I am tired. I guess after 30 years or so as a disability advocate you get that way. Sometimes the job is really demoralising. Last week this hit home in a way I have not experienced for a long time. I was attending a professional development workshop. This was my second week of attending such workshops having just attended a full week of various workshops in Perth. People at the workshop I was attending were having a moan about the Perth workshops from which we had just come. They were moaning about having to hear of the same information over and over again. Said one person, “How much longer do we have to keep hearing about Universal Design!”[1]

Normally I would not react to such comments. However, this time I took umbrage. I took umbrage because all the people at the workshop were disability practitioners. It is their job to ensure that such workshops are fully accessible. Now to start with I had to provide my own Auslan interpreters because organisers of the workshop had not thought to budget for access needs, despite asking if you had any on the registration form.

When I came to the workshop the layout of the room had given no thought as to where the interpreters would stand. No tables had been reserved so that the deaf person could be seated appropriately to use the interpreters. There was apparently a hard of hearing person at the workshop too. The sound system only worked at different points of the venue and their was no captioning. This was a problem for the interpreters too, because they had to stand at random points in the room and at certain points they could not hear anything.

Then of course one of the speakers was a person in a wheelchair. Tables had been laid out so that the person in the wheelchair had to weave in and out and around chairs in a way that would have tested a participant of the giant slalom. The layout would also have tested the patience of the blind participant with her guide dog. Even with her guide dog she banged into chairs and tripped over bags that had been left out with no thought to her access requirements. Planning for these things is what universal design is all about.

And here we had experienced disability practitioners moaning about having to hear about universal design again. YET they seemed incapable of implementing what is a very basic concept. Sure it takes a little bit of thought and planning but this is what these people are paid to do. It’s precisely because these people can’t implement the concept that we have to keep talking about it. Again and again and again! No wonder disability advocates get tired.

I sometimes wonder if it is all worthwhile. I often think that I would have loved to have a different job. A job at Bunning’s for example. I would love a simple job that I can go to and then come home and completely switch off. But this is never the case for people with a disability. They have to be constantly vigilant.

If you are a person in a wheelchair chances are you will be in danger of pooping your pants because some twit has used the accessible toilet as a storage room. If you are deaf chances are you are gonna miss your train because the platform has been changed and they have only announced it on the loud speaker. If you have some kind of physical disability a lot of Melbourne’s trams are of no use to you, whatsoever, because the only way to mount them is up steep steps. Many train stations are also inaccessible. People with a disability need to be constantly alert and prepared simply because our society is a series of constant barriers. It should not be this way.

Kelly Vincent, a person with a disability and a member of the South Australian parliament, touched on these issues today at Stella Young’s memorial. Vincent spoke about the tax-payer money of people with a disability not being used to provide proportionate access for people with a disability. People with a disability pay taxes so it is fair to say they expect value for their buck. But no, the barriers still exist and they are being broken down ever, ever so slowly. It is shameful really, especially for such a rich country like Australia.

Vincent suggested that sometimes it takes an event like Stella’s death t wake people up. Access is straightforward really. She used Stella’s memorial as an example. The trams to the venue were accessible. The organisers had picked a venue that was serviced by accessible trams. There were ramps to the stage for wheelchair users, Auslan interpreters and live captioning. The event was filmed and great care was taken to ensure that the interpreters were in shot and visible all the time. Captioning was live and on screen too for all watching on television. One speaker was even using a communication device and was provided with assistance so that she could stand safely at the podium. Access of this kind is possible everyday, but rarely happens. Stella, even in death, was teaching us all a lesson.

This is in stark contrast to our leaders, who even in a time of national emergency cannot think of access. All of us were shocked this week about the tragic siege of the Lindt Café that led to the death of two hostages. Prime Minister Abbott, addressing the nation on the Governments response to the tragedy, neglected to have Auslan interpreters at his address. And this happens all the time despite the policy that states that Auslan interpreters must be booked when information is being broadcast in relation to national emergencies.

And this is why disability advocates get so tired and demoralised. The same simple and basic mistakes are made time and time again. We repeat ourselves over and over and the response from the people we are trying to influence to change is – “Do we have to hear this all over again?” It seems all so futile sometimes.

And then something happens to remind us that people actually do listen and do care. Something reminds us that people are actually listening to and are influenced by what we say. In this case it was my 13 year old son. And it was nothing to do with disability access.

Last week, as the Islamophobes reared their ugly heads in the wake of the Lindt Cafe siege, my son was moved to post this on Facebook – “For everyone saying racist things to muslim’s, it is not their fault, nor responsibility, for these idiotic “extremists”. It doesn’t matter what religion you believe in, if you are a bad person, you will do bad things. Lets not put blame on innocent people”

This profound statement reminded me that what we advocates do is all worth it. It is worth it because we actually do have influence. My wife and I are big on social issues, anti-racism, anti-discrimination, pro inclusion and so on. And my lad with this little statement reminded me that people listen and people are influenced by the things we say. Eventually the message hits home and change happens. That my lad has been influenced by the values that my wife and I practice was a real boost for me.

Change has happened, and change will continue to happen simply because we advocates keep hammering the message home. Because if we stop, the alternative is totally unpalatable. But gee I wish some of my colleagues in the disability sector would set a better example. It is their actions that demoralise me the most.

But we continue because in the words of the late and great Stella Young,

“I really want to live in a world where disability is not the exception, but the norm. I want to live in a world where a 15-year-old girl sitting in her bedroom watching “Buffy the Vampire Slayer” isn’t referred to as achieving anything because she’s doing it sitting down. I want to live in a world where we don’t have such low expectations of disabled people that we are congratulated for getting out of bed and remembering our own names in the morning.”

And that’s what I want for Christmas so the fight continues. Merry Xmas everyone!

[1] (Shortly before this my Auslan interpreter had interpreted a side comment from an attendee at the workshop – The MC was discussing Aboriginal issues and the person had apparently uttered to their colleague as an aside –‘I haven’t come here to talk about Aboriginal issues.” – The disrespect of this comment shocked me to my core.)