh! I’m off to eat a million chocolate biscuits!

Kiruna Stamell

March 31, 2009

Australian actress Kiruna Stamell has restricted growth. But her DisAbility certainly hasn’t restricted her career! She recently appeared in Eastenders as a special needs teacher. Now, the BBC Ouch blog reports that she is to appear in a major new BBC One drama called All The Small Things. She will star alongside Sarah Lancashire and Neil Pearson as a member of a community choir.

All The Small Things starts tonight (31st March) at 9pm on BBC1. It will also be available on BBC iPlayer. And for those who are as inspired by Kiruna as I am, she’ll be presenting April’s Ouch! Podcast, which you’ll be able to download here from Thursday 2nd April.

Kiruna Stamell has my best wishes on and offscreen, and the BBC have my thanks for their increasing support of DisAbled actors.

Keith Duffy on Autism

March 30, 2009

By the end of his tragically short life, Ivan Cameron was almost as well known as his father David. Now, another celebrity, Boyzone singer and Coronation Street actor Keith Duffy, has spoken out about his child’s DisAbility. His daughter, Mia, now 9, has Autism.

Vodpod videos no longer available.

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Mia  has integrated into mainstream school thanks to Applied Behavioural Analysis, a specialised, individualised program in which major goals are broken down into smaller, achievable ones.

Over the years Keith has worked very hard to raise awareness and funding for autism charities.

This year he’s running the London Marathon  for the National Autistic Society and Special Provision for the Education of Autistic Children (SPEAC).

On 2nd April, autism organisations across the world will mark World Autism Awareness Day (WAAD) as declared by the United Nations.

Sponsorship Request For 2009 London Marathon

March 29, 2009

Just a quick post to ask you to consider sponsoring Reza Ghadiri-Zare. He hopes to run the 2009 London Marathon next month to raise money for Leonard Cheshire Disability. He says: I’ve decided to run for Leonard Cheshire as they’re a very worthy cause and don’t get as much exposure as the more established charities.

And for every £100 raised, he’s promised to share an embarrassing story from his life on his Justgiving page. He’s already revealed, among other things, why he’s glad Woolworths went into administration!

I thank him for his sensitivity to disability, and Robert Sharp for the info.

Fourth Official Threatens To Resign From EHRC

March 29, 2009

Equalities watchdog Equalities And Human Rights Commission (EHRC) faced a crisis on Friday night when Sir Bert Massie, former head of what was the Disability Rights Commission, threatened to resign from the organisation. Commissioner Kay Hampton, Chief Executive Nicola Brewer and Group Director For Strategy Patrick Diamond have all recently resigned.

In a written warning to colleagues, which was read out at a board meeting on Thursday, Sir Bert said he was concerned about the performance of the watchdog.

He told The Guardian:

There is an anxiety that the commission is not performing as well as it might do. I am concerned that the work has not been going as fast as it should be. There is a general unease about the direction of the commission and how it is going. If so many people resign, you have to wonder whether they are happy with their direction.

He said the concern was not based on the commission’s posistion on race, gender or disability. It is a broader concern that the organisation is not achieving enough. He added:

Commissioners have a duty to ensure that for the £70m of public money we get, the maximum for every penny spent. It is all about corporate governance. It is a lot of money. We could do a lot with that money.

Sir Bert said his final decision depends on who replaces Brewer as chief executive.

There is also unhappiness within the organisation about Trevor Phillips’ leadership style, his closeness to the government and some of his comments on race. He chose not to comment.

One politician described the disarray within the organisation as a tragedy.

Eighteen months after the Equal Opportunities Commission, Commission for Racial Equality and Disability Rights Commission were merged to create a single, government-funded rights watchdog, campaign groups monitoring the organisation’s progress are increasingly outspoken about their disappointment with its achievements.

Part of the concern stems from a shift in the tone and style of the new body, which emphasises the concept of “fairness” more than the notions of “equality” and “discrimination”, and is less focused on campaigning. A spokesman for the EHRC said it saw itself as “a regulator and not simply a campaigning organisation”. He said: Fairness is a great British value. I think fairness is a concept that a wider population understands.

We are proud of what we have done in our first year, he said, adding that the EHRC had made £10.5m worth of grants to 250 organisations, had been involved in up to 70 legal actions and had produced substantial reports across all equalities sectors.

An equality lawyer, who also asked not to be named, said: The problem is that ‘fairness’, unlike equality, has no basis in law. It’s a much more nebulous concept. Fairness is not about protecting the rights of those who have experienced discrimination, it’s about being fair to everyone, including businesses and white men.


Social Networking Site For Sufferers of Multiple Sclerosis

March 28, 2009

George Pepper, 26, from Leeds, was diagnosed with Multiple Sclerosis (MS) when he was just 22.

His speech became slurred, his vision blurred, walking became difficult and he vomited continuously. He even lost feeling in his body, meaning that he couldn’t feel temperatures. So he tested bath water by drinking it! In the first 15 months after his diagnosis, George had seven relapses.

He didn’t know much about his condition, so he tried to find people in his age group that he could discuss it with. But, he says, all the sufferers he met at the hospital were far older. He adds: Peer support would have been a great benefit.

So he decided to solve this problem for other young people. He’s set up a social networking site for young people with MS called Shift. ms. It tackles all kinds of issues that concern them,  from work to dating. George says:

The website is somewhere for people with MS to find advice and to be encouraged to do all the things they have always done. It is in your 20s and 30s that you are making decisions about your career, relationships, and the future, so having peer support is a great comfort and a practical benefit. There are also a number of tricky issues where sharing experiences can help, such as how to tell a date that you have MS.We also have a section on the website called ‘sex drugs and rock ‘n’ roll’ – where people can discuss things that they perhaps do not want to ask their doctor, such as ‘can I continue taking my ecstasy now I have MS?” And because the site is aimed specifically at the young it uses social networking sites and encourages people to upload their own videos.

The site has been praised by professionals and leading MS charities. Dr Simon Shields, a neurologist at the Norfolk and Norwich University Hospital, said:

One major benefit of this site is that it is designed with young people who are using the internet a lot and it is fun to use. It also has the ability to create contacts so people can interact in a way that other websites cannot. MS is fairly well supported medically, but if you have a problem or feel embarrassed the access is often easier to talk to someone who is going through it.I have learnt a lot from patients who come and tell me about their experiences and keeps me current – sometimes more than medical journals.

Jane Spink of the MS Society added:

There has been a distinct lack of appropriate information and support for children and young people affected by MS, and the MS Society has worked hard to improve this. It’s good to see ‘Shift.ms’ exploring the niche of social networking.

George hopes the website will allow young people with MS to meet other sufferers with similar interests, offline as well as online.

George Pepper has come out of a very difficult time in his own life with a very positive attitude and a wish to help others like himself. He is truly DisAbled, and an inspiration to anyone, whatever their DisAbility. I wish him the best of luck with the website, and in his life.

Jordan Giles

March 28, 2009

It’s been a while since I covered compensation payments for Cerebral Palsy, but today, MSN reports on yet another one.

Jordan Giles, 10, developed CP due to difficulties at his birth in 1998, at the Vale of Leven Hospital in Dunbartonshire, Scotland. Now the family have been awarded £5.25 million in an out of court settlement. This is, so far, Scotland’s biggest compensation payout.

Jordan attends a mainstream school, but can’t dress or wash himself. He has epilepsy, a common side effect of CP. He needs constant care, so his mother, Monica, 39, is not able to have a paid job. She says:

The settlement means I know he will be looked after when his dad and I are gone. All I want is for Jordan to have a happy life and grow up normally like any other kid. Life shouldn’t have been as hard as it has been for him.

Some of the money will be used to buy equipment and adapt a new house for Jordan.

As I’ve always said, health and physical ability are priceless. No amount of money can cure CP, and no one can turn back time. But we can only hope that the compensation makes Jordan’s life just a little easier. He and his family have my best wishes.


Same Difference Crosses The 10,000 Hits Mark!

March 27, 2009

I’m thrilled, and very excited, to be able to tell you, my lovely readers, that today, Same Difference has notched up more than 10,000 visitors in total! It has grown beyond my wildest dreams since it was created on June 21st, 2007. I’d just like to use this post to thank every single one of my 10,000+ visitors. This blog wouldn’t be where it is today without you! I love you all! Here’s to the next 10,000 hits!

World Autism Awareness Day 2nd April 2009

March 27, 2009

I’ve just read that Wednesday 2nd April 2009 is World Autism Awareness Day. So please try to use the day to raise awareness of this DisAbility!

autism-awareness-day

A Review of The Last American Freak Show

March 27, 2009

Anyone who followed the story of DisAbled director Richard Butchins’ documentary on DisAbility, The Last American Freak Show, featured here on Same Difference last year, may be interested to read this review of the documentary, from today’s Guardian.

I’m also very pleased to read that The Last American Freak Show will be screened in the London International Documentary Festival next Monday, March 31st.

Richard Butchins has my support and best wishes, as always.

We’ve Been Chosen To Clap And Cheer

March 26, 2009

Campaigners, including former Manchester United player Danny Wallace, are trying to make it easier for DisAbled fans to watch football.

Wallace was forced to retire from football aged 32 after being diagnosed with Multiple Sclerosis. Now in his mid-40s, he’s putting his fame to good use. He campaigns for better facilities for DisAbled football fans at all professional football grounds. He says: From where I sat last time, I could see the fans in wheelchairs and noticed that they were in a poor position to appreciate the game.

Anyone who’s ever experienced live sport, or entertainment, no doubt knows that the view’s never great from a distance if you’re sitting down. But if you can’t stand up, it’s much worse. Kick It Out, football’s campaign against racism, is now expanding to fight other forms of discrimination in the game.  It will relaunch its Equality Standards programme for football today (March 26th) to include disability and gender as well as racial diversity.

Wallace is also an ambassador for the National Association of Disabled Supporters [Nads], which campaigns on such issues as access to toilets, bars and shops within grounds, as well as the reservation of covered areas with good visibility for those in wheelchairs – at both ends of the ground.

Our best evidence is that of the 92 professional clubs in England, only 37 allow us to sit with our own fans. Says Nads president Joyce Cook, a wheelchair user. She adds: The Premier League clubs are the biggest offenders. Part of the fun of going away is to be part of a vociferous minority, yet we are isolated and told not to wear our colours or celebrate if our teams score. There have been incidents at a number of clubs where disabled people have been verbally abused by overheated home fans. It’s only a matter of time before somebody is physically attacked.

About football grounds’ DisAbled seating arrangements, Cook, a Manchester United fan, says:  A ground like Old Trafford should have 283 places for wheelchair users, yet it has only 120. Chelsea, meanwhile, has stopped wheelchair applications because the club says it is oversubscribed. However, Cook says that two recently built grounds in London, Wembley and Emirates Stadium, home of Arsenal, are reasonably accessible.

Wembley chairman David Bernstein last year accepted an invitation to become president of Nads. He said at the time: Over 30,000 disabled supporters every week go to football throughout the UK, and we want to see that number grow.

So do I. DisAbled football fans may not be able to play the game, but there is no reason why they shouldn’t be allowed to watch it, in comfort and safety, and with a decent view. I prefer snooker myself, but I completely support Kick It Out and Nads in their efforts.

I Just Received An Email From 10 Downing Street!

March 24, 2009

Last year, I signed this petition. I then forgot all about it. So imagine my excitement today, when I recieved an email from 10 Downing Street, with no idea what it was about!

Well, the petition has now closed, as it’s deadline has passed. The email was Downing Street’s response to it. Here’s what they have to say for themselves:

We received a petition asking:

“We the undersigned petition the Prime Minister to ratify the UN Convention on the Rights of Persons with Disabilities in full, without reservation or limitation, by December 2008.”

Details of Petition:

“The Convention is the first international treaty in history to create a specific legal framework to protect the human rights of disabled people across the globe and to recognise that disabled and non-disabled people share a common humanity. 20 countries need to ratify the Convention before it becomes legally binding. To date only 17 have done so. The UK is not among them. The UK signed the Convention in March 2007. Since then 2,000 people have signed a petition on this site calling on the Government to ratify it without delay. In response to pressure from campaigners the UK has pledged to ratify the Convention by the end of 2008. However, the Convention Campaign Coalition (CCC) is increasingly concerned that the Government might try to reserve, or opt out of, certain Convention rights.Reserving against certain Convention articles means that some parts of the Convention would not be legally binding in the UK. Human Rights are inalienable and universal. If the UK is truly committed to disabled people’s human rights it cannot pick and choose which Convention rights it is willing to support.”

Read the Government’s response

The Government is fully committed to ensuring equality for disabled people, and believes that the UN Convention is a powerful statement of disabled people’s human rights. That is why the Government supported the negotiations on the Convention; signed it as soon as it was possible to do so; and remains committed to ratifying the Convention as soon as possible.

The time from signature to ratification of similar Conventions by the UK varies considerably, and is on average four years. The Government’s original aim of ratification by the end of 2008, therefore, was always a very demanding one. Although the aim was not met, it was right to set a challenging timetable so that the Government could advance as far as it was able, and demonstrate the importance it places on the Convention. The Government’s revised ambition is to ratify the Convention in Spring 2009.

Some countries’ approach to ratification is aspirational, and that is a perfectly valid approach for them. The UK’s approach, however, is not to ratify any international treaty until it is in a position to ensure that it can implement the provisions and therefore comply with the obligations that it has accepted.  The UK has therefore been engaged in checking its laws, policies, practices and procedures against the Convention’s requirements.

Following this exercise a small number of reservations and interpretative declarations remain under consideration in respect of service in the armed forces, immigration, education and the review of arrangements for social security benefit appointees.

Reservations to international human rights treaties are often permitted and it is common for States to enter them on signature or ratification. Indeed, a number of States have already done so in respect of this Convention. Entering reservations does not of itself imply any fundamental lack of respect for human rights. In many cases States would not be able to ratify individual treaties without entering one or more reservations.

Most recently the Government has announced that it will sign the Optional Protocol to the Convention. This is a linked but separate Treaty which establishes two procedures aimed at strengthening the implementation and monitoring of the Convention.  The first is a procedural avenue that, subject to meeting conditions set out in the Optional Protocol, will enable individuals or groups of individuals to bring petitions to the UN Committee that has been established to monitor implementation of the Convention if they believe that their Convention rights have been breached. The second is an inquiry procedure giving the Committee authority to undertake inquiries, when reliable information is received, into allegations of grave or systematic violations of Convention rights.

This is good news for disabled people and the decision further demonstrates the Government’s firm commitment to the Convention, and to the principle of ensuring equality of human rights for disabled people.

I guess we’ll have to take what we can get, and keep hoping that they’ll keep their promise in Spring. I wish they would give us a more definite date, though!


An Inspirational Mother

March 23, 2009

First Heather McCarter wrote a children’s book about a talking wheelchair featuring her son, David. Now Joanne Zellweger has written a children’s book featuring her son, John Featherstone, 5, who has progressive hearing loss and was fitted with a cochlear implant aged 2.

The book, titled My Brother John, is written from the viewpoint of John’s sister, Caroline, 7. It aims to explain cochlear implants to other children, and to provide disabled children with a peer. It’s jolly, a celebration of John’s social skills and of the commitment it has taken to get him to this stage.

People think that children get an implant and can hear straight away and start speaking, says Gerard Featherstone, John’s father. An implant isn’t a miracle. They are not for everybody. They give you access to sound – learning to communicate through speech takes years of hard work from the parents as well as the child. What you learn is that hearing and listening are different things. With the implant John can hear a lot of things, but for him to learn language you have to make sure that he’s listening.

John isn’t cured. He’s deaf unless his implant is switched on, and has a limited vocabulary for his age. His family don’t deny that his DisAbility has changed their lives. However, his mother has chosen to deal with it by raising awareness and by helping other deaf children. I think that’s truly inspirational. The family has my best wishes.

