‘Is your sex life normal?’ The questions I’m always asked because I use a wheelchair

From catheters to carers, when it comes to disabled people like me let’s get a few things straight…

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When people meet me for the first time, I can often sense they’re making efforts not to mention my wheelchair and to act “normally” while carefully choosing their language. I don’t blame them, appearance is the first thing we all notice about each other. And mine can make people uncomfortable, or curious about how it works being married to an able-bodied man and the realities of being one half of an “interabled” couple.
One of the worst things about having a chronic illness, and suffering with it, are the barriers it puts up between you and everyone else and there’s a danger it becomes the elephant in the room. I’ve never wanted to be a poster girl for disability, but in the 22 years I’ve been using a wheelchair I’ve realised it’s best to confront it and be open about my story and what people want to know.
Here goes.
Generally, this is the first thing people want to know, and the short answer “my legs don’t work” doesn’t tend to cut it. Why they don’t work is a longer story, which begins in May 2003. It was two weeks before my 13th birthday when I jumped off a swing at the park, and as I tried to pick myself up and start to walk, I just couldn’t. And that was when my life suddenly and unexpectedly changed forever.
Dad carried me home and I was admitted to hospital that night. I was quite an anxious child and I didn’t like using lifts for fear of getting stuck in one, the irony was, it would soon be my only option…
I avidly watched Holby City and I remember asking Dad in horror, “Will I be paralysed?”
“Of course not!” he replied. He wasn’t lying to reassure me. We all imagined – him, me, mum and my little sister – that it would be something fixable. Multiple scans couldn’t find an issue and I remained in hospital for six weeks before finally I was diagnosed with something called “acute transverse myelitis”, an autoimmune disease so rare they still don’t know what causes it.
The doctors said I would have had more of a chance of winning the lottery, which frankly sounded far more fun. One theory was that a common virus had fired up my immune system, but instead of fighting the virus, it had accidentally attacked my spinal cord instead, meaning signals from my brain could no longer travel to my legs. Essentially, my body had short-circuited and my spinal injury wasn’t from an accident or trauma but an inflammation. No one knew for certain, and while some people recovered from this kind of issue, I did not. After four months in hospital I came home in a wheelchair and my “new normal” began. That laboured stumble I’d made in the park, from the grass to the park bench, turned out to be the last steps I ever took.
Overnight I’d become the “wheelchair girl” who needed to self catheterise instead of peeing, and had to train my bowels to open regularly by sitting on a loo for one hour, twice a day. (That’s probably still not as long as John takes, mind you… why do men take so long to have a poo?) I’m not exaggerating when I say that in my parents’ church people actually prayed for me to poo one time. And I’ve had some spectacularly messy moments including when we only realised I’d “been” after Mum had wheeled my chair down the hospital corridor leaving a trail of faeces in our wake. When it comes to disability you’d better develop a sense of humour fast…
My body changed dramatically after becoming paralysed. The muscles in my legs became atrophied and skinny while my upper body became more muscular from pushing a chair. I couldn’t help feeling self-conscious that I wasn’t developing like my teenage friends were. I read magazine articles about how to dress for your body type – whether hourglass, pear-shaped or boyish. There was nothing on “how to make your hunchback hot”. I stuck to baggy clothes and stopped comparing myself.
A weird question and rather rude, but nevertheless one that John gets asked a lot. I mean, if he had four exes, and they were all wheelchair users, I’d be worried. Nobody asks if he has a thing for blondes, or Welsh women, and I’m both those too. Sometimes he jokes, “No, Jade just fell head over wheels in love with me” or I remark that I was the only woman who couldn’t run away.
The question also implies disabled people are some sort of “kink”, or a fetish.
Disabled people can be fetishised – in my late teens and early twenties I started getting men throwing themselves at me in bars and clubs. It was bizarre, who would want to be some sort of “novelty” box to tick? And are we really so undesirable that we’re the punchline or anecdote following a game of Have I Ever. “A disabled woman? No way!”
I’ve even heard about disabled people turned away from popular dating agencies with the excuse they’re not a “specialist” service. We are not a taboo, thank you.
John and I went to the same university, studied the same subject, fell in love and married in 2015.
People have even asked John, “You could have had any woman, why did you choose Jade?” I laughed rather too loudly at the “any” part I have to admit. But it’s heartbreaking how negative people’s perceptions are of disabled people. But he’s not married to me out of pity, or charity, he didn’t “get stuck” with me. Isn’t one of the most beautiful and romantic things about any relationship, that we all have other options but choose to be, for whatever reason, with that person?
“What about sex?” is what people can be dying to know, but only dare ask on social media. Clearly, it’s no one’s business, but as our culture often infantilises disabled people – assuming they can’t have sex, don’t want to have sex, or can’t enjoy it if they do, I’m happy to be honest.
Every disability is different though, so I can’t speak on behalf of the entire disabled community. People seem to want me to reveal once and for all whether those of us with spinal injuries can even feel sex. Basically, some can and some can’t.
Most people understand that because sex is a physical activity and my disability comes with physical limitations, it may be difficult at times. But decreased physical ability doesn’t inevitably lead to diminished sexual desire. Just because someone might find it hard to cook doesn’t mean they don’t like to eat, does it? Like any other regular woman, I can get tired from looking after kids, or have a headache or my period. But I suppose having a disability trumps all those excuses.
The most honest answer is that I don’t know whether our sex life is normal. I’ve only had sex as a disabled woman, we waited until being married because it felt important to us, and what even is “normal” anyway?
If you were hoping to hear wild stories involving sex swings then I’m going to have to disappoint you – we don’t own one. But can I have sex? Yes. Do I enjoy sex? Yes. Did we get our two children the usual way by having sex? Yes. Does the disabled Karma Sutra contain fewer positions? Probably.
The sex question sort of went away a bit after I became pregnant because people had worked it out for themselves.
I’m fairly independent and take care of myself and the kids without help, but people assume John’s primary role is to serve as my carer. Don’t get me wrong, there have been times when John has had to care for me when I’ve been very ill, but that isn’t true of our entire relationship. Most of the time we’re just like any other married couple. 
Last year John was diagnosed with ADHD, he produces dopamine at a lower level to most people and so is chemically wired to seek more as a result. He can struggle to focus, forget things, be late and do everything last minute. He’s impulsive and pleasure-seeking, talks a lot and interrupts a lot. All of which can lead to relationship challenges. At the end of the day, we both need each other for support and help. The butterflies in any relationship don’t last forever, but we made marriage vows and they meant something. You hope that there will be more “better” than “worse” times and more “health” than “sickness”.
People always want to know whether I would change my disability if I went back in time. Anyone who experienced something as traumatic and random as I did, would naturally question “what if?” What if I hadn’t gone to the park that day? What if I’d had a greater level of recovery like most people I know with acute transverse myelitis? Instead I have to think the other way – what if this had happened when I was older and driving and had crashed the car? What if my paralysis had travelled higher and I’d become tetraplegic? I’ve learned patience and love with the life I have – and I feel fortunate to have it.
Just don’t call me “inspirational” please, it makes me cringe.
As told to Susanna Galton
Able to laugh, by Jade and John Reynolds, is available to buy now
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