Bfriend

This is my story for the past two and half years of my personal struggle. I share it with you so that I can give you an example of my experiences. Gay women with different abilities frequently face the prospect of being invisible to the general community. It seems no one knows we exist and perhaps few people want to know. Yet we do exist and have much to offer and give, just as others do. Feeling invisible in society because being women with differing abilities can have a devastating effect on our lives. My injury and its wide-ranging effects have turned my life upside-down. Understanding the needs of those who are gay and differently abled. It requires an awareness and sensitivity for the issues we face, and to raise awareness in the gay community and in the straight community. Being out and proud I find the gay community has shut me out. They seem like they “don’t want to know”, and maybe some want me to disappear. So, here is some detail of my personal story and experiences.

Part 1 My story

a) Being gay, ‘emerging out’ and what that involved for me in life.

I knew from a very young age that I had these feeling for women. It wasn’t until I was about 15 that I knew I was gay, but as a child I didn’t realise what these feelings meant.

When I was about 23 I came out, however I didn’t have any real problem about my sexuality. In the general community I have found if don’t tell them they don’t have to know. If they find out I am gay there’s nothing I can do about that. It does not worry me if they know I’m gay.but I generally don’t tell people because of the risks of violence, fear and humiliation. Only my friends know.

b) My tumour, my treatment, its effects & how life got turned upside-down.

In March 2001 I had trouble with my signature. My writing was wobbly. I knew something was wrong but didn’t know what. In June 2001, when I was 29, I found out I had a brain tumour that affected my right side of my body. I was devastated beyond belief. There were lots of emotions I felt but was dealing with them was another matter entirely; thinking ‘I am going die’ and there was nothing I could do.

Dr. Brian Brophy at Flinders Medical Centre did a brain biopsy. CT scans and MRI scans found a low-grade glioma. This means that I have a tumour in my brain. They think it is benign but is also in a place hard to reach, so it’s inoperable. Recent scans showed there was no clear evidence of progression or recurrence of the tumour.

I had 36 treatments of radiation therapy. Going to hospital everyday was very draining and tiresome. I felt really alone and scared that I had to go to the hospital every day by myself for six weeks while I’ll I had my treatment. I felt so abandoned and isolated I didn’t know what to do. I felt like I was being punished. I felt a cover of sadness engulfing my whole body, mind and spirit. I didn’t want to die.
The big killer was my depression. I couldn’t get out of the little box in mind that was my depression. The only thing that kept me from taking my own life was "Winston” my dog. I was angry, enraged, terrified, scared of dying because I didn’t think it was time to die. I also was losing my hair from the radiotherapy treatment - GOD I was going bald like my father!

c) Physical changes from my injury - how they make a difference in my life.

During treatment looking in the mirror I was a shadow of my former self. I was very sick. I was pale & puffed up. I found could only walk very short distances when I was having treatment, whereas I was use to be fit. My right side became weak and less coordinated. It was very lucky that my eyesight wasn’t affected and didn’t suffer from headaches. My sex life went out the door. I also had to change my diet that I found extremely hard. I had to stop smoking and drinking and had to start eating very healthily.

Since treatment, things have improved a bit from me doing exercises. I still have a limp (but it is getting a bit better…. Its taking years though). My right arm and hand are still really hard to use. This makes many things in life hard especially as I’m mostly right handed…. like typing and writing (I have to do left handed), and putting the clothes on the line. Getting dressed is a real effort for me as is gardening, taking my dog for a walk, and catching the bus. Now I can’t play my guitar, which I used to love. I also get more physically tired as my mind goes blank. This is what my life is like now.

Catching the bus pissed me off so much that I didn’t want to go on the buses and I actually wrote letter to the Minister of Transport, the Member for Norwood, the General Manager of Serco, the Chief Executive of the Passenger Transport Board and a Disability Discrimination Advocate.
I expressed my frustrations about how hard it is to get on the bus, put tickets in the ticketing machine, get a seat and get off the bus. I have had replies from everyone and feel glad I have got my message out there.

d) Cognitive functioning: by this I mean things that are the thinking skills we use for planning, making decisions and relating to people.

These are described as “Hidden Issues” because they cannot be seen, and yet they have a huge impact on life. I have identified that I can be easily mentally fatigued; my memory is unreliable but is a lot better. I have a short attention span and find it hard to have more than one thing going on at once. My thinking speed is slower. Sometimes my head likes to jump ahead of me and make mistakes before I can check them. I have difficulty adjusting to changes and can be easily overloaded. Noises can go though my head like pounding waves and drive me crazy. In crowds I also can feel claustrophobic.