My Brother John is available from Waterstone’s for £4.99.



When NOT To Issue A Parking Ticket

March 23, 2009

Thanks to George for alerting me to this.

“We are so appalled we struggle to find words,” said one aid official.

I couldn’t put it better myself. I always knew I hated councils for good reasons!

The Wheelchair Using Fan And Garfunkel

March 21, 2009

Just a quick post to say a quick thanks to BBC Ouch’s columnist, DisAbility Bitch, for sharing this article, reporting that Art Garfunkel insulted a wheelchair user at a recent concert, on Facebook. The words ‘totally unneccessary’ spring to mind. About his comments, of course.

Obama Makes Disablist Comment… On TV!

March 21, 2009

According to MSN, President Obama has messed up on TV, making what is thought to be his first major gaffe since being inaugurated.

Appearing on The Tonight Show with Jay Leno, the head of state joked that his bowling abilities were “like the Special Olympics or something”.

His joke backfired when Disability Rights campaigners said it was indicative of the prejudice faced by disabled people.

Bowling has proved to be a problem for the president on past occasions. During his electoral campaign an ill-advised media stunt saw him attempt to knock down the pins in an alley in Altoona, Pennsylvania. In front of the world’s media, Mr Obama chucked his ball down the gutter.

He told Leno he had since been practising at the White House and had got his score up to 129. But he added: “It’s like, it was like the Special Olympics or something.”

The studio audience saw the funny side. I can’t say I do, though, being physically DisAbled.

White House officials anticipated criticism, so Obama apologised to the chairman of the Special Olympics, Tim Shriver, by phone on his flight back to Washington after taping the interview.

Speaking to ABC’s Good Morning America, Mr Shriver said: He expressed his disappointment and he apologised in a way that was very moving. He expressed that he did not intend to humiliate this population.

The president said he wanted disabled athletes to visit the White House to bowl or play basketball, added Mr Shriver.
Apology accepted. By me, at least.
Video thanks to George.

Cerrie Burnell Investigates Disability Prejudice In The Media

March 19, 2009

The BBC Ouch blog links to a short film presented by DisAbled CBeebies presenter and actress, Cerrie Burnell, on disability prejudice in the media. The film was shown on BBC1 last night (Wednesday 18th March).Cerrie Burnell hit the headlines last month after parents complained that she was scaring their children, simply because she chooses not to wear a prosthetic arm! So the film was made after The One Show asked her to investigate wider attitudes to disability in the media.

Fear often comes from ignorance, so I believe the only way for society to accept disability … is surely for there to be better representation on screen. says Cerrie.

I couldn’t agree more.

Here’s the film. It’s well worth a watch.

Vodpod videos no longer available.

more about “Disability prejudice: Is the situatio…“, posted with vodpod

Cerrie Burnell is well and truly DisAbled. She will always have my support and best wishes, both on and off screen. I’m thrilled to see that her career has not been affected by last month’s madness.

Beyond Boundaries: Where Are They Now?

March 19, 2009

Ken Hames catches up with the participants of BBC’s Beyond Boundaries programmes, which have been running since 2005, in a two-part special called Beyond Boundaries: Where Are They Now?

Beyond Boundaries: Where Are They Now? can be seen this Sunday 22 March at 11.00pm on BBC Two (or in Scotland the following Tuesday 24 March, also at 11.00pm. The second programme follows on Sunday 29 March and Tuesday 31 March in Scotland, with the exact time yet to be confirmed.

Thanks to the BBC Ouch blog for the info.

World Cerebral Palsy Awareness Day

March 19, 2009

I’ve just found out on Facebook that tomorrow, Friday March 20th, is World Cerebral Palsy Awareness Day. So, for those who have any interest in this DisAbility for any reason, please use tomorrow to raise awareness of it, and of the fact that this day exists. I know I will do everything I can.

I have CP myself but, until right now, I had no idea that this day existed. Obviously I’m thrilled to find out that it does!

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She’s A Broken Record!

March 19, 2009

Since the 2008 Paralympics, Eleanor Simmonds has been thrown into the deep end of public attention. Last week, she broke the records for the 100m and the 400m at the Nationwide Junior Swimming Championships in Sheffield. Now, exactly a week later, she has broken the record for 400m frestyle at the British Swimming Championships, also in Sheffield.

I didn’t feel like I was going that fast but I hit 200m and just felt so exhausted, said Simmonds.

That was such hard work. I don’t know how I managed to get back.

Simmonds’s time of five minutes 31.44 seconds saw her win gold in the event – where results are determined on how close athletes get to the world record in their category.

She added: It’s all a bit of a surprise, I felt more relaxed than I did in Beijing and that time is just so amazing.

She has my best wishes, as always.

All’s Fair in Love and DisAbility

March 17, 2009

Mothers don’t usually like to get involved in their children’s love lives. Lucy Baxter, however, is very different. Her son Otto, 21, has Down’s Syndrome. She’s signed him up to dating agencies, and is even considering paying for him to go to a prostitute.

She says I would have no problem if he went to a brothel in Amsterdam. Why should people with Down’s Syndrome be kept separate and pigeon-holed when they have the same emotions, desires and feelings as so called “normal” people? He has the same expectations as everybody else.

She added that she would be delighted if Otto brought a girl home after a night out.

He gets a kiss or two because he does have a way of chatting people up – but it doesn’t get anywhere after that. She said, adding that: His room is stuffed full of condoms which he buys every time he goes to the pub with his friends and his collection of pornography is staggering.

Now, the real question. Of course Mrs Baxter is right in thinking that Otto is a teenage boy with feelings and desires just like anyone without a DisAbility. DisAbled people have perfectly normal romantic feelings, although some able-bodied people may find that surprising. And we have every right to have romantic feelings and relationships. So why is Mrs Baxter considering doing something so drastic to enable her son to experience something perfectly natural?

Well, in September 2008, 1044 UK adults participated in the Observer’s 2008 Sex Poll. When asked: Have you ever had sex with someone with a physical disability?:

70% said No, and I don’t think I would.
– 26% said No, but I would not rule it out.
– 4% said Yes

When I first read these statistics, I was shocked that the percentage of negative responses to the question was so high, because I honestly thought that attitudes to disability had improved dramatically since the 1900s. However, these statistics easily explain Mrs Baxter’s view of her son’s romantic future. If 96% of adults have never had a serious relationship with a physically disabled person, and a worryingly high percentage of that 96% think they would rule out that possibility, what hope do young DisAbled people have of ever having any other choice in this matter? What choice does Mrs Baxter have, if she wants her son to experience a serious romantic relationship?

The survey wasn’t, as far as I know, restricted to able-bodied adults. So it’s quite possible that the 4% of adults who responded positively to the question were physically DisAbled themselves.

I’m pleased to say that, this year, the media seems to be accepting the idea of physically DisAbled people having romantic feelings and relationships, with Linda Gilliard’s novel, Star Gazing, which has a blind protagonist, being shortlisted for the Romantic Novel of the Year Award, and BBC Scotland’s drama, Zig Zag Love, being screened on March 16th.

However, it seems that the physically DisAbled still face a challenge. We must remember that we have natural romantic feelings, and that this is our right. We must find more ways of bringing this fact to public attention. We must hope to lower these extremely high statistics sometime soon, so that, just maybe, we can start looking for love without our parents’ help!

This post was recently reprinted in this Newsletter.

Cara Readle

March 16, 2009

Cara Readle began her acting career on CBBC, where she played Layla, a DisAbled resident of a children’s home in The Story Of Tracy Beaker. Now 17, Cara, who has Cerebral Palsy, has just completed a film for BBC Scotland. Zig Zag Love sees Cara’s character, Ziggy, who also has CP, falling in love with a cancer patient named Peter, a typical teenage boy.

The film airs on BBC Scotland tonight. (Monday 16th March). Those outside Scotland can watch it on BBC iPlayer.

To mark the film, Cara answered BBC Ouch’s 13 Questions last week.

I can’t watch the film on TV, as I don’t live in Scotland. But I do know that Cara Readle is truly DisAbled, and I wish her all the best both on and off screen.

Harry Potter Star Tops A Hollywood Hotlist

March 14, 2009

Harry Potter star Daniel Radcliffe, who revealed last year that he suffers from the neurological DisAbility Dyspraxia, has now topped a list of Hollywood’s most valuable young stars.

Forbes’ Star Currency Survey  asked entertainment industry members to rank young stars on their work and bankability.

The survey said the British teen “was plucked from relative obscurity to take on the Harry Potter role and has made the most of the opportunity”.

It went on: “As Potter wraps up, he’s clearly just beginning.”

Daniel’s co-star, Emma Waton, came sixth.

As always, Daniel Radcliffe is a truly DisAbled inspiration. He has my best wishes both on and off screen.

Eleanor Simmonds… Again.

March 11, 2009

She’s back in the news,  this time for breaking records at the Nationwide Junior Swimming Championships! My best wishes, as always, to the truly DisAbled Paralympic swimmer, Eleanor Simmonds.

Highlighting Carers’ Difficulties

March 11, 2009

This is a guest post by Rumbold, who is a regular contributor to Pickled Politics, where this was originally posted today. Thanks to Rumbold.

Recently I wrote about the problems facing many disabled children in obtaining help from the state. Now an article has highlighted some of the issues faced by carers too. I think that the following is especially relevant:

As a carer, I have had to reduce my paid working hours to cope with all these extra demands on my time. Because I earn more than a pittance I am not eligible for carer’s allowance – or anything else from our local authority. If he could get a job, my husband would not be eligible for disabled person’s working tax credits. This feels like “heads we lose, tails they win.”

Once again, this is a barrier to work. Many disabled adults have the same problem. They want to work longer, but know that they cannot cope with the withdrawal of their disability benefits. Whilst no system can be perfect, surely one can be devised which allows disabled people and carers to work for longer and earn what they want without losing their benefits? Carers probably cannot work full-time because there would be questions about whether or not they could be classified as carers, but it would be good if the system was made more flexible. Many disabled people face enough problems as it is, whether from abuse or misinformation.

What Happens When Online Support Groups Are NOT Supportive?

March 10, 2009

At the same Facebook support group where I read the beautiful piece that I have shared with you in the post below, I read this:

Prevention:

Mothers can help prevent CP before and during pregnancy by adopting and maintaining healthy habits.
* Eat nutritious foods.
* Do not smoke.
* Avoid exposure to harmful substances such as methyl mercury and certain medications.
* See your health professional regularly

I immediately sent this email to the moderator of the group:

Hi

You are listed as the admin of the FB group “I have Cerebral Palsy. My Friend or Family Member Has CP.’

You have some very useful information on your group description, BUT I have to complain about this bit:

Prevention:
Mothers can help prevent CP before and during pregnancy by adopting and maintaining healthy habits.
* Eat nutritious foods.
* Do not smoke.
* Avoid exposure to harmful substances such as methyl mercury and certain medications.
* See your health professional regularly.

I have CP and I also have many friends who do, and from what I have heard none of our mothers could have done anything to prevent it-certainly nothing from that list. From what I know of CP the earliest it can happen is during birth-not pregnancy. I imagine that many mothers of young people with CP would find that information very very offensive and painful to read, and those who are not yet used to the idea of having a special child and who have come to your group looking for support would, I imagine, feel very guilty after reading that list.

I joined your group thinking that it was a support group- not a place where special mothers- the people who need support more than anyone else in a special child’s life- would be given completely false information or judged in such an unfair way for something they could not possibly have prevented.

I don’t know where you got the information from, but I request that you remove it from your group description as soon as possible. Thank you.

Some very important facts about Cerebral Palsy. As I have said in the email, from what I know of it the earliest it can start is during childbirth. It doesn’t start during pregnancy, so there is no way that it can be detected during pregnancy, and more importantly, there is nothing that can be done during pregnancy to prevent it.

The group is intended, as it’s name suggests, for people who have Cerebral Palsy and for friends and family members of people who have Cerebral Palsy. I wrote that email because if a support group like this one  provides members with such completely false information, any of these terrible things can happen:

1.   Mothers of children with CP could be made to feel guilty at the thought that they could somehow have prevented their child’s lifelong disability. This particularly applies, I think, to mothers whose disabled children are very young and who may not yet be used to having a child with a disability. These mothers may not yet know enough about the causes of CP to know how untrue the information is.  They may be experiencing perfectly natural feelings of confusion, which will only be made worse if they are provided with untrue information. Guilt and lies are the last things mothers of disabled children need.

2. Mothers of older children with CP who may have done any of those things during pregnancy, particularly if they did not know they were pregnant, could be made to feel that they are being unfairly judged by the provider of the information.

3.This false information may provide false hope to pregnant women who, believing it to be true, may take all of these precautions throughout pregnancy on the advice of a group like this one, and still end up having a child who is born with CP.

4 Family members of the child with CP may read this information, believe it and unfairly blame the child’s mother for somehow causing the child’s disability. This could affect relationships within the family- particularly between the child’s parents, or even between the mother and any able-bodied children she may have.

5. A child with CP who does not understand the causes of their disability may believe the untrue information and start to blame and resent their mother for somehow causing their disability. This will affect this most important relationship.

I have not yet received any response from the moderator of the support group, though I will keep you updated if I do get one. The information is still posted on the group page.I am still hoping that it will be removed.

Mothers of special children need all the support they can get- forever. Support groups like this one should check their information before posting it as fact. They should be supportive, not judgemental. CP cannot be prevented, any more than it can be cured. It is one of those terrible, unfortunate things that just happens.

Welcome To A Special Life

March 9, 2009

I found this at a support group. It was obviously meant to describe how it feels to be  the parent of a DisAbled person, but I think it  can also be used to describe the feelings of  DisAbled people themselves. So I would like to share it with you, my readers.

WELCOME TO HOLLAND

by Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

I hope you agree that Holland is just as beautiful as Italy!

Learning At Their Own Pace- Thanks To Mum

March 6, 2009

Any DisAbled child who wishes for a mainstream education instantly has my full support. Anyone who knows anything about Disability Rights knows all about the battles that these children and their parents constantly face. Today, though, I have learnt, thanks to Saera Carter, that DisAbled children and their parents can face just as much of a battle with the authorities when they wish for a special education which meets their needs, but is not usually provided by their local authority.

 

Two years ago, Ms Carter got funding from her local education authority in Buckinghamshire for a specialized primary school place for her son Joshua, who uses a wheelchair and crutches. He has a very rare condition, Glucose Transporter 1 Deficiency Syndrome, which was first thought to be Cerebral Palsy.

 

Now, this very special and inspirational mother has gone one step further. She has persuaded her local education authority to set up a whole new unit so that Joshua, now 14, and three of his friends can continue to use their specialized education system- known as Conductive Education- to access an appropriate secondary school curriculum.  In short, she has rewritten what’s on offer for her son, his friends and others who will use this education system in future. Thanks to her hard work, Joshua and his classmates are now enjoying their first year at this unit with familiar teachers from the Pace Centre in Aylesbury, where they spent their primary school years. The unit has been built in free space at a local special school, Heritage House School in Chesham, where pupils have severe learning difficulties. Although the unit is separate from the school, the boys join in with school assemblies and events.

 

The Pace Centre did not previously provide secondary level education, and the Carters’ local special school heads agreed, after seeing Pace in action, that they could provide nothing similar. So Ms Carter pointed out to her local education authority that setting up a special Pace unit would be cheaper than funding boarding school places for Joshua and his friends. She says: Pace was willing to consider doing something at secondary level and we ended up spending two years talking together about how it could happen. The big question was finding the right place. Pace could see the possibilities but they didn’t want the wrong environment.

 

Eventually an education officer within the authority- for whom Ms Carter has nothing but praise – supported her in her battle. With his support, the authority agreed to build the unit. And, says Ms Carter, once the decision was made everything got sorted out.

