Being a disability advocate is both rewarding and frustrating at the same time. As an advocate, when you have a win it’s a wonderful feeling. All those emails, phone calls and discussions finally bear fruit. For example I have had a personal campaign against Foxtel for many years. Last year I sent them an email bemoaning the lack of captions on Hells Kitchen. Admittedly a crap show, but one that I am hooked on. I pointed out to Foxtel that this show already has captions because it’s made in America and the American’s with Disabilities Act demands it. Argued that because of this that there was no excuse for the lack of captioning. After a few emails they responded that they had got captioning for the next episode and upgraded my package at no extra cost. I was watching Hells Kitchen last night, as I have for the last few weeks, and every single episode has been captioned. It is but a small thing but it is very satisfying to know that my little piece of input has created this kind of improvement to access.
At the same time advocacy can be hellishly frustrating. Many years ago I was part of an active deaf student group in Adelaide. The group supported each other and lobbied to Universities in Adelaide for improved access, mainly through Auslan interpreting. Back in the 80s and early 90s there was very little such support in Adelaide. We had to rely on buddies and poorly paid note takers. Over a period of time things changed, particularly from 1993 onwards after the Disability Discrimination Act came into play. The DDA is virtually worthless now but back then it had a positive impact in creating moves to improve access.
I had meetings with my MP and the State Education Minister, and later Premier of SA, Mike Rann. I lobbied regularly to University disability support personnel. I wrote several letters to the Vice Chancellor explaining my difficulties. Eventually in 1993, my last year of study, we had a win and interpreters were provided. It was very satisfying but no sooner had I had this win than the academics started moaning about the presence of interpreters. Said one, “You can’t have interpreters when you go to work so why should you have them in my class?” I actually boycotted the said academics class and just completed his subject through reading and completing the assessments. He threatened to fail me but never did. It is this constant battling that makes advocacy so frustrating and tiring – Even when you have a win.
Deaf education has always been a bit of a passion of mine. I actually studied to be a teacher of the deaf for a time. But three broken legs and relentless partying put paid to that. Nervertheless, I have always been appalled about the state of Deaf education. When I was just 19 years old I wrote a letter to the Parents of Hearing Impaired group for their newsletter. I had witnessed, at my old school, relief teachers being employed as teachers of the deaf. I know not of their qualifications but I know they could not sign to save their lives. These teachers were expected to support kids in the classroom and communicate with them. The kids could not understand them very well. What is worse the teachers had no EFFING idea what the kids were saying. It was a recipe for disaster. I remember my old principal confronting me about the letter. Let’s just say he was not happy. So it was with great interest that I took part in the Deaf Education Forum hosted by Deaf Victoria on Sunday 20th March.
The main speaker, Julie Phillips from the Disability Discrimination Legal Service, basically implored participants into action. She insisted that the law was on our side. She insisted that the Education Department had an obligation to provide full access. She argued that they had enough money and that we should not accept finance as an excuse for no access. She was passionate, almost gungho. It was clear, to me anyway, she wanted us all to take on the Eduction Department and make them provide full access and quality education for deaf kids.
And I agreed with her 100 %. BUT – what of the parents who are fighting this battle? Well one got up and explained she had been fighting this battle for her deaf kid for many years. She has had to move schools and even when she had support the support was inadequate. She explained how principals would constantly argue that they were providing the best support possible with the money available, even though the mother knew this support was inadequate. She explained how hard it was for a parent to have to fight the professionals and how intimidating, even bullying, these professionals could be.
It was one thing for Ms Phillips to implore us all to get out there and fight the system but the harsh reality is that fighting the system takes its toll. As the mother said, it impacts on your mental health and even your relationships. It’s never ending and stressful. We all know that the Education Department is in the wrong BUT taking them on is hard work and there can be severe consequences for the people that do so, both personally and mentally. Hell I know one parent who moved from one end of Australia to another to get better access for her daughter and spent over a decade fighting the system. She lost and won court cases. The win was great but the toll on her health and her relationships was immense.
It is this toll that we often forget. Advocacy, particularly self advocacy and advocacy for close family members, is extremely stressful. You are fighting and complaining about the same things over and over again and often with little to show for the fight. It is not easy and while the wins are rewarding we should never underestimate how hard it is and the impact it can have on the individuals concerned. As one mother commented on Facebook after attending the forum – “Even though I am aware of the dismal outcomes for Deaf students in education, it is still, to this day overwhelming and emotionally draining when it is presented in plain facts.”
For some it just never ends. For parents- it is the parent trap.