Steve Spohn is a friend and an inspiration, and he’s always welcome at this blog. Give it up for him:
I have a sad, pathetic life as a terminally ill, profoundly disabled man who uses a power wheelchair and lives on a ventilator, according to the Internet. I mean, most of it is true; I am profoundly disabled, born with Spinal Muscular Atrophy (SMA), and it is a terminal illness. I do use a wheelchair that’s more expensive than most BMWs–$56,000 according to my insurance–and I do use a ventilator.
But my life is anything but sad and pathetic.
In February, I was scheduled to go to Austin, Texas, for SXSW to accept an award for my advocacy work championing people with disabilities in the videogame space. They called it “Champion of Change.” Fancy title, right?
Sadly, that wasn’t meant to be. The world had started shutting down. A new virus had come along, which we didn’t know a lot about, but it was definitely worse than the common flu. All we knew was that things were terrible, people were dying, and someone on a ventilator has a much more difficult fight against this new invisible opponent.
The news came in fast and furious. All of a sudden, I found myself being tossed into a new category of “the 3%.” But it wasn’t like the fun “3%” like the ones who hold all the wealth in the world where I would get woken up every morning on an aircraft-carrier-sized yacht floating in international waters by a violin player gradually raising me from my slumber in my 24 ft.² waterbed covered in the feathers of the last remaining dodo bird so that I can be spoonfed cornflakes made of real 24 karat gold.
No. This 3% was much less fun. I was suddenly a part of the disposable 3% of immunocompromised individuals who were sick with underlying conditions and “probably going to die soon anyway.”
Like all Tales from the Internet, some people were exceedingly kind; some people were not. But the flavor of the unkind comments was…. Different. Most trolls will make fun of my weight, disability, or the fact that I like listening to Taylor Swift. These, however, focused on something different: the value of my life.
I’ve been an advocate for 15 years, and I’ve been disabled for the entirety of my life. Having to fight to prove I have value as a human being is not something new for me. Almost everyone who has gazed into my intoxicatingly blue (humble brag) eyes still acknowledges that I’m a real human being with feelings and aspirations, even if they don’t want me as a(n) employee, lover, friend, etc.
After all, I have a life, and that’s worth something.
For a solid month, I heard celebrities, politicians, military personnel, civilians, and people in between suddenly questioning if shutting down the country was worth saving the lives of people like me. The worst of them were tweeting me directly that saving my life and the lives of people like me was not worth any inconvenience to their everyday routines.
As you might imagine, having that thrown at you repeatedly has quite a taxing effect on your mental health. Yet, life for me really isn’t that much different than it was before the epic lockdown. My days out have gone from twice a week to zero. And my home care nurses are wearing masks 24/7. Other than that, it’s pretty much life as usual. You know, besides the whole “somebody coughing on me could kill me” thing.
But beating the odds is not something new for me. I’ve been called into a WWE cage match more than once, and I’ve come out victorious every time. How? Technology!
When I was very young, a severe flu put me in the hospital. Things got so bad that I ended up on the ventilator for the first time. It was horrifying. Imagine a nine-year-old trying to comprehend, deal with, and accept that I would never breathe on my own again.
Luckily for me, Children’s Hospital of Pittsburgh had an inter-hospital videogame system explicitly set up to encourage children to lean on each other for support. They created a virtual paradise full of palm trees, sunshine, and an oasis in the middle of rolling green hills and sand as far as you could see. Flowing into the sanctuary was a waterfall where I would meet a lovely pink star. She was my everything. We talked for hours every single day. We would commiserate, complain, and share stories of our favorite memories, including our pets!
Thanks to my inpatient best friends, Vicodin and Morphine, I don’t know exactly how many times we met, only that it was a lot. And in the end, I continued visiting long after that beautiful pink star stopped shining in that magical, virtual place.