Arranging thoughts in my mind is easy however arranging my thoughts into writing is challenging. It can also be hard to get my thoughts into words when I speak. I know what I want to say, but it gets frustrating to explain to people. If I’m relaxed I lose the effort & struggle and it helps. When I get tired, stressed or frustrated, it gets even harder. I have to try to remember to stay calm and slow down so that it can help with my speaking. Talking to people can be hard and many times it is easier to leave it. Except that is a problem because it can stop me socialising with people. It also makes it hard for me to get my thoughts across. It’s really frustrating.
I attended a Brain Injury Network Of SA (BINSA) course at Uni of SA, City West campus, one day a week for 10 weeks. I finally found out after two years what was happening to me. I thought I was going crazy at that time in my life.
I am now improving and my reaction time have improved enormously because I now play table tennis, go to the gym and do yoga. Yoga has help to focus on many things around me. I am now calmer more reflective on my life.

e) Emotional\personality functioning:

I was emotionally ‘fragile’ and was easily brought to tears everyday from about May 2001 till about Oct 2003. Yes I cried everyday, all my emotions; the hurt from so many people was astounding to say the least. Telling people I had cancer changed everything – they would want to know things but wouldn’t want to really know how things were. I have been basically alone and had to fight and struggle for my survival any way I could. So I had to fend for myself.

After my radiotherapy treatment, things were harder because it appeared that I “fell through the cracks” with regards to my rehabilitation. I was lost in the system. A coordinated approach was lacking, resulting in me having to largely organise my own therapies at different sites around Adelaide. I was not referred to all the relevant allied health departments at the RAH at the completion of my treatment. My RAH speech pathology referral was received from a private therapist who I consulted on 2 occasions but was unable to afford the ongoing expense of my treatment.

The senior speech therapist at the RAH was Heather Baron. She was very kind and caring. From that referral I was able to get into the Felixstow Rehab Centre. Ultimately after 2 years of having knock back after knock back my rehabilitation finally began.

I felt emotionally drained, as this was my last hope. I thought I couldn’t go on. Thinking about suicide was always on my mind for the past 2½ years. I have felt abandoned by people around me who couldn’t deal with my illness and different abilities. My life was slipping though my fingers and there was nothing I could do about it. But in recent months I have had an enormous change in my personality. I have much better frame of mind and positive attitude.

I have also lost independence and freedom because I had to surrender my driver’s license. This is legally what happens after anyone has a brain injury. That was so devastating. It was a huge loss to me. However I will be able to obtain my drivers license again.

f) Social Life / Connections with people:

Some people have been very kind. However you find out who your friends are when you have an illness. I lost most of my friends. They probably weren’t my friends in the first place.

I now play table tennis and yoga but I have not told them yet about my being gay. They may finally find out about my sexuality. I’m starting to make more contact with some people now but I’m shy and it’s not that easy. Going out is hard.

I live alone in a housing trust unit for differently abled people.

My mum and dad and my entire family except for my twin sister, haven’t been able deal with big “C” my cancer. It took all my strength but I forgive them now. I don’t really have contact with them now except for my twin sister.

g) Work

At the time of my diagnosis I was working and studying. I had previously done work as a factory hand. I was doing part-time study two nights a week at Flinders University doing a bridging course to get into Uni.

Since radiation therapy but before rehab…

I did voluntary work at PADA (Panic Anxiety Disorder Association)
Following that I did voluntary work with Women’s Legal Service,
I was also in a support group for young people aged between 24 – 40yrs at the Cancer Care Centre at Unley. They were a fantastic help.

h) Other agencies involved:

I was with the Community Rehabilitation Program at Felixstow. I attended the rehab program for about 8 months in 2003/04. It was their patience, knowledge and enthusiasm that were the greatest help. I know I wouldn’t have the ability to make significant changes in my life. Their encouragement has been rewarding. It was a challenge for us both.

I continue to see my GP. Her caring ability to her patients is genuine and sincere. She has been a really helpful and supportive doctor. I also have a Brain Injury Options Coordinator. At present, this is Mary Bice.

Multiple Solutions Employment Specialists are also people I might use to help me find work in the future. I’m currently on their books and we’ll see what happens.

I’m have started meeting with people at SHINE SA and might get involved with projects as they come up.

Also being part of Feast Festival. Doing volunteer work for the Adelaide Lesbian & Gay Cultural Festival.

Well that’s my story. I share it with you because I feel it’s important for you to know that someone out there does exist who is a woman, gay and differently abled. We just need others to see & respect that we exist.

I’d like to go on a bit more to give you some further information.

Part 2: The barriers of non recognition and misunderstanding:

“….in general, the problems of disabled sexuality are not caused by the impairment itself, but by the way people with that particular impairment are viewed and treated in society”.

The above quote was taken from “Sexualities and Society – A Reader”. First published in 2003 by Polity Press in association with Blackwell Publishing Ltd.

