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People accept that I’m gay, but not that I’m disabled

Jessica Kellgren-Fozard
Jessica Kellgren-Fozard: ‘When most of the difficulties in my life come from the very fact that I look fine while actually needing help, that is not really a bonus.’ Photograph: Martin Godwin for the Guardian

I am not sure that I had a true moment of realisation when it comes to being gay; it is just something I have always been.

I assumed that what I felt for certain girls was just what every other girl felt for her special friends … and didn’t we all want to marry Pocahontas? My parents teased me mildly about having “intense” friendships with a different girl every few months, but they are incredibly liberal and have enough gay people in their lives that it never felt that special when I hit my early teens and started wanting to kiss girls.

I don’t think my family expected me to be one way or the other, so being an out lesbian was probably the least interesting part of my teenage years.

Being aware of my disabilities was also gradual – I had a lot of problems with my hearing as a baby, including my eardrums bursting on a number of occasions. After a few operations on my ears and eardrums, I was able to hear relatively well from the ages of five to 15 – so the songs I know best are, sadly, very late-90s/early 00s – although adults often complained that I was “dreamy” and “not listening” when I realise now I just couldn’t hear them. I started to lose my hearing again at 16, but didn’t realise it until I began university three years later.

It seems funny to think that I didn’t realise, but I was struggling with a lot of other health problems at the time and as I spent most of my time in bed – either at home or in hospital – the only thing that noticeably changed was the volume at which I watched TV.

When I finally managed to make it to university and started interacting with people who were not my immediate family, it was painfully obvious that I couldn’t hear what they were saying and that, when it came to conversation, I had pretty much been operating on guesswork for quite a while.

I am not profoundly deaf and, obviously, can hear more with my hearing aids in, although they only make things louder, not clearer. I can’t hear any high-pitched sounds and, with my hearing aids in, I only properly catch one word in three.

When I was 17, I was diagnosed with hereditary neuropathy with liability to pressure palsies (HNPP), which results in extreme palsy in my arms as well as patches of skin being numb, difficulty gripping things, weakness in limbs and severe fatigue. I also have mixed connective tissue disorder (MCTD), an autoimmune disease in which the body’s defence system attacks itself. MCTD causes chronic joint pain, muscle inflammation, hypermobility and pulmonary hypertension alongside a long list of other symptoms.

My disabilities can hamper everything I do, but they are often invisible, although I don’t think the days I have to use a wheelchair or wrist splints make them visible – they are just my aids.

I often have to explain myself when strangers think I am just being difficult. I get scoffed at in the street when I don’t hear someone behind me or I walk into them because they are on my blind slide. I have been called out loudly by non-disabled people for using disabled toilets or parking spaces, challenged for being a picky eater when I cannot eat an ingredient in their food and yelled at for being inconsiderate. It doesn’t matter when I explain that I am not just dozy or silly, but have a disability, because they have already worked themselves up into a self-righteous rage and nothing I can say will stop that.

It also hurts to have to explain painful, long and complicated reasons behind injuries when people expect a light-hearted story. “What happened to your hand? Accident while out on the town?”

“No.” Deep breath … “I have a disability that affects my nerves and …” Although, to be honest, often I just lie. 

When someone confronts you, asking what right you have to use a disabled toilet or why you were so stupid you didn’t hear them asking you to get out of the way, your only options are to stand there and let them yell at you (plus points of being deaf: turn your hearing aids off and you only have to see the yelling) or you attempt to explain that you are disabled, which can be a pretty personal thing to share with a mean stranger who might not believe you anyway.

I understand that I look fine, but when most of the difficulties in my life come from the very fact that I look fine while actually needing help, that is not really a bonus.

Telling someone I am gay is instantly accepted, no questions asked, generally with a smile. Telling someone I am disabled comes with, “No, really? You don’t look it”, and a scrutinising look. Nobody has ever accused every single gay person of “scrounging off the state”, but people have openly said that about disabled people, in front of me. 

I definitely feel that there is a desexualisation of disabled people. When I was still dating, I could see the moment in my date’s eyes when I explained my condition and suddenly stopped being an interesting potential prospect. I think disabled people are not just taboo when it comes to sex, but also dating, relationships and life in general. My wife is often told that she is a saint for marrying me or that she must be such a good person – as if I am a terrible burden and not the woman she loves. Businesses, the media and politicians need to start seeing disabled people for what we are: useful members of society who have something to bring to others. 

I have always been an out-there dresser. I have probably toned it down now – I am less eccentric than I was. It has always felt important to spend time on my style because it is one thing about my body that I can control.

I believe in soft activism rather than shoving a message in people’s faces and telling them they should change their opinion. I think it is better to subtly insert small changes into our everyday lives, such as having more disabled characters featured in the media – and in instances where being disabled is not the main story. We should have more disabled MPs, because although almost one in five people in the UK are disabled, we are underrepresented, especially since the Conservatives shut down the access to the elected office fund, which helped people with disabilites to go into political jobs.

I missed most of my teenage milestones because I was either in hospital or lying in the dark. I was too ill to open my eyes, to sit up or to eat, and I was made to feel like a burden, as if my presence was a hindrance to other people’s lives.

I was never a problem to my parents or brother, but they would be told, “How good you are to look after her” while I was in the room. But there were some amazing people who stepped into my lonely space, took my hand and helped me through those rough years. They didn’t mind helping out physically or spending time making me laugh and always let me know it was no big deal. I was never a burden to them.

I am so much better than I was but I still need help and I know the best way to repay that help is to live the best life I can – to be brave, to be bright, to be happy. I am proud of everything I have achieved and where I am now.

This article titled "People accept that I’m gay, but not that I’m disabled" was written by As told to Joan McFadden, for The Guardian on Saturday 13 January 2018 06.15am

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