It was a really merry Xmas for the leaders of many of our Disability Peaks this year. The Abbott government, showing all the compassion that it is renown for, announced that many Disability Peaks had been defunded. This just three days before Christmas. For many that worked within these peaks either as CEOs, administrative workers or project officers,  Xmas came with the knowledge that they were about to be out of a job.

For those not in the know, Disability peaks are those organisations that advocate to the Government on behalf of people with a disability and their families. In the Deafness sector these peaks were Deaf Australia and Deafness Forum. Through the skilled advocacy of these organisations many programs have come about such as the Auslan for Employment Scheme that was later expanded to include live captioning. We have also seen steady progress and improvement in captioning and telecommunication access among other things.

Sadly both Deaf Australia and Deafness Forum are among the peaks that have been defunded. They are currently in for the fight of their life to stay afloat. In the short-term they are unlikely to have their funding restored. They will both need to work very closely together to ensure the needs of Australians who are Deaf and hard of hearing are heard. They must carry on without funding. A merger is on the cards.

This Government has no clue as to what it is like to live in Australia with a disability. It seems to not care that Australia performs horrendously in providing support for people with a disability. Why else would 45% of people with a disability live in poverty? People with a disability are among the most vulnerable in Australia yet the Government has them firmly in its targets. Meanwhile mega rich mining and media moguls continue to get tax breaks and abuse the system.

Cruelly one of the Governments targets is single parents. Currently as soon as a single parent’s child turns 8 years old single parents are being forced on to Newstart. They are being made to look for work. This requirement in itself can be very unfair but if your child has a disability it becomes even more so.

My friend is the mother of a child who is deaf and also has autism. She has been forced on to Newstart. My friend already works five days a week but with limited hours. Luckily she works at her son’s school but must be on call to deal with any adverse behaviors that might happen. Last week, as an example, her son head-butted a glass pane door of his classroom because he could not get in. It smashed and he cut his face all over. Said my friend, “ He was damn lucky not to have cut his eyes or a major blood vessel. Bled like a stuck pig. Added 20 years and too many grey hairs to count.”

While this sort of incident is extreme her child’s challenging behaviours are common enough. It means that my friend has to be available at call. She requires a flexible work environment which she, luckily, currently has. Her family is not close by to support her apart from her elderly grandparents who are unable to offer support. Her ex-husband has his own health issues and the bulk of her sons care falls almost solely on her. She gets no respite care from the Government because she cannot get this unless she is, “going to hurt my children or myself.” The NDIS is currently not an option either because its not due to be introduced to her area until 2016, if at all.

At home she also has to deal with meltdowns. She is trying to assist her deaf child with language development. She is assisting her child with his education that is inevitably interrupted and challenged through autism and deafness. She is also trying to give fair attention and love to her other child. On top of this add the additional expense of broken objects and laptops that can be the product of behavioural meltdowns.

My friend does not get carers payment from the Government because – “ I don’t provide constant care in the home because he goes to school” She gets carers allowance that she must split with her ex-husband. This provides her with the princely sum of $56 a fortnight. Previously she got single parenting payment but now she has been shafted to Newstart she has lost $205 a fortnight.

AND to top this off, because she has been shafted to Newstart, she is expected to apply for ten jobs per week. This single mother who can be called from work at any time to care for her child, who has the sole care of a child who is both deaf and autistic, a child that has challenging behaviour at home and school that requires her constant vigilance, who also has the sole care of another child … This mother is expected to look for ten jobs per week! Why? Because the Government thinks she is a LEANER and somehow has the capacity to not only look for ten jobs a week but also work full time. As she so eloquently put it – “How f#*ked is that?”

This is what the Abbott Government wants from people who have next to nothing! Meanwhile the worlds richest woman, Gina, is floating on her luxury yacht, sipping an adult beverage whilst getting tax breaks left, right and centre. To top this off Dr Death Morrison has been appointed Minister of Social Services and our advocacy peaks have been defunded. AND the NDIS is about to be used as a pawn for the Government to push through its unfair welfare cuts! Indeed – How f#*ked is that?