It provides an important statement for people to think about and really consider that were are people. We as DA gay women want to be viewed and treated as any other individual in the community. If you are training to be a support work or work in the field of disability (which I call differing abilities) then it’s important for you to be mindful of this. There are at least a few ways I can tell you about that people with DA are viewed and treated in the community.

a) Invisibility:

Its like we – those who are gay and disabled- are invisible in society. People don’t seem to know we exist and we don’t seem to be acknowledged much. The topic doesn’t come up much in the media or literature either.

There is a serious lack of literature if you're a woman, gay and differently abled. To quote O’Toole Corbett in Sexuality and Disability 2000 “ you will have to look long and hard to find any information pertaining to disabled lesbians”. Also if you come from an indigenous background or minority cultural group, you are likely to be even more invisible in society.

Because of this invisibility, invariably the issues are being ignored; it goes unrecorded in most instances (Joan O’Toole Corbett 2000, ‘The view from below. Developing a knowledge base about an unknown population’).

Who are women with disabilities? In a study presented by Helen Skeats to Women with Disabilities Australia Centre for Women’s Health Matters 1997 it was stated “there are approximately 1.5 million women with disabilities in Australia – nearly 20 per cent of all women. They are Anglo, of non-English Speaking Background, Indigenous, lesbians, straight, their impairments include psychiatric, physical, intellectual, sensory, brain injury and chronic illness. Their ‘disability’ stems from the response of ‘our community’ to them.”

There are issues with being a woman, there are issues with having differing abilities, there are issues with being a lesbian, or having particular religious beliefs or cultural background. When any of these factors combine, it gets really hard.

b) Misunderstanding:

There are many myths for people who have different abilities. I find them outrageous and oppressive.

· The misguided belief of some people that individuals with a different ability cannot actively contribute in a full life is sadly mistaken. It is clearly demonstrated in a range of places that people with differing abilities can participate and contribute. Some famous examples include Christopher Reeves, Quentin from Adelaide and others. There are others who are also just everyday people, not famous but contributing in their full lives.

· Out of sight out of mind:

“Put sex and disability together, and people get queasy”.
(Pat Califia ‘Raising Cane’ -“OUT” Magazine No. 69. August 1999 pp.32-33.)

It would seem that people like to think that people with DA are somehow non sexual because of their DA, yet if you think about it, it doesn’t really make sense. In an article by Corbett Joan O’Toole the view from Below: Developing a Knowledge Base About an Unknown Population (Sexuality Disability, Vol. 18, No. 3, 2000), one person writes, “I believe sexuality and spirituality are very strong elements in one’s life and they are inseparable.”

In the same article another person said, “Firstly [I want people to know] – that we exist. It shouldn’t need to be said, but I think it does. Too often, people don’t think of people with disabilities as sexual beings at all – or, if they do, our sexuality is thought of as problem (this is especially true for women with intellectual/cognitive disabilities). Disability sets you apart from other queer women. Sexuality sets you apart from other women with disabilities. It’s easy to feel very, very isolated” (pg208).

These quotes say it clearly:
1) That sexuality is important to the spirituality and centre of a person,
2) That too often people with disabilities are not considered as sexual beings and
3) That disability (or DA) sets you apart even further from other queer women, which can be, even more isolating.

c) Negative reactions from others:

People with disabilities have repeatedly experienced dissatisfaction at the hands of a range of people in the community, including experts and professionals. When I was in hospital. I felt I couldn’t confide in my doctors or nurses to tell them about my sexuality, because I had enough to deal with.

The only one person I told about my sexuality at the RAH was the psychiatrist.
It didn’t turned out as I hoped and I feel that she was all too quick to tell me she had a boyfriend. She didn’t need to worry about me ‘hitting on her’ and all I was doing was being open at a time when I needed support. I was going though radiotherapy at that time; I felt she had no concern what so ever about my feelings, my whole world was in tatters. I felt it was offensive and I felt dreadful, extremely angry and enraged. I felt her response showed that there are people out there who continue to have prejudices, fear, ignorance and hostility for the homosexual lifestyle.

Another experience of negative reactions from others was from two gay non DA women as we returned from the Sydney Mardi Gras 2003. I felt dejected and hurt that gay woman could make unkind comments about me. I find there are some/quite a few gay men and women in community who just don’t seem to care or don’t know how to cope with my illness. My experience backs up that quote I mentioned earlier how disability can set you apart from other queer women too.

d) Apathy and other reactions:

I have found myself in nowhere land. People don’t seem to want know or don’t care or are unsure how to cope because they don’t want to look silly. This is very common for people with a disability and it is even more isolating when you are a DA gay woman.

