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Empathy not sympathy helps inclusiveness

By Peter Gibilisco - posted Wednesday, 29 December 2010


Of late my severely progressive disability; Friedreich’s Ataxia has maintained its advance on my bodily system. This is, I guess, what I have always expected. But for all that, it is a practical and theoretical fact that the near end results of this disease are simply beyond the reality of most people.

Many intelligent people who know of me, but have no idea of my determination, are caught in an intellectual "Catch 22" situation. That is, how can a person with such a severe progressive disability achieve so much?

Their taken-for-granted view of life, of success, of achievement, is somehow challenged because disability is equated with a lack of ability to achieve! How then are "normal" people ever going to achieve insight that this just isn't so? It just doesn't have to be! In some ways it reminds me that my own views on achievement had to be changed too!

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Or as Judith Snow puts it in her 20 minute speech on World Peace & Inclusive Transformation:

What I am saying is that I grew up knowing and being surrounded by people who knew that my essential functions were missing. There is a lot more to say about that, but for now what is important to understand is that what we think we know and what is really so can be very different things.

My biggest achievement to date is the recent publication of my book Politics, Disability and Social Inclusion. What am I to say about my experience that no major mainstream Australian publishing house seemed eager to touch a book on disability? Doesn't this only clarify at a deeper level the importance of such books and the subject matter they present to us? And so after many negative and disheartening attempts with publishers, I finally went to an on-demand publisher based in Europe and the US.

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I am sure that most readers have read of my earlier achievements, needless to say my biggest joy comes from the satisfaction of achieving something significant in relation to society's so called "norm". Therefore, such progressive achievements may put a new spin on the stigmas and disutilities that encompass the lives of many people with a severely progressive disability, like mine; please believe me, so many people feel condemned by such negative stereotypes.

This, brings us to and prompts us to ponder at a deeper level the subject of disability rights. This is from Wikipedia:

Although the concept of Inclusion incorporates many of the fundamentals of the ideas present in h uman rights, inclusion is for the most part a distinct social movement and should not be conflated with disability rights more generally.

Jenny Cooper in her article ‘Inclusion our destiny’  argues that the human race has an historical and monumental obsession with the idea that the "body beautiful" can only be portrayed by perfection. Such a portrayal, therefore, does not have a great track record of "including" people with disabilities.

But many will say this has all been tried before: integration, mainstreaming, normalisation; is there anything left to say on inclusion? Maybe not, there’s plenty left to be done and nobody seems quite sure what’s holding it all up. Is it bureaucrats not toeing their "party line"? The economy? Fear, perhaps? Fate? Or does the idea of social Inclusion or disability rights act as a handy tool for government in the creation of social dilemmas.

What is reality and what is the rhetoric? That is to say that the vision for change appears to be there but not the active commitment.

How is this to be achieved for everybody with disabilities? There are infinite forms of disability with infinite actions, which have been stereotyped in comical and other demeaning ways, basically due to a lack of education and an inability, or more likely, an unwillingness to enforce anti-discrimination laws.

Further to this Cooper argues that a primary example of this apathy to overcome stereotypes is particularly evident when it comes to people with severe disabilities. When the importance of treating all people equally is acknowledged, then the broad spectrum of people with disabilities confronts such good intentions so that this has been called "the last human rights movement".

But is this label not based on a hierarchy of stereotypes? Does it not define inclusiveness of a person with disabilities as the final frontier, and therefore suggest that it is the most difficult? I'm not so sure.

When the apparently impressive statistics concerning inclusion worldwide are analysed carefully, a closer look at the figures for the inclusion of those with severe disabilities, including speech impairments,and they are not as good as is suggested. They simply indicate a serious lack of attention to those with severe bodily disabilities. Inclusion is happening, but mainly for those with milder disabilities.

And so, how do government initiatives and practices in education improve the prospects for inclusion of people with severe disabilities?

For example. In his article "Disabled people struggle to find work"  James Massola argues that the crucial identifying fact is that for the time being there is an increase in the numbers of people with severe disabilities entering mainstream education. Statistics confirm that the number of students with a severe disability who attend mainstream education- has increased fourfold since the 1980s.

Massola goes on to identify the fact that public policy is in danger of leaving people with disabilities behind. But the growth in participation rates in education has not been matched by an increase in employment. As he puts it:

The growth of participation by people with a less severe disability was because of a strong labour market, but the improvement has not carried through to people with a more severe disability.

In conclusion, and to return to the analysis of Jenny Cooper:

.... we continue to stay in denial about who we are and still succeed as a nation. Disability is a part of what we are. Inclusion would acknowledge that. Destiny may one day lead us there. Or there’s always revolution!

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About the Author

Peter Gibilisco was diagnosed with the progressive neurological condition called Friedreich's Ataxia, at age 14. The disability has made his life painful and challenging. He rocks the boat substantially in the formation of needed attributes to succeed in life. For example, he successfully completed a PhD at the University of Melbourne, this was achieved late into the disability's progression. However, he still performs research with the university, as an honorary fellow. Please read about his new book The Politics of Disability.

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Politics, Disability and Social Inclusion

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