A personal essay by Thembelihle Ngcai
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 the workplace. My experience of disability has always been characterised by comparison.
How I was disciplined at home, what I could participate in in school, my longevity in employment and now, romantic relationships, sexual liberation, and freedom neatly on the opposite column, always desperately gauging 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 to go to my Notes App where an eloquent, well-constructed, logically flawless, thought-provoking text essay about the impact of desirability politics on Black, fat, disabled women finding partners waits to be used for what is going to be yet another failed 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 frequent, hell, even garnering the attention of suitors with near similar ease; there is a footnote to my story. It is a footnote that ever so gently, but acutely reminds me that I am disabled.
On first dates when I didn’t call the restaurant in advance to let them know I’m in a wheelchair and patrons must now silently, pitifully be asked to move to the non-wheelchair tables, it reminds me.
When the only wheelchair accessible entrance is in a back alley, it reminds me.
At the first pinnacle of my success in the past year, I was engulfed in hugs, congratulations, and speeches from my family about how my success was always guaranteed. I was twenty- five years old having ticked off my many aspirations. I had nothing to long for, at least not to those around me. But there was something I yearned for and 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 own inherent beliefs and passed all the rigorous Am I Ready? tests, self-loved myself to oblivion and manifested. Even received the green light from my psychiatrist. So why was I not graduating past the talking stage?
When I tell people that this question literally keeps me up at night; unsurprisingly, they scoff at me. A woman like me, who has everything, hinging her entire self worth on the fleeting validation of cishet men? How ridiculous.
My non-disabled friends, single by their own volition or who have been in back-to-back long term relationships for as long as I can remember or who had joined the growing chorus that preached the gospel of “wayekeni” [leave men alone], couldn’t possibly relate.
They’d never had to contemplate cropping the wheelchair out of their Tinder photos in order for their disability not to detract from how sexy they wanted to be viewed. Never decided to abandon the assistive device altogether in photos in case it warded off potentials.
They hadn’t hypersexualised, or even fetishised themselves online to allay any fears men had that disabled women couldn’t be sexual in the way other women were.
No, my non-disabled friends hadn’t been on disability support groups seeking advice on whether to leave my personal assistant at home on first dates as a ruse to downplay the severity of my disability and appear independent.
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 the deep truth that I’m just scared to present myself to someone who’ll find me lacking because secretly, I think there should be more to me too.
Desperate to be reminded of what could be, I’ve turned to the one, maybe two existent and successful relationships my disabled friends have, to no comfort. I couldn’t make allowances to my aspirations modelled on my own fear that to be with me meant my non-disabled boyfriend would always miss out, on something. That he would never be able to relate to other men. I couldn’t wish to replicate my friends’ relationships without relinquishing the need to be un-regrettable, vouched for, recommended so that other men who are unsure, knew that the waters are safe to tread.
My grandmother sat on my bed one morning after a regular night out to ask how we young people do it. My mom light heartedly complained about being the chauffeur for my escapades but what I’ll always recall is my grandmother reminding my mother that I am disabled and if their only role is to endure great discomfort so that I can do everything my peers do, then so be it.
But my mother doesn’t need reminding, at least not anymore. When I journeyed back to finally find the truth I always thought I knew about what it meant to be disabled, what I discovered was that my grandmother fought my mother to allow me to live the way my peers did.
Though I ultimately sat on the side-lines on many social activities throughout my childhood, longing for my disability to be synonymous with freedom, perhaps it is this well-intended paradox that because I am disabled, I must insist on normalcy at whatever cost, that has become my undoing as an adult.
I was nine years old when my sister was born. She came at a time when my mother had never imagined how differently my life would’ve looked had I not been born with a neuromuscular disease.
When my sister became a teenager, what once was anxiety about exposing her disabled child to people who she thought would be burdened by her disability was replaced by a newfound realisation of the many normal human experiences my disability would never allow me to have. Realisation became guilt that became the burden of overcompensation.
She welcomes now, the men who pick me up from her driveway. They’re a comforting reminder to her that maybe there’s still time for her to undo years of sheltering me from social interactions. Time for the desires she never realised I had, to be satisfied.
These pickups have become more frequent; seeing happy, albeit non-disabled, couples on my Twitter timeline has reignited my resolve to go on another 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 get me inside the car making sure he listens to my directions on when to turn when we stand together. This is foreign to him, but he meets it with enthusiasm and diligence in equal measure.
Next, removing the footrests and folding the chair. He’s surprised at how easy it is. Finally, how to position the wheelchair in the boot to not obstruct his rear view.
It’s the last time she’ll probably ever see him. After tonight, I’ll eventually grow tired of willing him to see me as more than just his cool homegirl like I did the last five times I went on a date, just like this one.
“Are you okay? I noticed that your hands were shaking.” When I tell him about my persistent tremor which neither indicates nerves or fear, my reflex is to search his face for a sign. Is this emotionally laborious for him already? I assure him that he’ll get used to it, desperate that he buys this truth I can’t confirm.
Maybe I am nervous, nervous that I now need to be smarter, funnier, wittier so that this hard work will be worth it for him.
What has characterised my experience of dating as a disabled woman, at least one that is Black and fat, is either feeling like I have to assimilate they way I have all my life, bring only the palatable parts of my disability, latch on to any attention I get even from the most undesirable and abusive men or, be more than just disabled.
This is not a unique experience; too often, the burden in 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. To be accepted. To be loved.
These “too disabled” women are the same women who still languish out of the healthy, affirmative, and nurturing relationship space 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 continue, then, to exhaust themselves writing think pieces like these. Coddling “We- all-have-disabilities”-ass men. Continue to smile at being scoffed at when asking to be matched with single friends. Pretend to accept the same disappointing answer that always seems to be reserved for disabled people; maybe it’s not your time yet or that they’re trying too hard or that the inadequacy lies within them for not loving themselves enough or for placing too much value on men’s validation.
We’ll continue to unpack normative womanhood and hegemonic gender expectations ad- nauseam. Bargaining our bodies for the attention we would otherwise, never keep. Continue to manipulatively preamble shooting our shots with “I’ll understand if you’re not interested. It can be overwhelming”. Guilt-tripping people into false admissions that it was our disability that turned them away, not our problematic politics.
We’ll embrace emotional and sexual abuse; welcoming it as a rite of passage to a promised land where the companionship we so desperately want will, at last, no longer be kept by the denial of our disability.
Featured image via Pikist
Thembelihle Ngcai was born with Spinal Muscular Atrophy Type 3. Having grown up marginalised in school, she’s passionate about education being inclusive and accessible to all disabled children. She’s enthusiastic about undermining the desexualisation of disabled people and the representation of disabled people in pop culture.