Why People With Learning DisAbilities Shouldn’t Have Children
A sister explains her views… comments very welcome below, as always. Part of the debate on DisAbility and Parenting.
When my little sister was a child in the 1960s, we never said to her that she was mentally handicapped; no one in our family would ever have considered doing so. One day, though, when she was about 10, she received a visit from a social worker, as she did occasionally, perhaps because my mother was receiving money from the council, and this person left my sister in tears. “She says I’m mentally handicapped,” said my sister, sobbing.
“What does that mean?” I asked, hoping the social worker had not said anything even more upsetting. “She says it means I can never get married and have children.”
My sister is now, like me, a woman of a certain age although, unlike me, she has never married. We are very close, although we live two hours apart. We speak on the phone at least once a day and recently she has begun to email me as well, with help from care workers. She is usually on my mind and never more so than last Thursday, when BBC2 transmitted a documentary called Emma and Ben, about a young couple with Down’s syndrome who are deciding whether or not to get married.
In the end, despite their obvious love and tenderness for each other, they decide against marriage, but they go through a lot of anguish along the way. One of Emma’s concerns is that she would not be able to cope with babies, although a care worker points out that getting married need not mean having children.
Even sadder than the fading of the couple’s dreams was, to me, Emma’s constant reflection on her predicament as someone with Down’s and on the limitations that she feels, which we, the viewers, come to understand a little. Anyone who has ever been close to such a situation, or to anyone like Emma or Ben, will be moved to tears by this film.
Its transmission coincides with a recent news story in Scotland about another young woman with a learning disability (LD) who very much wants to get married. Kerry Robertson, a pregnant girl of 17, fled with her fiancé from her home in Dunfermline to escape the powers of Fife social services. Local social workers made them cancel their church wedding in September, and all their plans for the flowers and the reception, on the grounds that Kerry lacks capacity, in the legal phrase, to understand the implications of getting married. They have also told Kerry they may take her baby away after birth because of her learning disability, in the baby’s interests.
All these things are unspeakably difficult. You don’t need much imagination to have some idea of the shock and misery of Kerry and her fiancé, or of Emma’s anguish or of my sister’s heartbreak. I myself have had so much experience of the frustrations and hardships — as well as the happiness and achievements — of people with learning disabilities that I can never think or write on this subject without intense feeling for those concerned. So it is with a heavy heart that I say I believe that, in most cases, it is probably a mistake for people with learning disabilities to marry and have children.
Every case and every person is different, of course, and in an ideal world everyone with LDs would have enough good and wise care workers to help them through all their choices in life. But this is not an ideal world, and in our real world, with its looming spending cuts, there are two glaring problems. One is the cost of care workers and another is the question of what happens to children born to a parent or parents who are intellectually impaired.
It is a point of principle in the disability lobby that all people with LDs have every right to have and to keep their children, and it is indeed a universal human right. I entirely sympathise with the underlying feeling, but I believe it is all too often wrong. A senior social work manager boasted to me once that his proudest professional achievement, in line with this rights-led and inclusive philosophy, was to facilitate the marriage of two people with LDs, one of them blind, who then had two babies.
When I asked what support they received, he said they needed 24-hour care, which involved three full-time trained workers on eight-hour shifts, with agency workers on top if anyone was sick. I hesitate even to try to put a cost on this.
Yet in the same organisation other people with LDs were having their modest care packages cut by hard-pressed councils, while countless others were getting no care at all, desperately though they needed it.
We live in a world of rationing and, with Britain’s frightening levels of debt, this is going to become ever harsher. Last week, for instance, the National Institute for Health and Clinical Excellence announced that liver cancer patients could not have a drug that might extend their lives, because it was too expensive; there are terrible choices to be made about the use of public money.
Even if money were no object, there is still the problem, with parents with LDs, of their children’s development. There is a growing body of evidence (across the entire population) that children whose homes are talk-poor, whose parents can’t or don’t communicate with them well and who can’t make careful plans and boundaries for them or help them with schoolwork, are children brought up to serious distress and exclusion.
It is hard enough to be an adequate parent with supposedly normal intelligence. For someone of very low intelligence it is even harder. That is presumably why so many — 50%-60% — of babies born to parents with LDs are taken away by social workers, a horrifying thing but arguably, in many cases, the least worst thing to do.
People with LDs who want children are said by their advocates in pressure groups to have “learning disabilities, not loving disabilities”. I think that avoids the issue. Love is not enough, although of course love is essential. Besides, a learning disability may in some cases involve emotional problems as well, including autism and challenging behaviour, which will make loving and consistent parenthood extremely difficult.
I hate to be someone who thinks social workers may be right, sometimes, in removing a child from parents with learning disabilities. I hate to be someone who thinks it is unwise and unfair to encourage people with LDs to have babies and I certainly wouldn’t attempt to stop anyone. But wishful thinking is sometimes at odds with a sense of responsibility, as I think Emma and Ben came to feel. There are some things in life that all the love you have cannot change and cannot make better.
Excuse me…I think you have the term learning disability confused with metal retardation. People with LD have average or above average intelligence. Albert Einstein had a learning disability! I have a learning disability and I have a Masters in Education with a 4.0GPA!
