Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia

 Introduction:

I want to discuss a disorder that afflicts me. Friedreich’s Ataxia (FA) will eventually leave the person afflicted with severe socioeconomic and medical restrictions. And because of this many people with FA are constantly subjected to stereotypes, as losers. We are unfairly harassed, and our abnormal features and functions as a result of the disability doesn’t make our life any easier. Believe me. My experience is that many people – it doesn’t matter what walk of life – believe they know best for an FA suffered and will then apply the stereotype to tell them what they can and can’t do.

Does this sound fair to you?

Background:

I live in a group (residential) care home run by a big name disability service provider.

In my opinion, speaking as a resident rather than as a customer, the use of such spurious “customer” or “client” lingo seems to give the service provider permission to further stereotype us by the standardization of procedures they are required by law to maintain for all residents. The spurious use of the term ‘customer’ is loaded with stereotypes, especially when linked to the many people in the residences who have high support needs, regardless of the nature of their disability. I would further characterize the modus operandi of the service provider; they have a number of broad-brush policies that pigeon-hole their residents.

My Professional Diagnosis of Stereotyping in the Disability Service Sector:

Disabilities are an infinitely complex social problem with no ‘cookie-cutter’ socioeconomic and medical remedies.

Why do people with disabilities get stereotyped? This question needs a political answer. Personally, I think it is bound up in the ‘winner’ and ‘loser’ mentality of post-modern capitalism or “trumpology”.

It’s my opinion that many  stereotypes are employed by those who are channelling what compassion they have to give support to political extreme movements, for example, One Nation. Is this simply a function of their lack of education, or could it not be that they have simply not bothered to give the problems of those with severe disabilities much consideration?

Let’s delve further: Disability and Love-Making.

I want to discuss some delicate matters that are central to the power of stereotyping of people with severe disability. You have already read the title of this piece so, yes, you know that I’m going to talk about: SEX, sexuality and sexual expression. Miss SEX with DISABILITY and one has a power glue to make any stereotype stick.  Both sides of this complex relationship – sex and disability – suffer from intense stereotyping and for unethical reasons encapsulated in love–hate principles: you may love or hate sex; and severe disability engenders emotions that are spurred on by love–hate factors. These emotions and factors then tend to be stereotyped, unfortunately some, not all, view this in stereotypical ways, and hence they are created via word of mouth or the texted word of mass and social media.

Sex and severe disability present us with an important foundational dimension of our shared humanity and, therefore, must be treated respectfully and humanely. Unfortunately for me, my Friedreich’s Ataxia has allowed me to still have full sexual function, which, at my age, only serves to increase my frustrations. (Am I challenging another stereotype here by publicly admitting my sexual frustration?) There is a policy failure on the part of my support providers, because they do not take into account my personal issues and circumstances.

From when I was 28 years old until I was 49 (1990–2011), living on my own was what I needed. It allowed me to exercise my thoughts and individual rights as a person with a severe disability. Even before that time, my life was not ‘normal’. But, even so, I had my heart set on doing things that I could adequately perform, such as getting an education, including my PhD. Study was difficult but I managed to find the correct balance between human wants and needs. Likewise love making is what I would call a sensible need – a legitimate want of many people with diverse severe disabilities, including FA. Such needs and wants are dependent on an individual’s motivations to find their own happiness and the freedom of choice to participate in society as an equal citizen.

To me, love making (I also mean it in its widest sense as well as the physiological too) is the key means of alleviating my frustrations. It is one of the few things I can still physically perform, and something that I still have control over. But control in this matter can only be furthered by mutual respect.

Service Provision and Furthering Mutual Respect:

Some disability service providers have a strict ‘one size fits all’ policy. In shared supported accommodation administrative costs of disability support conform to a common paradigm that doesn’t take, say, my “furthering of mutual respect” into account when allocating resources to fulfil my needs. Dear reader: I hope I am making sense to you – as I said this is a delicate issue. Now ‘Why is this ‘one size fits all’ policy that ignores this – what in the old days would be called my “courtship” – in place? That’s the question that I think needs to be considered by these newly Government induced “disability providers”.

I’m making the outrageous suggestion that “disability providers” in extending respect need to respect my need to “further mutual respect” in my – how shall we call it – courtship activities?

Does the administration of such a “provider” work for the people with severe disabilities be discovering and meeting their basic care needs? I was a direct employer for DHS and have first hand knowledge of the way service providers rip off the system. Is the application of existing policy just another way of creating funds for self-interested disability service providers? Is the development of new policies by discovering ways of meeting needs that have been overlooked previously just another way of creating funds for self-interested disability service providers? Or are we going to see all disability service providers – whether public or private – developing a cohesive policy confrontation with the social dilemmas that will arise from a political desire to give due respect to all the individual aspects of disability needs.

Reckoning with Intelligence in Disability Service Provision:

Now here’s my point. I’m not wanting to denigrate those with severe intellectual disabilities. I’m not wanting to without respect from those on the autism spectrum. But I’m quite sure that if service providers were to emphasize their concern for and alliance with individual aspects of disability within their tendering bids for contract then they would be opening up new avenues of public recognition that would be confronted with the reality of disability rather than its stereotypes. What am I getting at? It seems to me that disability service providers can forget the people they are serving during the tendering process and simply standardize people with severe disabilities with ‘one size fits all’ cookie cutter stereotypes for cost effective reasons. Most people with FA are in fact extremely intelligent. And so, why is it that I continue to confront my own condition in a stereotyped misrepresentation that views it as an intellectual disability? Hello. It’s me here writing this! Friedreich’s Ataxia is not an intellectual disability? Let’s put it in plain speech: it is just some symptoms that confuse those who will instinctively reach for the stereotype in order to ensure the misapplication of disability related stereotypes to people like me.

I now wish to emphasize that my concern to discuss what I have called ‘love making’ is in fact not an obsession that derives from an intellectual disability. It may have taken on obsessive characteristics because of my slurred speech and my inability to explain what I’m getting at. And maybe such appalling stereotypes are justified in so far as I realise it is difficult for people to get the point. Haven’t I been tempted to think of myself in such terms and haven’t I had a struggle to actually say what I now realize needs to be said, delicately but firmly. But presently, without any coordination or mobility, my enjoyment in whatever I can ‘perform’ in ‘love making’, is still enjoyment. Getting older and wiser allows me more control of let me be blunt about such a delicate matter of powerful involuntary movements. In turn this allows me to better understand what sparks of these. In this case, love making becomes an extreme pleasure. This then allows me to feel that I have given respect and not just been respected. In other words, the control of my involuntary movements to further mutual respect makes my efforts of love-making, when they happen, very satisfying.

Conclusion:

But as I say, trying to discuss such matters in a “relationship impact assessment” as I am trying to provide here for those organisations involved in “disability service provision” is not the easiest exercise. I am saying that the need to be involved in furthering mutual respect is universal and some of us need special attention to have appropriate space in which to fulfill this part of our responsibility to ourselves and to others who come into our lives.

 

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 and to Donna Roberts for her support.

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Author: petergibilisco

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

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