I was reminded today of the fear parents of dudes like LB have of the future. The constant fear of ‘what will happen when I’m no longer around to protect her or him?’ A terrible, terrible thing to live with. A clear indication that, despite historical change, shift towards ‘community’ living and the introduction of ‘personalisation’, ‘personal budgets’ and other policy prescriptions, life for learning disabled people, and their families, remains uncertain, pretty much shite and impoverished.
And, as we found out, sometimes dangerous.
This was further underlined by a woman in her 80’s I met recently who said she was kind of relieved her son’s cancer was ignored for so long (because he was learning disabled) until it was advanced. Can you imagine?
Can.you.imagine.any.mother.saying.that?
In amongst the positive support for #justiceforLB this week on twitter, a clinician (unnamed) got embroiled in a protracted debate around mortality and learning disabled people. His original point was to defend “the NHS”. Atrocity stories like LB’s death were unhelpful in the fight to protect this organisation for the better good of all (a typical middle class position that completely overlooks the sustained health inequalities that resolutely remain despite extensive evidence that they exist – yep, brain melt stuff). Doc Anon’s point seemed to be that learning disabled people die earlier anyway. They embark on an inevitable journey of (tiresome) co-morbidity, leading to early death. Get over it.
To cut about a billion tweets down to a sentence or two, there was robust rebuttal of his position supported by strong evidence to the contrary. I don’t think he really shifted on his thinking. And I don’t know how many other medics support his position. Explicitly or implicitly facilitating/colluding with the labelling of unexpected deaths of learning disabled people as ‘natural causes’. That is ‘deaths that don’t matter’, ‘deaths that don’t count’.
If you expect particular ‘types’ of people not to live as long as other, more valued, ‘mainstream’ people (and think it ain’t no bad thing), it becomes easier to sweep the former under the ‘let’s not bother with’ carpet.
And our dude (along with potentially countless others) was swept into this space last July.
mydaftlife 
I am heartbroken that someone could feel relief about cancer in a young person being ignored until it was too late because we live in a society in which there is no guarantee that young and vulnerable people will be valued nurtured and protected
Sent from my BlackBerry smartphone from Virgin Media
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From: mydaftlife
Date: Sun, 2 Mar 2014 01:04:57 +0000
To:
ReplyTo: mydaftlife
Subject: [New post] The fear, how and eugenics
sarasiobhan posted: “I was reminded today of the fear parents of dudes like LB have of the future. The constant fear of ‘what will happen when I’m no longer around to protect her or him?’ A terrible, terrible thing to live with. A clear indication that, despite historical cha”
Can you imagine even having the thought that you are pleased your learning disabled ‘child’ died before you. Yes horrific, but many mothers have this thought, even if a fleeting one, as you look into so called care provision. What a crock of shit that is, both experientially, morally and politically. As we know some mothers actually KILL their learning disabled child (then commit or attempt to commit suicide) due to their lack of support, lack of care given to them and in the knowledge that if they can’t get through their crap experience then how the heck is your cognitively impaired child. Thanks for posting this, as it is almost at the. Other end of your experiential position, yet politically the issues remain the same. We live in a society that lacks any care for our most vulnerable people – and yes, we are humans. Sometimes I wonder?
It isn’t a question of being “pleased” is it? More an attempt to deal with a horrible reality.
Most able-bodied people have a very skewed understanding of any form of disability – and limited imaginations, perhaps? I have lost count of the number of times I have heard people assert that if they were to become disabled they would not want to survive etc. on the assumption that life would cease to be worth living.
Not sure that labels help, because again people do not give a whole lot of thought to what makes life worth living. My daughter, like LB was, is full of zest and curiosity, loves and is loved, Life is as valuable to her as yours is to you. It is those who regard her life as less who lack humanity, who are stuck in narrow grooves. And yeah, it is terrifying.
I am saddened (but perhaps not surprised) that the evidence concerning premature deaths is dismissed by some people particularly when they are people in positions of power to provide or withhold health care. Yes people with learning disabilities do die earlier – the issue is why is this the case? The fact that the life expectancy of people with learning disabilities has increased over recent years suggests that many deaths were not an inevitable consequence of having a learning disability and might have more to do with a lack of access to timely and appropriate care. The fact that men and women with learning disabilities still die earlier than their non disabled peers means that we still have a lot to do to close this gap. It is not possible to guarantee equal rights to health since we all have different health potentials.but we should be able to ensure equality of access to quality health care. What we need to battle against is the indifference to the growing body of evidence that indicates many deaths of people with learning disabilities are premature and/ or avoidable.
This is terrifying and heartbreaking in equal measure. I am utterly horrified that a doctor could live with such an attitude – what the hell happened to the Hippocratic oath FFS? This has to change. How do we make it change?
Again, I agree with lots of the comments. I guess as a mother with a 27 year old learning disabled daughter who has some recent (in the last year) health concerns, that had she not been living at home I’m not too sure would have been dealt with. Largely due to the fact her lack of clarity in describing her symptoms (not her fault) and the fact that I have had to repeatedly go to the GP. She even said to me, when I asked about seeing a geneticist about her rare syndrome, ‘do you honestly think she would want to know her prognosis, she is after all an adult’ I was horrified quite frankly, at many levels. She’s an adult when they want her to be, and a small child when trying to communicate with me. We continue with this currently.
My dudes are now elderly dudes, youngest 64 oldest 85 years young so can Doctor Anon repeat that about lower life expectancy for learning disabled
I remember once a parent saying “my biggest fear is she won’t survive childhood, my worry is she will.” It’s the underlying fear we all carry as parents of disabled children when we are not around any more.
I understand her fear. I’m working on a post that tries to vocalise how I need to live at least one day longer than our daughter to always be her spokesperson and advocate. Of course none of what you wrote suprises me, the attitude many hold of ‘a life not worth living’ is what spurs me on as a mum and a blogger to change the attitudes of midwives and Drs, who start with the assumption that babies with an LD should be terminated swiftly. The Death by Indifference, Winterbourne, Disability hate crime.. it all weighs very heavily indeed.
Thank you all for such considered and impassioned responses to this. I’m too knackered right now to respond properly but will. It is an enormous issue. xxx