It is 2004, going on to 2005. I’m thinking about ‘identity’, and thinking about the person who in 2000 wrote:

To me, sexuality has been so important for my journey to enlightenment. That’s not to assume that enlightenment is an end thing, it’s a continual process. It’s a continual reassertion of the self, or reawakening of the self, and I believe it has a lot to do for me with sexuality. When your body becomes like an enemy, if you distrust or dislike your body, which often happens to people with disabilities, you often lose your sense of self. You have to reclaim your body. Sexuality is so important for this. It’s like a reawakening for your self, and pleasuring your body can be part of that reclamation.

She was confident, self-assured and sexually active.

I read it now and I think ‘My God, this is a totally different person’. Which brings me to the question: ‘Where is she now?’

In 1996 I started a postgraduate course in Social Work. By 1999, I had to drop out due to my Multiple Sclerosis. I was unable to write, my sight was getting worse and my fatigue was increasing. I did not feel able to complete my degree in Social Work. I spent time feeling frustrated because I knew I wanted to help people with MS negotiating their way through sexuality. I was aware of the lack of information and taboo surrounding sexuality for young people with disabilities. For the next two years I wrote openly and honestly about sexuality and the importance of it. This was a dreamlike period when I would write, publish and be paid. I had a nasty break-up with someone I considered to be a close friend. Other intimate relations started to turn sour on me, so much so, I gave up sex altogether. Then some people close to me started to disempower me by stating that I would never have an intimate relationship again. What used to be a very powerful libido diminished to nothing.

I am mourning for her, and for my independence, which has always been so important to me. I feel I have changed from being a confident, self-assured and sexually active person to someone who is overlooked, disempowered, a non-person in a wheelchair.

As an example, I recently encountered stairs going into the Comedy Club. My carer and I asked security officials how we could get in. The security guy contacted another guy by walkie-talkie, and said that there is a lady ‘with’ a wheelchair, rather than a lady ‘in’ a wheelchair. I feel I have lost my identity; I am trying to find it again and I believe I will, through writing.

Samantha Hodgkins

Samantha Hodgkins is a student at RMIT. She writes about social issues.

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  1. Samantha,

    Speaking as a writer and the parent of a child (a nine-year-old girl) with a disability, I’d like to encourage you to keep going. And write fearlessly.

    We need to hear more about what life is like for people with a disability directly from the men and women themselves.

    We need to hear more about the social issues — from education to housing to employment. And we need to hear about the human issues — namely, love and hope and sex and dreams.

    My daughter, Sophie, has an intellectual disability (Down Syndrome), but that should not preclude her from living a full life — including, when she’s a bit older, having relationships.

    The more taboos you break the better, as far as I’m concerned.

  2. Sexuality and disability — both physical and, to an even greater extent, mental — is not discussed nearly enough.I worked for many years in intellectual disability support, and no-one had a clue how to deal with sexuality and ID. In theory, everyone agreed that the disabled had the right to enjoy their sexuality; in practice, no support was provided to make that possible, since the whole issue raised so many questions that no-one wanted to confront.
    Of course, that was many years ago. Perhaps the situation’s improved since then but I suspect it hasn’t.

  3. Great piece, Sam – thought provoking.

    I think as an able-bodied person, I am afraid of asking others what their story is, for fear of offense, for fear of defining people by their outer appearance, for fear …

    Yet in reality, I ask able-bodied people what their story is all the time, when I’m interested … and no doubt am occasionally offensive!

    Articles like this are important to open discussion, create insight and dissolve ‘barriers’.

    Friends in the disability care sector (ID) tell me that sexuality is not well addressed and each carer/client has to manage it as best they can with their own resources.

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