October 20, 2020 at 11:11 am #25104Thembelihle Lily NgcaiParticipant
My experience of disability has always been characterised by comparison. I’m the only disabled person in my family. I was one of the very few visibly disabled people in high school, university, and later in my career as a journalist. How I was disciplined at home, which school activities I participated in, my longevity in employment and now, romantic relationships, sexual liberation, and freedom neatly on the opposite column, I gauged myself against the how, when, what, and why of my non-disabled counterparts to make sure I wasn’t being cheated out of the life everyone else had.
I wanted nothing more, nothing less. No allowances; no asterisk, no footnote.
“What would you say is the reason you have never been in a long-term relationship?” Quickly, I minimise my WhatsApp. I open my Notes App where a text essay on ableist desirability politics waits to be used.
But neither my eloquence nor my thought-provoking critique can put me through to the next round of this talking stage.
It’s true. I am twenty-six years old, and as the popular trope says, I don’t have exes. Only, in my case, it is not a trope. While I’ve been able to go toe-to-toe with my non-disabled peers since I was a child, accomplishing everything they did, making myself at home in the same ableist spaces they frequented, hell, even garnering the attention of suitors with near similar ease; there is a footnote to my story. It’s a footnote that ever so gently, but acutely, reminds me that I am disabled.
It reminds me of when, on first dates, I don’t call ahead to advise the restaurant that I’m in a wheelchair and patrons must then move silently, pitifully to the non-wheelchair tables. When the only wheelchair-accessible entrance is in a back alley, it reminds me.
I wanted nothing more, nothing less, no allowances, no asterisk, no footnote.
I had just purchased a luxury German vehicle as my first. I was engulfed by hugs, congratulations and speeches from my family about how my success had always been guaranteed. I was twenty-five-years old and a young manager in an esteemed office, leaving a trail of glory and being introduced at youth conferences as the disability voice to listen to. I longed for nothing, at least not to those around me. But there was something I had desired for a very long time.
I wanted a boyfriend. A real relationship. Much like the one my friends had.
I’d paid my dues and done the self-work, problematised my inherent beliefs and passed all the rigorous Am I Ready? tests. I’d self-loved myself to oblivion and manifested, chanting “I’m ready to take up space and cement myself in someone’s life”. I’d even received the green light from my difficult-to-convince psychiatrist. So why were all my invitations to an ice-cream date always left unanswered?
People scoff at me when I say that this question literally keeps me up at night. A woman like me, who has everything, hinging her self worth on the fleeting validation of cishet men?
My non-disabled friends — serial monogamists or who are single by their own volition — and even the friends who preach that gospel of “wayekeni” [leave men alone], cannot relate to my romantic struggles.
Wayekeni, amadoda. Amadoda, wayekeni.
They’d never contemplated cropping out the wheelchair from their Tinder photos. They’d never worried that it might detract from the sexiness of their profile. They’d never abandoned the assistive device in case it warded off potentials. And they hadn’t created secondary online profiles of a younger, aesthetically-palatable Thembelihle, sans assistive device altogether; a social experiment designed to expose this false conclusion, “The wheelchair doesn’t matter to me”.
They hadn’t hypersexualised or fetishised themselves online, trying to allay men’s fears that disabled women couldn’t be sexual in the way that other women were.
No, my non-disabled friends hadn’t sought advice from disability support groups on whether to leave their personal assistant at home on first dates, a ruse to downplay the severity of their disability; to appear independent.
They hadn’t, after disingenuously but successfully hiding the disability, spent weeks typing and un-typing, calculating the best day and time, deciding on tone, all in which to finally, bravely, just admit that I haven’t figured out who I am in this thing yet. I haven’t figured out how to affirm that ability is not a measure of value. But most importantly, I haven’t figured out how to articulate this truth: I am afraid of presenting myself to someone who then finds me lacking. Secretly, I think there should be more to me too.
Desperate for a promise of what could be, I’ve turned to the few successful relationships of disabled friends, but they’ve offered me little comfort.
Would I be enough when he’d decline group couple hiking dates? Would he risk his streetcred or manhood when other men couldn’t relate to having to turn over their partners in bed? What staggering price had my disabled friends paid to have this “normal”?
I hadn’t been in a night lounge since I lost the ability to walk. Then, I was at least 30kgs lighter and at home in the public gaze. Now, as the security guard opens both doors to let my red wheelchair in, I don’t want to stand out.
The tables are too high for wheelchairs so I cradle the Grey Goose on my lap, protecting it from the drunk patrons who keep tripping over my foot rests. Maybe I shouldn’t be here but I tell myself that this is another one of my social experiments.
“Hey, I’m Lazarus. Sorry, I don’t know if you noticed but I’ve been watching you from the bar.” With a polite smile from me, he continues.
“You know, my aunt was involved in an accident two years ago. She was in a wheelchair for like, eight months? It was the worst time of her life; she couldn’t do anything. Anyway, she’s all good now, she’s walking and everything.”
“Oh, I’m glad, Lazarus.”
“Yeah, so you will too — walk again. Don’t lose hope.”
The morning after a night out at Highlander, my grandmother sat on my bed, smoothing down my creased linen with worn hands, and asked, “Anidinwa mntanam, kukubuya ngobusuku?” [How do you young people do it?]. My mother, trying to pin her Young Women’s Manyano red club, absentmindedly complained about being my chauffeur.
