I am right royally pissed off! And I just have to write this off my chest. So here goes. It could probably do with some editing, but I have to get it out.
Recently, my friend Sue O'Reilly wrote a guest piece for The Angry Cripple on the ABC Ramp Up site. Ramp Up is a fantastic site full of disability news and opinion, and Sue has written for them before. That should not come as a surprise to anyone. Sue had things to say. She's an excellent writer and therefore says them well.
She wrote about the realities of housing for people with disabilities. She pointed out how our ideological positions have actually resulted in less opportunities and choice for people with disabilities. I totally agree with her article, and I knew she'd cop some criticism for it (as I'm sure she did), that was to be expected. But when it came, it came from an unexpected corner, and in a most unexpected way.
Todd Winther is an astute commentator with whom I have previously agreed (Todd Winther is a PhD candidate in political science and can be found blogging at Thoughts of a Frustrated Visionary). So imagine my surprise when he attacked Sue's position, and in a way I consider totally unfair.
Before he dismisses Sue's comments, he dismisses her personally as only a carer and implies the often heard comment that the disability advocacy field is held hostage by carers. Todd wrote:
"[Sue] claims that funding organisations and governments should pay more attention to those with disabilities. Instantly I saw the latent hypocrisy in this argument. How can someone who does not have a disability suggest this? "
I am just so tired of this cowdung!
I could explain to you why I think this argument is rubbish. Some of it you can find in comments I left (two, as I thought the first one had not come through). Suffice it to say that for a PhD student he really needs to revise is course notes on post-modernism and authenticity of voice. If he follows his own argument to its logical conclusion, he can only speak for angry Anglo young men with a physical disability and no-one else. Could only women argue for the women's right to vote or stand up against domestic violence? Could only slaves denounce slavery? Can white people not be against racism? Do you HAVE to have a disability to see the system needs fixing!?!?
But really, what makes me so angry about all this is that it is so bloody judgemental.
Let's get one thing straight here. I am not a carer. Let me just say that again. I AM NOT A CARER. I do not belong to any carer organisations. I have not even voted for the Carer Alliance - even though they are one political party that speaks for me - because their focus is a bit to carer-focussed for my liking. I shun every organisation with the word carer in it. Why?
I am not a carer.
I am a mother.
If we had a decent disability system, in which my disabled children get the same opportunities and chances as my non-disabled child gets, I will not need to be a carer. If we had a decent disability system, in which my children receive the therapies they need on a timely basis, I would not need to be a carer. If we had a decent disability system and my disabled children would get the equipment they need, I would not need to be a carer. Add equality of access, education, acceptance etc. You get my point.
I am a carer by default only.
When will people with disability get this? Like many parents, I am not in the disability community for my entertainment. Nor am I in it for me - even though I sometimes joke that I'm only in it for the parking. Or does anyone really think those $45 dollars a fortnight of Carers Allowance is such a phenomenal treat? When I advocate for education for kids with disability, when I rally for an NDIS, can you believe that I realise this in not about me? That it is about the people with the disability?
Believe it or not, I do actually know that. But you know what? They happen to be my kids, and if I don't stand up for them, who do you think will? You can have my Carer Allowance, you can have my time, you can have my frustration and my anger. Just give my kids what they deserve, and I will happily shut up and go back to my previous life. I have yet to meet a parent who woudn't give the world to be able to leave all the advocacy, and fighting, and fretting behind and just be a parent.
Don't get me wrong, I know where this resentment comes from, and to a large extend I understand it.
People with disabilities have long fought, and are still fighting, to get heard, to be treated as equal human beings. People with a physical disability in particular are rightfully fed up with being ignored and written off as useless or unable to speak for themselves. Things are especially hard for those who have difficulties with muscle control or speech - they know what they want, they know what they want to say, and just because they have difficulties articulating it, society writes them off. When people with disability are upset about people speaking for them, these are the situations they are referring to. But at the same time, there are those who cannot speak for themselves. When my friend with her 20 year old son with an intellectual disability stands on the barricades to demand appropriate housing for kids like hers, she does so, because firstly, there is no where for him to go except his parents house (and where is the choice in that for a young person) and secondly, because he can not. Sure, he can speak, but does not understand the concept of appropriate housing or would not know how and where to advocate for it. When my young son tells me he does not like school because he's behind the other kids and wants to quit, it is my job as a parent to keep him in school and advocate so he gets the help he need to finish his education (he is only 10, you know).
What actually takes place here is discrimination on the basis of disability. How on earth can it be ok for people with a physical disability to deny the needs of people with an intellectual disability just because they cannot articulate their needs and have them expressed by people who love them but, shock horror, are not disabled. Of course people with disability need to be heard. Of course, nothing about them without them. I would never dare to speak But people with a physical disability are not the only ones that need ti be heard.
One of the comments on the Ramp Up site, written by CARO, puts it beautifully:
"The Angry Cripple (...) said that s/he saw this column as an opportunity for all those fighting for a better deal for pwd to raise issues/concerns/subjects of topical interest in the disability field. AC didn't say "As the name of this column makes crystal clear, I'm only interested in issues affecting people with cp, ms and spinal injuries who use wheelchairs - anyone with an intellectual disability can go whistle Dixie". Nor did s/he say that families of pwd could and should go jump. What do you think parents/carers are fighting for when they advocate for an NDIS? Do you think they think it will mean free facials for the rest of their lives and regular paid holidays somewhere sunny? Or do you think they might be fighting for a better deal for people with disabilities? If so - where's the conflict? Where's the problem."
The other thing is that it is so bloody divisive.
As longs as we continue fighting, we loose. Instead of standing strong as a community, instead of pooling our political power, we squabble with each other. We refuse to see our commonality and focus on where we differ. We don't stop to see what we are actually saying, or asking for, because we are too busy attacking each other. And then we are surprised that the disability community carries so little political clout!? That politicians ignore disability? That our system is broken and there seems little interest in fixing it?
Give me a bloody break!
Can we just cut the crap and get on with the incredibly big job we have ahead of us.
Just stop for a minute, Todd. Stop for a minute and listen to what people are saying, before you judge them on who they are. Like my friend Sue, I am a parent - you would probably call me a carer - and we have seen eye to eye on other issues (like that ghastly add by the CPA) and you are a person with a physical disability. Yet I think you would be surprised how often we would agree - and I think we could make a good team. We might even get a decent disability system together.