 

However, this is not a perfect solution. Joshua and his three friends have better cognitive abilities than most of the pupils at the main school. They are also more physically disabled than most of them. But Suzanne Pennington, the school’s head, says: These boys are part of our community, they join us for assembly and lunch, and we have a good working relationship with Pace. We share the same basic positive philosophy. It’s great partnership working, creative and mutually beneficial.

 

The education authority is also happy. Janet Sparrow, divisional manager for access and inclusion. says that it is a positive example of partnership between the maintained and private sector – and that the feedback has been good.

The Conductive Education system meets the boys’ physical needs as well as their educational ones. They are helped to move daily and to prevent deterioration in muscle tone and functional abilities.  They face many new challenges, and independence is always encouraged.  Laura Routledge, a Pace physiotherapist, says the emphasis in the unit is always on what we can do, not what we can’t. Nor do we talk about disability.

The school environment is hilly, so it challenges the boys’ physical abilities. And, because Pace doesn’t have a secondary curriculum yet, Ms Carter says: We aren’t picking up a programme and following it blindly. We’re creating our own, and it’s a lot of work for all the staff.

 

Ms Carter hopes that the boys will be able to stay at Heritage House until the age of 19. The school is now an official supplier of Conductive Education.

 

And she faces another challenge- to persuade special boarding schools to use a Pace-style routine, so that the boys can start to go away from home for short periods of time to improve their independence.

 

I’m truly inspired by this story, which just proves what I’ve always known. Education Authorities should listen to parents more often, because they know better than anyone what’s best for their own children.   

 

This post is part of the Inclusion Rules! debate at Same Difference.

State Help For DisAbled Children A Disgrace

March 3, 2009

This is a guest post by Rumbold, who is a regular contributor to Pickled Politics, where this was originally posted today. Thanks to Rumbold.

Given that there are around 770,000 disabled children in Britain, you would think that we would have a competent system for dealing with them. Yet an article on the weekend highlighted not only the massive amounts of bureaucracy involved, but also the inadequate care which many disabled children and their parents receive:

“To apply for appropriate benefits, you have to fill out 10 different forms containing 1,194 questions, spread out over 319 pages. Many families rely on these benefits, as regular employment when you have a disabled child is made practically impossible by the multiplicity of appointments. It’s also extremely difficult to find childcare. I couldn’t use a childminder for my daughter, as she needed a fully accessible home.”

Now, I don’t think that this problem emerged under this particular government. Previous Conservative and Labour governments have not shown themselves to be any more competent in establishing a system that meets the needs of most children. Nor is there a perfect way of doing things, as you do need safeguards to ensure that only those entitled to the help should get it. But this level of bureaucracy is unacceptable, especially as it does nothing to help the child. What we need are more carers for younger disabled children, more money for parents who work as carers, and more assisted living places for older children (16+). That would at least be a start.

Ivan Cameron’s Funeral To Take Place Today (Tuesday)

March 3, 2009

The funeral of six-year-old Ivan Cameron, eldest son of Conservative Party leader David Cameron and his wife, Samantha, is to take place today, Tuesday, 3rd March.

It will be a private service, open only to family and those who were closely involved in his life.

 

David and Samantha Cameron have expressed their thanks to well-wishers and the media for their respect and sensitivity following Ivan’s death.

The family have asked anyone considering sending flowers to instead make a donation to one of five charities: Mencap, Friends of St Mary’s Hospital, Paddington, Friends of Jack Tizard School, Helen & Douglas House, Twickenham, and Shooting Star children’s hospice.

Once again, my thoughts are with the Cameron family on this extremely difficult and painful day in their lives.

Soap’s First Blind Actress Joins ITV’s Emmerdale

March 3, 2009

I’m very pleased to read reports tonight on MSN and BBC Ouch that ITV’s long running soap Emmerdale has signed the first blind actress to be cast in a UK soap.

Kitty McGeever – who lost her sight through illness at the age of 33 – will play Lizzie Lakely, an old friend of Lisa Dingle’s (Jane Cox).

Speaking of her role, she said: “I’m thrilled to be joining Emmerdale as Lizzie and delighted that the show is challenging stereotypes in this way. Lizzie spells trouble from the word go and will be causing all kinds of strife in the village.”

Series producer Gavin Blyth commented: “Kitty is an extremely talented actress and I’m pleased that she will be joining the show, marking the arrival of such a fascinating character. Lizzie is forthright and fun and she’ll soon prove that she isn’t afraid to manipulate circumstances to her advantage.”

He added: “She’ll no doubt ruffle feathers and make friends in equal measure, and we are looking forward to embracing the opportunity to explore how the residents of Emmerdale react to that.”

McGeever is due to begin filming later this month and will first appear on screen in mid to late April.

Her previous acting credits include  London’s Burning.

I’d like, first of all, to thank ITV for taking what is a very unusual step- casting a DisAbled actor as a DisAbled character. This doesn’t happen often enough, but it definitely needs to happen more often.

Finally, of course, Kitty McGeever is a truly DisAbled person. Although I don’t watch Emmerdale, I wish her all the best for her new role.

Ivan Cameron Dies

February 25, 2009

Ivan Cameron, six-year-old son and eldest child of Conservative Party leader David Cameron and his wife, Samantha, has died. He was born with severe Cerebral Palsy and epilepsy.

No matter what I think of David Cameron as a politician, I agree with Prime Minister Gordon Brown, who led condolences, that   The death of a child is a loss no parent should have to bear.

As you may know, I have mild CP myself and so hearing of anyone dying from this disability always hits me hard.  My thoughts are with the Cameron family at this extremely difficult time.

May Ivan watch over them and fill their lives with good health, happiness and deserved success.

Don’t Blame It On The Children!

February 24, 2009

My mum and I are both deeply shocked and saddened by news reports tonight of DisAbled CBeebies presenter Cerrie Burnell. Despite already having had small roles in the mainstream TV institutions EastEnders, The Bill and Grange Hill, the BBC has received an unbelievably high number of formal complaints- nine- about Miss Burnell since she and her co-presenter Alex Winters took over the popular Do and Discover slot and The Bedtime Hour programme last month on the digital children’s channel.   But why? Simply because Miss Burnell was born with one arm!

 

What difference does that make? Any sensible person living in 21st century England would instantly ask. After reading her impressive list of previous TV roles, however small, anyone who knows anything about English TV would know that while she may not have one of her arms, she must be a talented actress! For the BBC to now give her a presenting job at CBeebies, she must also be a talented presenter. Right?

 

Maybe. But tonight’s news reports suggest that too many parents of CBeebies viewers are still living in 1984. The BBC has received complaints from parents that Miss Burnell is scaring toddlers and that she is not suitable to appear on the digital children’s channel. Some posts on the CBeebies website were so vicious that they had to be removed.

 

Incredibly, one father said he wanted to ban his daughter from watching the channel because he feared it would give her nightmares.  I don’t know what he would do to his daughter if she ever happened to see me walking! I wouldn’t mind giving him a nightmare myself!

 

 

Some even accused the BBC of hiring Miss Burnell, 29, because of ‘political correctness’ and solely to meet employment quotas.

One parent wrote: This new presenter is c***  –  face facts  –  but because she has a disability then she was given a job. [It is] positive discrimination in my books.

What is scary is the BBC’s determination to show “minorities” on CBeebies at every available opportunity! Said another comment.

Miss Burnell has shown her true DisAbilities in her responses to the blatant and very public discrimination campaign against her, by which, understandably, she admits to being upset. She says her critics are small minded and their remarks are terrible.

Responding to some parents, who said that they were forced to discuss difficult issues with their young children before they were ready, Miss Burnell said: It can only be a good thing that parents are using me as a chance to talk about disability with their children. It just goes to show how important it is to have positive disabled role models on CBeebies and television in general.

The BBC insists that Miss Burnell has also received messages of support. Interestingly, I could only find this one, which I completely agree with: I think it’s great the BBC have appointed Cerrie Burnell. The earlier children come into contact with disabilities the better. A friend of mine recently had a baby and was told that the baby’s right arm hadn’t developed. This child will join nursery and school like any other child but hopefully will suffer fewer taunts and stares thanks to the children having come across Cerrie.

Disability groups have defended Miss Burnell and the BBC.

John Knight, of charity Leonard Cheshire Disability, said: Disabled people experience disadvantage and discrimination like this every day, largely through ignorance. This needs to change.

Understanding disability all comes down to familiarity. The bottom line is that seeing disabled people on television should be the norm, not the exception.

Ian Macrae, Editor of Disability Now, said: The views of these parents are gob-smacking.

One of the points of having presenters like Cerrie front and centre is that, the more it happens, the less likely children are to grow up with these sorts of limiting and outmoded attitudes.

I sincerely thank the BBC for their support of Miss Burnell. I wish her all the best on and offscreen. She is truly DisAbled and will hopefully be inspiring, not scaring, many children for many years to come.  

Christopher Nolan Dies

February 24, 2009

Christopher Nolan, winner of the 1988 Whitbread prize for his debut novel, Under The Eye Of The Clock, the fictionalised story of his life with severe Cerebral Palsy, has died aged 43.

As well as the Whitbread, Nolan was also awarded the Medal of Excellence by the United Nations Society of Writers, and was named Person of the Year in Ireland in 1988.

His family said: Despite the severity of his cerebral palsy, Christy’s intellectual abilities were unimpaired and, loving words, he set out to become a writer.

From what I’ve read about him, he made me think of myself. He was a truly DisAbled inspiration. I think the worlds of literature and disability have both lost someone very special.

Having Dyspraxia

February 21, 2009

This is a guest post by Paul Burgin, who blogs about mainstream politics at Mars Hill. Thanks to Paul.

I was suspected of having dyspraxia at the age of six and diagnosed at the age of twenty-three. When I was diagnosed it cleared up a lot of concerns and problems I had had for nearly a lifetime.

For those who don’t know what it is, dyspraxia is a condition which affects the signals between the brain and the nervous system. This means that my sense of balance and attention span is slightly off-kilter as it were! I am fortunate in that my condition is in a mild form, but the fact remains that having dyspraxia can cause all kinds of professional and social problems, particually for those who are not diagnosed!

For me it is still something which I am nervous about discussing in public, especially because before I was diagnosed, I knew deep down there was something not quite right; for instance I knew I was fairly bright and had common sense, so why did I sometimes say and do idiotic things that seemed to be in contradiction of that! Plus my social skills were somewhat Rimmeresque to say the least! For the past decade I have had to learn to accept that the areas of my life where I feel insecure and have low self esteem come from situations which are not my fault, nor the fault of others. I have also had to learn to be less secretive in order to try and compensate for any perception that I was not fitting in, plus I have learnt to be less ashamed of making mistakes in day-to-day life, whether minor or not!

It would perhaps also explain that some of the traits of dyspraxia in some who have the condition are akin to some form of autism, which is how it seems to be in my situation, but that aspect, plus the lack of proper coordination, can lead to misunderstandings and social difficulties, especially lack of social awareness. Since I have been diagnosed my life has improved slightly in that I accept my limitations and try and work around them rather than try and overcome them, but it is hard and from what I have heard from other sufferers, I am one of the luckier ones.

But dyspraxia is not about victimhood. Many have gone to lead professionally and personally succesful lives. One friend of mine who has it in a mild form, is a successful freelance business consultant, and there are some famous examples as well. David Bailey is dyspraxic, as is Harry Potter star, Daniel Radcliffe, and the late Donald Dewar (Scotland’s first First Minister), is thought by some to have been dyspraxic. And it is people like that that give people like me an extra bit of hope.

So the fact is that many dyspraxics appear to be normal, albeit seen by some to be a bit strange, but the more that is known about it, the more understanding there will be. You can find out more about dyspraxia and what it means at http://www.dyspraxiafoundation.org.uk/ and at http://www.dyspraxiausa.org/. They will explain the condition more clearly than me in one of the areas where it is too close a subject as to render me somewhat inarticulate!

Sorry Seems To Be The Correct Answer

February 6, 2009

Tonight, I am wondering whether the BBC gives more importance to Britain’s Prime Ministers, or to tennis players. Why, you might well ask, and what on Earth does that question have to do with disability?

Well, I shouldn’t need to tell any of you that Carol Thatcher, who just happens to be the daughter of the former British Prime Minister Margaret Thatcher, was sacked from her job on the BBC’s One Show earlier this week for calling the black,  French tennis player Gael Monfils a ‘golliwog.’ She hasn’t apologised yet for this racism, but she has said that the remark was made in jest. It was also made off air, in a private conversation between Thatcher, the show’s presenters and some of the show’s guests.  Thatcher’s sacking was no big deal to me, until now.

This morning, I read that Jeremy Clarkson, presenter of the BBC’s Top Gear programme, has apologised for calling the British Prime Minister, Gordon Brown, a ‘one-eyed Scottish idiot.’  This completely unnecessary reference to the Prime Minister’s loss of sight in one eye after an accident as a teenager was made to journalists in Sydney, Australia, on record, while Clarkson was speaking about the economic crisis. Clarkson has, rightly, been heavily criticised for this remark by MPs, as well as by charities for blind people. However:

The BBC said it noted Clarkson’s apology for the comments and would be taking no further action.

So, now I am left wondering, why did the BBC sack Carol Thatcher for racism to a tennis player, when they chose to take no action at all against Jeremy Clarkson for making offensive remarks about the British Prime Minister’s DisAbility? Is it simply because Clarkson, unlike Thatcher, apologised for his comments? Does his apology suddenly make his unforgivable and extremely hurtful comments forgivable, less hurtful, or both? Does the BBC really care more for the feelings of a tennis player than it does for the feelings of our Prime Minister? Surely not.

Personally, I think it goes far deeper than that. You see, racism is a ‘normal’ form of offence. It is recognised. Everyone knows what it is called. Everyone also knows, and understands, that it is wrong, and most people know and understand how painful it is.

Disablism, however, is still so unrecognised that I wouldn’t be surprised, or blame you, if you have never heard the word in your life! I have only just remembered it myself. Most members of the mainstream don’t realise that disabled people are just as hurt and offended by cruel comments about their disabilities as any ethnic minority person is by a racist comment. They don’t realise that we have feelings too.

So the BBC  thinks it is perfectly all right to be outraged about a racist comment, made off the official record, and sack Ms Thatcher, because they recognise racism for what it is. Something unnecessary, hurtful and unforgivable. And I do think that they were perfectly right to sack Ms Thatcher, whether she was joking off air or not. 

But they also seem to think it is perfectly all right to admit, with hardly any fuss, that they are going to let Clarkson keep his job, even after he has made a disablist comment, on the official record, to journalists. Because they don’t recognise disablism for what it is. Something just as bad, just as unnecesary, just as unforgivable and most of all, just as hurtful, as racism. Something that deserves a punishment that is completely equal to that given to any racist person.

So personally, I think that if Carol Thatcher got the sack from the BBC, then so should Jeremy Clarkson. Being physically DisAbled myself, I  am sure that Gordon Brown agrees with me- not just as the Prime Minister of Britain, but also as a DisAbled person. I wonder if he will use his powers as Prime Minister to make the BBC sack Jeremy Clarkson? I know that I would.

 

Another Disabled Criminal

February 6, 2009

Usually I hate to single out disabilities. But the case of Malcolm Richards, 43, a blind paedophile, along with the case of George Hamilton, the blind shoplifter I featured here on Same Difference last year, has proved to me that blind men are not afraid to commit terrible crimes. If they were doing any other mainstream activity, I would have been supporting them all the way. But I hope we all agree that, blind or not, there is never any excuse for the crimes they have committed. They have put blind people- and all other disabled people, me included, to shame. If they wanted mainstream media attention, surely they could have found something positive to do in spite of their disabilities? And we wonder why the mainstream discriminate against disability…

Some Quick, Free, Well Deserved Publicity

January 23, 2009

Conservative MP Cheryl Gillian is seeking to have a Private Members Bill passed that will improve the way local authorities deal with autism.  A great idea that deserves support from anyone. She needs the support of 100 MPs before it can be passed. So, readers, please take some time to do anyhing you can to get your local MP to support this Bill. Thanks a lot!