 Merry F#*king Everyone!

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.)

‘But in case I get hit by a bus tomorrow, I want to make something clear. I am not a snowflake. I am not a sweet, infantilising symbol of the fragility of life. I am a strong, fierce, flawed adult woman. I plan to remain that way in life, and in death.’

Stella Young –

When famous people die we often ask our friends – where were you when …. ??? I was in a petrol station filling up when I saw on the TV in the petrol station that Princess Di died. I was at Manor Farm oval meeting a friend to play soccer when he told me that Elvis had died. I was a peanut in my Mothers tummy when Winston Churchill died.  I remember being really moved by Steve Irwin’s death. I watched his funeral on TV.  When Bindy gave her eulogy, all 8 years old of her, confident and articulate, I turned into a blubbering wreck.

I was on the train today when I heard of Stella Young’s death. I was flipping through Facebook, trying to pass the time before arriving at work. And there it was, someone posted that Stella Young had died. I thought it was a hoax. It was not possible. And then posts started to appear rapidly announcing her passing. And I cried. I looked down at my iPad and cried. I walked to work from the train station and I cried. I had to stop at a café to compose myself. I ordered a coffee and I cried. Even now as I type this the tears are welling up.

But I never met Stella in person. Like most people interested in disability activism I knew her through her writing. I knew her through her television appearances. I knew her as an editor of the now defunct Ramp Up disability Blog. It was not until today that I realised just how much her work, her views and her life had impacted on mine.

I had the privilege of being contacted by her when she was editor of Ramp Up. You see, unbeknown to me, she was a reader of The Rebuttal. She had read a piece that I had written about a conference organiser who would not provide interpreters for me to attend. I wrote of how I put pressure on the conference organisers by emailing them and all of the speakers who were to present at the conference. She loved the piece and wanted to publish it on Ramp Up. “The Rebuttal”, said Stella, “..is awesome.” Coming from a person who is perhaps the best writer on disability of our age, this was high praise indeed.

When I read of her passing I was moved to post my own tribute to her on Facebook. The word that kept coming to me was Inspiration. I had to force myself to not use the word. People that followed Stella’s career would know of her loathing of the word inspiration. She wrote and spoke about this loathing often.

In a Ramp Up article Stella had this to say, “Inspiration porn shames people with disabilities. It says that if we fail to be happy, to smile and to live lives that make those around us feel good, it’s because we’re not trying hard enough. Our attitude is just not positive enough. It’s our fault. Not to mention what it means for people whose disabilities are not visible, like people with chronic or mental illness, who often battle the assumption that it’s all about attitude. And we’re not allowed to be angry and upset, because then we’d be “bad” disabled people. We wouldn’t be doing our very best to “overcome” our disabilities.”[1]

Until I read this piece I had always struggled to articulate the unease I felt about inspiration porn. I had always hated the photos of little disabled children struggling to walk on crutches or leg braces while TV celebrities wept as they looked on. I had always hated those videos of children who had received cochlear implants. Inevitably the child’s eyes open super wide as the implant is switched on and the headline screams “CHILD HEARS” These people cared and I hated it. Why????

But Stella had the answer. Said Stella of the motive behind inspiration porn, “…it’s there so that non-disabled people can put their worries into perspective. So they can go, “Oh well if that kid who doesn’t have any legs can smile while he’s having an awesome time, I should never, EVER feel bad about my life”. It’s there so that non-disabled people can look at us and think “well, it could be worse… I could be that person”.”

And that was it in a nutshell. Inspiration porn is designed to make non-disabled people feel good, not people with a disability. The motive is nearly always to make non-disabled people think – “ ..thank fuck I am not like that.” And that’s why I and many other people with a disability hate it – Because it makes people with a disability out to be lesser beings. They are deficit!

