The Individualism of Sex and People with Friedreich’s Ataxia

I am a 55-year-old male, who was diagnosed at 14 with Friedreich’s Ataxia. This is a progressive neurological disorder, which eventually leaves the person with severe socioeconomic and medical problems. Many people, from most walks of life, believe they know best and want to stereotype people with Friedreich’s Ataxia and to tell them what they can and can’t do.

I live in a residential care home run by Yooralla. In my opinion, speaking as a resident rather than as a customer, Yooralla has a number of broad-brush policies that pigeon-hole their ‘customers’. The superficial use of the term ‘customer’ is loaded with stereotypes, especially when linked to the many people in Yooralla’s residences who have high support needs, regardless of the nature of their disability.

For example, when we consider the words ‘consumerism’ and ‘customers’, we see that these are based on the commodification of products. So how can this link to people with high support needs who have varying disabilities? The term ‘customer’ does not characterise people with high support needs. 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.

It’s my opinion that many stereotypes are employed by the uneducated, or by those who simply have not bothered to give the problems of those with disabilities much consideration. This can be highlighted by two majorly stereotyped items: sex and severe disability. Both are 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.

Sex and severe disability are an important foundation of humanity and, therefore, must be treated respectfully and individually. 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. There is a policy failure on the part of my support providers at Yooralla, because they do not take into account my personal issues and circumstances.

Yooralla’s sex policy

From when I was 28 years old until I was 49 (1990–2011), living on my own was great. It allowed me to exercise my 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, sex became, what I would call a sensible need and want of any person with a physical disability. 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.

For example, back in 2011-2013, I used to attend one of Melbourne’s high-class brothels, accompanied by two Yooralla support workers, who reasonably supported my wishes to be able to have a good time. At this stage of my life I was a bit more financially liquid after the sale of my unit, and therefore was able to provide for the needs of my support workers by buying them both dinner. I endeavoured to make these excursions as enjoyable as possible for all concerned.

For me, especially, my visits to a brothel were great fun. We would leave by about 5 pm, then we’d enjoy dinner and some spirited conversation, sometimes about what was going to happen later. When we got to the brothel my support workers would sometimes play pool, while, for me, the rest of the evening was a foregone conclusion. My support workers never engaged in any sexual activity; the sex part was only for me.

To me, sex is a 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.

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I am 55 with Friedreich’ s Ataxia, medically diagnosed at the age of 14 . I exercise every day and believe in the philosophy, ‘if you don’t use it you will lose it”.

Yooralla’s sex policy (2015) stipulates: ‘(employees must) protect the safety and well-being of the customer and, as such, employees are not permitted to engage in facilitating access to sex workers that are contrary to the (guidelines that are outlined in the policy)’.

However, Yooralla has not followed this policy, instead telling my support workers that they are not allowed to attend a brothel with me.

My needs are explained in this document, as someone with Friedreich’s Ataxia, pertaining to dealing with sex and Friedreich Ataxia (pages 94–95).

I recently undertook a trip to Thailand, which was planned with the assistance of my regular, and very much appreciated, Yooralla support workers, as well as my academic support worker. However, my frustration regarding this trip was due, in part, to Yooralla’s failure to give timely information concerning its vacation policy (2016) as stated in my previous post. I requested information about the vacation policy three months before I took my trip, however the information was only provided to me about a month before I was due to leave. This ‘do or die’ trip (for me) is best summed up with this scenario: I was like a kid in a lolly shop, but there was no way of communicating my needs. This was really hard for me, what is a seemingly simple process for anyone else with normal functioning. With that being said, I think that I may have needed to be more upfront with my support worker for this trip, and may be if this was done, the trip could have been more enjoyable.

In conclusion, it’s my pragmatic belief that Yooralla has dismally failed to treat me as an individual in this instance, regarding this very sensitive and personal issue.

 

Special thanks to Christina Irugalbandara, my brilliant academic support worker and to Susan Prior for her excellence and professionalism in editing and proofreading. See her work on her website: www.write-now.com.au.

Author: petergibilisco

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

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