American Dream, English Nightmare

January 23, 2009

I’ve said right from the start that President Obama’s election was a victory for all minorities, worldwide, and proof that anything is possible, in spite of anything. Being DisAbled, I was thrilled when he mentioned DisAbled people in his victory speech on election night. I was slightly less impressed when we failed to be included in his inauguration speech on Tuesday, however.

 

I soon cheered up about this after reading a post at the Uhad2bethere News Blog, which highlights President Obama’s main plans for Americans with DisAbilities. Obama has what look like great plans for his DisAbled people. First, and most importantly, Obama’s government are planning to sign and ratify the international Convention for the Rights of Persons with Disabilities, something that President Bush’s government, like our own, did not do. I am now going to list Obama’s main plans for Americans with DisAbilities, react to them and compare them with the plans that the UK government, who are still refusing to ratify the CRPD, have in store for their DisAbled people if and when they finally do so. We should all know by now that the UK government plan to modify the Convention if and when they ratify it.

 

So, Obama plans to provide Americans with disabilities with the educational opportunities they need to succeed.

 

Anyone who has ever been a DisAbled child in a British school, whether special or mainstream, will tell you how few of our schools ever really do that. If and when the UK government does ratify the CRPD, access to mainstream education for DisAbled children is one of the main areas they plan to modify. So even after the convention is ratified, our government doesn’t seem to be planning to improve our access to educational opportunities.

 

Obama also plans to end discrimination and promote equal opportunity for Americans with DisAbilities.

 

A great dream, but one that I, unfortunately, doubt will ever come true, either in America or in the UK. Obama’s government, and our own, can promote equal opportunities for the DisAbled all they like, but there is too much proof to mention that discrimination against us will never truly end. Maybe planning to reduce it would be more realistic?

 

Then, Obama plans to increase the employment rate of workers with disabilities.

 

This is something that, I have to admit, the UK government has been trying to do for a long time. So I can only wish Obama luck on that one.

 

Finally, Obama plans to support independent, community-based living for Americans with disabilities.

 

The CRPD includes the right to live in the community, but, on 30th March 2008, the Executive Director of Cerebral Palsy charity Scope, Andy Rickell, was concerned that the UK would opt out of several sections –  including… the right not to live in a residential home.

 

So, it seems that I was right. Even though we were not mentioned in his speech on Tuesday, President Obama’s election really is a victory for all American minorities, including the DisAbled. His plans for DisAbility laws even seem better than those of the British government. I only hope that he, unlike the British government, who keep delaying ratification of the CRPD, can keep his promises to his people. If he does, the American Dream will, really and truly, finally have come true.

 

This post is part of the Inclusion Rules! Debate at Same Difference.  

It’s The Historic Moment You’ve All Been Waiting For…

January 20, 2009

That’s right, readers, this is this blog’s 200th post! It has been growing and improving beyond my wildest dreams since June 2007. I thought I would take some time out on this historic day and use this, its 200th post, to send out a general, great big THANK YOU to all my fans, readers, commentors, guest posters and supporters. You have no idea how much your support means to me. This blog would be nowhere without you. Please keep coming back, and please remember that your comments and suggestions are always welcome!

A Long Way To Go

January 20, 2009

I spent a very interesting two hours today watching President Obama’s Inauguration. I came away very excited for the future of the world. His election is proof to minorities worldwide, I thought, that anything is possible, in spite of anything.

Then I came online, looking for something to blog about, and found this. England’s Disability Discrimination Act being ignored yet again, this time by train companies. This is absolutely terrible, and has proved to me that, while the American Dream may have finally truly come true, England still has a very long way to go before everyone here feels equal. Here, anything is possible, except Inclusion. Right now, I wish I lived in America.

The Dyslexia Hypothesis

January 19, 2009

Another excellent essay/guest post by Unity, for which, thanks. Originally posted today at Ministry of Truth. This post is part of the Is Dyslexia A DisAbility? debate at Same Difference.

 

To pick up the full background to this post, you’ll need to read this article of mine at Lib Con, and this response from Letters From A Tory, first…

…

Finished? Good, then we’ll move on.

…

…

There’s an common exercise that was widely used by English teachers back when I was at school, one which may well still be in widespread use.

In this exercise, you’re asked to imagine that your writing to a pen pal from a foreign culture, or maybe an alien; someone who, where ever you may have been told they we’re from, is completely unfamiliar with the society and culture in which you were born and lived your life. Next, you’re given or asked to think of a very mundane and routine task that people in your own society undertaken on a daily basis, something like making a cup of tea or tying your shoelaces, and what you have to do to complete the exercise is simply write a set of instructions explaining to your pen pal exactly how to carry out that task, instructions that they could then follow in order to perform the same task themselves, even though its something they’ve never, ever, done before.

That all sounds really simple, doesn’t it? And it is, until you try to do it.

Personally, I always liked the ’shoelaces’ version of this exercise, because it lends itself really well to a simple demonstration of just how difficult an exercise this really is. You can easily give a completed set of instructions written by one student to a different student and ask them to tie their shoelaces by following the instructions they’ve been given to the letter, with entirely predictable and often very amusing results, i.e. a complete and utter mess which nothing whatsoever like the neatly tied shoelace that the first student was trying to describe.

Aside from being a nice little exercise in structured writing, that exercise is intended to make a very important point about us and how we relate to the world we live in, a world in which we routinely carry out any number of complicated and hard-to-explain tasks, tasks we complete seemingly without much conscious effort and without ever considered just how complicated they really are.

Now, lets think about a task, and a skill, that most of us take entirely for granted.

Reading.

You’re doing it right now and I’m willing to bet that most of you have never given a moment’s thought to just how complicated an task you’re undertaking, and doing, without any real conscious effort.

Now try thinking abvout reading in terms of the ’shoelaces’ exercise.

To try and keep it simple, think about reading in terms of ’systems’ for the moment, discrete processes that your brain has to carry out in order for you to be able to read. Taking it as read that the eye takes in information about the world and what you see in front of you (even though that a complicated task in itself when you think in terms of everything the brain needs to coordinate in to focus on and scan the text you’re reading with your eye) you’ve then got to take the information that the eye sends to your brain (a picture), process it to extract the information you need (the symbols that make up letters and words) from all the other information in the picture, figure out which of those symbols are meaningful (i.e. one you can recognise as letters/words rather than meaningless marks and squiggles).

Once you’ve got some meaningful symbols to work with, you then have to decode them to find out kind of information those symbols convey and whether that any of that is meaningful, which means both figuring out which arrangements of symbols actually make recognisable words rather than unintelligible strings of random letters and whether the words in an order/sequence which make grammatical sense, converting all this information into a form that the brain recognises as language – and there are some very good reasons why we believe that, in order to do that task, the brain converts the visual information it receives into an internal representation of spoken language – at which point we can apply meaning to that information and actually understand what it says.

Most of us manage all that so rapidly and effortlessly that we wander through life without ever really thinking about just how complicated the process of reading is, in fact we’re barely even aware that it takes any real effort at all, unless we run into a word (or words) that we don’t understand in terms of their meaning and even then, as long as the word is written in the symbols we’re familar with as representing our own language, what we call the Latin alphabet, and the word is structured in terms of its arrangement of vowels and consonents, in accordance with the ordering rules of our own language, we can still ‘read’ the words; we can get as far as converting the symbols into an internal representation of the sounds of language (phonemes) and, give or take a bit of dodgy pronunciation, speaks the words, for all that we might have no idea what they actually mean. To really stump a native English speaker, you have to confront them with a language, such as Chinese, which uses a completely different set of symbols.

What I’m trying to explain here is simply that, for that reading may seem to be something we do almost effortless, as a neurological process its an extremely complex task and, as with any task, the more complex it is the more scope there is for something to go wrong somewhere in the process. Moreover errors occurring at different stages in the process will create very different types of flaws in what we can see here in world outside the brain; different errors occurring at different stages inthe process of reading will produce different ’symptoms’ and also, because we’re dealing a process and not a single task, errors in one stage of the process may easily give rise to even more errors later in the process, amplifying the effects of the original error. (We also know the brain has some pretty nifty error correction mechanisms its uses when we we read, otherwise we’d get stuck every time we ran across a simple typo – but that’s a story for a different time).

So, when LFAT complains that:

At best, dyslexia merely refers to a cluster of symptoms that the vast majority of, if not all poor readers demonstrate – speech problems, writing problems, slow processing etc.  The astonishing thing is that the BDA websites then goes on to list “possible difficulties” that those with dyslexia might show: “reading hesitantly, misreading (making understanding difficult), difficulty with sequences (e.g. getting dates in order), poor organisation or time management, difficulty organising thoughts clearly, erratic spelling.”

The neuroscientists’ immediately response will be, ‘Yes, but what of it. This is an extremely complex system we’re dealing with’.

LFAT would have you believe that, because its impossible (at present) to pin down dyslexia to a clearly defined pathology and set of symptoms, that supports the contention that it doesn’t exist. In reality, that ‘evidence’ merely supports the view that what we dealing with are problems affecting the development of an extremely complex system, one in which there are many different things which could go wrong.

In short, what makes dyslexia a specific condition, as distinct from other types of ‘reading difficulties’ is that its cause lies in the existence of flaws in the complex, underlying, neurological mechanism which enables to read.

This observation leads us to several difficult but inter-related questions, to one of the most intractable philosophical disputes in psychology, nature vs nurture, and a recent discovery that may go a long way towards settling that dispute and, also, to a political debate that succeeds in being both very contemporary and as old as the hills at the same time.

The main bone of contention is all this is, based on our current knowledge of dyslexia and the various diagnostic methods we have to hand, its extremely difficult to draw a clear dividing line between dyslexia and other ‘conditions’ that also result in the delayed acquisition of reading skills.

So, what kind of other ‘conditions’ are we talking about here? Well, certainly not the organic variety, the one’s that are caused by brain injuries, lesion and tumours or which form part of an obvious learning disability of the kind that adversely affect not only an individuals ability to read (and write) but their intelligence and their ability to function independently in the absence of a significant degree of external care and support. Most of those are very easily picked out from either a CAT or MRI scan or using a battery of intelligence and developmental tests in which the subject will, almost always, be found to exhibit uniformly low scores across all significant measures of intelligence and ability. No, what seems to bother many of the ‘dyslexia deniers’ is the existing diagnostic regimes apparent inability to reliably sift the sheep from the goats, the deserving from the undeserving, the kids who might genuinely have a neurological condition that inhibits or limits their capacity to acquire reading skills from those whose ‘condition’ can be traced back to their living and growing up in a home environment in which the only reading material on offer may be this week’s TV guide.

At various times this creates a degree of political antipathy towards the process by which dyslexia is commonly diagnosed.

Some on the left have a major problem with the fact that an individual’s home environment has, certainly in past, had a significant influence on whether a particular individual is diagnosed as having dyslexia or simply labelled as being ‘think’, ’slow’ or ‘educationally subnormal’ on the assumption that when a child has a stockbroker for a father, a teacher for a mother, and grows up in home environment that would put a small branch library to shame then any difficulties they have in reading must, obviously, be caused by something outside their control; while a child whose father is a labourer and mother a pub cleaner will automatically be thick, lazy or otherwise a product of, and failed by, their poor upbringing, regardless of whether dyslexia might actually be the underlying cause not only of their own problems but those of their parents.

So, some on the left contend, the diagnosis of dyslexia is prone to, and even riddled with, class-related biases and prejudice.

As for the right… well, LFAT provides a neat summary of the issues that most seem to tax ‘dyslexia-deniers’ on that side of the political divide:

The fact that, once diagnosed, children with dyslexia can get laptops, extra time in exams, extra help from teachers and all the rest of the package is an outrageous waste of taxpayers money and should be rechannelled into helping everyone learn to read properly in the first place.

See, not only are the kids who’re diagnosed with dyslexia being handed an unfair advantage by being given extra time in exams and additional teaching support by the bastards are paying for all this with my taxes as well, money that I could be spending on buying advantages for my own precious offspring if only the government weren’t stealing it out of my salary to give to the thickos…

That’s almost certainly (hopefully) an exaggeration of LFAT’s views, but its one, nevertheless, that’s creeping into the public debate surrounding dyslexia because its fits neatly with some people’s political beliefs about society, merit. privilege and the nature of the relationship between the individual, the family, society and the state. I doubt that I need elaborate any further on that point – you’re reading this on a blog and if you read blogs, generally, then you’ll know perfectly well what kind of attitudes and beliefs I’m referring to here.

None of that, of course, settles the question of whether dyslexia is a genuine neurological condition, but it does provide some useful additional context to the current debate and the motives of at least some of the participants in the wider debate, and this goes some considerable way to explaining the apparent popularity of Julian Elliott’s ideas in some quarters. It has to conceded that, in part, he makes a fair case in favour of the proposition that dyslexia may be over-diagnosed and used, by some as much as a palliative to quells the fears of some over-anxious parents but for all the superficial plausibility of his claim that dyslexia doesn’t exist there’s a gaping whole in his hypothesis which he fails to address.

Even if we allow the possibility that a child’s family background, home environment and other related environmental factors may account, more accurate, for some unspecified proportion of the current incidence of diagnosed dyslexia it remains a fact that there some children who learing to read an immense struggle even though they come from the kind of background which you expect should provide them with all the possible environmental advantages they could wish for and more. These kids come from good homes, have no family history of development delays of any kind, score very well on the battery of cognitive and other test used to assess their intelligence and intellectual capabilities and, on verbal and spatial tasks, perform as well if not better than they classmates. Some have even attended independent schools where the teaching of reading using synthetic phonics has remained the norm throughout, which rather knocks a hole in the claim that this alone is a universal panacea for ‘reading difficulties’ – and while we’ve got that one on the table its worth pointing out that there was rather more to the West Dunbartonshire experiment than just synthetic phonics…

Synthetic phonics, where children learn to sound out the single and combined sounds of letters, has been at the core of the scheme but it has not been the only factor. A 10-strand intervention was set up, featuring a team of specially trained teachers, focused assessment, extra time for reading in the curriculum, home support for parents and carers, and the fostering of a “literacy environment” in the community.

Anyone like to guess how much taxpayers money that little package of educational extras might have swallowed up?

Oh, and without wishing to sound like I’m nitpicking… errr, okay, so I am nitpicking…

… none of the research papers or reports on the West Dunbartonshire initiative appear to have been published in peer-reviewed journals and to get any of them, even in an electronic format, you have to e-mail the local authority and ask for a copy. Not even Strathclyde University, which is where the educational psychologist behind the West Dunbartonshire initiative, Tommy McKay, is a visiting professor, appear to have copies of any of the research available for download. So, while I hate to have to be the one to point this out, but given what we now know about the increasingly notorious Durham Fish Oil Study and its serious methodological shortcomings, I’d personally hold off on getting too enthusiastic about West Dunbartonshire until we see a few signs of the study being subjected to peer review and independent evaluation.

The lack of any evident peer review or independent evaluation of this initiative is a little troubling, given the claims made for the programmes efficacy, and it doesn’t help matters that some of the reported figures relating to this project don’t seem to add up.

One such figure, which made it into several newspapers, claims that around 50,000 children were assessed during the 10 year life of the programme which, if true, would indicate that the offical population figures for the number of children living in the area out by about 100%. Based on the official stats, in any given year the school/nursery age population of the area will be around 14,000 children and this, when you allow for the numbers of children entering and leaving the system each year over a ten year period gives an estimated total school population for life of the programme of about 25,000 – so while I can buy the idea that programme carried out 50,000 assessments by getting round the school population twice, there’s no way that 50,000 children were assessed because there were only around half that to assess in the first place.

