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.
16 responses to “Steven Spohn: We’re Not Going Anywhere”
Anything I say right now would be woefully inadequate, so please forgive me for not having the right words to express my feelings. Steve, I am in awe of your eloquent writing, and in awe of you. I have good days and bad days (don’t we all) but you have made today a good day. Thank you.
I’m not on Twitter, but I have a carefully-curated collection of people I follow. You are now on the list. Yes. Keep pushing forward. You rock.
(And thank you, Chuck, for introducing me to Steve.)
We are all disabled in some way, yours is merely more obvious than some. For whatever it’s worth, you are more than welcome to my little tribe any time, and I would love to join yours.
I am going to agree with @Clovis… I have no words… well no words that will seem to fit. I will say that this is truly inspiring for me. Thank you for sharing this story. Your life. I am not disabled. True. But your views and inspiration put me at the disadvantage. I find you blessed and hope to be like you someday. Thank you again. Thank you.
It’s difficult for me to be coherent just now, Steve, your words are still resonating and replaying. Thank you for sharing your wisdom and insight here. I’m so glad I subscribe to Chuck’s posts. I hear Randy Newman’s “You Have a Friend in Me” playing in my head. You do have a friend in me.
I write this knowing that a block and (if possible) a lot of down votes are coming my way. I feel for Steve and am NOT one of the people who think that his live is sad and pathetic. I don’t think I am strong enough to stay sane if I have more to deal with in my fully-employed, home owning, grandkid loving life so my first emotion is admiration for his drive and mental toughness.
My issue is with the timeliness of this post. Because my 2nd emotion was how grating it was to see the title of this on your blog so close to the murder of George Floyd. It was a Wait, What?! moment for me as an aunt to 3 (soon-to-be) black men and grandmother to another. Perhaps I’m being too sensitive, and I certainly don’t expect any non-POC to fly my flag as a matter of course.
Any insensitivity over the post’s title is:
a) on me, as I just nabbed a bit from the post and used it as a title
b) unrelated to the vicious murder-by-cops of George Floyd, and unrelated to any kind of Black Lives Matter
That said, I’ll go ahead and change it to reflect that, and thanks for the head’s up.
Sometimes it seems like the world is full of people who think they’re the Captain of the Lifeboat and they get to decide who to push overboard. To add insult to injury, many use the Great God Economy as the measuring stick, like humans only count as real human beings if they produce money (usually for someone else).
Thank you for sharing your thoughts and wisdom. Sorry people can be such assholes, hiding behind some stupid twitter handle and not even showing their own face most of the time.
Now I’m off to subscribe to your YouTube channel. 🙂
Well said, Steve. Subscribing to you YouTube, and sharing this story out – a lot of people out there need to look past their own lives and rethink their values. Hopefully your article can help them do that.
Steve you have made some fine lemonade with your life. You are a Champion and best of luck with your YouTube channel!
Thank you Steve for the wonderful article. I feel like you’re kinda teasing us though. We need a glamour shot of those intoxicatingly blue eyes!
Was lovely to read your blog post regarding being suddenly one of the possibly disposable 3%! I also found myself as part of the 3% as I started chemotherapy in January. Whereas my quarantine was planned for, the rest of the world joined me and suddenly the plans that had been made to get through a tough six months were tossed right out the window.
Not only was I possibly disposable, I was also now having to go through all appointments and treatments on my own. No family or friends could come to sit with me, no friends could visit me at home, no family could come to give a hug.
But much like yourself, I found that my connection with the people who I game with and chat with through Discord were my team – always there to send a virtual hug or cookies and ready to play whenever they could. Having friends from around the globe, there is always someone around when one of us needs a partner to clear a POI or just lend an ear.
Over the last six months, my group has supported each other through not only my chemo, but also the deaths of a mom and a grandma. We’ve celebrated birthdays and anniversaries, helped each other look for jobs and re-write resumes, budget on reduced incomes, and sent care packages to those of us who needed just a little bit of help.
Our group includes members who have Lupus, Meniere’s Syndrome, Asperger’s, permanent disabilities, MS, diabetes, and cancer. But none of us think of any of us as disposable.
Keep on keeping on, good sir, and please know that other people may find us disposable, but we consider us (and you!) essential!
Thanks for Sharing!
They say no ones life is a promise, neither Is anything else. Life has handed you a terminal illness, yes, but it’s capable of handing out a card to anyone, anytime. I have disabilities too, life threw me a card and disabled anyway, I had a stroke too…. that stroke could have been it that day, no matter what else I had or didn’t have. Life is that fragile.,
For all of us.
You’re not worth any less, or ‘disposable’, and their views just show they don’t fully see nor appreciate the gifts they have, they don’t fully see that one day someone could be choosing to save their life, or the life of someone they love or know…. there are people out their doing it everyday, in multiple ways.. And one day it could be for them.
Some people don’t understand unless they have no choice but too understand either… so sometimes I think its worth letting them say what they feel because I wouldn’t want them to truly understand. I wouldn’t want that for them.
so yep try to cherish the good, let the good hold you through the negative..
And that from me is quite rich.. I have depression and anxiety both.
And its dark as of late..
Take care of yourself,
Not gonna lie, Stephen, those horrible Twitter comments you got brought out my inner Angry Momma Bear, but at the same time I have no doubt you’re smart and classy enough to take them down yourself if you choose to, without a crazy woman like me wading in. (The offer’s there if you want it though. 🙂 )
I hate that there’s this culture of ‘vulnerable = disposable.’ It was kind of there even before the virus, but it seems to be rearing it’s horrible head with a vengeance now. I hope you’ve got all the medical stuff you need now, and that you stay safe and well through these troubled times.
Steve, your words are still resonating and replaying. Thank you for sharing your wisdom and insight here.