I go into this and an entire 10-minute story about the time I wanted my mom to let me go on my new YouTube channel, which sounds like a plug (and it is, go subscribe, it’s free), but more precisely, it’s another part of the technology that is saving my life. I started this channel during the Flatten the Curve initiative as a way to help me follow my dreams while life tries to crush them. I had planned to start making the pivot to become an inspirational speaker this year. I’d rather be out on the circuit doing talks and inspiring audiences. However, fate will not allow that until there is a vaccine. But in the meantime, I can hone my skills, making videos from the speeches I want to give.
See, technology is as much the hero as the villain in my story. Twitter makes me feel bad sometimes, but it’s also the reason I’ve been able to meet and hang out with cool people like Chuck. I’ve gotten to have conversations with The Rock, Ryan Reynolds, Gary Whitta, and so many cool people. Without Twitter and Twitch, despite all of their flaws, my social life would not exist, and I doubt my career would either.
YouTubes allows me to continue chasing my dreams despite a nightmare level virus that’s wreaking havoc on the world.
Being a Partner on Twitch allows me to build a community of positivity and laughter, full of amazing people that keep my social life alive and my creativity flowing.
Google’s texting via computer is what allowed me to start texting (the adult kind and the kind talking about chicken nuggets) because I can’t hold or use a regular cell phone.
Assistive technology transforms my Rocket Raccoon hat into a videogame controller capable of enabling me to play video games. And without access to those technologies, who knows where I would be? Certainly not on a red carpet at the biggest show in the video game industry.
On May 21, 2020, we celebrated Global Accessibility Awareness Day (GAAD) — a fantastic day that brings attention to technologies used by millions of disabled people around the world.
When I started this story, I told you my life is not sad or pathetic. Thanks to advocates fighting for accessibility in technology, I lead a terribly wonderful life full of dreams, aspirations, and hope.
Disabled people like me are just people like anyone else, worthy of love, laughter, and a bunch of cookies. We are not disposable. And indeed not a 3% statistic to be written off as a rounding error. We are each unique and individual. Disabled people can be helpful, mean, kind, selfish, generous, prickly, fabulous, and/or any other adjective you can imagine. Each of us has our own goals. Some of us are chasing fame and fortune, and some of us are just trying to live life. No matter what we choose, it’s no different than the lives of our non-disabled friends.
When you see someone with a disability, don’t let yourself feel bad for them. Don’t let Internet trolls or Facebook heroes tell you that our lives suck. Our lives are more difficult in many ways. That’s true. If you think wearing a mask is a hassle, you’re not going to love using a ventilator; I can promise you that.
Carry forward the mantra: Everyone’s life is every bit as valid and as important as anyone else’s.
Me? Well, I do have a terminal illness, and I’m well aware of it. But I use technology to keep pushing forward and do what I can to make a difference in the world.
I will continue fighting against ableism and promote acceptance for disabled people in mainstream culture. But it’s not a battle that I fight alone. There are many cool advocates with disabilities living their lives publicly so that we might inspire others in the right way. Not by merely getting out of bed in the morning, but by doing really cool stuff.
To you, my lovely reader, I ask you to go out of your way to find disabled content creators that speak to you. If it’s me, cool, I hope you’ll click one of the numerous plugs that Chuck totally didn’t notice above (love you) and follow my journey (Hi Lin-Manuel Miranda).
But maybe I’m not for you. I can be loud on Twitter, sarcastic on Twitch, and hey, that’s perfectly okay if you’re not into that. My name isn’t Neo. I’m not The One. I’m One of Many, many people with disabilities representing our community.
Find disabled people putting out messages of positivity and inclusion that you feel resonate in YOUR soul. Invite them to be members of your tribe. Follow them. Amplify their words and give them a chance that many in society have not: the opportunity to be seen. Whether you have three followers on Insta, 400 on Facebook, or 2,000,000 on Twitter, you can help us “normalize” being disabled.
Thanks to technology, we’re out here. And we’re not going anywhere.