Itches and scratches - living with disability

It is probable that everyone will get an itch somewhere, sooner or later. And so, when you get an itch, you do what comes naturally: you scratch it! It is a simple process that itches are made to feel better when scratched. Or so it seems.

But what if you can't scratch? I mean, what if you can't scratch where it itches because you have nothing to scratch it with? It may be an itch that is underneath your plaster cast that is in place to help with the healing of your broken knee-cap. What if the itch can't be localised? What then? It is not such a simple problem.

I happen to know a lot about the problem of scratching itches from a rather unique perspective How? Because I have a neuro-transmitter dysfunction that simply won't allow me to reach wherever it itches. So I have learned to cope, to block out the irritation. I have to admit that it is, indeed, a luxury when I am fortunate enough to have a very empathetic support worker who can help me by scratching my back or my ear, but I won't bore you with all the details of my relief because I have only raised this with another purpose in mind, a purpose I might add which might help our society understand the itches people like myself have to deal with.

I would like to draw attention to what disablement can mean to someone like me who suffers from Friedreich's Ataxia. I've been attacked by this progressive disease, since I was first diagnosed in 1976 when I was 14. Now I am confined to a wheelchair and need daily assistance with routine transfers, hygiene and most of my daily activities. Living with a degenerative disease has broadened my thoughts concerning disablement and allowed me to focus on the need for empathetic behaviour from those directly related to disability.

In 1981 I was 19. That was the year of the first United Nations International Year for Disabled People. You'd have to say that my life, with the progression of Friedreich’s Ataxia, since then has tracked the development of public policy that has, in significant ways, taken seriously the problems that disabled people have to continually and progressively confront.

In this sense mainstream society has begun to acknowledge disablement as a serious itch that needs to be carefully scratched with appropriate care, tools and resources that are outlined in just policies.

And so there are policies, legislation, a wider social commitment, education and programs now in place that show, in this country, that we have a significant society-wide compassion to assist those in great need. But, yet the itch is still not appropriately scratched!

Yes, we need ramps and railings that lead into public buildings. But, there needs to be something more. Let me tell you that I have received much, for which I am very grateful. And have come such a long way with so many people to thank. I often wonder, how can someone like me have got this far? And with a disease that has made a greater impact over my body as time passes.

I am now 45 and my care needs increase almost by the day. Yet despite this I have just completed a study tour in Hawaii visiting the University of Hawaii, Center for Disability Studies. My social enquiry in the US focused on how many people with severe disabilities yearn for, and are capable of performing, most human activities - with assistance from a support worker.

I was diagnosed with Friedreich’s Ataxia at 14 and then my mother died of cancer when I was 18. I was well and truly on a downward emotional and physiological spiral. By 23, I was confined permanently to a wheelchair. But it was also around this time, with the encouragement and perceptive advice from a close lady friend which lifted me out of a fantasy land of self-pity, that I began studying for an Associate Diploma in Accountancy at Dandenong TAFE. That inclusive and happy learning environment gave me inspiration to tackle life with vigour and it still serves as a reminder to me when, like anyone else, I develop the usual emotional itches which need scratching. That was my 1984.

But that year, 1984, reminds us of something else doesn't it? Since then, my life has been not unlike the problematic world that George Orwell describes. It is especially relevant to people like myself who are really very grateful for all the special consideration, no matter how insignificant, equal opportunities and affirmative action we have received over the years.

But why is it problematic? It is problematic in an Orwellian sense because we know that if we raise a voice in criticism, even if we are trying to be constructive, we put ourselves in an exposed situation. After having traveled so far, with so much kind assistance, it can too easily sound like we can never be satisfied and can never get enough freebies.

It's as if after graduating with my PhD, and then in 2007 when I was presented with the Emerging Disability Leader of the Year award, I developed a new itch, but just didn't know where so it could be scratched. My PhD thesis, my academic journal articles and my On Line Opinion pieces were all being applauded but, somehow, the major issue I was trying to discuss was being ignored.

I think public policy towards people with disabilities, and in particular severely disabled or progressively disabled, has ignored some important factors to the detriment of our society.

First, I will sound like a broken record by offering my analysis over and over again; and second, our society cannot be, or become, the compassionate solidarity it claims for itself if it doesn't hear what I am trying to say. I have a sense of obligation here to speak out. It's not just for me, although I am painfully aware of its application to myself and to my own situation.