Fair enough, that’s almost certainly going to be no more than a bad case of scientific illiteracy somewhere between the Council’s Press Office and the newspapers in which those figures appeared but in the absence of any peer reviewed write-ups to work with those kinds of overstatements will tend to place question marks, maybe unfairly, against the programme and make you wonder whether or not it really is its been cracked up to be.

We’re drifted away from the central question of whether or not dyslexia exists but for godd reasons, because what I hope you’ll have picked up here is the evidence being put forward in support of the contention that dyslexia doesn’t exist is a long way from being conclusive and that there’s a hell of lot more to teaching kids to read than a few arguments over the right choice of phonics system to use in schools.

Okay, let’s hit the homestretch by doing something that’s markedly absent from Julian Elliott’s opinions of dyslexia and LFAT’s arguments – some real science.

We should be clear at the outset that what I’m not going to do here is definitively prove that dyslexia exists – sorry but I don’t have the time, research grants, extensive pool of test subjects and high resolution MRI scanner I’d need to pull that one off.

No, what I’m going to do here is try something extremely radical by putting together a single hypothesis for dyslexia that will demonstrate that there is a neurological mechanism that underpins the condition, that accounts for the available evidence and, as a final party piece, also unifies the list of theories and hypotheses that have been proposed to explain dyslexia (which you can get quick overview of in this wikipedia article under the heading ‘scientific research‘). In the process you’re also going to get a crash course in evolutionary neuroscience, unlearn a couple of common myths about the nature of the human brain and discover that it does some very surprising things that, until recently, no one suspected that it was capable of, explain why synthetic phonics is pretty much the best approach we can take when it comes to teaching kids to read and blow a hole in the entire nature vs nurture debate big enough to seriously annoy everyone from Marxists to Educational Psychologists…

…and I may even throw in a gag or two in along the way.

Let’s start at the philosophical end of thing by tackling the roots great nature vs nurture dispute and explaining why dismissing genetics as a factor in dyslexia is not just a mistake but a sign of a near total failure to understand the the neurological processesand mechanisms that underpin not only learning but everything that makes us human beings.

Unless you’re got some serious wild religious notions about ‘god’ individually fashioning every single living thig on the planet then you should be fairly comfortable with the whole business of heredity and the idea that, through out genes, we inherit certain characteristic from our parents and, sometimes, even more distant ancestors. If you’ve got kids yourself, then you’ll know that just about the first thing most of you family and friends did on encountering your offspring for the first time was start speculating about which bits of the poor little mite’s appearance might of come from which parent or grandparent and who in the family the kids most resembles. Personally, I’m not the biggest fan of this kind of thing but then that’s because, when it comes to newborn babies, which is the time you have to put thing kind of thing the most, I reckon they all look like Winston Churchill.

That’s besides the point, which is simply that, at a basic level, the vast majority of people ‘get’ the idea of genetics and heredity and are entirely comfortable with the idea that at least some of our physical characteristics and traits. However, mention behavioural genetics, the suggestion that we may just have evolved certain heritable traits that might influence the way we behaviour, our personality and how perceive and interact with the world and other humans, of course, and its then that the objections come flying in.

Some people, particularly Marxists and ‘radical feminists’, really dislike the idea of behavioural genetics because it doesn’t fit very well with their ideological view that see human society and, by extension, humans as being almost infinately malleable in the face of external cultural and political influences, largely because  and whole idea of behavioural genetics suggests (to them) that some the characteristics they’d really like to change might be somehow fixed and immutable. Many other people think (wrongly) that the whole notion of behavioural genetics is somehow incompatible with concepts like free will and moral agency. and some people either believe that mind is somehow a separate thing or harbour religious notions about us possessing a soul, which leads them to believe that there’s no way that our genetic inheritence can influence the way we think and behave.

What all these people have in common, apart from their dislike of behavioural genetics, is that they really don’t understand what behavioural genetics is or what it tells us about… well, about us.

A quick word of warning here, if you’re the kind of person who thinks that the world and everything in it was created by god, especially in six days, then you may want to skip the next bit because we’re going to talk about evolution.

For everyone else, we’ll just take it as read that you’ve got the general gist of how evolution works in terms of accumulated changes over long periods resulting from random mutation and natural selection and barrel straight on to what evolutionary neuroscientists have been figuring out, fairly recently, about the realtionship be evolution, genetics and human behaviour, which goes a bit like this.

Making sense of the world around us, even at the most basic level of processing all the sensory information we have to deal with every second of the day is an extremely intensive task because there’s just so much information the brain needs to process – and if we don’t process that information very well and, at least, figure out which bits of information are much more important than others then the consequences can be pretty dire. Back in the days before civilisation – yes, cavemen always get a mention when you’re talking about evolutionary neuroscience, that’s just the rules – your distant ancestors might well have found the sight of butterfly utterly captivating, but if getting caught up in the beauty of the natural world meant not noticing the lion lurking in the long grass then your life expectancy was going to end up being much shorter than your attention span.

In all that, thinking your way through the world in a concious way, the way we assume we deal with the world around us, turns out to be not only an intensive task for the brain to undertake but also a relatively slow one, by the time you’ve taken a close look at the big tan object hurtling towards you, figured out that its a) a lion, b) hungry and c) heading directly for you… well, you should be able to figure out the rest.

So, over millions of years, the brain has evolved a number of ways of cheating and cutting down on the heavy overheads associated with thinking and conscious thought, developing hardwired systems that handle much of the basic information processing we have to do to make our way in the world without our even being aware that the brain is doing it. So, somewhere in the brain there’s a bit of internal circuitry whose job is simply to scan the constant stream of visual information the the brain gets from the eyes looking for lion-shaped objects and if spots something that looks like its fits the bill is starts sending out warning that trigger off various responses in other areas of the brain; the fight or flight reflex starts to kick in and pump adrenaline into the system in case we need to run for it, the areas which process our emotions get a message telling it that we really should be feeling a bit nervous and uneasy and, last of all in terms of speed,  the cumulative effect of all these other messages bleeds through into our conscious thought processes and we get the feeling the we really should be looking around to see just exactly what it is that’s making us feel so uneasy.

It turns out that what evolutionary neuroscientists are beginning to uncover is the fact the human brain has lots of the ‘black box’ processing systems – we call them black boxes because although we know information goes in and responses come out of them, quite what they do in between and how they process the information we don’t know, in fact we’re not even consciously aware that these systems are doing what they doing, they just do it anyway and we respond to their output, which we often refer to ‘gut instinct’ or ‘just having a feeling’, which is about all we can consciously make of the information they kick out.

Now, here’s the part that will really bake your noodle because alongside the obvious and, frankly, uncontroversial black box systems that we already uncovered, the ones that, for example, pick out recognisable object, symbols and patterns for visual information, there are other system which process information for us in some very surprising and unexpected areas… like when we’re making moral judgements and choices.

No, seriously, research has found that we have a system which, without our even being aware of it, processes basic information about situations in which we face moral choices and judgement and which tries to make some very basic decisions for us. It categorises the situation for us in terms of whether the choice we need to make, and the actions that follow, would be morally obligatory, permissible or forbidden and, having made its decision, it triggers the relevant emotional reponse to the situation, a response that ew then consciously attempt to rationalise in terms of the conscious thoughts and beliefs about morality. This system doesn’t exert absolute control over our moral choices, once we start trying to rationalise hoe we fell about the situation we also have the option of overriding the internal message in favour a choice that we’ve conciously reasoned out, but that system is there, nonetheless, prodding and prompting away in response to the information is receives from the outside world.

Now you’re probably wondering just how it does all that, or more to the point, how does this system know what kind of moral values we have, given that we’re not concious of what its doing and it appears to operate independently of our conscious thought processes. That’s a very good question, and one I’ll come to in a moment but before we get to that, its worth noting that a number of these black processing systems play a significant role in processing language, both from auditory input (the spoken word) and visual input (reading) and some of the processing that gets done automatically is what we’d consider pretty high level stuff, sorting out correctly formed words from meaningless noises or jumbles of letters and even processing language input for it grammatical structures – and if you know your linguistics, then yes, that is a neurological model (and partial validation) of Chomsky’s theories about universal grammar.

So, getting back to the morality black box, how does it know what our moral values are? Well, the answers obvious, it learns from the environmental input it receives from the society, culture and family into which we’re born and in which we grow up.

But, if you’ve been paying attention you’ll not that I said a little earlier that these are hardwired processing systems which derive from genetic information passed on from generation to generation, and if that the case, how can they hardwired (i.e. fixed and immutable) and yet cope with the many different moral outlooks that we find in different cultures and societies at the same time. Surely these systems can;t be both fixed and mutable at the same time.

Well, in fact they can, to some extent, and to understand why you’ll have to start by disposing of a couple of myths and misconception about the brain and how it works.

For example, you may think, as a matter of common knowledge and conventional wisdom, that we’re all born with all the brain cells (neurons) we’ll ever have and that that’s because the brain cannot grow new cells, certain not to replace one’s damaged or lost to injury, illness or rather too many heavy nights down the pub…

..and you’d be wrong because we’ve known for quite a while that there are two particular areas of the brain, the hippocampus and the denate gyrus, where we continue to create new brain cells not only after we’re born but right the way through into adulthood – and new evidence suggest this may also be occuring in other areas of the brain as well – and its damn good job that we do because the hippocampus, in particular, plays a key role in the formation and storage of memory, so if we did go on creating free neurons there then there’s every chance we’d all have the memory capacity of a goldfish, and where would be then.

You may also have got the idea that the brain somehow stops ‘developing’ in early childhood – at somewhere around two years of age. Give or take the hippocampus and dentate gyrus, what’s meant by the brain ceasing to develop at this stage in life is that it was thought that the internal structure and organisation of the brain became fixed at this point in time, but for losing a few neurons here, so the brain you’ve got once you hit two years old is everything you’ve got to work with for the rest of your life.

Again, its turns that that’s not quite true.

For one thing the development of the brain’s structure and organisation in the two years following birth is a bot more complicated than most people realise – for the first six months or so we actually develop many more neural connections that we’ll ever need after which we lose a large proportion of them, the one’s that prove to be redundent. If that’s all very new to you, then don’t worry about it. That the brain develops in this particular way is not that widely known or understood by the wider general public, outside of a few ‘groups’ where this information does crop up. If  you’ve got a child who has autism or has been evaluated for a possible autistic spectrum disorder then you may have run accross this information because the point at which the brain starts ditching redundent connections is about the same time that the first obvious indicators of autism become apparent, which has led some to propose that the two may be somehow associated.

(Whether they are or not is another matter but at least this suggestion makes sense, unlike the whole farrago over the MMR jab).

The other people, outside psychology, neuroscience and related disciplines, who tend of picked up on this aspect of neural development tend to the be the kind of over-anxious middle class parent who also think that putting a set of speaker on their bump while pregnant and blasting the little mite with Mozart and regaling them with readings from the collected works of Proust at the age of three months is giving their kid the best possible start in life and may even turn them into some of prodigy. If that’s you, then while exposing your kids to language early in life, by talking to them, is undoubtedly beneficial, the Proust is a bit excessive – stick to Winnie the Pooh and The Very Hungry Caterpiller, its works just as well and its damn sight more fun to read if you’re a parent.

Anyway, after what we’ve already learned about the business of creating new brain cell, you shouldn;t be too surprised to discover that the structure and organisation of the brain doesn’t actually stop developing at two years of age, well not all of it – but don’t feel too put out at having got that one wrong because this is all pretty new and, he way things are going, a discovery that looks set to alter our understanding of the human brain as fundamentally as relativity and quantum mechanics altered our understanding of the nature of the university. This is ‘big science’ in every sense of the word and it’s called ‘neuroplasticity‘.

Until fairly recently, it was widely thought, even by neuroscientists, that the structure and organisation of the lower brain and neocortex, the areas of the brain which deal, primarily, with learning and memory, became fixed and immutable during childhood, and again it turns out that this was wrong and that the structure and organisation of these areas of the brain not only continues to develop into adulthood, but that that this ongoing development is influenced and directed by the environmental stimuli that the brain receives from the outside world.

The answer to the age old argument about nature and nurture turns out to be both, and the interaction between the two are far more complex that anyone previously thought possible because when we’re learning then, at the same time, we’re also restructuring and reorganising our brain in the process.

This explains one of the big ‘puzzles’ about learning about learning itself because it explains how, and why, complex and information intensive skills, like reading, which we find difficult to master to begin with, will become, with enough time and practice, tasks we carry out without even thinking about or being consciously aware what we’re doing. The truth is thst once we’ve learned to read and mastered the skill to a pretty high level, then we’d don’t consciously think about the task of reading itself, we just point our eyes at the page and away we go, pausing only if we run across a word we don’t understand and for which we cannot nfer some kind of reasonable meaning from the context in which it appears in the text we’re reading.

How we achieve that particular feat has, in neurological terms, always been a bit of puzzle up until now. Before the discovery of neuroplasticity it was thought that it might all rely on the biochemical or bioelectrical connection stength between the neural connections used to carry out a particular task, so that the more you did that task, the stronger the connection became. The trouble is, we never did managed to find any significant evidence to support that theory and any other avenues we could think of, at the time, we hampered by the belief that the brain lost the capacity to alter its structure and organisation during childhood, ruling that out as a way of learning and attenuating skills that we would only begin to encounter and acquire after the point at which the structure of the brain became fixed.

Now we find that the key areas of the brain that we’re most concerned with don’t become fixed in the way we thought they did and that learning is also a process of ‘re-wiring’ the brain, altering its structure and organisation in response to environmental stimuli, the information we process in order or learn.

That explains, in neurological terms, how we learn to read and why a task, to begin with, takes a considerable amount of conscious thought  and effort, which is actually a rather slow and labourious way of doing things, becomes, over time, a skill we exercise with almost no effort at all.

It also explains how the genetically-derived ‘black box’ processing systems that take most of the effort out of everything from processing language to making moral choices, become set up for the primary language spoken in the household or cultural into which we’re born or primed with our culture’s moral values. what genetics provides are the basic, universal, processing systems but. up to the point at which we’re born, these systems are purely generic in their capabilities. The language system ‘knows’ how to decode auditory information and process it into imtelligible language, but what it doesn’t know, until we’re born, is exactly which language it will need to process. Only after we’re born and people start yabbering in our general direction, is the system configured for English, French, Hindi or Chinese and the parameters it needs to start processing language automatically are set by the information it gets from the external environment.

There – in full – is the neurological model that underpins Chomsky’s work.

As for the morality ‘black box’, same basic principle – genetics give us the core processing system, and the information we obtain about the nature of right and wrong we get from the external environment in which we live configures the system to spit out ‘instinctive’ responses that, more or less, fit in with the values pick up on and are we’re taught by those who surround us during our formative years.

And so, we come all the way back to dyslexia, for which we now have a viable neurological model that fits the available evidence, because we also have a viable neurological model for reading and for how we learn to read.

What we have are some genetic elements, the ‘black box’ systems that handle and speed up most the basic processing but which require additional information from the external environment in order for them to be configured for processing a particular language and, when it comes to reading, for the symbols and symbol arrangements that represent that language in a visual form. To read we’ve not only got to make use of those systems, but we’ve also got to build the neurla pathways and connections needed to join them all together in a manner which ensures that they operate as efficiently and effectively as possible, hard-wiring our brain for reading in the process.

Looked at as a system, and not just in terms of its individual components, which is what most of the existing theories which try to explain dyslexia attempt, we have an extremely complex system, and perhaps the best evidence of how complex that system is comes from very recent neuroimaging study which found that a native English speaker reading an English language text actually uses different areas of the brain while reading than those used by a native Chinese speaker reading a Chinese language text, which may sound a little odd as we’ve talking about universal language system, but makes perfect sense when you consider that we represent the English language, visually, using groups made up of only 52 basic symbols (allowing for upper and lower case) written horizontally on the page from left to right. Chinese, on the other hand, is written vertically and uses individual symbols, not groups, drawn from a lexicon which, in its unabridged form, runs to over 40,000 symbols although, in practice, a knowledge of 2,000 symbols is considered to amount to functional literacy while 6-7,000 would put you into the category of being well-educated. The obvious inference is that the differences observed in the neuroimaging study mirror the orthographic differences in the two languages, each of which places different information processing demands on the reader; a reader whose brain, as a native speaker of the language, is wired specifically to process that language.

