Itches and scratches - living with disability

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.