Every Saturday, I work 7AM to 7PM as an EMT doing inter-facility transports. These Saturdays have taught me something: the moment people stop walking, they start dying.
Because once most people stop walking, they give up taking care of themselves. And in modern American society, once someone who doesn’t have money stops taking care of themselves, they get sent somewhere like “Garden Grove Skilled Nursing” where they are kept alive, but just barely, by techs making ten cents above minimum wage and nurses assigned three times the legally mandated maximum number of patients.
And living at Garden Grove* is a life worse than death. You lie in your bed and watch your TV and eat your gruel and digest it and then soil yourself and lie in your filth and call out for help but none comes until two hours later when a manager yells to “fix that smell” and they find you and clean you up. And you watch your mind unravel and degenerate and slowly come apart because nobody with a normal, functioning brain could ever last at Garden Grove. And then, after a few weeks or months or years or decades of life without living, you eventually die.
Unless you’re Greg*. Greg is a white man in his early 40s with tattoos on both shoulder caps wearing a sleeveless tee and lying on a gurney in the emergency room hallway near the corner they usually put the drunks. He’s got a barrel chest, thick arms, and skinny, atrophied legs—he was paralyzed from the waist down in an accident that broke his neck about five years ago. That was the second time he’s broken his neck, and this time, the doctors and physical therapists couldn’t fix it. Greg’s about 250 pounds and was probably a little under six feet tall when he could still stand. In other words: he’s built like a tank.
Greg came to the hospital because he was moving himself to his manual wheelchair since his powered one was broken and felt a sudden recoil and a sharp pain in his shoulder. He tried to push through the pain for a few days, and then went to physical therapy and got told that they would not do any normal PT because he obviously needed to go to the damn hospital. And so now here he is, and they scanned his shoulder and told him that he did indeed injure it, and now he’s going to need to make an appointment with orthopedics so that they can get him started on getting all fixed up. He’s pissed off about it—now his shoulder is fucked and he’s going to have to go through months of rehab before he gets it back to full function, and he needs his shoulders working so that he can be properly independent because Greg doesn’t live at a place like Garden Grove—Greg lives at home.
Actually, that statement is far too passive. Greg fights to live at home. Aggressively. Voraciously. Constantly. He keeps up the strength to move his 250 pounds of bulk from the wheelchair to the commode and back. He refuses to allow anyone else to clean him. He showers himself and cooks for himself and feeds himself and goes to the bathroom without assistance. He asserts his own dignity and independence in a situation where such an assertion is a radical act.
The system is not built to support someone like Greg; it is built to funnel people into Garden Grove because Garden Grove is a much simpler, neater way of “handling” the Gregs of the world. But Greg has pushed back against the pressures of this system. He’s pushed for referrals, resources, tools, and people who can help him to live his life with dignity. He has to fight tooth and nail for these things! People don’t want to help him do this because figuring out how to help this man maintain his dignity and independence while still living in his own home is a lot harder and more legally risky than just shipping him off to Garden Grove like they do with all the others. Because as Greg told me, if you’re paralyzed “they treat you like you’re intellectually disabled”—like you are someone who is not capable of adding a relevant, meaningful voice to the conversation.
But Greg keeps fighting. He demands to be taught how to give himself the enema he needs to have a bowel movement. He wears down his insurance until they give him the powered wheelchair which enables him to reach high shelves. He goes to physical therapy most days of the week and keeps up his strength because he will be independent and he will maintain his dignity and nobody is going to make that happen but him.
I learned all of this about Greg in the back of the ambulance, taking him home from the hospital. As we worked our way back to his apartment, he was brainstorming how he’d handle the new challenge of only having one usable shoulder—he was pretty pissed about it all, but he was thinking out how it could work. He talked through how physical therapy would be different now with one working arm, and complained that it would probably take him weeks to find an opening for an appointment about his shoulder. He also mentioned his job search—he’s trying to find a 9-to-5 where he can work remotely, and he was recently talking with one of his doctors about becoming a patient advocate; the work appealed to him.
Maybe if Greg’s powered wheelchair wasn’t broken, or if it had gotten fixed faster, he wouldn’t have overtired his shoulders and gotten injured. Maybe if the healthcare system was designed to support people in living independently instead of consigning them to a life of dependence, he wouldn’t have to fight as much as he does for every inch. Lots of maybes, but Greg doesn’t seem to dwell in them—he just does whatever needs to be done.
On my Saturday night drives home from my EMT job, I typically call my mom; that night, I told her about Greg. She was as impressed as I was—the sentiment was colored by the fact that my younger sister has Down Syndrome, and so my parents have been fighting for the last eighteen years so that my sister can have that same self-determination that Greg is striving for.
After hearing about Greg and his battles, my mom asked me something which stuck with me. She asked me if I’d asked Greg what tools he was missing—tools he thought could be useful for him in the future to continue maintaining his independence. And I realized that I never did.
I am twenty-one years old, and I don’t know what my career will look like in the future. All I know is that I want to give people the tools to help themselves—to give themselves agency, dignity, and independence. I don’t want to “fix” them—people are not problems to be solved. I want to work with the people who will never be all-the-way “normal,” and I want to help them take and keep control of their lives.
I want to design for Greg.
*pseudonyms
