Manchester, UK

Why Talking About My Disability Is Still Complicated

Rachy Lewis wearing leather jacket and leopard print skirt

It was the wrong Café Nero the cab driver had dropped me off at, but at that point, he had already left the parking spot. I asked a lady in line for her coffee if she knew where I needed to go and she pointed me in the right direction about a ten-minute walk away. She helped me pull the door wide open and down I went rolling my wheels speedily to get to my appointment in the other Café Nero further down the road.

Just like that, I was running late again and trying to speed through the many bodies coming my direction who always seem to be walking in slow motion particularly when I’m in a hurry.
I finally saw it, the right Café Nero where someone I had never met was probably impatiently waiting for me. I got in, looked around aimlessly for the person I was meant to meet as I had absolutely no clue what he looked like, but something told me he’d be the one to recognize me instantly from my bulky powered wheelchair – of course, he did.

So, let me take you back a few days before this afternoon coffee encounter I’m setting up for you admittedly a lot more mysteriously than I should be doing. On a Tuesday afternoon, ironically the same day I published that infamous think piece I titled ‘The Truth Behind My Messy Inbox’, I received an email from one of my old professors from University asking me if I would be happy to talk to a current student who was writing an article on disability and education. It was the sort of thing I was doing just a year ago (that’s crazy!) and of course, I was happy to have a sit down with the person also knowing how hard it was to find people willing to do interviews with student journalists.

So, there we were the following Tuesday, sat across the table from each other in the *right* Café Nero on an afternoon the sky strangely wasn’t pouring down on Manchester.
He explained his project in-depth and I couldn’t help but think about how only a few months ago, I too was meeting strangers in coffee shops, recording their stories on voice apps and writing lengthy pieces on how impactful and interesting their lives were. But there I was, in the opposite chair for the first having to give interesting or insightful stories on what it’s like to live with a disability.

Rachy Lewis wearing leather jacket and leopard print skirt
Rachy Lewis wearing leather jacket and leopard print skirt

I thought I was ready, and I didn’t feel pressure or high anxiety as I usually do before doing things I never have before. After all, I knew what it was like to ask a bunch of questions to a stranger with the goal of trying to paint out their life as accurately as possible in a thousand-word piece. I also know to a certain degree what it’s like to write about disability in a deep and honest way as I’ve occasionally done on this blog. About a month after my first post, I reflected on my struggles with stuttering followed with posts on the anxiety that comes with travelling with a disability, and why I used to hide my disability on social media. In some ways, I’ve even been way more transparent on here that I thought I probably could be.

None of the questions the guy on the other side of the table asked felt particularly invasive, but I quickly realised most of my responses could have been summed up in two words ‘IT’S COMPLICATED’. Aside from his first question which needed me to answer the most basic-straight-forward question of all; ‘What is your full name?’, every other question saw me going back into the archives of my life trying to construct answers that didn’t leave him more confused than before. There was so much to unpack.

I found myself looking at the different areas of my life wondering exactly what was fully impacted by my disability, at what stage, and what other factors played a part in the experiences and challenges I faced. How did my disability impact my life? In what ways did it impact my relationships? How did it affect my education?

All of these questions could not be boiled down to a few sentences even if I tried. I’d answer a part of a question then think a little more, and all of sudden I’d have thought of a completely contradicting answer or a different angle. With each question, I felt like I was doing the same thing over and over again and I became genuinely scared that perhaps, I was giving too little information or maybe I was giving a little too much.

Was this and that particular thing a result of my disability or was it culture or race or gender or religion or my thought process or the way I’m perceived or something else. The more I tried to put it down to one thing, the less I genuinely could. 

Rachy Lewis wearing leather jacket and leopard print skirt

I guess humans are particularly complicated in many ways and maybe all the things that happen to us are just a ripple effect of other things that happened before. Maybe, there is no one correct answer to the question, how did you get here? Perhaps, there are a few different answers and maybe that’s okay too.

There are a lot of things that play a big part in my life that don’t completely revolve around my wheelchair and I have to consider those too in the quest for answers. Living my life with a disability is complicated and there is no one size fits all response or way to live with it. There are days where it’s the least of my worries and days when it is the thing that causes me to spiral the most. There are lifestyle changes I make, but there’s also another perspective on life I gain. There are mundane days, but there are also days it’s the cause of all the crazy. There are also days I feel like I can be inspirational, but there are days where I’m called an inspiration and don’t really understand why.

Sitting in that chair, answering all those questions also showed me that maybe I’m not yet truly as comfortable talking about my disability as I’d like to be. I have no doubt that I don’t do it enough both publicly and privately. I know I’m in no way forced to and it shouldn’t be a big deal, but over the years, I think I went from not wanting my wheelchair to be all people wanted to talk about, to not talking about it at all. From one extreme to the freaking other.

Finally, I will say that it is complicated, but it’s also a reality of so many people, including me, and that’s a reason to make it a comfortable conversation to be had without sounding patronising or condescending.

We talked a bit about our feelings on the journalism course and said our goodbyes in front of the blue and black building. I wished him luck on his project because I had a feeling it would be a little hard to write an uncomplicated article.

Your restless romantic roamer

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