Monday, July 21, 2014

The Right to Something Real

I'm reading a brochure at the moment. It's for a cluster house proposal, a purpose built congregate care facility for people with disability. In the literature, it has the title 'Better than a Nursing Home.'

I beg your pardon?

It's symptomatic of the way that we promote 'second best' as something desirable in the disability sector.

'Better than a Nursing Home'. You'll be more happy there than you would be in a nursing home or a hospice. The brochure goes on to talk about 'your happy family' - 'there is no build up of resentment towards you', it says. It's like those other brochures that talk about 'accommodation' and 'residential settings' and a 'home-like atmosphere'. Or becoming an 'intern' to learn 'vocational, work readiness, training and skills development'. Or being a 'participant' instead of an 'employee', in a place where you and the people supervise you have lunch in different lunch rooms. Wank words, weasel words, to convince us that something substandard is almost as good as something real.

You, my dear little disabled friend, can almost have a real life.

You can go and work for free in the name of 'participation'. You'll wash cars or shred paper or pack boxes or strip electrical cable. If your sheltered workshop is up on the lingo, you'll be working in a 'social enterprise' where you might be recycling something or working with other disabled people to do something worthwhile in the community. It's almost a real job, with no mention that you 'interns' or 'work experience participants' will be paid well under minimum wage, sometimes at less than a dollar an hour.

It's almost a real job, right? You'll be learning valuable skills and you can talk about that for forty years when you sit with the other 'guys' in the disabled-people only staffroom.

You can almost have a real home. Institutions, group homes, cluster villages, places which are 'purpose built' for your 'individual needs'. And we're proposing more and more of them every day, despite this new rhetoric about human rights and individualised service settings. Autistic? Try the 'Never-the-Less' farm, proposed by the 'Shouldering the Journey' Foundation and based on the poignantly named 'Bittersweet Farms' model in the US. It's a long way out of Brisbane, but hell, it will be quiet. Safe, and secure and 'far less challenging' than the real world. And, cocooned in your safety and your onsite one shop stop resources, you'll never get to do or see the things your peers are doing - it's hard to see through cottonwool.

What about a real education? Ah, a far trickier argument, because mainstream education often doesn't offer any support, so 'special' versus 'mainstream' is often not a choice at all. But have you ever seen a novel - as opposed to an information booklet - written in easy English? Fifty Shades of Grey for the Raunchy Middleaged Woman with an Intellectual Disability? What about those endless 'life skills programs', where you learn over and over again how to make a cup of tea but never how to pick up a bloke at a night club? How many years did they spend teaching you to tie your shoelaces, instead of buying you velcro fasteners and teaching you to dance?

Better than A Nursing Home. It's like your doctor telling you he won't treat your herpes, because it's better than syphilis. A car salesman telling you he'll sell you a bike, because it's better than walking. E-Harmony telling you that you need a platonic penpal, because it's better than a tub of Vaseline.

Why do we settle for second best? Why do we believe the myth that we are second class citizens? And when are we going to make it change?

Almost a real life. We deserve better.

"When I believe I can, then I acquire the ability to do it even if I didn't have it in the beginning" ~Gandhi

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