Blogging way more than I want to. That’s my measure that things are wrong. I wish they were more right and I could fuck off out of this space for more than a day.
Anyway. Big charities have been playing on my mind since LB died (and earlier). I had a bit of a pop at Mencap and The Challenging Behaviour Foundation a week or so ago for releasing a press release stating they were supporting us. We didn’t feel they were ‘supporting us as a family’. We discussed this with them and appreciate they are working to support our efforts for change and are working for broader change. Some issues around communication…
My sister, love her, emailed the NAS (among other organisations) last week. The way in which family, friends and others are doing things to help just makes me dissolve. Every time. She got some craphole, round the houses response, along the lines of ‘thanks for flagging this up’ loser.
This was duly tweeted (unfailingly) by #justiceforLB and eventually ‘acted upon’ with a tweet from the NAS saying that what happened to LB would be shared with their followers and friends. Not sure what the difference is between the two groups but suspect money may be a defining factor. #Allegedly
The big share from NAS turned out to be tweeting the link to our solicitor’s press release. Eh? Big commitment by a charity founded in the 1960’s by families of children with autism. No statement about the death of a young autistic dude in an NHS hospital? No engagement at all really.
The Tizard Centre, also love em, called on the NAS to show the 90 second video montage of LB at their conference this week. Silence. Of course. Then the CEO tweeted this, earlier tonight (the day before the conference);
Seriously? Bit late to ask this really. Shouldn’t this be a call to arms for a charity set up to support families and people with autism? A scandalous level of care in an NHS setting leading the death of an 18 year old young man. Isn’t this sending shock waves through the NAS?
If it isn’t, what the fuck do you do?
Update: Mark Lever mentioned LB in his speech and various NAS people have been in touch offering help.