Why it’s you that makes disability hard

This week I’ve been collecting screenshots. Small fragments of hate, to add to something I haven’t quite figured out yet. A mosaic of micro-moments that remind me that I am not like you. That bodies like mine are not welcome in the world.

A blind woman gets called selfish for wanting to do her shopping online, and long-fought for captions for television become an optional extra. HomeCare is to be sold off to the likes of Serco, and the rest of disability services vanish from the public sector. Fewer people with disabilities work in the public services. The National Disability Strategy watches as previously agreed milestones race past, with no action in sight. The torture of people with disabilities is reported to the UN.

The NDIS splutters on through the different trial sites, getting some things right, and some things wrong. But the glaring hole in the NDIS, those who don’t fit its narrow eligibility guidelines, looms just over the horizon. The NDIS is bound by rules made as strict as possible – can’t fund this, and can’t fund that. The states might cost-shift, or try to make up for their inadequacy in the health, education and transport systems.

commaffairshansard_p127_141023

[Text from Senate Estimates Community Affairs Committee Hansard describing how the NDIS will not be used to fund state services. From here on p127.]

And so the stairs and the stares remain. Left to individuals to figure things out. The social model of disability, where you, and your narrow range of what’s normal is the problem, seems again just a distant mirage.

I’ve come to understand that I’m not allowed to talk about things being hard. That just uttering those words breaks your shiny cripple bubble. That my individual sorrow, grief and rage are not to be spoken allowed. I’m to be brave, and smile and not remind you that having a disability can be fucking hard going at times. Because that might make you feel uncomfortable, or want to try to fix me, or tell me that I’m being selfish for wanting the same things you have.

You are the ones that made this world so hard for me to be in it. You, over there, pointing me out to your friends. You, over there, making buildings I can’t use. You, over there, refusing to budge an inch to make something readable. You, over there, saying I shouldn’t go out into the world.

Where does the social model of disability fit in all this? My sadness about people’s reactions to disability is not going to be ameliorated by some ridiculous awareness campaign, that is more about your feelings than my rage and grief.

It shouldn’t matter, but it does. I shouldn’t care about what you think, but I do.

This mosaic of moments that say I shouldn’t bother to keep trying to be in the world, those comments that you think don’t matter, just add to my mistrust of that world. A world so hostile to my being in it that it adds layers and steps and judgement and hatred to my every interaction.

And yet surely my anger is my own fault; I should be nicer, or more positive or more fucking What Katy Did. As though having a disability means I have limitless energy to be charismatic and kind.

I don’t.

But surely I am just expecting too much from you; after all, disability is something that only happens to other people, right?

Advertisements

About bluntshovels

Freelance writer, with an unhealthy interest in Senate committees.
This entry was posted in disability, personal and tagged , , . Bookmark the permalink.

4 Responses to Why it’s you that makes disability hard

  1. bluebec says:

    I am sorry that everything is more likely difficult for you because people don’t think about disability. I hope we can make the world a better place.

  2. jane says:

    We have 2 boys, now men, with disabilities. One has a severe language disorder and intellectual disability, the other, an intellectual disability.

    Until I had my two boys, I had no understanding of how difficult and isolating life with disabilities can be.

    It may not be a comfort, but you have more courage just living than any of the able bodied idiots who go out of their way to make life more difficult for you.

    I wish you all the very best; you deserve it.

  3. Pingback: Good Cripple, Bad Cripple: What the hell does that mean? | Lilliputiae

Comments are closed.