What this leads us to is a clear prediction that there will two, and maybe three basic types of dyslexia.

One will be a genetic form which affects one or more of the ‘black box’ processing systems, causing it either to function inefficient or maybe even fail to function at all. This is the type that will prove largely intractable to conventional teaching methods an environmental interventions because the elements of these systems that a derived purely from genetic information cannot be ‘fixed’ or modified by the brain. This does not, however, mean that an individual with this type of dyslexia will not be able to read at all, rather the brain will attempt bypass the fault using the conscious abilities of the brain to compensate for the loss of function, much as those same abilities are used to enable us to read while we’re going through the process of learning to read.

For this type of dyslexia, educational interventions may be of some limited help – if nothing else you can teach various coping strategies to children with this type of organic problem and help them to find way to work around the difficulties they cannot fully overcome, but there’ll always be some degree of impairment in reading ability, even if, with hard work and effort, the overall impact on their life and prospects can be minimised as much as possible.

The second (and maybe third) type of dyslexia stems from delays and faults in the process of hardwiring the brain for reading – whether there are two distinct type of dyslexia here, or just one, depends on whether you consider the business of setting the parameters of the black box systems to be an intrinsic part of the general learning/hard-wiring process or a distinct component of the overall system in its own right – and this is where its gets interesting. You see, the key to making this hard-wiring work lies in the brain receiving the environmental stimuli it needs to make the process of building the relevant neural connections happen as it should, and this suggests that there are not one but two mechanisms that could delay or give rise to faults in this process.

One would be an organic, and probably genetic cause – which gives rise to delays in the rate at which the hard-wiring of the brain occurs, even though the individual receives the same degree of environmental stimuli that other children get, children who experience no significant problems when to learning.

The other, would be purely environmental – a lack of appropriate stimuli as would be found in families where reading is anything but the norm.

(And, of course, some kids may get a double-helping by having both the genes which cause an organic delay and a pretty crappy homelife to contend with).

Drawing a neat dividing line between the two types is, given where we are currently in terms of the limitations of neuroimaging and MRI scans) somewhere getting on for impossible, but we can a couple of useful predictions here.

One is that, regardless of whether the hold-up in hard-wiring the brain for reading is organic or environmental in its origins, both should respond to increasing the level of environmental stimulation and providing a better quality of stimulation. Educational interventions should work pretty well in these cases, and as there’s plenty of evidence to support that contention that the closer a written language maps to its phonemic characteristics the easier it is for a native speaker to learn (as is the case with Spanish and Italian), so should the use of synthetic phonics.

The other prediction we can make is the on that those seeking to sift the deserving from the undeserving really aren’t going to like at all, because while both the organic and environmental types of delay should respond to educational interventions – oh, and I should note that the delayed wiring hypothesis, of course, accounts for evidence of reading patterns and errors consistent with younger children in kids currently diagnosed as having dyslexia – they only way in which you can make a clear distinction between the two causal types is after the fact because you would expect that in those children where a general lack of support and appropriate stimuli is the sole cause of the problems you would somewhat more rapid progress once the interventions are in place that those who’re try to swim uphill against delays arising from an organic problem, but you can only assess that after the intervention has been put in place. While we might be able to argue, with a degree of confidence that if a child has a good home enviroment, attentive and supportive parents, and is putting the same effort as other kids in trying to learn to read, and still not making much headway, then we can be pretty sure that we’re looking at a kid with dyslexia, when it comes to kids who don’t get those same benefits its impossible to be sure whether the cause is purelly environmental or whether the environmental issues the child faces masks an underlying organic cause.

In that sense, the fact that we cannot pin down dyslexia to a single, uniform, set of symptoms evident in all children with the condition is less a problem and more a feature of the condition, and a useful one at that because, treated correctly, there is no justification whatsoever for writing a child off simply because they find learning to read a rather more difficult proposition that their classmates.

—

And that, dear reader, is how you do science.

When you run into a situation in which the some of the evidence seems not to support the current theory (or theories) then what you do is look at the evidence and formulate a new hypothesis, one that accounts for and explains the available evidence and makes predictions that can be tested experimentally.

Which is what (hopefully) I’ve done here…

What you don’t do, however, is simply give up and announce to the press that something doesn’t exist.

That’s just bad science.

Graham Stringer MP is right: dyslexia doesn’t exist and never has done

January 15, 2009

This is a guest post by Letters From A Tory. It was originally published on his blog, Letters From A Tory, today in response to Unity’s post below. It is part of the Is Dyslexia A DisAbility? debate at Same Difference. Thanks to Letters From A Tory.

Dear Unity,

For someone who prides themselves on well-researched and weighty blog posts on different topics, you really have let yourself down this time.  In response to Labour backbench MP Graham Stringer declaring that dyslexia was a “cruel fiction” that should be consigned to the “dustbin of history”, your post over at Liberap Conspiracy simply wittered on about a fairly irrelevant part of his comments and completely sidestepped the issue of the research evidence on the matter.  In this post (which I apologise to my regular readers for being a bit longer than usual), I will try to squeeze in as much information as possible to hopefully explain to you and everyone else why dyslexia in indeed a cruel fiction and never existed in the first place.

Let’s begin with Graham Stringer’s remarks.  In addition to the comments above, he believes that the reason many children cannot read and write properly is that the wrong teaching methods are used and that children should be taught to read and write by using a system called synthetic phonics.  Mr Stringer also highlighted the fact that millions of pounds were being wasted on specialist teaching for what he called a “false” condition: “The education establishment, rather than admit that their eclectic and incomplete methods for instruction are at fault, have invented a brain disorder called dyslexia.  To label children as dyslexic because they’re confused by poor teaching methods is wicked.” He then made reference to the 100% literacy rates in South Korea and Nicaragua, which you spent the vast majority of your post criticising instead of dealing with the evidence behind his claims.  I’m happy to assume that your criticisms, despite being superficial, are correct.

The root of Graham Stringer’s assertions are probably based in part on the now infamous Dispatches programme back in 2005, in which Professor Julian Elliott made a remarkable claim: dyslexia is impossible to define and test as a discrete condition, and it is therefore impossible to diagnose dyslexia at all.  After spending 30 years in this field, he pointed out that “nobody has been able to demonstrate scientifically that there is this subgroup of poor readers that should be termed dyslexic [and] dyslexia, as a term, is becoming meaningless.”  Professor Elliott thinks that dyslexia is simply another way of expressing reading difficulty.  I’ve read quite a bit of his primary research (which I’m guessing from your post that you haven’t) and it is fascinating work.  When analysing the mistakes that ‘dyslexics’ make, some crucial patterns emerge.  If, for example, you looked at the reading and writing errors made by a 7-year-old ‘dyslexic’ child, you would see that they bear a striking similarity to the reading and writing ability of a child one or two years younger than them who has no learning difficulties.  In effect, children who supposedly have dyslexia are simply working at a lower reading age than their peers.  This does not class as a learning difficulty and goes some way to supporting Graham Stringer’s remarks.

However, what I think needs to be looked at further are your comments on dyslexia.  You said: “Dyslexia is one of a number of related conditions, including dyspraxia, disgraphia, discalculia, for which there is a solid body of research evidence supporting their existence – PubMed list over 6,000 research papers and journal articles on dyslexia alone, with almost 600 more currently in review.”  Lots of research papers on a condition says NOTHING about whether a condition exists and I’m surprised that you think it does.  Professor Elliott’s point about dyslexia is that it cannot be defined in its own right, it merely describes a cluster of symptoms that essentially describe a poor reader.  This is no “solid body of research evidence” saying dyslexia exists because no-one knows how to define it.  As Professor Elliott points out, he has found around 20 to 30 different definitions of dyslexia.  As an example, the British Dyslexia Association (BDA) defines it thus:

“Dyslexia is a specific learning difficulty which mainly affects the development of literacy and language related skills. It is likely to be present at birth and to be lifelong in its effects. It is characterised by difficulties with phonological processing, rapid naming, working memory, processing speed, and the automatic development of skills that may not match up to an individual’s other cognitive abilities. It tends to be resistant to conventional teaching methods, but its effects can be mitigated by appropriately specific intervention, including the application of information technology and supportive counselling.” 

This is completely meaningless wishy-washy nonsense.  There is nothing discrete or testable in this definition, which is a direct result of the fact that no-one knows what dyslexia is.  At best, dyslexia merely refers to a cluster of symptoms that the vast majority of, if not all poor readers demonstrate – speech problems, writing problems, slow processing etc.  The astonishing thing is that the BDA websites then goes on to list “possible difficulties” that those with dyslexia might show: “reading hesitantly, misreading (making understanding difficult), difficulty with sequences (e.g. getting dates in order), poor organisation or time management, difficulty organising thoughts clearly, erratic spelling.”  What is this?  Hmmm?  Look at how absurd this is.  Even the BDA are completely unable to pin down what makes dyslexia different from other conditions, which speaks volumes.  The diagnostic tests that are used to catch dyslexia are even more comical.  They use a whole battery of cognitive tests, reading tests, writing tests etc, none of which are able to clearly identify dyslexia as a separate condition. 

The BDA and other organisations who support dyslexia as a condition say that it has a genetic basis which has been repeatedly identified and therefore dyslexia must exist.  Rubbish.  It has been known for years that reading difficulties can be passed on from parents to children and while children who have dyslexia may well have parents with dyslexia, this is simply the result of underlying reading problems being passed between generations and does nothing to confirm the existence of the condition itself.  There may be also neurological problems associated with dyslexia, but again this is widespread among children and adults with reading difficulties.  The use of coloured paper, coloured overlays and all the other accessories that go along with dyslexia have no scientific evidence supporting their use that I’m aware of and are merely another part of the dyslexia myth that people have created.  They may anecdotally help some children but nothing more.  The fact that, once diagnosed, children with dyslexia can get laptops, extra time in exams, extra help from teachers and all the rest of the package is an outrageous waste of taxpayers money and should be rechannelled into helping everyone learn to read properly in the first place.

On the subject of Graham Stringer’s claims that literacy problems can be eradicated by good teaching, he is absolutely correct.  The BDA’s suggestion that dyslexia is ”resistant to conventional teaching methods” is unbelievably crass and ignorant.  In Scotland, they have been running pilot studies using synthetic phonics for over ten years and the results are incredible.  You, the BDA and anyone else can jump to the defence of dyslexia all you want but the Scottish studies in several areas including West Dunbartonshire make you all look rather naive.  Through using synthetic phonics as a baseline in addition to catching reading problems very early in school and having a range of support mechanisms such as parental assistance, they have eradicated illiterary – it has effectively disappeared.  After a ten year research programme, the number of children leaving school at age 16 who were unable to read and write in one of the most deprived areas of Scotland was….  three.  Yes, three, and all of them got the extra help they needed after leaving school in any case.  Now if dyslexia really did affect the millions of people that the BDA claim it does, how is this possible?  In England where synthetic phonics is still lagging behind despite tacit government support, we have hundreds if not thousands of children leaving school in each LEA unable to read and write because the teaching is substandard, just like Graham Stringer said.  

The indisputable fact of the matter is this: it is impossible to define dyslexia as a discrete condition, no-one knows how to separate dyslexic children from other poor readers, no-one has designed a test to diagnose dyslexia, and if you cannot accurately define or diagnose something then it cannot be said to exist.  Graham Stringer’s remarks will surprise many people and to you they represent nothing more than a backbencher desperate for some publicity.  How very sad.  If you understood the research evidence on the subject, the conclusion that he reached is the only possible conclusion to reach.

Yours sincerely,

A.Tory

P.S. If you want to play the ‘my qualifications mean i know more than you’ game as you did in the comments section of your Liberal Conspiracy article, your Psychology degree looks a little weak relative to my Psychology degree plus Masters in Developmental Psychology plus spending months researching synthetic phonics and reading intervention programmes plus reading some of Professor Elliott’s research.

Dyslexia a ‘myth’? The Dorries Effect

January 15, 2009

This is a guest post by Unity, who usually blogs at Ministry of Truth and Liberal Conspiracy. It was originally posted yesterday at Liberal Conspiracy. It is part of the Is Dyslexia A DisAbility? debate at Same Difference.  Thanks to Unity.

It seems to one of the unwritten laws of British political life that if you’re unfortunate enough to be one of those nondescript backbenchers who’s name provokes only the question ‘who?’, if mentioned anywhere out the narrow confines of their own constituency, then the only reliable method you have of getting your name into the national press is by making a complete and utter arse of yourself:

 

A Labour MP has claimed dyslexia is a myth invented by education chiefs to cover up poor teaching methods.

 

Backbencher Graham Stringer, MP for Blackley, describes the condition as a “cruel fiction” that should be consigned to the “dustbin of history”.

 

He suggests children should instead be taught to read and write by using a system called synthetic phonics.

 

For the sake of clarity let’s call this phenomenon ‘The Dorries Effect’, which can defined as the outward manifestation of Dorries’ Law of Parliamentary Media Coverage:

 

The degree of media attention afforded to a backbench MP is proportional to their capacity for making public demonstrations of their own, deeply ingrained, ignorance.

 

So, how do we know when the Dorries Effect is in play?

 

Well, one of the clearest indicators to look for is an abject and manifestly absurd inability to provide accurate factual information, one prompted by the wholly mistaken belief that no one will ever bother checking your comments for accuracy, for example…

 

“If dyslexia really existed then countries as diverse as Nicaragua and South Korea would not have been able to achieve literacy rates of nearly 100%.

 

“There can be no rational reason why this ‘brain disorder’ is of epidemic proportions in Britain but does not appear in South Korea or Nicaragua.”

 

According to figures compiled by UNESCO’s Institute for Statistics, the adult literacy rate in South Korea is, indeed, given as 99%, but the corresponding figure for Nicaragua is only 80.1%. However, the plot thickens considerably when you look at UNESCO’s figure for adult literacy in the UK, which is also 99%…

 

But, hang on second, hasn’t it also been estimated that as many as 16% of the adult population of the UK may be functionally illiterate? Well, yes it has, and that tells you something very important about global literacy statistics, even those compiled by the United Nations.

 

There is no global standard method of assessing adult literacy rates. In the UK and across much of the developed world (Europe, North America, Japan, Australasia, etc.) such statistics can be, and typically are, obtained by means of testing a demographically representative, randomly selected sample of the UK’s adult population. Across much of the rest of the world, and particularly in the developing world, adult literacy statistics are predominately compiled using the simple, but deeply flawed, expedient of incorporating the following question on national census forms and in household surveys:

 

CAN YOU READ AND WRITE?

 

A question which UNESCO, in one of most glorious flurries of unmitigated pseudo-intellectual bullshit I’ve seen in many a long year, refers to as ‘the dichotomous variable’.

 

You’re all (mostly) intelligent folks, so I’m sure that I don’t need to explain all the methodological flaws inherent in that particular approach to assessing literacy, but from a statistical standpoint, the fact that this is the only method used in many countries places an important limitation on the scope of UNESCO’s data. In order to provide a fair assessment of global adult literacy rates, including a country by country breakdown, UNESCO has no option but to forget all about the kind of multi-dimensional assessment methodologies used in the developed world and the detailed information such assessments provide – looking not only at basic literacy but also functional literacy and a range of other relevant skills – and work to a standard common to all countries included in its statistical evaluations, which means working to the lowest common denominator.

