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?
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.