What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Tuesday, 12 April 2011

Right Royally Pissed Off

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.


Anonymous said...

Heike - I agree - and am at a loss for words to express my heartfelt resonance with your frustration. I am a mother too - and HATE the carer role. The ADVOCATE role for a kid on the Autistic spectrum is a constant and draining job - I have "escaped" into a job outside of all this. I so admire and respect that you have taken the job with both hands to keep advocating. You are a braver and truer advocate than I will ever be. I love you as my friend, and am so grateful as a carer/mother of a child with an intellectual disability that you walk this planet in my lifetime. Michelle de Vries Robbe - mother of 10 year old gorgeous boy with ASpergers Sydnrome.

Seana Smith said...

Well written Heike, and I absolutely love you differentiating between being a Carer and a MOTHER... like all mums, those of us with kids with additional needs are just trying to bring our kids up well. It's just harder work.

Todd said...

Thanks for your thoughts. I can't say I am surprised by the reaction of my article, but it was not intended to be as divisive as you claim.

My point was and still remains that carers should not speak on behalf of people with disabilities because they are a different interest group. Yes some carers might object to this, but its absurd for I or anyone else to claim they know what anybody else wants, even when its a parent speaking for a child, they can only guess what they require. Unfortunately for some, that is the only opportunity to have a say.

Moreover, its even more ridiculous when such assumptions are used to justify and promote policies like NDIS, a carer may well agree with the person they look after, but its not always so.

I too understand your position, and I guess we'll have to agree to disagree. At least you put your position respectfully, unlike the many others I have confronted during the course of this debate. It is the utopian ideal that the disability sector will become 'united', I don't think it will ever be, because assumptions are made on all sides, and disability is an individual experience.

Thanks for your interest in RampUp, I hope you keep contributing to the ongoing debates.

fiona anderson said...

There is a goal in sight - the NDIS and its potential to ensure guaranteed funding to people with disabilities and their families to decide how they want to use the funding in their lives. The NDIS will be what we make it - don't wait for govts to get it "right" or lose energy or hope with red herring debates - get in there and shape the NDIS the way you want it to be. Everyone can do this, no matter what their disability or association with disability. Don't get side-tracked by people who who want to use the NDIS or the old-fashioned carer/PWD debate to further their own career aspirations, whichever "side" they say they are on. The NDIS looks forward, that's where my son and my family want to go. We want to create and live our own futures. And we will.

Faye said...

The piece by Todd Winther pissed me off enormously. Why the hell should I lose the right to advocate for my child just because my child has a disability? The whole idea is completely discriminatory. After all, parents of children who don't have a disability advocate for their child's needs all the time yet as soon as you add disability into the mix some people think you suddenly lose parental rights. It's absurd, divisive and arrogant.

I also completely object to the label of 'carer', and I believe using it is a very intentional ploy to dismiss our views as irrelevant. After all it's much easier to dismiss a 'carer' than a mother or father.

My views also differ somewhat from the 'carer lobby' - in a variety of areas - and so I have never joined carer organisations and I never will. I prefer to focus on my children's needs - after all, I believe that if their needs are met then so are mine. Some carer org's have done a great disservice to who they call 'young carers' and I believe they have done untold damage by condoning the sidelining of children into a role of enormous responsibility. That's just one reason amongst many that I prefer not to associate with carer advocacy.

Quite honestly, I think the debate sparked by Todd's column needed to be had, these divisions have been there for a long time. I have my own views about why they are there, I think some carer groups have probably inspired quite a bit of anger from pwd- particularly when the accommodation issue has arisen in the past. It's just such a shame that this debate had to happen in such a public, heated way -- particularly at a time where we need to be seen as a united voice in terms of advocating for the NDIS. Something that the overwhelming majority of us want.

Anonymous said...

The wheeliecrone says -
I am a person with a disability. I agree with everything you have said in your post. Every. Single. Word.
If we waste our time and energy fighting amongst ourselves, we are less likely to succeed in achieving our common goal.
I, too, very much want the NDIS to succeed.

Liz (Poppy's mum) said...

HI Heike

Have been wanting to respond with support for your post for ages. I too am p*ssed off at the divisiveness of the carer(parent) vs. pwd "debate", and can't understand why it seems some people need sides to be taken...?

I don't know if you've read this latest post from Dave http://davehingsburger.blogspot.com/2011/04/miracle-on-yonge-street.html , but it's nice to see validation of parents' roles, written by a man with a disability who works so hard and publicly to achieve better things for pwd.

Love yer work