My Ehlers Danlos and Postural Orthostatic Tachycardia Syndrome mean I’m often awake at odd times of the day. My shoulders roll out, a rib slips, and I’m awake until the pain dies down. My wrist had popped out, and at 4am on Wednesday the 14th of March 2018, a little Guardian notification popped up on my phone, telling me Stephen Hawking had passed away at the age of 76. I sat, resolved in deep thought about a man who was my largest role model, for both his meteoric scientific achievements and his normalisation of disability. I realised that this was a make-or-break moment in journalism: how ableist could it possible get?
In Stephen Hawking’s death I was hoping to see a celebration of his scientific achievements; a fantastic chance for his theories to be explained accessibly to the masses. A moment to re-ignite the world’s attention and love of scientific pursuits. Instead, I was greeted with a barrage of ignorant, belittling, and outright rude recantations of his life.
Steven Hawking in the 1980s
For those not au fait with the term ‘abelism’, it’s much like racism or sexism: “discrimination in favour of able-bodied people.” It’s fetishization, bias, ‘inspiration porn’, bravery. It’s everything I, as a disabled woman in 2018, am profoundly against. I’m going to use the social model of disability: or ‘disabled-person’, and I believe we are disabled only by society’s responses to our bodies; not by our bodies themselves.
Disabled people are put on a pedestal. We’re rewarded for basic, and boring functioning. A disabled person, in my eyes, isn’t brave for going about their day to day lives. I am not brave for coming into work the day after a major hip dislocation and A&E visit. If anything, I’m an absolute idiot.
In the gym with my crutch, physio bands & 24 holter monitor.
Disabled people are not brave for getting up, brushing their teeth, or doing their food shopping. A disabled person is brave for running into traffic to save a cat. Or intervening in a hate-crime. Or sustaining years of medical malpractice at the hands of ignorant doctors. If you think I’m brave for remembering what day it is when I wake up, then I’d suggest you have a bit of a reality check. I was brave for persevering through 10 years of incorrect diagnoses. I am brave for standing up and calling people out on their bullshit.
Bravery leads to ‘inspiration porn’. Ever heard the phrase “The only disability in life is a bad attitude”? As Stella Young points out on her 2012 TEDX talk, “no amount of smiling at a flight of stairs has ever made it turn into a ramp.” She’s not wrong.
Stella Young in 2012, a disability rights activist, comedian, and journalist.
I’ve been called inspirational multiple times, in many different circumstances. I’d be much happier if people were applauding my academic prowess, my photography skills, or my progress in skateboarding. (Yes, disabled people can skateboard). Instead I’m reduced to a set of symptoms, pathologies, and hospital visits. This of course isn’t always the offenders fault, it’s years of socialisation and normalisation. Disabled people often exist within abled spaces purely to inspire hope, overcoming, and perseverance. Maybe I should look at becoming a de-motivational speaker. There are plenty of inspirational women out there; and I’d like to join their ranks one day – but for now I’m just a woman going about her daily business trying to study.
I speak so openly about being a disabled woman in science because, well, I’m a disabled woman in science. There’s virtually none of us out there and speaking about it. We are invisible, imaginary, and crossing multiple intersections with very little for it. Disabled people, as a whole, are hidden away. How many disabled doctors, manicurists, teachers, dog walkers do you know of? Probably very few.
Why’s that? Because the society we live in prevents disabled people from achieving what they intend to do. Disabled people often end up in poverty because abled-bodied people don’t understand or believe they can be anything else but disabled. We are painted as frauds, scroungers, cheats, fakes. We are often not allowed to become productive members of society, because of abled people’s prejudice. I only fit into this ‘achievement’ narrative because I, like Stephen Hawking, was privileged enough to have access to higher education.
one of the ableist images floating around Twitter: depicting Hawking’s leaving his chair.
Disabled people’s narratives are constantly erased in favour of ‘overcoming’ their problems. It breaks my heart when I see my friends get excited that my crutches didn’t accompany me to the pub/club/social situation, “Oh! You don’t have your crutch! That’s excellent!” they proudly exclaim. What they don’t realise is that they are effectively erasing a massive part of my life. They want to see me be not disabled. They (subconsciously) believe that disability is de facto wrong, bad, and sad. And that’s not their fault, we are socialised to see disability as a big fat sad thing.
In fact, being disabled has done nothing but enrich my life. It drives me to push myself to my limits. To constantly achieve, succeed, and exceed others expectations. I have no idea who I’d be without my disability, and I have no interest in finding out.
Stephen Hawking was not “bound to his wheelchair”. You don’t call someone with glasses and “lens bound”, so why say that about another tool people use to improve their lives? His wheelchair was his freedom, just like my crutches are. Stephen Hawking did not “suffer from” ALS. He lived with it. Just like I don’t “suffer from” my Ehlers-Danlos. I live with it. What I do frequently suffer from is able bodied nonsense and a society built against me. Stephen Hawking was not “inspirational” for living his life in a way different to able-bodied narratives. He was inspirational for being a ground-breaking physicist, and dedicated voice of reason. He was also a misogynist, and there’s nothing inspirational about that.
Here’s some excellent think-pieces on how Hawking’s death has been portrayed in the media