To summarise this section, I try not to worry about what other people think, but I do need to consider what I do and don’t share with people. I turn to another quote to support my experiences: Helen Skeat at the Annual General Meeting of the Centre for Women’s Health Matters, Australian Capital Territory. Copyright WWDA 1997 reported that Di Temby said, “these fears are not born out of idol fantasies, but from witnessing the realities …….. and experiencing the social financial and political consequences of degrees of loss of ability over time. They know what it means to be a female with a disability.”

SO what do I want people to understand?

The medical issues don’t bother me any more. I feel in respect to myself I find it is more social and psychological issues that I have a problem with now.

In society today still some people, including professionals appear homophobic. Understanding about disability and homosexuality seems to be very difficult for some people in the straight community, gay community and the differently abled straight community. We're not deviants and the idea that differently abled women are asexual is a myth.

We are not going away. It’s important for people to get used to the idea that people with DA exist in the community. Because we are people, sexuality is part of life, and for some, homosexuality is part of who we are. As Mandy Hooper and REGARD for the Spinal Injuries Association said, “Your sexuality is part of who you are”. (in their publication, ‘Sexuality and Spinal Cord Injury – Lesbians’ 1993).

Conclusion

So, to give you a conclusion, I have a great sense of loss. The loss of ability, the feelings of being inadequate, the insecurity and confusion I have felt about myself. There is exclusion and discrimination being a gay woman with different abilities. The harsh realities are being vulnerable, feeling invisible, and the isolating effects on me as an individual.

It is people with different abilities who are best able to reduce prejudices and fears in the community by making people aware that we exist, are productive and we are just people. I would just like people to consider being more aware and accepting of all women with injuries. Whether straight, gay, intellectually, mentally or physically challenged, we are people who can make difference in society today. Gay women and men with DA also have to be open to other people’s feelings on sexuality so show respect to others.

Most of the community seems to find it difficult to conceive that we are very diverse. Culturally there are so many minority groups in our population still being discriminated against. I say what for? Why discriminate? We are able to get on with our lives, and for me, I don’t any need sympathy just compassion and understanding.

I’d like you to remember that if you meet a gay person with DA through your personal or work life, take into account not to misjudge. I have noticed in general that most people with DA are real, very kind and compassionate people. I think people with differing abilities are all heroes. People with disabilities are very special people. We have to deal with unimaginable pain and suffering and meet the challenges that face us. People with DA are able to be active and contribute and we are sexual people too! Some are gay, some are hetro, and just because we have Da doesn’t mean we stop being human. We are differently abled and are capable, normal and keen to be part of life. We just need others to see and respect that we exist.

My positive attitude has been attributable to my hard work, persistence and the Rehabilitation Program at Felixstow. I have come to realise the impact of what has happened to me after my injury. I am now 32. I was diagnosed when I was 29 (June 2001). I did take my life for granted before my illness. It has been an enormous struggle on my part, as I didn’t have much family support. In spite of this I can see a very bright light ahead of me.

Thank you for taking the time to read my thoughts/ listen to my talk.

Julie Kerr
Feb 2004
julesk71@chariot.net.au

Please do not reproduce this article without consent of the author.
(Written with editing assistance)

Bibliography:

1. J. Weeks, J. Holland and M. Waites (Eds.) 2003 Sexualities and Society – A Reader. First published by Polity Press in association with Blackwell Publishing Ltd.

2. Joan O’Toole Corbett – 2000 The view from below. Developing a knowledge base about an unknown population. Sexuality Disability, Vol. 18, No. 3.

3. Helen Skeats – 1997 Women with Disabilities Australia Centre for Women’s Health Matters.

4. Pat Califia -1999 “Raising Cane” “OUT” Magazine No. 69 August pp.32-33.

5. Mandy Hooper and REGARD for the Spinal Injuries Association 1993 “Sexuality and Spinal Cord Injury – Lesbians” London.

6. Joan O’Toole Corbett Jennifer L. Bregante 1992 – “Lesbians with Disabilities”. Sexuality and Disability, Vol. 10, No. 3, pp.163-172.

7. Wanda J. Blanchett – 2002 University of Wisconsin-Milwaukee – “Voices From a TASH Forum on Meeting the Needs of Gay, Lesbian, and Bisexual Adolescents and Adults With Severe Disabilities” Research & Practice for Persons with Severe Disabilities. Vol. 27, no. 1, pp.82-86.

8. Family Planning, date not available, “Brain Injury and Sexual Health” Headway…the official journal of the Brain Injury Association of Qld pp.3-5.

9. Kirby Wohlander and Marla A. Petal – date not available “People Who Are Gay or Lesbian and Disabled”, in H. Hidalgo, T. Peterson and N. Woodman (Eds.) “Lesbian and Gay Issues – A Resource Manual for Social Workers”. National Association of Social Workers, Maryland.

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