Peo­ple say, ‘Re­ally?’

No one minds that I’m gay – but tell them I’m dis­abled and they get hos­tile

The Guardian - Family - - Front page - As told to Joan McFad­den

Iam 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.

Ex­plain­ing that you are dis­abled is a pretty per­sonal thing to share with a mean stranger who might not be­lieve you any­way

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.

Pho­to­graph by Martin God­win for the Guardian

Jes­sica Kell­gren-Fozard

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