We were speeding through the NDIS conference and I had a coffee in my hand, despite being a manual wheelchair user. My friend was towing me with her electric wheelchair and on this occasion I’d gone to the trouble of bringing a short length of rope – it can get wearing hanging onto someone else’s wheelchair for a full three days. And able bodied people were watching and smiling and making cute comments, because, after all, it’s not a usual thing to see two disabled people supporting each other, is it?
It’s not usual for them, but it’s usual for us.
I’d asked my friend to support me through the conference because it was literally the only type of help I needed back then. As a manual wheelchair user with muscular dystrophy, distances are a problem and the Brisbane Convention Centre is a behemoth of a building. There’s no way I’d be able to successfully navigate through it over a period of several days.
She has the specialist skills I needed, too. Not just the power chair, but the ability to notice when there’s a divot or bump in the pavement, or when we’re too close to the pavement. She’s her husband’s carer. He’s also a manual wheelchair user and hangs onto the back of her chair when he needs a tow over distance or to conserve energy – it’s only one of the ways she supports him.
The conference organiser was surprised when I’d told them my support worker was disabled.
‘She’s disabled – too?’ she asked, and I spent some time explaining that yes, we were two disabled women, that she had her own access requirements, that this is what we both needed. It took a while.
In the disability community, this kind of support is unremarkable. If you know anyone in the blind community, you’ll know that hand holding is de rigueur. Manual wheelchair users with blind friends routinely help each other, simultaneously. The wheelchair user navigates and the blind person pushes – it’s completely natural and doesn’t look out of place. In communities where disability is commonplace, supporting each other is a usual thing.
That’s why I was a little surprised that people found it strange that I would commit to ‘only employing disabled people’ with the support from my NDIS plan.
I had my plan approved some weeks ago, and it’s trickier than I expected. I’m self-managing with the help of a financial intermediary, Manage It, but the decision to go with ‘identified positions’ presented some challenges. I had to first work out whether I’d be discriminating (the Australian Human Rights Commission helped me with this) and then work out if I’d in fact be penalising people if they had to do additional reporting for their DSP, or whether they could earn a particular amount of money at all. Then there was the issue of support for my support person – would I be asking them to do things that they might need help with? There’s the issue of me supporting my support worker, too – how does it work if they need to be picked up and dropped off? There are a lot of things to think about.
But I now have a team of all disabled people who can help me with every aspect of my support. There’s a young woman living near my local shopping centre. She has an intellectual disability and can’t drive, but can push a shopping cart and load my car if I pick her up and drop her off. Another intellectually disabled friend helped me with a community art exhibition and I have a shortlist of disabled Scout leaders and Rover Scouts who can attend Scout camps with me to help set up tents and do the physical things I cannot.
It’s not that I’m doing nice things for disabled people, either. I actually like working with folks who don’t use spoken language, because I often find having to make conversation tedious. People who know what my support needs look like by virtue of lived experience are by default going to be better than non-disabled people and there are limitless benefits to employing disabled people.
I know it’s going to be tricky at the outset, but I’m hoping this is something many disabled people can make a commitment to in order to resolve two issues – having people who understand us supporting us and the high levels of unemployment for disabled Australians today. And I hope it will become a usual thing, seeing people with disabilities supporting each other.
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.
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