Mother Criticised For Raising Awareness Of Rett Syndrome By Filming Daughter
I’ve just read this. I’ve spent many years of my life trying to raise awareness of my own DisAbility, and others through this blog. So I can understand where this mother is coming from. I can’t see why she’s being criticised- the child she’s filming is her own. So she’s not hurting anyone. In fact she’s trying to help others in the same situation- something for which she should be praised. Your comments are very welcome, as always.
A mother from Croydon, in south London, who has been recording her young daughter’s pain from an incurable illness online has been criticised for her attempt to raise awareness of the condition.
Melody Ballard suffers from Rett Syndrome.
Her mother Karina said posting videos on the internet is her way of reaching out to parents of other children with the rare disease.
Same Difference 
I found her mother’s YouTube channel (it’s here) but the videos of Melody in pain seem to have been deleted — it’s mostly slideshows of Melody set to schmaltzy music, along with videos of her mother singing. But how many times has someone who is ill had a video made of them to show what their suffering is like? Sometimes it’s even been on TV (the 1993 documentary on ME featuring Lynn Gilderdale springs to mind, although she was able to consent to being filmed, which Melody probably isn’t). I saw some videos more recently of a young woman suffering with the effects of severe ME and I never saw a word of condemnation. I think some people have just got on a moral crusade who don’t know what they are talking about. (The young woman in the videos is a bit better now, by the way.)
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