Gerroff the sofa

Stephen Sutton died a week ago. He was 19.  It was not unexpected. He had cancer but he wasn't defined by cancer. He wasn't sad that he was leaving the party early, he was just happy to have been invited at all.  He had a Sense of Tumour (har har): you can see that in his oxter on the left. Getting a tattoo was one of the 46 items on Sutton's bucket list of things-to-do before the clock ran out. One of Sutton's wishes was to host a disco which involved a lot of young people with cancer getting off their faces with drink and flashing lights and waving their prosthetic legs in the air. What's this-all to do with me?  Not a lot.  But it did remind me of The Boy's second job after leaving home & school 20 years ago. He elected to go work for the Centre for Independent Living CIL as part of a FÁS (An Foras Áiseanna Saothair) scheme. FÁS was Ireland's answer to the last 1980s recession - an agency for getting people back to work.  It grew and grew and the directors spent at least as much time, if not quite as much money, thinking up junkets with which to treat themselves and their wives as they did getting despondent youngsters off the sofa with a minimum-wage carrot. So FÁS was wound up three years ago and rebranded as SOLAS (An tSeirbhís Oideachais Leanúnaigh agus Scileanna) the directors of which are not dreaming up cunning plans for foreign travel. Every tuthree years, every state agency in the country gets renamed, rebranded or relaunched - the all-round winners are graphic designers and printers as boxes of letterhead and flyers gets recycled sent to landfill and more letterhead with a different logo gets printed.

Mais revenons-nous a nos moutons. When The Boy said he'd signed up with CIL, I said he was daft, that he wasn't a bleeding heart and so was completely unsuited to such work. I was completely wrong. It was partly because he wasn't a bleeding heart that TB was an asset. The core idea of CIL was to liberate differently-abled people from institutions and set them up in their own households in their own community.  It was partly driven by economics - keeping people in institutions with 24/7 care is budget-sappingly expensive whereas a rota of even 4 or 5 people on close to minimum wage is cheaper - but it also had a strong drive for social inclusion. You can't just park the difficult cases out of sight round the corner and forget about them. Well you can and we did for decades.  Before we set up an institution-based infrastructure, people with deficits as well as people with extra bits were held, and to a certain extent cherished, by the community. CIL found places for their "trainers" to rent and a group of 4 or 5 young "trainees" to provide the 24/7 care that was needed.  A nice conceit!  Each disabled person was the boss, telling the trainees what they required and ensuring that was achieved with care and attention and suitable manual-handling training. TB was assigned to the roster of a young chap with Duchenne muscular dystrophy DMD who, like Stephen Sutton, wasn't long for this world.  DMD was sharing a small house in Clontarf with a chap who had cerebral palsy who was also training a team of youngsters in care-and-attention. The joke in their home was that one of them moved too much and the other not enough.

TB and DMD decided that sitting at home waiting for the end was toooo boring, so let's go down the disco.  Loading up the wheel-chair at night; pushing it to the bus-stop; man-handling the kit onto the bus and getting in everyone's way; getting off the bus and more pushing . . . that was the investment but the deep pulse of the sub-woofers and the jangling lights and the booze and the women was the pay-off. Can you dance in a wheel-chair?  Haway te fuck wi' ye - of course you can dance in a wheelchair: that trainee can turn it so you almost puke your dinner.

TB did that for six months and then hitched off to Germany for the Summer.  When he came back he was assigned to a different trainer who was a bit older and not so much into wild parties. Early the next year, DMD died.  He was 24.  It was not unexpected. CIL forgot to tell TB so he missed the funeral.