A personal celebration of International Day for People with Disability 2013









Today is International Day of People with Disability.

I tossed around whether to write something for it.

I felt uncomfortable because part of me agrees with the critics – is it a celebration of false community; a smiley-face-party-hat-of-froth overlaying deep inequality? This especially stands out for me when I see the functions created by service providers for their ‘clients’ and know the deep lack of power and decision-making that is likely to characterise their relationship with that provider. Part of me squirms wondering if some of these people might be subject to the kind of violence, bullying and abuse that so easily flows in situations where people are vulnerable and power is concentrated. Take the recent case of the worker at Yooralla service in Victoria.

But today has been the catalyst to some reflections and I decided to share them.

IDPwD has made me reflect on all the people with disabilities I know, love, care about, had the opportunity to work with and am associates of. And I do want to celebrate them. Not as inspiration porn or as some ‘object’ of my learning. Not as some false community. We have congregated and segregated people with disability for centuries and a day like today can indeed serve as a way of yet again, bringing people together (literally or figuratively) in a bubble of non-togetherness. I always remember thinking as a kid that the other people my brother lived with in his group home were more different from each other than the same. Matthew always gravitated to certain people and they generally weren’t those he was deemed by others to have something in common with.

No, when I think of these people I see them in my mind’s-eye making their way in life – with all its concomitant joys and ‘I hate-the-world’ periods. Making their way in life through their own local, political, work-related, family, interest-related, religious and (insert your own title here) communities and sub-cultures.

And when I do that, it gets me excited.

Don’t get me wrong. I see everyone I know struggle, feel so frustrated and experience multiple personal rejection. It regularly flattens me. But I have also had the great privilege through these treasured relationships to see what happens in worlds when people with disability are genuinely present. Those worlds change. So through my relationships I have been able to see a world changed. And that is what I want to celebrate. Thank you one and all.

Institutions come big and small.  They can be a house with 4 people with disabilities staffed 24 hours a day with ‘carers’. They can be one kid with disability stuck up the back of a classroom learning a separate curriculum glued to an adult ‘support teacher’.  They can be our own family desire for creating security, long after we die, by building things to put people in. They can be the leap from “John needs friends” to “Let’s create an Asperger’s social group” rather than “Let’s figure out the kinds of people John might like to meet in his community based on all of John’s inner-ness”.

I know the smell of institutions. I smelled it first when I was 7 years old. I don’t want anyone else to know that smell. All the so-called solutions above smell like that to me. A mixture of urine, wipe-down-plastic-furniture and industrial cleaner. They smell of distance and rejection and exclusion. We’re plagued by the notion that building things and creating more services is the solution to the life needs of people.

So I find I have more in common with anyone keen on building a truly-inclusive world. For starters they are a far sexier bunch.

I saw this meme on Facebook recently. It reads “We blame society but we are society.”

Interesting. We can’t expect the world to be more welcoming and inclusive if we are not doing the same. We can’t say society doesn’t accept people as they are while we continue to build segregation. Sometimes I am categorised as part of the community of carers, family members, siblings. But I don’t necessarily consider myself totally part of those communities. I know why many parents seem intent on re-building institutions. I FEEL why they do it. But by doing it we re-create the very world we long would change.

Now I don’t want to go all soppy on you, and I know I said something about inspiration porn, but building a truly-inclusive world, that is a real hard place to be. That is where heartache lies because of course there are many a*^holes in the world and because you still can’t even get in the door most of the time. And because pretty much all the resources are still locked-up in congregated and segregated solutions. They are really up against it. So to choose something different is a very vulnerable and often tiresome place to be. And therefore I think it takes extraordinary courage.  Because if it’s the riskier place to be, with possibly much personal cost, then those people I know, love and care about, have to decided to be in that place anyway.

And I want to thank every one of you on this day.


  1. Fiona Anderson says

    Agree, and thank you. And Australia is still a democracy where we can play a role in political life (no matter what people think of our media and MPs). This IDPwD marks the start of a change we can co-create. With the NDIS we have the chance to envision and design the supports that will help us be part of our communities at home, work, play, education, recreation and social life. In our family we are trying to not demand respect but offer and earn it, not insist on immediate funds or supports (not likely in Qld :) ) but work with those delivering it to make it suit real needs, to demonstrate by our actions that inclusion benefits individuals, families, communities and nations, not just one person in our family who has a disability.

  2. says

    Really enjoyed reading your thoughts – thanks for sharing. I too wrestle with the day but i decided to host an event to enable a moment to pause and reflect – your words have changed what i was going to say this afternoon. It won’t be a function with a smiley face and a pat on the back

  3. Luci Kischel says

    Thanks Libby,

    I fully understand where you are coming from. I have not seen a reason to celebrate a day such as this because I have seen so much heartache for my son and in turn our family. I have felt so alone and so confused in the whole world of helping, I feel that I didn’t give as much time to my eldest son because I was always so busy with Lochie.
    My views have changed a lot over the last few weeks since meeting you and the other families who live in my area. Without that camp, I might not have found these people so quick and wouldn’t have gone looking for them. We very rarely got help for Lochie, then when I tried to get extra help I worried that we were taking help away from others with children who were not doing as well as he was.
    Now I realise that he was as entitled to help as anyone and that I should not have felt “bad” asking for help. Guilt plays such a major part of everything, have I done enough, what else should I have done, why have I not been able to fix his internal pain and so many other questions. Guilt in general plays a huge part and even when I see his achievements and everyone says, “you have done a great job”, I still doubt that I have done enough. Being a parent is a hard thing and being a parent of a child with a disability is punishing and yet so amazing at the same time.
    I have felt a weight lifted in the past few weeks as I can see a brighter future, Lochie has made friends and has opportunities he never had before. I have had a chance to discuss my feelings with other parents and find out I am not alone in feeling this way. I can finally see a reason to celebrate a day like this, to use it as a “spotlight” on the achievements we have made. I hope I continue to feel this way and that the NDIS truly makes a difference.

  4. Jen Ashton says

    Thanks Libby and others. I too struggled about what to do with IDPwD. Certainly a day of quiet reflection.

  5. Tony Jacoby says

    Bravo Libby, really well written obviously right from the heart. It will be people like you that really change things for the better.

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