I was struck yesterday about how the death of a young man, Henry Miller, on his gap year in South America made news headlines all day. LB didn’t get into national newspapers until nearly 8 months after he died. Funny really. You’d think a young man left to drown in a bath in an Assessment and Treatment Unit two years after the furore around the abuse uncovered at another Assessment and Treatment Unit, Winterbourne View, would be of national interest. As much as another curly topped young man dying unexpectedly abroad.
Nah. Learning disabled people don’t make headlines. It takes the likes of a Panorama documentary to generate headline news (and then, as we now know, the flames are fuelled by a wedgy of bargain firelighters, fizzling out before you can say ‘Jack squit’).
The label ‘learning disability’ too often strips away any consideration of being human for those who have no experience of being or living with a dude like LB. Including those who work in health and social care with dudes and their families. To below pet status.
A second ‘story’, this week, of three young children found dead in Malden has generated the usual shite coverage attached to these sorts of ‘happenings’ (we know nothing of what happened or why). This coverage again reveals the prejudice and entrenched beliefs of some journalists and editors. Barbara Ellen’s piece today is an example; littered with ‘plight’, ‘suffering’, ‘lone parent’, ‘the disabled’, ‘exhaustion’ and sweeping anecdotal statements. She ends with a call for others to do the anger and shouting on behalf of these “exhausted families”.
Eurgh.
‘Whatcha moaning about, Moaning Minny?’, some of you may be muttering. ‘She’s saying there ain’t enough resources for families…’
Nope. There ain’t. But couching this story in this way (abject misery, suffering and disempowerment) feeds and sustains a view that having a disabled child is shite. And, by default, the killing of the child/ren is a ‘different sort of killing’ because the ‘disabled child/ren’ (who is/are pushing these families to extremes) ain’t fully human. It’s simplistic, patronising, and completely ignorant.
I’m off to chat with Pat this week as she’s contributing to #107days. Another older parent, Shirley, left this comment here yesterday. Both women are in their 80’s and have dudes whose life experiences have been consistently challenging because of appalling (or non) provision of services. I don’t know if either would describe their experiences as “less of anger and more of terror”. And I wouldn’t want to make such a pronouncement in a national newspaper, based on anecdotes from my partner’s work.
I’d guess, from our experience and families we know, it would be more around despair, rage and bafflement that loved dudes (and others) are judged to be less than human. And treated as such. With no recognition or understanding of who they are, as people. And, as an outcome, a complete lack of appropriate support to help them lead fulfilling lives.
Stuffing these experiences into either ‘not worthy of news coverage’ or, in the rare incidents of parents (allegedly) killing their dudes, rushing for the ‘long suffering parent’ (and, by default, denying the children their humanity) angle, is shoddy, careless and ultimately dangerous.
mydaftlife 
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I didn’t find the Barbara Ellen piece that offensive – maybe I have just become immune to being patronised. It would have been more useful if the comments had been open, as it does occasionally give an opportunity to demonstrate that exhausted we may be, but perhaps not as heroically passive and long suffering as some would like us to be. I found this Guardian article a lot more of a problem, resurrecting as it does the idea that mothers are to blame.
http://www.theguardian.com/education/2014/apr/26/misused-neuroscience-defining-child-protection-policy
This bit, about one person’s attitudes to developmental disabilities, I found breathtakingly offensive
“They’re really nice people, the family nurse partners…. There’s one who talks about seeing the bus coming for the special needs children, and thinks, ‘If only we’d got to the mothers beforehand.'”
With attitudes like that from “really nice” health care professionals, there is a very long way to go to change attitudes.,.
But LB has made the headlines……it may have taken a while. Lay people have no idea what CQC is, my Mum and Dad have never heard of Winterbourne View and don’t know what an assessment and treatment unit is. It has taken a while for the ripples to touch us, but they have. LB’s story is being talked about with embarrassment and distress in all adult social work teams, I’m sure of it, and need to believe it to keep going.
I have long held the view that the constant changes of “title” for this disability have been counter productive to many peoples’ understanding of the condition.
“LEARNING” Disability as a description is open to many interpretations and in my opinion does nothing to inform about the many degrees of disabilty involved.
Just saying!
Agree totally eg only disabled people using wheel chairs have cerebral palsy?
Yes, absolutely. The labels or titles are actually pretty much meaningless if you don’t pay attention to the person. The label LD was slapped on my daughter when she was 18, as much because it was administratively convenient as meaningful. Since that time, her physical disabilities and epilepsy vanish from sight somehow. And I also have some difficulty in accepting that the challenging behaviour displayed by people with mental health problems is EXACTLY the same. My daughter’s behaviour is, generally, only out of control challenging when treated inappropriately by clueless people. There are similarities of distress, of course, but I still think it is faulty logic to have these blanket assumptions about what is needed or appropriate.
Oh how I agree with you.
An unrealistic label just for bureaucratic convenience which doesn’t even begin to describe the complex variety of many different conditions
I think that is why your blog is so important: showing us in a million small ways how LB was human and to be cherished like other children. It must be very hard, strange and distressing to parents to find that this needs to be established, especially in these horrible circumstances, but astonishingly, you have rolled up your sleeves and got on with the job yourself. By celebrating his life, you are keeping his humanity in focus. Many of us don’t have the privilege of knowing many people with learning disabilities very well, and it is easy to stand back rather timidly and think “well perhaps it is different for them”. It is often hard to understand other people’s lives, especially lives wrapped around by jargon. But you cannot read your blog without feeling as if you have met LB, or find yourself thinking “I wish I had met that young man”, and feeling a real sorrow for his loss.
“The label ‘learning disability’ too often strips away any consideration of being human for those who have no experience of being or living with a dude like LB. Including those who work in health and social care with dudes and their families. To below pet status.”
So true!!! I am totally fed up with attitudes of my family, friends and so called professionals to me let alone to my dude – they do not have a clue. I’ve thought for a long time now, how disabled people really are second class citizens, but you have really hit the nail on the head.