Rich and I were talking on the bus to town earlier. Rich remarked how there was no ‘loss of potential future’ narrative in any discussion or coverage since LB died.There was no imagined future for LB. He’s not presented or seen as a young man ‘who hoped to become a mechanic’, ‘hoped to go to university to study x, y or z’ or ‘dreamed of running his own business’… He didn’t have an imagined future unlike many other young people who die unexpectedly.
We’re implicated in this. I was looking into a social enterprise gig because I strongly thought LB should work. But that effort was half arsed really in retrospect. I don’t think I fully appreciated his potential. I loved him to bits, loved his quirkiness, his special interests, his engagement, artwork and humour. But I don’t think I reaIly believed these talents, skills and abilities translated into ‘mainstream’ life in a meaningful way. I was trying to kickback against the only future that appeared to be open to him; “independent supported living”, whatever that meant, with budget bunfights, variable support and isolation.
Now, sadly, I clearly recognise what he was capable of, his exceptional talents and how much potential he had. The response to #107days underlines this. With support, encouragement and a more flexible society he could (should) have had a range of imagined futures. If we hadn’t been browbeaten into a position of expecting fuck all and dreading worse, we’d have been better placed to help him achieve these.
At the same time, I’ve noticed how spot on the champions from My Life My Choice have been in their response to what happened. They’ve cut through the crap, have no agenda other than to highlight how LB should never have died and tell it like it is.
So much so wrong. And so much blinking right that ain’t recognised.
We just need the right people in place my daughter works for The Body Shop 1.50 hours per week the best she can do and her PA works by her side to help her keeep to task and do her work otherwise she forgets where she has got to or might have a seizures or tonic clonic fit needing specialist support. She has done this for just over 10 years now The Body Shop acknoweledged her 10 years service recently with a letter and £200. I know this is exceptional but it should be the norm. We do not expect much for our dudes and we have to fight for what little is handed out we are grateful for whatever comes their way and ours we have learned (wrongly) to lower our expectations for them through lack of opportunity and choice despite the hype There are some great opportuniities out there but not enoughh signposting to these is limited due to few good Care Managers who know their job! Otherwise it is the same Day Service which frankly just ticks a box home and then TV for the rest of the day and evening. The Day Service may be paid for by the DP of the person attendeing and provided by the Care Provider ???? This is called personalisation and choice and ticks another box where was the choice Day Service or what else is there?lenty but some other oject might benefit from you DP and we prefer it this way Thank you very much!
NB Yes it is iniclusive too she has always been invited to The Body Shop Christmas Dinner and this has been paid for as has her PA’s always a special ocassion and why not?
Hurrah for the Body Shop!
Vicki, would you mind you posting something about your daughter’s job & employer to Drops of Brilliance? (http://107daysofaction.wordpress.com/2014/04/16/day-28-drops-of-brilliance-107days/) It’s just the sort of thing we are looking for. Thanks a million, Kara x
Rich has hit the nail on the head (again – #teamRich) and I so agree with your discussion here. We are brow-beaten into accepting our children as the recipients of care (such as it exists), and very little else. I hope in my Day 22 blog I gave a hint, at least, of the possibility of a valuable future for LB.
It is only since my son died that I have had – endless, ghastly – time to reflect on what we could/should have been doing for his future, rather than just dreading it and fighting with the wrong people for it, (the aspirationless blockers). Tragically, too late to have that headspace of course. Because many parents of children with very high needs are reduced to years of firefighting, it is very hard to build positive futures for and with our children. We end up taking what little is on offer and crossing fingers that it is ok, just to survive.
I think this is to dismiss supported living rather than regard it as a base; a starting point from which to build. I very much hope my daughter will benefit from, and contribute to, her independent home life whilst actively being supported in ‘work’ she would enjoy. For me her imagined future is about fulfilment of her skills, social interaction and growth and a meaningful role, albeit in a smaller world. We are very aware (and fearful) of what the future might hold for her but she, along with our other kids, has to have a life. We will be nightmare parents of course. Checking, popping in, suggesting…but…no change there. The alternative is her family being her only experience. That’s not normal. I want normal. I want the best normal for her.
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I wish nobody thought it necessary to put the oh-God dreaded inverted commas around words like work (and friends – http://markneary.blogspot.co.uk/2014/04/story-twenty-four-friends.html) when used in the context of LD dudes.
Fair enough if dudes were doing non-work, like, ooh, lemmesee, selling useless-but-mega-profitable PPI products? Or writing pathway plans to facilitate key deliverables? But dudes’ work is in the arena of the real – providing food, clothes, furniture, artworks – things that nourish, support and adorn body, soul and surroundings.
Real work, not ‘work’.
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