Time To Speak Up

 Time To Speak Up, originally posted on ABC Ramp Up and cross posted here with kind permission, thank you.

It's important to remember that as disabled people we are fighting these battles across the world, our Australian cousins need us more than ever now that James Purnell is peddling his poverty pimp plans Down Under.

When I realised that there was going to be an NDIS (National Disability Insurance Scheme) discussion at my university, Latrobe Bundoora, I was pumped-up and excited. 

The discussion was to be hosted by Professor Robert Manne as part of the Ideas and Society Program of debates and public lectures. Many big guns in the Australian disability sector were speaking. John Della Bosca (Every Australian Counts), Dr Rhonda Galbally (Chair of the National People with Disabilities and Carers Council), Jim Mansell (Emeritus Professor of Learning Disabilities) and Bruce Bonyhady (Chairman of Yooralla) were the orators at the event.

As I said, I was excited - there was a relevant discussion being held on my campus at an extremely convenient time for me! Unfortunately, I almost missed out on the event due to a surprising lack of promotion. The equality and diversity centre on campus had no flyers up, and it was only due to my procrastination leading me to find a notice on a nondescript pin board that I discovered the event. From the lack of promotion, anyone would think they didn't want anyone to attend at all.

When my class finished I leisurely drank a cafe latte in the sun until it was time for me to head over to the building where the talks were being held. When I entered I was stopped by staff and told that those in wheelchairs should wait to be seated in the designated positions. But I'm postgraduate, I do what I want - I'm cool in that way. I said thanks, but told them I would find my own seat. Making my way to the front I noticed a distinct lack of disabled people, was I early? They weren't waiting in the foyer either.

And yes I know many disabilities are not visibly obvious, but still, I was pretty surprised to be the only guy in a wheelchair. Surely my disabled compatriots wouldn't be too far off, after all, it was only a three-minute walk from the coffee shop.

In the crowd there were plenty of men and women in suits, though I wouldn't have thought they were the target market for this discussion. I waited patiently as more suits shuffled in along with a fellow wheelchair user. That's better I thought, but still, only two wheelers? The main attractions then arrived, taking their positions at the table. Rhonda luckily brought her portable ramp in order to reach the stage, saving much (deserved) embarrassment for those who organised the event. Regardless, things were about to get interesting.

A cavalcade of wheelchair users and people with Down Syndrome then entered the room all at once. Coincidentally, the cameras had begun rolling. I feared a standing ovation, but luckily that didn't come to pass. 'The disabled' went to the designated seats where I was supposed to be - near the back, like in the cinema.

I was shocked that I didn't recognise anyone at all from my university, let alone any fellow disabled students. I would have assumed at least one or two would attend, but I was wrong.

Bundoora is by far the largest campus of Latrobe University, and it would be a safe bet to say that there are at least 15,000 students. I could count maybe one or two people in attendance who I would hazard a guess as being students (no suits), in addition to me. And none of them 'looked' disabled.

Disappointing.

Still, I was there for the speeches and discussion, not to analyse the crowd as was taught in my market research subject. And the speeches were great; the audience was told that the disability support system in Australia is "underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports." I nodded my head in acquiescence.
My cynical marketing brain went to work. I couldn't help sense a degree of detachment from the issues in Bruce, John and Jim. From an anthropological perspective they were all big masculine men in suits, 'providers' if you will. They definitely were not the ones needing government support for illness or disability.

Little jokes were made with regard to whether the NDIS bill would get through the Parliament. Rhonda Galbally wasn't smiling at these jokes, and neither was I. And it wasn't because we don't have a sense of humor. There were no smiles because Rhonda understands the severity of the situation, and though she herself is now an extremely successful philanthropist, advocate and businesswoman - she would have definitely benefited from increased disability support during more uncertain times.

Now those reading this may suggest that I'm trying to create divisions, and to portray it as an 'us vs them' situation. That is sincerely not my goal. I did, however, genuinely sense a degree of detachment in some of the speakers.

During her speech, Rhonda raised the issue of disability welfare related protests, or rather a distinct lack of them. If a situation of underfunding the magnitude of that which exists in the disability sector was apparent in the arts or education sectors, there would be mass riots in the streets. And this isn't to say that the arts or education areas are funded adequately' it just goes to show how comparatively bad the disability sector is in Australia compared to everything (and everywhere) else!

My above point raised another issue in my mind; who exactly were the people in the audience if they were not students or people with a disability? Why hadn't there been any protests? It soon dawned on me that the majority of the crowd were representatives from service providers. Advocacy organisation representatives, charities, personal care providers and Victorian government delegates were there in spades. But where were the people with disabilities? At the back in their designated corner, that's where.

The concept of advocacy is based on someone representing you, and/or acting on your behalf. Similar to the functions of charity organisations, service providers and the like; limited staff act on behalf of a multitude of clients, carrying out their requests. Can you see the problem here?

Again, I may just be cynical, but if one advocate in an organisation represents 20 people with a disability, and there are 10 advocates in the organisation fighting to rectify the dire situation the strained disability sector is facing, what happens as a result? The advocacy organisation sends one letter on behalf of 200 clients, or if you are lucky, there are 10 letters mailed out, one from each advocate.
Ten letters delivered, not 200. A hundred service provider representatives in the audience at the event I attended, not 2000 people with disability. A thousand advocates in the street capital protesting, not 20,000 outraged cripples.

I understand how crude and simplistic the above examples are, but the essence remains the same. In order for real change to occur, people with disabilities can no longer palm off responsibility to our carers and advocates. We can no longer accept our shameful situation as the status quo, and if we want change we must make our collective voices heard. Be your own self-advocate, tell the general public and the government what you really want. And yes, I know this is hard, I know you're tired of fighting, fighting just to stay afloat. But if there ever was a time to struggle, it is now.

Yes, increased individualised funding may lead to many disability charities dying out. But people with disabilities don't want charity. Subpar service providers may shrivel and die, but only because of increased competition and choice. Advocacy organisations may shrink, and be required to switch their focus to solely represent those who really can't advocate for themselves. But this is a cost worth enduring for a better standard of living. A standard of living we are owed.

Don't expect your advocate or carer to attend the next NDIS meeting on your behalf, go yourself. Chain your ventilator to Parliament house in protest, park your 200 kg wheelchair on Capital Hill with your brake firmly on and don't budge. Make a stand, even if you can't stand. Make a difference. Otherwise we're all screwed and we will continue to be pitied. I don't want pity, I want respect. How about you?

Carl Thompson recently finished his Business Bachelor and now plans to relax before he joins the 9 to 5 grind. He blogs here.