Steve Way stars in Ramy (stream now on Crave), a semi-autobiographical series about the creator (and his real-life friend) Ramy Youssef’s life. He plays a disabled character in a comedic role, and he’s previously opened up about the importance of having actual disabled actors play disabled characters.
Way was born with muscular dystrophy, a disease that causes progressive weakness and loss of muscle mass. He recently shared details with GQ about his love life and how America treats disabled Americans with barriers that make it nearly impossible to get married. Way met his girlfriend Victoria on OkCupid almost seven years ago, and they recently moved in together.
The 30-year-old actor noted that they were kind of forced to move in together due to COVID-19. “It happened, but it was really forced. I wanted to move in together after I got more at-home-care hours from my Medicaid provider because if I didn’t get that, I would be alone for a couple of hours a day while my girlfriend is at work,” Way told GQ. “But my sister got COVID, and I had to bounce out of my parents’ house because the situation got to the point where they weren’t able to take care of me anymore.”
Way explained that his care starts with the basics. “Feeding me, dressing me, helping me go to the bathroom, giving me my medications. But then you have stuff like I’d get something in my throat, and I can’t cough it out, so I need help getting that up.”
He said that he wasn’t able to secure that extra care before moving out of his parent’s house because he lost his court case. “I lost my court case, on the grounds that based on New Jersey rulings of how disabled someone is, I’m not disabled enough. My ultimate goal is to change that rubric to make sure that everybody in my situation gets the amount of hours that they need,” he explained.
Way continued, “There’s no reason for it. Capitalism, that’s it. It’s greed. They just don’t want to spend the money. The extra hours that I asked for would cost my health insurance provider about $1,300 extra a month. In 2017, the then CEO made about $1,100 every hour.”
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Way also offered some details about how his and Victoria's relationship is both normal and unique. "I don’t have a choice to not be completely vulnerable. I have to lay everything out on the table right away. And I understand that that can be scary to a lot of people," he said. "The other thing is that she works a lot. She works in the restaurant industry. And, you know, statistically, those relationships don’t work out, either."
"I mean, people think that my girlfriend is either my sister or my nurse. Somebody even thought she was my mom once. I know her coworkers have asked her weird questions, and her friends didn't think that it would last. Stuff that would not have come up if I wasn't disabled," Way said. "Another thing in the disabled community is that because our bodies are kind of distorted, it’s hard to get at that right position. So it took us a couple of times to figure it out. It took a couple of tries to find that position."
Now that they’re living together, marriage is something that’s on the table, but it also comes with financial risk for Way. “I’d have to make enough money to where I don’t have to rely on government assistance and health care. Once I get married, it becomes joint income, and I’ll lose all that,” he explained. “Private insurance does not cover personal-care assistance at all. You can only get the at-home care I need on Medicaid, which means I can’t have more than $2,000 in my bank account at any given time.”
That barrier puts a hold on his marriage ideas as well as his level of financial success in general. Way points out it's “a barrier to life.” He continued, “But it’s all by design. It’s just to keep us living in poverty. I have zero credit. The money I make goes into an LLC that’s basically not attached to me. I just don’t touch the money. To get out of this, I’d have to basically make enough money to where I could just pay my personal-care assistant out of pocket—and that’s a lot of money. It’s just another thing I’m trying to use my platform to change. We still don’t have true marriage equality in this country.”
Way also noted that the biggest issue that people with disabilities face when it comes to dating is that other people don’t understand that disabled people are also people. “We have feelings. We might not necessarily have the same experiences as everybody else, but that doesn’t mean we’re not capable of having a relationship.”
Way says that he wants to become “the guy” working to fix disability policies. “You know how Jon Stewart was the guy for 9/11 first responders?” he said. “I want to be the guy for disability policy. If AOC reads this, I would love to have a meeting with her.”
Your move, Alexandria Ocasio-Cortez.
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