How It’s Actually Like Living With A Disability

Being born different or living with a disability in society means one may have to face the difficulties of seclusion and being the outcast within communities. Unnecessarily – Thembi Ngcai lets us in her reality of living with a disability.

By: Avumile Mbhele

We had a chat with Thembelihle Lily Ngcai, a published essayist and speaker, and an advocate for inclusive education and disabled people’s sexual and reproductive health rights.

Lily is a qualified journalist at Rhodes University, working in the office of the Premier as Deputy Director of Administration Services in Gauteng. She is currently enrolled in the Disability Studies offered by the Commonwealth Disabled People’s Forum. 

“When I’m not advocating for inclusive education and the sexual and reproductive health rights of disabled people, I’m raising awareness on all things disability on my Instagram, sleeping, or eating Carbonara at an Italian restaurant,” she said. 

Thembi has a physical disability and she uses a wheelchair as a result of Spinal Muscular Atrophy Type 3, we asked her about her disability and if she was born with it. “Spinal Muscular Atrophy is a genetic neuromuscular disease which results in the wasting away of proximal muscles. Though no one in my family has it, my parents had to have a defective gene for me to be born with it.” she said.

Speaking about some of the challenges she has faced living with a disability, she said, “I have been treated very poorly by education institutions and employers (even prospective employers) who have tried to limit my dreams because accessibility is “too much hard work” or because they do not believe disabled people have much value to add to a workplace. I also grew up unable to relate to my peers – the activities, even social ones, which were so easily accessible to them, I never had the opportunity to partake in. For most of my life, I have sat on the periphery, waiting to be asked to the dance, waiting to be invited to a night at the club, waiting for men to see me as desirable and waiting to be SEEN.”

Her entire life has been anchored by the support of her family, although none of them knows and understands how it is to be disabled because she is the only one with a disability in her family. Nonetheless they have encouraged her to dream beyond her limits and created safety nets for every fall along the way. However, people outside her family may see and treat her differently. Enquiring if this was the case, Lily says, “yes, even the people who do it with the best intentions. Some undermine or mock me but there are also loving ones who create well-intended but suffocating safety-nets which shelter me from being a young woman. The most common behaviour of both these kinds of people is that they strip me of my agency – they infantilize me and make decisions on my behalf rooted in the belief that I am incapable of making “good” decisions on my own or that they know better.”

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Naturally, Lily’s mood and social skills would be affected by her disability and as she reflects more honestly on her life, she says she realized that the seemingly unexplained rage she sometimes found herself in, stems from being othered all her life. “When you’re the only disabled person in your family, school, social settings, and even at your job – you become acutely aware of your disability. You become obsessed with where everyone is versus where you are. You ask yourself, was I not invited to the roof top party because I’m disabled? You ask yourself how much further in your career would you be if you were not resigning from ableist jobs. You ask yourself why you’ve never been asked out on a date by someone you like. “Why can’t I be like everyone else?” never stops nagging you and sometimes it can fester resentment.” she opened up.

There’s more, Lily still has to deal with people starring at her and some going as far as asking her inappropriate questions about her disability. She does admit that in most cases, she doesn’t notice  when people stare at her. “I’ll only be aware when my family, for example, asks the person why they’re staring. It greatly bothers my family and friends” she continues to you. “Disabled people are burdened with questions. Most of those questions are instrusive, inappropriate and not in good faith; they’re intended to diminish you or further the divide between the non-disabled person who’s asking and yourself. The most common question strangers ask is, “Can you have sex?” In general, I answer people’s questions but there are times when I give vague answers or just drive away from that person,” she admits.

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Having spoken to Lily, one thing was for sure, there are a lot of challenges and negative experiences that came with being disabled, but there was another thing very apparent; that rising to the occasion and living your best life was possible regardless, you just needed to have a positive attitude –  and Lily had managed to find that attitude within herself and ran with it.  “In the last two years, I took a personal journey to interrogate, in particular, my childhood. I wanted to understand what happened to get me to my present and how I could use the lessons learnt to better the next chapters of my life. One of the defining realisations I came to, was that I had to relinquish the fear of missing out. I had to finally embrace the life I had instead of holding my breath for a different life. Once I internalized that, I was able to appreciate my life and all the wonderful things I have,” she attested. 

Relaying a message of encouragement to anyone who is living with a disability, Lily said, “The path to living a fulfilled life as a disabled person is not linear. It requires courage. Courage to not settle for the meaningless life society says you are destined to have. Courage to want more, courage to advocate for more and courage to not question if you are worthy of the more you desire. But stay the course, it’s worth it.”

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