At the moment I am spending my time researching the National Disability Insurance Scheme (NDIS). It is proving to be a very disheartening experience. This is because it’s written in a bureaucratic, business style that in my opinion is a huge step backwards. It simply doesn’t recognise where people with disability are at in 2015. But I will leave NDIS to the experts for now. This blog relates to something else, which I keep thinking about every time I read disability policies.
From a young age we are all told sticks and stones, will break my bones but words will never hurt me. Something I have lived by for most of my life because I didn’t think I had much choice. I mean if I reacted to every situation where I was looked upon or treated in an unfavorable manner I would be angry all the time. Therefore when seeing inclusion take over in the last 5 to 10 years I wasn’t that impressed. I regard inclusion as a great concept, it just doesn’t represent diversity as well as it could. For example there has been a tremendous effort put into guides about how to write and communicate with people with disability in recent times. Something I felt was unhelpful. To me having these documents available to the public made me feel more isolated from society than I already was. Whenever I read these guides I would get the same feeling. Great as if there isn’t enough to keep us segregated now we come with a manual. Furthermore I thought it was a complete waste of time because there are far more pressing needs in the world of disability than this. Lack of opportunities, funding etc immediately coming to mind. And of course I am a man I’m immune to all this. From physically challenged to differently abled, I have heard them all. I feel ambivalent about all these terms. To me it’s always been more of a concern for able bodied people. Meaningful words don’t accurately describe disability and long time advocates will hopefully agree with me that words don’t usually lead to attitudinal change. Well I must admit the grumpy old man does come into it too. After all it’s not that long ago that Scope was called The Spastic Society.
Lately though I have been forced to give in. In my previous job there were times where inclusion and wanting to be considered an equal didn’t cut it. I would find myself in situations where I thought nobody with disability would be able to handle this. I would make light of it saying to my superiors you’re lucky it’s me, as I was determined to focus on the work.
Behind the scenes though it did take a toll. For the first couple of years I was fortunate to work with my mate Shawn. While he moved on we still keep in touch as often as we can. On the surface we have the typical male relationship putting each other down wherever possible. For me though he is one of the few people I know that understand my challenges. Those that not only come with having disability but also as a man (not that I want to reinforce his inflated status). Our many conversations have led me to believe we could do the NDIS better than anyone. Our version would still blow out the budget, it’s just Shawn would have the ability to convince people to give us more funding.
In recent discussions, when talking about my frustrations he came up with something I had not taken into account. He suggested there was a cultural sensitivity around disability that was not widely understood. Shawn as he does had made a significant point. The world doesn’t know enough about disability. In fact, the neglect that still goes on and the impact that has, is not well known.
Keeping this in mind I started to be more proactive. If the opportunity presented itself I would be more open to speaking about the realities of life with disability. This happened when a mate and I were talking about the disability sector and he mentioned the word clients. Shaking my head I said “clients that’s the C word in disability”. We both laughed, then stopped and reflected. It was clear to us that there was something profound about the statement. Maybe this was how I could raise concerns in a positive manner but I didn’t know how women would react to it. To make sure I tried it out on one of my poor suffering occupational therapists. When she was not offended I decided to stick with it.
As much as even I struggle to not express my feelings out of rage I don’t think this helps people with disability. The word disappointment is a far better word to explain much of what goes on. This is certainly the way I feel whenever I read or hear the word clients. Primarily it’s because support work agencies and disability employment providers have tarnished the word. In initial meetings these organisations will tell people with disability how they are valued and that they have their best interests at heart. Months, sometimes years later I have found myself no better off than I already was. When I have asked for more from these organisations (usually what I thought I was entitled to) I get a long list of excuses. The government won’t allow us to do that, you have complex needs, it goes on. Hence my reaction to the word client. While I don’t need an excuse to quote Iron Maiden this is the ideal time to do so. In their song The Prisoner there is the line “I’m not a number, I’m a free man”, which sums up my sentiments perfectly.
What’s interesting is that people from the business sector are not used to this. Apart from client words like not for profit and nonprofit have lost all meaning. I think so little of these words that I was impressed when the founder of a new attendant care provider recently told me they were nonprofit for tax purposes. It was refreshing to hear such honesty. When it comes to attendant care providers it’s too often cost cutting over being helpful. Agencies removing penalty rates for carers on weekends and public holidays for business reasons makes life incredibly difficult. It becomes a challenge to trust an organisation that does this because they are putting their needs before mine.
And this is only skimming the surface. The problems that come from this are detrimental to people with disability. To be continually let down by those who are supposed to know better definitely has a negative influence. And even though there is change the disability sector doesn’t do enough about it.
What I reflect on is that I am not naturally assertive. To think about what I want and need is daunting. Mostly because history hasn’t allowed people with disability to think this way. Unfortunately this seems to be being ignored or worse people don’t know the problem exists. Somewhere like Inclusion Melbourne are closer to where people with disability are at. Sure they make it seem like we all need a hug (then again it depends on who is offering them) they just have an understanding others don’t. That being that business language isn’t the best approach to improving the lives of people with disability. For me it’s definitely the E words encouragement, empowerment and effort.
It’s always reassuring to think of a place that is leading the way that has nothing to do with disability. Which is why I can proudly say somewhere that gets it right is All Star Comics Melbourne. Wherever I go I seem to attract difference and the nerd/geek culture is certainly that. At All Star this is embraced and welcomed. Their annual Free Comic Book Day event a particular highlight as it has a festival like atmosphere. It is indeed a community there and I would be insulted If they called a customer (I know I’m not the only one). This is because I have too many deep and meaningful conversations whenever I am there. That is if you feel the need for a toy A-Team Van is deep and meaningful, which I do.
Then there is Adam Goodes who has become an interesting person in Australia. Whether I agree or disagree with him or not doesn’t really matter. He continues to bring attention to issues that matter to him. He always at least wins half the battle because he gets people talking and this is the real problem.
When seeking advice for this blog I was asked, if clients is disrespectful, what would be a better term. A question that has come up before when I have been asked to edit disability policies. Whenever I see the word I always replace it with person/people with disability but there is no obvious alternative. And this leads to a more complex almost contradictory blog. This is because there are many labels that have been thrust upon me that are offensive for different reasons. Let’s just say that I find myself trying to separate myself from labels more now than ever before.
Clients just happens to be one of those labels. It’s not that it’s a horrible word it’s more that this and many other aspects of life with disability are not even debated. And people with disability continue to accept it, which makes it near impossible to improve. I think it’s time for a change.
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