Six and a Half Years of **it

My ongoing request is a complaint, like the persistent complaining of a broken record. It is simply pointing out the fact I have no cognitive impairments, just purely Friedreich’s Ataxia.

The repetition of this is so humiliating and frustrating, like a phonograph needle jumping grooves at a party that I am hosting. That I am in fact just like anyone else with individual needs of my own is a point missed by many.

Yes, my unintelligible voice, poor eyesight and abnormal structure all speak volumes, and are often louder than my needs! But why do people hear these disabilities, and read them wrongly? Or refer to them as a cognitive impairment and treat me as such, instead of listening to what I actually have to say? Who configured this mistranslation of my disability; where does the translation run off the record and where does the communication get lost? Why does the line from my intention go way off the path? Why is there nobody, except a small minority of support workers in shared supported accommodation, able to acknowledge the difference between purely physical and other types of disabilities? The problem is unjustifiably associated with the cost-benefit analyses of the self-interested. Why is there no remedial action, or training to combat this problem? Or maybe my question is simply too hard to answer ☹

But why is this? Why is my complaint being misinterpreted or mistranslated by many in the field of disability work? How did I get trapped in a foreign language, where only a few seem to understand me?

I haven’t learned this disability dialect. It has been forced upon me, and carries with it too many tenses, with too much tension for me and my uncomplicated needs.

How many times must I repeat myself?

Dare I say it again?

How many times must I repeat myself before those who should be taking notice, do?

Can there be different, respectful and user-friendly ways of helping to seek answers? Yes, but the problem does not lie with gaining answers, but the fact that the question itself is heavily misinterpreted. Some shared support accommodation support workers and management in Yooralla seem to often forget that we, including our disabilities, are still human beings with individual needs that must be respected.

Please, I need to be acknowledged for my needs, as I am a human too.

Support work in shared supported accommodation is so far removed from one on one support. One on one support provides a more relaxed and individually focused environment, where there are not many on hand time constraints to support workers to listen to my questions and actually understand my needs. Here, I am in control of the management of my own support workers, and they are given the chance to hear beyond my disability and severe speech impediments. To put it in this way, the phonograph will more smoothly be able to play records.  I was successful living on my own and having one on one support from 1994-2011; during this period I was more independent and in control of my own life.

However, in my perspective, the shared support accommodation where I have lived for the past 6 ½ years has jammed the needle in the phonograph altogether. This is due to the failing of some crucial processes, and allowing the impacts of standardized assumptions because of group and time factors, dictate the provision of supports. A clear example of this that I see every day is that the time needed to effectively understand me and my disability, are not being adequately satisfied. This can also be highlighted by the need for casual staff to be told at the time of handover about my very poor speech and eyesight and need for an individualised form of support. This is something that casual staff always act very confused about when I try to communicate this to them.


The need to show people the individual diversity of disability

This problem needs a much wider focus for addition to the curriculum of certificate IV Studies in disability. This course helps to give disability more of a mainstream focus, and this may be part of a course on the much needed diversity of disability supports.

There are many people with disabilities, to whom this is not recognised and acted upon. Adam Vogel (2015) wrote in ‘Speech disorder is an invisible form of disability’:

How we sound influences how we are perceived physically, intellectually and morally. For individuals with a speech disorder (e.g., slurred/slow speech, stuttering), those biases are often intensified leading to substantial social impact beyond the speech disorder itself.

Thank you to Bruce Wearne for his empathy and understanding in helping me with this piece. And the ‘thank you’s do not end there. Chrissy, my academic support worker in helping me with editing, reading and writing. Also thank you to Peter Cross for his advocacy.

Author: petergibilisco

Researcher, author and advocate. Bachelor of Business Accounting, PhD from Melbourne University. Dealing with issues involving disability.

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