Rebekah Taussig: A Conversation
Posted by: Rebekah Taussig, Writer and Influencer (Kansas City, USA)
I’ve been paralysed since I was about three years old. Doctors found malignant tumours wrapped around my spinal cord when I was just a little over a year old. After two years of chemotherapy, six weeks of radiation, and two invasive surgeries, I was cancer free. I also began to drag my legs and fall; instead of walking upright, I started to crawl more and more. I’d pull myself up the rungs of my bunk bed or onto the couch using my arms.
My mom carried me around on her hip and I used my red tricycle to scoot around the neighbourhood. I didn’t get my first wheelchair until I started school a couple of years later and needed to keep up with a standardised rhythm. It was hot pink – I loved it.
When I was younger, the challenges I faced as a wheelchair user felt more abstract. I felt different; separate, isolated, uninvited to join in the circle and I translated that feeling into personal shame. I was the deficient one. I was the problem.
As I’ve gotten older, I’ve started to notice structures, designs, and social stigmas that contribute to this feeling of difference. For example, as a person with a disability, it can be difficult to find a job. This is not usually because we are incapable of work, but because work spaces and schedules are often unaccommodating and employers can be biased or uninformed about disabled bodies.
Ditching the shame that came along with feeling like a living defect has empowered me to push against the larger, systemic problems.
For me, knowing the difference between a problem that resides solely in my own body and a problem that is created by external forces is a huge piece to navigating those challenges. Not being able to fit into the world that’s been built around me does not mean that I am fundamentally and inherently unacceptable; it means that the world hasn’t been built with my body in mind.
It sounds like a small shift in perspective, but when I understood this, it changed everything for me. Ditching the shame that came along with feeling like a living defect has empowered me to push against the larger, systemic problems.
The truth is that there is a whole, vibrant community of people who also live in disabled bodies and share so many of these seemingly singular moments with you.
My advice to new wheelchair users who are faced with adversity would be, know that you’re not alone. I spent a good portion of my life feeling like I was the only one with this particular set of experiences; the only girl who couldn’t find a prom dress that wouldn’t tangle up in her wheels, the only first-dater worried about whether or not the bathroom at the restaurant would be accessible, the only twenty-something making all of life’s big decisions based on access to health insurance, the only adult woman being stared at by the kid in the grocery cart while I picked out avocados from my wheelchair.
The truth is that there is a whole, vibrant community of people who also live in disabled bodies and share so many of these seemingly sin
gular moments with you. When you live in a world that is crowded with inaccessibility and stigma, it’s so easy to feel like YOU are the problem – the piece that does not belong. Connecting with the disabled community allows you to see bigger patterns. There are a lot of us who know the feelings. You are not alone.
Read more about Rebekah on her blog here.