But then my grandmother said something that I’ll never forget. She reminded my mother, “Naye uyintombi lomntana, Nolitha. Xa efuna ukwenza izinto ezenziwa ngamanye amantombazana; into yokumhambisa kwezindawo zabo, yinto enganamsebenzi [After all, I too am a young woman, and that if they must endure discomfort for me to do everything that my peers do, then so be it].
But my mother doesn’t need reminding, at least not anymore. When I look back on my childhood, I realise that it was my grandmother who fought for me to live the way my peers did, and this is the truth of what it means to be disabled for me: I owe much of my joy to the advocacy of those who believe I deserve it.
I may have sat on the sidelines during social activities in my childhood. But perhaps the paradox that I live by — that because I am disabled I insist on normalcy, no matter the cost — has become my real undoing as an adult.
I was nine-years-old when my sister was born. Until her birth, my mother had not had to imagine what my life might have looked like was I not born with a neuromuscular disease. My sister grew into a teenager, and my mother was confronted with this realisation: her eldest daughter’s disability would never allow her the experiences — selection for first team Netball, sleepovers at friends — of her younger sister.
My mother’s anxieties about exposing me to people who thought her burdened by my disability (which was understandable), became pernicious.
Her realisation turned to guilt, and overcompensation became the burden of this guilt.
It was the final primary school dance, and though no one knew it, it was my own last-ditch attempt at being embraced by the boys at my brother-school. At being normal.
What if you involuntarily fall on the dance floor and everyone laughs at you? What if you can’t dance? What if no one asks you to? But the only thing my mother could actually say out loud, was a resounding no. I simply was not allowed to go.
It was my cousin, my own kind of fairy godmother, who begged her. He negotiated with her; even volunteered to do my chores every day for the rest of his life.
An hour was left, and although I wasn’t wearing a tiara or blue gown, I was there, grinning from the shoulder of the only boy who’d dared to ask me to dance.
My mother welcomes, now, the men who fetch me in her driveway. Just like that now-forgotten Friday night in 2006, I hope I’ll make it just in time to fulfill my unknown desires. These pickups are becoming more frequent; seeing happy, albeit non-disabled couples on my Twitter timeline has reignited my resolve to date.
“Come inside the yard, it’ll be easier for me with the wheelchair.”
My mom is the designated orientator. She exchanges pleasantries with my date and ritually begins the crash course. First, how to help me into the car. She makes sure that he follows my directions on where to turn when we stand together. He appears determined, but this is foreign to him, and he lets out a nervous chuckle. Next: removing the footrests and folding the chair. He’s surprised at how easy it is. Finally, he must properly position the wheelchair so as not to obstruct his rear view.
It’s probably the last time she’ll ever see him. After tonight, I’ll grow tired of willing him to view me as more than just his cool homegirl, like I did the last five times I went on a date the same as this one.
“Are you okay? I noticed that your hands are shaking.”
When I tell him about my persistent tremor, which indicates neither nerves nor fear, my reflex is to search his face for a sign that this is becoming emotionally laborious for him. I assure my date that he’ll get used to it. I desperately hope that he believes me. Maybe I am nervous, nervous that I must now be smarter, funnier, more witty, all so that his hard work is worth it.
What has characterised my dating as a disabled woman, at least one that is Black and fat, is always feeling like I must assimilate. I share only the most palatable aspects of my disability, or I latch on to any attention I receive, even if it’s from undesirable and abusive men. Or, I know I must be more than just disabled.
This is not unique to me. Too often, the burden of finding a partner for disabled people means buying affection, morphing themselves, chiselling parts of their disability to fit elusive constructs not designed for them. In the end, they are rendered “too disabled” to be chosen; for acceptance, for love.
These “too disabled” women are the same women who are languishing outside of the healthy, affirmative and nurturing relationship spaces frequented by their peers. They remain in the wings, waiting for a cue that never comes, unable to admit to their mothers why so-and-so no longer picks them up.
So, they’ll exhaust themselves writing think pieces like these. Coddling “we-all-have-disabilities”-ass men. They’ll pretend to accept the same disappointing answer reserved for disabled people: maybe it’s just not your time yet. Maybe they’re trying too hard; maybe the fault is with them for not loving themselves enough or valuing a man’s validation too highly.
We’ll unpack normative womanhood and hegemonic gender expectations ad nauseam, bargaining our bodies for the attention we would otherwise never keep. We’ll continue to manipulatively preamble direct messages with “I’ll understand if you’re not interested. It can be overwhelming”, guilt-tripping people into falsely admitting that it was our disability that turned them away and not our problematic politics.
We’ll embrace emotional and sexual abuse welcoming it as a rite of passage, as part of the journey to a promised land where the companionship we crave is no longer kept from us by those denying our disability.
October 20, 2020 at 7:05 pm #25109Patrick LenihanParticipant
I love this essay! I admire the emotional honesty of your writing.
October 21, 2020 at 6:57 pm #25112DeAnn RKeymaster
Thank you for sharing this. I have a feeling it will strike a chord with many of us. Since I have little experience in the realm of relationships I rarely talk about it. Thanks for opening the door for discussion.
October 21, 2020 at 11:46 pm #25118Alyssa SilvaKeymaster
This was beautiful. Thank you for being so honest and vulnerable with us.
- You must be logged in to reply to this topic.