Community participation: more than the same outing

‘Do you live here?’  

I was amused. The little boy asking the question was maybe five years old and he was looking at me seriously. We were in one of Perth’s major shopping centres and I’d stopped my wheelchair to retrieve my mobile from my bag.

‘No, I don’t,’ I said, grinning. ‘Why did you ask me that, kid?’

‘I always see the people in wheelchairs in the shopping centres,’ the little kid told me seriously, and the smile slid from my face.

Because it’s true. Go to any Westfield on a weekday and you’ll see us. We’re being pushed around by support workers or we’re sitting at the coffee shop in the same position that we sit every week.  

Sometimes you’ll see us in the lingerie section, even if we’re men, while our female workers browse through bras and panties. Or in groups of other disabled people who also have support workers. We’re usually milling around the shopping centres and we usually have a look of terminal boredom on our faces.

My mother was in that situation. She’d acquired a brain injury because of a medication error when she had cancer. The mini strokes were unnoticeable until the last big one and when she came out of the rehabilitation facility she was officially a disabled person. She couldn’t read well, she couldn’t cook or shower and she needed a support worker.  

Every Wednesday the support worker would take her to Westfield and she’d have a cup of coffee (by herself, with the support worker watching), do a little light grocery shopping (from the permitted items on her diabetes management plan) and perhaps buy a blouse that she would never get to wear again, unless it was to Westfield.

No wonder the little boy thought we lived here.

I understand why the shopping centres are populated by the disabled. They are air-conditioned. Accessible, with accessible toilets. If you have a support restriction placed upon your care – for example, my mother’s agency would only allow her to travel 9.5kms from her home – there are lots of them around. Unlike the day programs and recreation facilities, they are free. Most of all, they’re ‘in the community’ – even if you’re drinking coffee by yourself or being pushed around aimlessly with no human contact.

One of the biggest hopes for the NDIS is that this kind of practice will be eliminated and that disabled people will be able to ‘access the community’ in real ways.  We should be accessing employment and education and friends’ houses and shopping centres in the same way others do, for a purpose and as a citizen rather than a tourist in our own communities.  

I want us to be able to go bowling with friends on occasion, rather than every Thursday morning at 11am. To live with people we choose to live with and not be chosen to go on ‘outings’ in a white bus three times a week with the rest of the people at the group home. To have our interests accommodated instead of being forced together in congregate settings like day care programs because of limited imagination or a lack of regard for our humanity. 

I am looking forward to a day when individualised support assists us to be part of the world and when small children don’t think we live in shopping centres.  

Sam is a disability activist, consultant and social media assassin.  She spends far too much time working on disability issues and far too little time patting her bulldogs.  To connect with Sam, find her on Facebook.