I have known people with learning disabilities who got married and had children and they turned out fine.
Just to clarify something for you jt. I did not write this article. It was written by the older sister of someone who has what the article writer describes as a learning disability. That’s her description, not mine.
Unfortunately I have had to edit your comment quite heavily. If you read the Same Difference comments policy, you will see that I do not allow swearwords or personal insults against anyone in comments on this site.
Id like to note that this is a particularly sensitive topic, but it captures a real account of the current difficulties to enable people with learning difficulties to lead fulfilling lives. Particularly with the care cuts due to the depth of recession. Thank you for publishing.
Hi,
As a proffessional currently working on a project to ensure that parents with a learning disability recieve equal treatment, oppotunities and the support they need to be good parents I found this quite disheartening to read.
I can however appreciate the sentiment – a learning disabled parent may well be heading for heartache if the proper support is not provided from pregnancy onwards.
What is clear is that people will form relationships and have sex when the opporunity arises – creating a taboo or applying a total lack of aspiration in this area merely serves to leave people ill prepared to keep themselves safe sexually.
In my experience, some people are able to be good parents – they should be supported to be exactly that. The needs of the child should always be paramount but it seems to me that the assumption is that parents with learning disabilities cannot be good parents rather than that they can, which I belive should be the case.
To remove a child on the basis that it “May” be detrimental in the long term seems self defeating – almost all studies show that removing a child “Definately” causes trauma for both parties.
Would a parent with learning disabilites feel any differently from me if my child was removed?
Re the first comment: The term learning disability covers quite a range of intellectual impairments and has a range of diifering definitions depending on where you look. The most accurate statement is that it is a label which can be applied to people to make it easier to plan services. The people it is applied to usually have developmental intelectual and cognitive impairment which will last their lifetime.
Aspergers and Autism are not learning disabilities – they are conditions or disorders – possibly better though of as learining differences.
ASC (Autistic Spectrum Conditions) may or may not be present in people who have “Learning Disabilities” but one is not an indicator of the other. Without having met Albert Einstien, I wouldn’t like to say which label we could apply to him.
It is no wonder there is such heartache and trauma for disabled parents when attitudes such as the one in the article are expressed so freely and so commonly. One might as well say that racist parents should be sterilised because it would be ‘better for all concerned’. In which case…my own sister who complained at her 12 week scan that, ‘All the other women there were pak*s’ might be considered unfit to have a child, though I do not say that she will do that bad a job. However, I certainly think that of the two of us, the sister with the Masters degree in Disability Studies, who babysat for local children as a teenager, did Child Development Studies at GCSE and gained numerous A* grades when these were still uncommon, and even a D pass at the subject she has a ‘learning disability’ in, might possibly do better than someone who would have to rely wholly on the skills of teachers with one degree and a years teacher training, because she herself did a degree that ranged far less widely.
Maybe a woman whose husband is also a professional trained to Masters level who went to one of the country’s top public schools and who is literate, articulate, financially , socially and emotionally responsible might be better fitted as a husband and father even to a wife with ‘learning disabilities’ who has supportive friends and contacts in every profession it is possible to get a higher degree in than an over confident, charming yet sexually irresponsible young man whose reaction to a minor difficulty like a wife working long hours is to cast about for solace elsewhere. Yes, I am somewhat emotionally damaged by a lifetime’s verbal abuse for perceived and actual differences, yes, holding down a full time job outside the home as well as managing motherhood, a brain tumour and cerebral palsy freelance journalism jobs and disability activism work might be a challenge, yes perhaps I would not be a ‘perfect’ mother or teach my child Mathematics to the same extent that I could teach him or her French, Latin, Disability Studies, Shakespeare, or history. I could however give any child a moral grounding that avoids bigotry, teach basic cooking and housekeeping skills, make them aware of cultural developments that are wider than those found on the evening news. I could ensure that my child learns early by example the evils of prejudice, the beauties of the English language and the possibilities of faith and Christianity. I would teach him or her that it is not what a person costs the taxpayer that defines their true worth, nor what they do for a living, worthwhile and necessary as employment may be, but the depth of their humanity and their willingness to give everything up , even their life, to protect another human sol.
I would teach them as I was never taught until it was too late, that every man and woman’s worth and choices if they must be measured by the standards of the culture he or she finds themselves in should at least be measured equally against the choices of all other men and women in that culture. Whatever the apparent costs of ‘people with learning disabilities’ or indeed ANY disabilities we should genuinely ask if we are sure what we are walling out when we deny a person the right to a future. If the right to have children is measured by intelligence then we should closely measure all for ‘intelligence’, not merely set arbitrary markers such as ‘learning disability’ which may be misinterpreted and judged lifelong because it was a useful marker that ensured some extra help with fractions and gained a mother some sympathy for her daughters struggles in areas that she herself did not excell in. Despite the fact that one daughter lacks morals, depth of feeling and knowledge even of basic childcare and may struggle to manage with a boorish, narrow husband who may leave HER costing the state far more in child support, because ‘disability’ is a more emotive subject than simple ignorance,it is the masters student who is discouraged, disbarred, and degraded as unfit to be a mother and the narrow minded racist with a mind no more than common who will be hailed as mother of a new generation. What price support for intelligent ‘learning disabled’ women?