I will always be thankful to Stella for having the courage to say this loudly and publicly. She put into words what many of us felt but could not or feared to articulate. Stella pointed out often that if people with a disability protest or show our revulsion for inspiration porn they are made out to be miserable bastards. They are made out to be ungrateful and unreasonable. But if you were told every day that your existence is only worthwhile if you are able bodied and normal – Well pardon me if there is an overwhelming desire to say – UP YOURS!

So Stella Young has died. Of course we must grieve. Grief is a natural process. But we must not grieve too long. We have the responsibility to carry on Stella’s legacy. Through her wit, her charm, intellect and sheer desire she has created waves for the disability community to surf. Let’s use Stella’s death to create waves, to knock down barriers and change attitudes. As we do this let’s have fun, lets party and even knit. Let us show the world that disability is, more often than not, a life worth living – VALE Stella – I promise you your legacy will not go to waste.

I could not resist closing this tribute with the delicious example of black humour from my friend Samantha Connor who is, like all of us, devastated at Stella’s passing:

“There is a very competent lawyer in WA, Prue Hawkins, who also has OI. She is older than Stella but also has stylish hair and a flair for fashion so is often confused. I tell Shaye that Stella has died, and she tells me she often saw Stella in the city – Shaye works in law. No, Stella lived in Melbourne – you saw Prue, I tell her. Then I get the giggles thinking how funny Stella would have found the thought of thousands of people spotting Prue or others with OI and coming up to them, mouths open, saying ‘OMG I thought you were DEAD’ – she would have found their shock and horror deliciously amusing.”

Indeed I reckon Stella, with her impish sense of humour, would have found this hilarious!

Let the celebration of her life begin !!!

[1] http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm

Many years ago as I was beginning to establish my career I was a support worker for a girl with a severe disabilities. One of the things that I had to do was take her to recreational activities. These activities were decided by my boss. My boss had this misguided idea that the activities were decided in consultation with the girl. Given that communication with the girl was difficult and that my boss could not communicate with her, this was a bit misleading. But she was the boss so I just went along with it.

Inevitably activities were things like craft groups, walking groups and things like that. My client was a young woman and participants were usually elderly women who were not disabled. They would would say a cheery hello to my client when she arrived and then proceed to ignore her for the rest of the day. They would go on their bush walk and my client would keep up the rear. Usually after ten minutes she would kick up a fuss because she did not want to walk any more.

The elderly ladies would look back as she screamed and kicked things. They would ooh and ahhh and shake their heads. They would then pick up the pace leaving my client sitting in a heap. Around this time I would take her home. The activities, said my boss, were best practice in inclusion. I would often point out that my client was not included. “She is just there.” I said. “like a passive object.” My boss didn’t take to well to this suggestion. Fairy tales are much more palatable.

This memory came back to me this week as I was attending the Pathways conference in Perth. Pathways is a conference held every two years for disability support people at Universities and TAFE from around Australia. There were several papers presented that challenged the concept of inclusion as we know it in education. The gist of it was that arranging support to allow people with a disability to partake in education is fine, but is it enough? Is it enough to focus only on their learning needs? Are we missing something?

It made me think of my education at school and later at University. I realised that there was very little of it that I actually enjoyed. Sure I had a few wild parties but even those, when I think of it, I wasn’t really included in either. I would go to a party, I would drink and basically just look on and watch. I couldn’t really follow conversations. Usually any conversations that I had were when some nice woman, nearly always a woman, would take pity on me and strike up a conversation.

This conversation would usually be quite stilted. One because I had to lip-read, not an exact science, and two because the parties were usually noisy and being deaf with a deaf voice meant that it was hard for people to understand me. I am easy to understand when it is quiet, but when it is noisy I struggle to modulate my voice. I ether talk too loud or too soft. Looking back, even though I got sympathy sex from time to time, it was exhausting.

