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!
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.
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:
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