 

In short, the question ‘CAN YOU READ AND WRITE?’; which, at best, could be considered to prove only that the individual completing the census form or survey can read and understand a single sentence consisting (n English) of five single syllable words and write one of two words, ‘YES’ or ‘NO’ – and that’s assuming the questionnaire doesn’t make use of a couple of tick boxes or ask the respondent to circle their answer. In reality we cannot even be sure of that because there’s no absolute method of verifying whether the survey respondent read the question themselves or got someone else to read it to them.

 

Buried underneath Stringer’s stellar display of wilful ignorance – he has a BSc in chemistry and has, therefore, no valid excuse for being so obviously ill-informed – there is a legitimate and important issue that does genuinely need to be debates.

 

In its defence, the charity Dyslexia Action, responded to Stringer’s comments by asserting not only that the condition is ‘very real’ but that it affects around 6 million people in the UK, 1 in 10 of the total population, a figure that is legitimately contestable and that does need to be opened up to scrutiny.

 

Dyslexia, is one of a number of related conditions, including dyspraxia, disgraphia, discalculia, for which there is a solid body of research evidence supporting their existence – PubMed list over 6,000 research papers and journal articles on dyslexia alone, with almost 600 more currently in review – of which our current knowledge and understanding is still very limited, despite the quantity of evidence we have to work with..

 

Together with autism/autistic spectrum disorder and ADD/ADHD, it belongs to a class of behavioural conditions which, the research evidence suggests, are, at least in part, neurological in origin and may well also have a genetic component. They are also conditions which, statistically, appear to be becoming increasing prevalent in the developed world – but even with all that research to work with there is still a hell of lot we don’t know or understand about these conditions.

 

We don’t know precisely what causes them or even whether we are looking at singular conditions with a defined cause or a series of very similar, and possibly related conditions, which have very different pathologies.

 

We don’t understand the underlying neurological or genetic mechanisms behind these conditions or even whether and to what extent genetics plays a part in their development.

 

We also don’t know for sure whether the apparent increase in the prevalence of these conditions over the last forty years evident in public health statistics is a real increase, i.e. more and more people are developing these conditions, or whether the observed increase is simply a function of improvements in diagnostic techniques and practices. And, as I noted earlier this week in commenting on a media splurge relating to a piece of newly published research into autism, which turned out to be considerably less interesting that may have been suggested by the coverage it received, we also cannot say for certain whether or not we may be overshooting the mark in diagnosing these conditions and, to some unspecified extent, unnecessarily medicalising certain traits and characteristics that are, in reality, well with the normal spectrum of human behaviour and intellectual performance. Factor in the wide-spread practice of disease-mongering, as pioneered by ‘Big Pharma’ and rapidly adopted by purveyors of unproven and unscientific woo (nutritionists, homoeopaths and an assortment of other ‘complementary and alternative therapists’) the world over, and what we have on our hands is a massive and extremely complex series of social, ethical, scientific, economic and political issues and a very important series of unanswered questions that need to be debated openly and honestly with due regard to the actual evidence we have to work with.

 

Sadly, what we too often get, in lieu of such debate, are the crass, pig-ignorant, solipsistic and semi-splentic outpourings of low-rent, attention-seeking, backbenchers, third-rate hacks – and yes that does mean you, Melanie Phillips, Amanda Platell and (feel free to add your your own selection of idiots to the list) and, of course, the daily part-work edition of the International Journal of Health Scares and Moral Panics, aka The Daily Mail.

 

Stringer’s casual disregard for trivial matters, like evidence and factual accuracy, is not the only obvious manifestation of the Dorries Effect evident in this particular story, as he also manages to deploy the careworn tactic of incorporating unfounded and wholly unsupported allegations of rent-seeking in his screed.

 

“It is time that the dyslexia industry was killed off and we recognised that there are well known methods for teaching everybody to read and write.”

 

In reality, we’d all be much better served by ‘killing off’ (figuratively speaking) our present crop of media-whoring backbenchers and electing many more people to public office of a kind who demonstrate due regard for the value and importance of applying rigorous intellectual standards to their work.

 

And so, Graham Stringer, Member of Parliament for the constituency of Manchester Blackley, may I extend my congratulations to you because, thus far, you are the Wanker of the Week!

Love Is Blind

January 15, 2009

A romance novel about a blind, middle aged widow. Star Gazing by Linda Gilliard has been shortlisted for the Romantic Novel of the Year award. I’d like to thank Linda Gilliard for creating a DisAbled  fictional protagonist. There aren’t enough of them around. I, for one, hope her book wins the award.

DisAbility Sport Calendar 2009

January 9, 2009

Here, for anyone who’s interested, is a calendar of all the main events in DisAbility Sport for 2009. Thanks to BBC Ouch.

A Disappointing Development

January 7, 2009

Anyone who read this post will  know how I felt last year about the UK government’s refusal to ratify the Convention on the Rights of Persons with Disabilities (CRPD.) Everything I wrote back in November is still true, so I won’t repeat myself. The government had said they were going to ratify the Convention by the end of December 2008. However, now they are saying that they have delayed ratification, and that this will now happen in Spring 2009. I would like to believe this, and to say ‘better late than never.’ And, of course, it will be better late than never if it helps even one person in any way when it is finally ratified. But I must admit that I am very disappointed that the government has delayed the ratification of what so many people see as a very important Convention. I only hope that they don’t find reasons to delay it again in the spring.

 

This post is part of the Inclusion Rules! debate at Same Difference.

Eleanor Simmonds, MBE

January 7, 2009

Well, well, well, she’s everywhere. Two gold medals at the Beijing Paralympics, the BBC Young Sports Personality of the year 2008, and now teenage swimming sensation Eleanor Simmonds has been given an MBE. Not surprisingly, she is the youngest ever person to recieve this honour.  She seems to have been thrown in at the deep end of the mainstream world! She has my best wishes, as always.

More DisAbility Sport

December 22, 2008

Jane Sowerby, a DisAbled skier, has won two silver medals in Colorado. She is an inspiration, this time for wanting to freeze in snow rather than for being DisAbled! Only joking. I wish her all the best, as always. But you certainly wouldn’t catch me skiiing!

DisAbility Sports Awards

December 19, 2008

Have a whole list of truly DisAbled winners. Congratulations to them all!

Blind Cricket Results

December 17, 2008

I’d like to congratulate England’s blind cricket team, who have beaten Australia to win the Ashes 3-0. That’s DisAbility at its best!

More DisAbility Friendly Christmas Present Suggestions

December 17, 2008

AbilityNet are back in the news. This time, I agree with them completely, and thank them very much. They have launched a range of toys suitable for children whose motor skills and dexterity are limited. Just in time for Christmas, too!

The toys are called Dream-Products and range from a collection of soft toys that sing songs and move in time to the music to a head-mounted controller for games consoles and battery-powered cars and boats.

There is also a range of arcade-style computer games that can be played using a single key or an external switch.

The soft toys – which cost just under £40 – are brought to life by using an external switch.

I totally agree with former special school headteacher, David Banes, who is now AbilityNet’s development director.  He says he hopes these toys will create a truly inclusive Christmas for disabled youngsters.

Assistant head teacher at the Willow Dene special school in South East London, Claire Barnes, says the soft toys are a welcome addition for the children in her nursery class because almost all of them can gain something from the responses the toys make when they hit the switch.

The computer game range includes PC titles Frogger, Whacka Monty Mole (which should appeal to those who like hitting things) and an “on rails” space shoot-em-up called Aurikon.

DisAbled children can now also access games consoles such as the PlayStation, with able-bodied players using the regular controls while they use the specially designed switches.

The Dream Gamer incorporates tilt switches into a baseball cap to provide a joystick-type interface for the Playstation. With the right adapter, it can also be used with other consoles.

And the same concept is behind the Dream Racer: a tilt of the head – up, down, left or right – will operate a remote-controlled model car or boat.

At around £160 for the Dream Racer (depending on which radio-controlled model is chosen) and £120 for the Dream Gamer, these are certainly not cheap options.

But for disabled children who have had to watch as friends and siblings enjoy the fun, there is now an alternative.

And that alternative is truly priceless. As I said about audiobooks, I wish that this range of toys had been invented years ago. Now that they are here, I’d like to encourage you to buy them for any DisAbled children you may have in your life. Accessible presents are for life- not just for Christmas. So if you know any DisAbled children, please allow them to feel included, this Christmas and always, by buying them toys that they can use. 

Guide Dog Owner Refused Entry Into Indian Restaurant

December 17, 2008

Just for being a giude dog owner! The video of this story’s very much worth a watch. They point out, quite rightly of course, that this is illegal under the Disability Discrimination Act. And that the guide dog owner was welcome in the restaurant before he lost his eyesight! I’d just like to tell the owners of that restaurant to come back to this century! I hope they’ll never do anything so hurtful or so illegal to anyone again.

Congratulations Eleanor Simmonds!

December 14, 2008

Teenage Paralympic swimmer Eleanor Simmonds, who was born with dwarfism, became Britain’s youngest ever individual Paralympic gold medallist at the 2008 Paralympics in Beijing. Now, she has been rewarded for her amazing achievement with the BBC Young Sports Personality Of The Year Award. It is great to see a well and truly DisAbled person winning such a mainstream award. This is true progress and true inclusion. Of course, Eleanor Simmonds has my congratulations and best wishes in and out of the water.

The Authorities Are Right- For A Change!

December 12, 2008

Government ministers have finally admitted what I, and too many people I know, have been saying for too many years.

 

At last, an inquiry is being conducted into special needs education in England. Early findings suggest that parents feel the system is not on their side.

 

Inquiry chairman Brian Lamb has said some local authorities in England are not meeting their legal obligations.

 

Ministers accepted his concerns and announced a £38m package to raise expectations and give support.

 

Schools Secretary Ed Balls ordered an investigation to tackle “the failure of some local authorities to comply with their SEN [special educational needs] duties”.

 

In a letter to Mr Balls, Brian Lamb said: no-one discussed with parents what their hopes and aspirations were for their children.

 

I’d just like to say that I’ve always known that all of this was true twenty years ago, when my friends and I were in school. This might give you some idea of what Local Education Authorities used to be like with Special Needs children. I thought things were better now, though, but the news of this  inquiry has shown me how wrong I was. What a shame that parents still feel this way.

 

At least now, though, Special Needs children and their parents have something that we didn’t have twenty years ago. Ed Balls is on their side. He has said that he agrees with Mr Lamb that the government needs to “act now to improve the outcomes for children with special needs and to increase parental confidence”.

 

“Every child should have the opportunity to reach their full potential, including those with special educational needs, but all too often parents tell us they have to fight the system to get what their children need,” said Mr Balls.

 

“I am determined that this will change. I see today as the start of a new and more ambitious vision for SEN. I want to eradicate the presumption that mediocre achievement is the best this group of pupils can hope for.

 

I agree with every word.

 

Of the £38m promised to boost SEN provision, £31m would be spent on a pilot project involving 10 local authorities.

 

The scheme would aim to get all schools to rethink their expectations for children with SEN and develop approaches to focus more on their outcomes, he said.

The remaining £7m would be used to support pupils in schools and to boost leadership.

 

The Lamb review also said there was “a failure to consider SEN and disability issues in some mainstream policies and programmes”.

 

Leading disability charities have welcomed the inquiry.  The chief executive of The National Autistic Society, Mark Lever, said: “We hear day in day out from families affected by autism who have to go through lengthy and stressful battles to get the education support for their children which should be theirs by right.

 

Too many families we work with find that they are unable to access the support and information that they are entitled to, so we particularly pleased that the department will be investigating how local authorities and schools are complying with their legal responsibilities to children with special needs and disabilities.

 

Autism affects one in 100 children in the UK and the right support at the right time can make the world of difference to a child’s experience at school and their future outcomes.”

 

Jennifer Owen Adams, from the British Dyslexia Association, said: “Much more needs to be done to help parents and families with dyslexic children get the help their child requires. Recognition of this is just the first step.

 

We will continue to support the work of the Lamb inquiry and look forward to the report’s conclusions.”

 

The final report is due in September 2009. If it helps even one child to get appropriate Special Needs support and, as a result, to benefit fully from their education, then I think it will come on time.

This post is part of the Inclusion Rules! debate at Same Difference.

 

George Hamilton’s Back

December 12, 2008

This time, though, I feel very sorry for him. He was allowed to attend his mother’s funeral, but in handcuffs. There’s never any excuse for shoplifting, but I completely agree with his family that that was totally unnecessary, very far over the top and very disrespectful.

Mohamed Khatria Again

December 11, 2008

Anyone who followed the successful efforts of Mohamed Khatria, 18, to get guide dogs allowed into Mosques, featured here on Same Difference earlier this year, will be very interested in this interview with him, in which, I have to say, he talks a lot of sense. He has my support and best wishes, as always.

Two Left Feet

December 9, 2008

A female Christy Brown with an extra working foot, I think. My best wishes go to Jessica Cox,25, who has become the first woman to fly a plane using only her feet. You see, she was born without arms.

She is a Psychology graduate and can write, type, drive a car, brush her hair and talk on her phone simply using her feet.

Ms Cox, from Tuscon, Arizona, USA, is also a former dancer and double black belt in Tai Kwon-Do.

She’s truly a DisAbled inspiration who puts me to shame!

SailAbility

December 5, 2008

Brian Palmer, 74, a former boatbuider who is now DisAbled, helped set up SailAbility, a charity that helps DisAbled people to sail, in 1996. Now he’s been nominated for a BBC South Sports Award. He sounds amazing. Here’s hoping he wins!

Crackdown on Blue Badge Abusers

December 5, 2008

Great news.  About time, too.

Fun and DisAbility Friendly Christmas Present Suggestion

December 5, 2008

It can be difficult choosing the right present for anyone. So try choosing a present that can be enjoyed by a person who can’t see, so can’t watch TV or movies, and has to have books read to them because they can’t use their hands. The obvious answer would be music, right? That’s what I first thought of when considering a birthday present for a severely DisAbled friend.

Then my mum suggested an audiobook. An ordinary book, that’s also available on paper, read out, often word-for-word, on CD. Now, we’ve all heard of short story tapes for children, or those tapes that come with books of times tables or spellings. Reader’s Digest does a ‘talking book’ edition for those who can’t see to read it on paper. But I’ve never seen audiobooks in a bookshop before, so I had no idea that all kinds of paper books have now been recorded and are available to buy! What a great idea! I thought. Now, at last, my friend and all others in similar situations can access any book in the shops, without anyone having to read to them for hours at a time, and without feeling guilty that they are taking up other people’s time. For people who can’t access a book on paper for any reason, the audiobook has opened up worlds they might never have had access to without it. Hours of guilt-free, stress-free fun for those who really don’t get enough of it. A brilliant, DisAbility friendly invention. Personally, I wish audiobooks had been invented with the audio cassette, so that my friends could have accessed books all their lives. My Christmas present problems are solved forever…

But I do have one final thing to say, before anyone gets  the wrong idea. I realise that audiobooks won’t work for everyone, especially those who can’t hear.  And for myself, I can hear, but I prefer to read books on paper, since it’s possible. But everything can’t help everyone. After all, if we could and did all use audiobooks, who would ever read the good old-fashioned paperback any more? And if no one read printed books, writers couldn’t rightly be called writers any more, could they? But that  just opens up a whole new  can of worms!

Lenses Restore Teenager’s Sight

December 1, 2008

Kristian Cook, 14, from Wales, has regained his eyesight thanks to special contact lenses. He was sent to Moorfield’s Eye Hospital, London, where the special lenses were fitted,  after his mother joined an Internet self-help group for people affected by his rare eye condition, Keratoconus. Who ever says the Internet is just a waste of time? Kristian’s case proves to me just how useful it can be.

Kristian is homeschooled by his mum and has already passed GCSEs in Maths and Physics, and hopes to go to Cambridge University. He says:  They [the lenses] completely changed my life around. I could read and watch television, all the things you take for granted when you can see,”

“Before that, I couldn’t do anything at all really, I was basically blind.