Then of course there is the actual learning. The first time I went to university was at the old Salisbury College of Advanced Education in 1984 to study teaching. I met with the head of the school to discuss my “inclusion.” All that could be done was to ensure that I sat at the front so I could lip-read the lecturer and to remind the lecturers to look at me and not cover their mouths. No interpreters, no note-takers – Nothing! I didn’t last long.

Then I went to Mt Gravatt College of Advanced Education. I got interpreters there and note takers. I was even involved in the student activities organisation committee. I attended numerous meetings and understood nothing because there were no interpreters for these. If there was a shortage of interpreters, which was often in 1985, I inevitably missed out because – I spoke well. But at least I had access to learning material. It was a start.

Three broken legs later in 1986 I gave up the ghost and returned to Adelaide to study social work. I attended the University of South Australia. I met with Dick, the DLO there, who promised me the world. He was gonna organise me a note taker buddy he was. He was gonna get me lecturers note he was. He was a fucking star, brilliant, he did fuck all. So much, in fact, that after four days at Uni and no note taker, no buddy and no notes I had to stand out the front at the lecture theatre and ask for help.

Help was forthcoming. After all these were future social workers. Imagine if they didn’t want to help, the industry would be screwed. But the help was sporadic. My buddies would forget to give me notes. They would rush off to the next lecture. I was always chasing them up. It was not ideal. And there were still no interpreters.

To be fair the University later pulled out all stops. They tape recorded lectures for me and Dick’s secretary would type them up. Problem was she was very busy and the notes came two weeks later so that I was forever playing catch up. They paid someone to take notes for me too. BUT there was still no interpreter.

Everything was focused on ensuring that I got access to learning material. I wonder if this is still the case today? I mean, even though I can get interpreters now, their use is in lectures and group work. If I get note-takers, it’s for lectures and group work. If I get access to technology, the focus is to ensure I get access to information during lectures and group work.

What the literature generally shows is that students with a disability are thankful for support, but the support is often not enough. A theme that comes up often is attitudes of other students who are non-disabled. Students with a disability want to be part of the bigger picture. Not feeling equal and included with their peer’s impacts on their enjoyment and motivation to continue with their studies. Data sadly shows that retention of students with a disability is much lower than those who do not have a disability.

Often just learning is not enough, there is a real desire to belong. Apart from the desire to belong one needs to consider how much having access to peers actually helps ones education. Peers actually talk about what they have learnt. They see things from different perspectives and angles. Having access to natural social interaction allows students with a disability to expand on their learning.

There are many other factors that contribute to retention rates of students with a disability. Sometimes it comes back to learning styles and the needs of specific disabilities. Sometimes students with disabilities necessarily learn differently. University learning is known for its rigidness. Sometimes there are strict and inflexible requirements like the ability to observe, hear or stand. These are called inherent requirements and all are developed with no thought as to how a student with a disability may have developed different skills to complete tasks.

The inflexibility of some academics to bend these requirements is legendary. But students with a disability often simply do the same thing differently. For example nursing requires the person to stand yet there are apparently nurses in wheel chairs in America. I heard a story of a nurse who is a short statured person, she carries a step ladder with her to ensure she can reach where she normally might not. Inherent requirements in Australia have not been developed with any of this in mind.

Inclusion is complex. It is not just about being there. Some people are quite happy to just attend classes every day for four years to get their degree but most people are not. People with disabilities want to belong, they want to experience new things and they want to enjoy. What became obvious at the recent Pathways conference is that inclusion is a holistic concept and if it is to be successful a whole range of issues beyond simply learning need to be factored in.

I can hear the Abbotites now screaming that it will cost too much. All I can say to you is that people with a disability not completing their study will cost more. They will get low paying jobs, they will rely on Government hand-outs and what’s more the money spent on their further education is wasted if they do not complete it.

It’s time to review the art of inclusion. Urgent investment is required