or The Why of InCharge – Part One

This week we have been necessarily reminded, through some great advocates, that there are still institutions for people with disability in NSW. Yep. We’re rolling out the National Disability Insurance Scheme, but for example, there are still over 400 people living in Stockton Centre in the Hunter Valley. Have a look at the others. I know many people who would have the same ‘label’ as people living in these places, and quite probably similar impacts of their impairments. However, just a glance at my Facebook newsfeed this week wonderfully shows people in school, at rock concerts, working, coaching sport, volunteering…. How come we have both possibilities, so diametrically opposed, co-existing still?

Well I know there are lots of reasons and lots of research (fantastically ignored). But these are my thoughts about it.

Firstly that these experiences co-exist shows that it has nothing to do with any supposed objective description of a disability label that implicitly means that some people couldn’t possibly, while others possibly could. “Well he has complex needs” just doesn’t cut it because people with complex needs are, at this minute, also rocking out to Nine Inch Nails.

Today I thought about my younger years fascinated by, and researching in the area of geography.  ‘Disablement’ is partly a spatial process. By this I mean that space and place shape identity. Separation, isolation and segregation are spatial processes. Think about apartheid. Inherently a spatial process. Once people are separate we then establish norms which maintain division – boundaries between ‘us and them’, ‘same and other’, are produced. It means that people are deemed ‘in place’ when they are separate, and deemed out of place when they desire to be part of the everyday, the ordinary, the taken-for-granted that so many non-disabled people (me included) get to experience.

But also places become a lens through which we see people. So a centre like Stockton, itself radically shapes how we see the people in them. We end up thinking “well they must be in that place because they are so disabled and this is therefore the best place for them”. Meanwhile the dude rocking out to Nine Inch Nails is thought somehow to be less disabled.

Let me tell you a little story about how place matters. My older brother has very significant intellectual disability and doesn’t speak. You can look around this website and check out some videos of him. When he moved into his own home about 16 years ago, I was living with him for a bit. His garden started at the side of the house and wound around to the back. One day I was round the back and I could hear an unfamiliar voice in the front. I started wandering around to find a man asking my brother questions – I think he was lost. The guy hadn’t spotted yet that Math couldn’t speak and wasn’t answering! He was having a good old chin wag. It was really an incredible moment for me. I remember just standing and watching for a moment. I know that the place – a home in a street – communicated a role to that man and continued to be more powerful than the impact of a disability on his understanding and perspective.

Another little story. One day 4 of us were squashed up on Math’s couch together – him and me and 2 friends – lined up like cute little Kewpie dolls having fun.  Math’s support worker came through with a tradie and began to introduce us. The tradie was a guy who did all the odd jobs for Math’s disability service provider. He started ‘big waving’ to us and called out a sing-song “hello everyone!” as he slowed his voice down to speak with us. I was looking up at him thinking ‘we’re all lined up on this couch and he thinks we’re the ‘residents!’ I tell you we laughed until we cried after he left.

Space is a medium, a communicator of expectations. In small ways and big big ways.

There’s a history, in my family too, of the wounds of institutionalisation.

When he was 9, Matthew moved into a hostel which I think had about 15 other people with disabilities living there. I remember it as a big old hollow place with lots of dark wooden furniture, panelling and doors, wipe-down furniture that squeaked, heigh ceilings, and big foam shapes lying around. Lots of strange noises (Math’s noises weren’t strange to me. I knew what they meant even at that age). It had a smell to it. Urine, cleaning liquid, washing detergent …. it smelled like institution.

The group homes he lived in subsequently also had that smell sometimes. Do you know that smell? Well I guess I do. And I first smelled it then when I was 7 years old.

From ‘I need help (to keep my family going well)’ to institutional living. What kind of society makes this the solution to the issue being presented? Turns out pretty much every western country and turns out it’s a habit hundreds of years old.

Institutions come big and small. They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’. Or removed so much for “extra learning” that there is really no point in being there in the first place. They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on John’s inner-ness”.

We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So Math spent a life from 9 years old to when he was 26 years old, living, recreating and learning with other people with disabilities. Apart from us and people paid to be with him, he knew no other non-disabled people. Because he didn’t speak and because many others couldn’t, he really didn’t form relationships with anybody. He formed relationships with people who could speak – so his paid carers. But they came and went. Form attachment, disappear. This is the stuff that Math learned about relationships and trust. I call him our weekend brother because that’s when we would see him – weekends and some holidays.

Around 20 years ago my family started a group conversation about what was wrong with Matthew’s life. 16 years ago this eventuated in him moving into his own 3 bedroom place with my younger brother and I.

I think we are also plagued by the conjoining of 2 things: low expectations (fabulously, depressingly low) and seeing people only as they are. When someone has been institutionalised they become someone they are not. Or perhaps more that we don’t know, we can’t imagine who else they could be. We can’t see it. We have no experience of someone other than how they present themselves in a place that circumscribes their identity. And also that person has no experience of who they might become.

This was Matthew’s experience and we needed to take a leap of faith. To create something that we had no experience of. To act purely on imagination and vision.

Part 2 – the importance of possibility in change.