If you know me, you know that I’m on a bit of a mission within the disability sector. I could talk at length about it, or I could just say that no person with disability, regardless of the severity of said disability, should live, work, go to school or play outside of mainstream options. There are ways to support a person to do these things within their local communities; it just takes work and creativity and other cool stuff that mixes practical and ideological considerations. If you want more information about this, hit me up.
Given that this is the case, I’ve wondered for a long time why the way I’ve learned to think about disability support isn’t mainstream. Why was it an extreme stroke of luck that I got to learn this stuff; why isn’t it everywhere? If what the majority of the sector does segregates people and leaves them more susceptible to abuse, then why is it being allowed to continue? I mean, apathy and the ongoing cry of ‘financial concerns’ without thinking deeply about the financial and other costs of ‘warehousing’ people are things. But what about passionate workers in the sector who truly care? Why is it hard for these people who are invested in the welfare of people to grasp that a typical life is good for everyone?
Well, you can relax. Because everything is awful. Segregation, abuse, excuses. It’d be funny if so many people weren’t more vulnerable because of their isolation and stigmatised existence. And by funny, I mean “still not funny”.
I’ve been brainstorming about my question of ‘why’, and the answers I’ve come up with aren’t pretty. I’m not sure whether I’m on something here or whether I’ve become a hardened cynic, but I’d be interested in people’s thoughts around this. Because I feel like “inclusionists” could talk about the benefits of true inclusion (actual inclusion as opposed to “excursions” to coffee shops followed by returning to a group home or day program or some such thing) for people with disability until we choke on our own words, and genuinely inclusive disability support still won’t be a thing that’s taken for granted by the majority of workers in the sector. I feel like we need to get to the bottom of the arguments that support and drive segregation before monumental shifts can happen across the board. Don’t get me wrong, incremental change is valuable; I just think there’s value in sector earthquakes, too.
So. Why, after two decades of “deinstitutionalisation”, are people with disability still segregated from mainstream society? According to my list, here are the reasons:
- We’ve done it for so many years, and it works fine. The person is happy, and we know how to deal with “behaviours of concern”. Doing something different would upset the person’s routine, and their <insert diagnosis here> wouldn’t cope with that.
- The shame of thinking we’ve done it wrong for so many years is so great that we have to go on thinking we’re doing it right. (Or, “cognitive dissonance hurts”).
- It’s what the majority is doing, and we don’t want to accidentally do the wrong thing by the person with disability by going against the majority.
- It’s comfortable.
- It gives us a paycheque; changing the system means changing our roles, which means potentially doing us out of a job. (Or, “I have a mortgage to pay, you hippie!”)
- Even if we get to keep our jobs, we have to change what we’ve been doing, and it’s not comfortable, and it feels weird, and shit gets harder before it gets easier. Better the devil we know.
- The person’s “behaviours” are too extreme, or their needs too great.
- We actually don’t know where or how to start creating change.
- We’re convinced we’re doing it right.
- People with disability need to live, work, go to school with and play with others with disability; integration isn’t good for them – all it does is pander to the egos of idealistic do-gooders who don’t understand things.
- We tried integration and mainstreaming, and it was bad for the person because <insert reason/s here>
- “This is what’s best for the person.”
- The person’s disability is too severe for them to know the difference anyway.
Regardless of which of these arguments you believe/don’t believe, I want to know your thoughts. Because we have an NDIS now, which is damn good news. But it can’t really do a lot in terms of the earthquake I mentioned if we don’t understand the nature of the shit that was going wrong that prompted the calls for an NDIS in the first place.
I want discussion, and I want it now!
Because everything is awful, and I can’t relax. And neither should you.