The point is this: for some of us the special consideration, equal opportunity and affirmative action, designed to get disabled people into the mainstream, paradoxically brings us to a more exposed and needy situation. This cannot be addressed without more special consideration, further and ongoing application of equal opportunities after training is completed and further affirmative action once we have obtained our qualifications. It is a simple point that can be readily illustrated.

This illustration of policy dynamism is based on the approach I have identified as pragmatic social democracy, advocated by Hugh Stretton and Marta Russell, in my Doctoral Dissertation.

Once a person with a severe disability at TAFE, for example, receives a diploma then society's responsibility to that person is not somehow fulfilled, because at that point the obligations have actually increased. The person may need special support to attend interviews, and when that person is offered and accepts a position of employment it may be necessary for technical and other assistance.

I could repeat this point for each of the steps I have made through my own higher education: TAFE Diploma, Bachelor of Business, Bachelor of Arts, Master of Arts, and Doctorate of Philosophy. There are other facets to keep in mind as well. Somehow we need to find a way to view and support people with a disability in pro-active methods of equal opportunity; rather than focusing on the medical model's view of a sympathetic approach: people with severe disabilities need an empathetic approach, aligned to the social model. My assertion is that society's responsibility increases in specific ways oriented to professional commitment and involvement, once the student with a severe disability graduates.

But, as my own needs, and possibly those of others, have increased or are increasing, support is not only to be seen in educational terms. The dynamic of increasing support reflected in policy should also seek to meet the increased needs which the policy at an earlier point has also helped to bring about. There are also increased needs of those who support, as well as, the increasing needs of the person with a disability.

For a TAFE graduate like myself, I was faced with a daunting prospect. I had a wonderful Technical and Further Education experience, which affirmed me as a mature-age student, and I was no different in some ways from any other TAFE graduate: “What next?” we asked. Leaving TAFE for all of us in that year was a life changing experience, but life moves on.

Life moves on. That is the irony that is central to my attempt to point to the dynamic at work here. But the paradox is that not all of us, and not all disabled people, have to deal with a progressive disease. To apply for a job in an accountancy firm after my graduation from Technical and Further Education would have been to ask the prospective employer to initiate a general policy change that we, as a society, were only just beginning to think about let alone implement.

The political consideration of equal opportunity and affirmative action was still at an early stage. So, as I look back on it now, it is no wonder that I was attracted to the higher education field which proved to be more advanced, and hence more hospitable to me with my particular needs, than most other areas.

I am the beneficiary of higher education which has been required to make room for disabled people. But then, it seems that higher education was also being re-oriented to make it compatible with job training for a post-industrial society. In such an environment, as Marta Russell has pointed out, a university degree becomes the evidence that society has met its obligations to help disabled people compete. Equal opportunity was not always matched with appropriate affirmative action.

In this respect I would suggest that affirmative action needs to be taken to a new level. And perhaps this new level cannot be reached without recognising the ongoing obligation which a degree-granting institution has to its graduates. Understanding mutual obligation from the institution to its highly qualified graduates is downplayed if not lost entirely.

In my own case, a university which takes a qualified post-graduate student with Friedrich's Ataxia into its PhD programs, should not view itself as giving a sympathetic expression according to the medical model's agenda, which has the unfortunate ability of systematising disability policy pursuits. Although that is, I am sorry to say, the predominant way in which Australian higher education under third way and neo-liberal policies tends to view such achievements.

That's the itch I have wanted to scratch. We need universities that will recognise that their institutional mutual obligation is not transacted merely by granting degrees and then every year thereafter sending out brochures inviting its highly qualified alumni to give generously to the university's noble cause.

In my case I am forced to ask: How is it that the university has not required me to give back by post-doctoral research and to be part of its ongoing research effort? How is it that it can take on a candidate without expecting to maintain its responsibility to provide ongoing support after graduation, and also, in order that its own research work is enhanced by my contribution?

Note, my point is not to ask that my work be judged before I do it. I am referring here to the lack of effort or empathy that seems to come from the side of those administrating higher education institutions in Australia.

Writing On Line Opinion pieces, or developing my own Blogspot, are indeed satisfying experiences and I would not want them to be taken away. But such personal satisfaction at getting a paper published is not the main game. What I am concerned about is the development of genuine policy for the severely disabled, and in particular, policies that will seek to meet needs that arise from progressive disability.