Everything was turned completely round and now I can do everything I like.”

I wish him all the best in his education and for his lfe.

Same Difference Dresses Up For Christmas!

November 29, 2008

This year, I’ve decided to dress Same Difference in a new theme, Vermilion Christmas, for, well, Christmas! I hope you like the change! The Journalist will be back in the New Year, unless WordPress gives us something better by then!

Hilary Lister Relaunches Her Solo Sail Effort

November 28, 2008

I’ve been following Hilary Lister’s efforts to sail solo around Britain here on Same Difference for a long time. In August, I was very sorry to read that she decided to abandon her voyage. So I am thrilled to see today that she has decided to try again. She is truly a DisAbled inspiration. I wish her all the best for her second attempt next year, and in life.

Renee Zelwegger On Wheels

November 28, 2008

Exclusive newsflash! Renee Zelwegger, best known for her roles in mainstream Hollywood hits Chicago, Cold Mountain and Bridget Jones, has been spotted on wheels! She was filming for a new movie, due out next year,  called  My Own Love Song. Zelwegger will play Jane, a wheelchair-using singer. I refuse to use the phrase “wheelchair bound” because I totally agree with the Facebook user who asked BBC Ouch’s rudest columnist, DisAbility Bitch, who first posted the link to this news on her Facebook page:  why do people use the term wheelchair bound?  its not like i am tied to my wheely & cant get out.

I also totally agree with all those who are asking why the makers of this movie could not have used a DisAbled actress to fill this role. After all, there are plenty. Just ask Sasha Hardway. Although, I suppose, DisAbled viewers of movies will have to crawl before we walk! Maybe we’re a century too early for that much progress in Hollywood!

George Hamilton Again

November 27, 2008

George Hamilton, the blind shoplifter featured here on Same Difference last month, after he was banned from Edinburgh city centre, has struck again. This time, he has been caught stealing razor blades in Renfrewshire. He’s been jailed for 10 months.

A Special Movie

November 21, 2008

Special People is a new British film which released today. So why is it special? Well, it stars DisAbled actors, playing DisAbled characters. It has been described as ‘a milestone in mainstream cinema.’ That it certainly is, but I hope that most DisAbled people will  agree with me that it is about time that we achieved this milestone.

There has been, quite rightly, a lot of criticism of the film’s 12A rating and the warning that comes with it- that it contains ‘Disability Themes.’ Director Justin Edgar, who is hearing impaired, says this is bizarre.  You wouldn’t have the film censors saying ‘black themes’ for a Spike Lee film, he says.

The stars of Special People hope to inspire younger disabled people. It’s not even just to make them want to act,” says Sasha Hardway, 22. “It’s to make them feel better about themselves.”

The stars of Special People truly are special people. I wish all of them, and their movie, a lot of well-deserved success. Unfortunately, it’s not showing at my local cinema.

Mikey on the Ouch Podcast!

November 20, 2008

Mikey from Big Brother 9 was on November’s Ouch podcast talking about the DisAbility stories that have made the news this month. I read the transcript and found him hilarious! You can read the transcript or listen to the PodCast here. Enjoy!

The Authorities Are Always Wrong

November 14, 2008

Anyone with any interest in Disability Rights should know by now that the UK government is currently refusing to ratify the Convention on the Rights of Persons with Disabilities (CRPD). This is the first  international, legally binding human rights instrument to protect the rights of people with disabilities. According to BBC News, the government hopes to ratify the Convention by December 2008, but plans to modify its obligations in some areas, particularly the right of people with disabilities to access a mainstream education. With developing countries such as India, Bangladesh and South Africa on the growing list that have already ratified the CRPD, with no modifications, this is not good enough for Disability Rights campaigners in the UK- a country which claims to be developed.

Access to mainstream education has always been a struggle for disabled children and their parents. Richard Rieser is the director of Disability Equality in Education (DEE), a small non-governmental organisation that provides training, consultancy and resources to improve the position of disabled people in the education system. He has recently made the news for his efforts to convince the government to commit to improving facilities in mainstream schools by the year 2025, so that they can meet the needs of any disabled children who wish for a mainstream education, and, therefore, make more of an effort to practise what Disability Rights Campaigners call Inclusion.

On Sunday, 9th November 2008, DEE held a screening of one of their resources on Inclusive Education at the Tricycle Cinema in London. The short documentary, Developing Inclusive Education in South Africa, made by Richard Rieser and Ann Pugh, raises awareness of some of the steps that have been taken by the South African government to include their disabled children in mainstream education.

It was screened as part of a fundraising event, held in association with The Nihal Armstrong Trust, (NAT), a registered charity set up in 2004, in memory of my childhood friend, Nihal Armstrong. The Trust provides grants to the families of children aged 18 and under with Cerebral Palsy, for equipment and services to improve their lives, which local authorities are not able to provide.

NAT also screened a short documentary at the event on Sunday afternoon. Sarcastically titled The Authorities Are Always Right, the film by talented documentary maker Sapna Ramnani, who herself has Cerebral Palsy and is a great success story of an inclusive education, tells the story of Nihal Armstrong’s fight for a mainstream education from 1990 to 2001- a long, difficult and painful struggle which was eventually successful.

At the time when Nihal Armstrong, Sapna Ramnani and many others were fighting to be included into mainstream schools, there was no Convention to protect the rights of disabled people. Yet both of these extremely intelligent people deserved the success that they found in the mainstream education system.

There are many intelligent disabled children and young people today who could benefit a great deal from a ratified Convention protecting their right to access a mainstream education, as well as many other areas of mainstream society. The UK government protects the rights of many other minority groups very successfully. What is stopping them from protecting the rights of disabled people? This is the 21st century. The government, and mainstream society, has nothing to fear from us. To Disability Rights Campaigners, the government’s plans to allow more disabled MPs into Parliament seem pointless unless they can also protect the rights of ordinary disabled people by ratifying the CRPD. If ratifying the Convention will save even one intelligent disabled child the pain that Nihal Armstrong experienced, I think it would be well worthwhile. Just as Nihal Armstrong’s local authority were very wrong ever to question his ability to benefit from a mainstream education, the UK government are wrong today, in taking so long to ratify such an important Convention.

This post is part of the Inclusion Rules! debate at Same Difference.

I’m Suddenly Very Glad I Don’t Live In Australia

October 31, 2008

As some of you might know, I love Australian soap operas. But suddenly, I’m not sure that my affection extends to their government.

In spite of a critical doctor shortage, a German doctor has been refused permission to live permanently in Australia because his son has Down’s Syndrome.

Lukas, 13, failed health tests and was judged by officials as likely to be a permanent drain on taxpayer funding due to his condition. Yet Lukas is able to attend a normal school and play sports including cricket and football.

Doctor Bernhard Moeller says: “I think they just use my skills as long as it is necessary, but they don’t welcome my family.”  Today, he has promised to fight this decision.

Now I know why Australia took so long to get a Disability Discrimination Act. This case, together with that of Lucy Chapman and her family, who were refused entry to Canada because of Lucy’s DisAbilities, makes me very glad that I live in the UK, where such outdated attitudes are illegal. As I was when I read and blogged about Lucy Chapman, I am shocked and upset by the Moellers’ story. 

My Favourite Website Speaks My Language!

October 26, 2008

Last Tuesday, one of my favourite websites had a makeover. BBC Ouch has relaunched!

They’ve added loads of cool new wallpapers as part of their relaunch. I thought the word DisAbled was my invention, until I saw this:

Ouch says: The word DIS appears to have fallen off ABLED. But it’s okay, because there’s a figure heaving the broken term back together.

Personally, I would like to think that the figure is climbing up the word, and has pushed DIS away so that he can focus on his Abilities.

Of course, this amazing piece of art now has pride of place as my desktop wallpaper. You can download it here.

A Perfect Description of Life With A DisAbility

October 24, 2008

This is a guest post by Ala Abbas, who usually blogs at Between East and West, where this was originally posted on Wednesday, or Pickled Politics. I realise it’s not meant to have anything at all to do with DisAbility. I just thought it was a perfect description of life with one. Thanks to Ala.

This world wasn’t designed for all you quiet ones. You infamous introverts who have gained the limelight only for the sound of your deafening silence, and perhaps an accompanying sense of mystery. No one cares for you and scarcely acknowledges your existence, even when you make an occasional excursion into the outside world, squinting in the sun. No one cares if you discovered fire or invented the wheel first, you will never be acknowledged for your efforts. If you’re lucky you’ll be employed in innovative technology, but usually your social skills are only enough to get you an invisible technician’s job. You’re locked away from society, even though most of your thoughts are concerned with how to improve that godforsaken race of creatures. You are the nurturer of a child who is ungrateful to you and doesn’t like the look of your bottle bottom specs and pale skin. You are a genius, but no one will ever know, at least not until you’re dead. And as the world continues to spin on its axis of banality and incompetence, it is your humility and inability to tell a lie that prevents you from stepping in. An alien species almost, you must watch the world go by and only dream. You’re too good for this sick world, anyway.

Nothing About Us Without Us!

October 20, 2008

 

My friends over at the mainstream blog Liberal Conspiracy have been debating the Human Fertilisation and Embryology Bill for months. They were mostly concerned with the section of this potential new law that deals with abortion rights. This time, I’m more concerned with a new amendment that will, if passed when MPs vote on the Bill on Wednesday, allow tissue to be used from people who lack the “mental capacity” to give consent.

 

This list includes children, whose parents would be allowed to give consent on their behalf, but I am going to focus on what this means for people with learning disabilities, or for those who have developed diseases like Alzheimer’s.

 

The Bill has always been controversial, but from the start, its defenders have stressed the importance of gaining consent from anyone whose tissue will be used to form human/animal hybrid embryos. However, the possible amendment that has now been revealed throws doubt over their assurances.

 

Under the amendment, if a person was deemed unable to give consent their carer would make a decision on their behalf. If the person did not have a carer, researchers would nominate a person to make the judgment.

 

This amendment has already been agreed by 17 MPs who were in charge of finalizing the Bill. Apparently, though, this has been done without any debate or discussion in Parliament. This, at least, is some consolation for those who believe, like I do, that this amendment, if passed, will cross a fundamental line in medical ethics. Of course, it will also ignore the basic human right of those who lack, or lose, the intellectual ability to make decisions like these for themselves.

A counter-amendment, deleting the changes to consent, has been listed for the bill’s final debate on Wednesday, but campaigners fear it is unlikely to be discussed, as it is one of dozens vying to be chosen for the bill’s final debate before MPs vote.

Leading learning disability charities said they knew little about this amendment to the Bill, which has, not surprisingly, received very little publicity.

 Catherine Elliot, from the Medical Research Council, said research would “rarely” be carried out without consent, because under the amendment, ethics committees must be satisfied the same research could not have been carried out using tissue from patients who had granted permission.

However, if this amendment to the Bill is passed on Wednesday, it will not only sweep away 25 years of progress in medical ethics. It will also sweep away too many years of hard work by Disability Rights campaigners to convince the mainstream world that we are human, too, and that they should do Nothing About Us, Without Us. In my opinion, both of these consequences will be great tragedies. Tragedies which will be prevented simply by not passing this amendment. Unfortunately, I have no say in this Bill, but I will keep readers of Same Difference updated on the progress of this amendment.

Whatever Next?

October 6, 2008

A blind shoplifter has been banned from Edinburgh city centre until 2009. Well, I don’t ‘see’ any reason why a blind person can’t shoplift! He’s still human, after all!

Darnell’s Dating Advice

October 6, 2008

I’ve just read that Darnell was recently interviewed for the next BBC Ouch podcast, along with Mikey. In between questions, he gave dating advice to the guys at Ouch!

I’ll be posting a link to the interview when it’s up. As always, I wish both Darnell and Mikey all the best.

Update 13/10: Here’s the link to the podcast, as promised. Ouch have linked to Darnell’s MySpace page in there too!

Update On Mohamed Khatria

September 24, 2008

After seventeen-year-old Mohamed Khatria requested permission to take his guide dog, Vargo, to his local Mosque, the Shariah (Islamic Law) Council UK has now passed a law allowing guide dogs into Mosques. Good on Mr Khatria, who is now 18. A special thanks to barficulture.com, where I first heard this great news. And, of course, thank God. (No pun intended. I am Muslim.)

Naomi Hill’s Real Parent

September 24, 2008

Here is a link to the full statement given by Simon Hill, Naomi Hill’s loving father, yesterday, shortly after Joanne Hill, Naomi’s murderer, was found guilty of her murder. She is now in jail, where she belongs.

Mr Hill will grieve for his daughter for the rest of his life. He had no choice in this tragic twist of fate.  People with CP and their parents can take some consolation from this statement, which proves that Naomi Hill had one real parent. May she watch over him and fill the rest of his life with good health, deserved happiness and success.

Justice For Naomi Hill

September 23, 2008

Joanne Hill has been found guilty of the murder of her daughter, Naomi. Her excuse? She couldn’t cope with Naomi’s mild Cerebral Palsy. She’s been jailed for life. Next stop, Hell. This verdict should be celebrated by all loving mothers and their children.

How Should TV Treat Disability?

September 22, 2008

I never get tired of wondering about this. This is today’s question of the week in the Guardian. Some answers I agree with, some I don’t. Anyway, I’m linking the article here for those who are interested. Personally, I think that no TV programme should ever show any disability unless they have researched it thoroughly first. Oh, and unrealistic miraculous cures drive me mad! Less of them please.

Surely This Isn’t Legal?

September 18, 2008

In today’s episode of one of my favourite programmes, Out of The Blue, (yet another Australian soap, for those who haven’t heard of it) a happily pregnant couple at what they thought was a routine scan were told that their baby had such a serious genetic abnormality that there was no choice but to terminate the pregnancy.

I am, personally, strongly against abortion of any pregnancy. For obvious reasons, though, I’m particularly against the abortion of any pregnancy that could result in the birth of a disabled child.

Now, I’m left wondering whether it is actually legal to tell a couple that they have no choice but to abort their baby for the reason of severe genetic disability. Surely it isn’t in England?

I know that couples who find themselves in similar situations in England are given the option of having an abortion. Unfortunately, some choose this option. But surely, this should always be the parents’ decision to make?

Maybe Australian law is different to English law on this, though. I plan to research this soon, and will keep this blog updated. I might even write a more detailed post about it sometime soon.

Update: Details of my research into this are posted here, for anyone who is interested.

I Am Shocked

September 10, 2008

Readers, I am shocked by this article. There are mothers in this world who lose their children to CP and grieve for the rest of their lives… and then there are people like Joanne Hill. All I can say is that she belongs in Hell… far away from her husband’s guardian angel. I hope and pray that she never has another child. She doesn’t deserve to call herself a mother.

1984 Calls Monarch Airlines…

September 10, 2008

It seems Monarch Airlines have borrowed 1984’s attitudes to disability. They are up there with RyanAir on my list of airlines that I will never use.

DisAbility On Wheels

September 10, 2008

This time they are attached to cycles, not wheelchairs. My best wishes for the Paralympics go to Sarah and Barney Storey. Of course, they’ve also both made it here.

DisAbled Swimmers

September 8, 2008

All the best and instant tickets here for Eleanor Simmonds and Dave Roberts.

The Last American Freak Show Gets Shown… At Last!

September 5, 2008

In February this year, I blogged here about my great disappointment at BAFTA’s refusal to screen the documentary on DisAbility, The Last American Freak Show, produced by the DisAbled director, Richard Butchins. I was particularly disappointed when I read the real reason behind this refusal.

So I am thrilled after reading tonight that The Last American Freak Show is due to be screened at DaDaFest, a DisAbility Arts Festival in Liverpool, this weekend. I would just like to wish Richard Butchins all the best, and to link to the 13 Questions that BBC Ouch asked him this week to celebrate this achievement. I wish him  many more successful screenings.