It might seem like Steve Way is living the dream. Last year, he gained renown as the feisty, foul-mouthed best friend in Hulu’s critically-acclaimed Ramy, and he’ll star in a second season later this month. Additionally, Way does stand-up comedy, is a public speaker and is developing a series for Apple TV+. But for more than 800 days, Way has been fighting for his life in a nonstop battle with Horizon NJ Health, a Medicaid provider.
Born with muscular dystrophy, Way is asking for 84 hours a week of personal care assistance — 12 per day — instead of the 60 hours a week he currently receives. “My parents are getting older, and my girlfriend works all day,” says Way. “Also, my life doesn’t stop on the weekends.”
For Way, being alone could kill him. He needs assistance with everyday tasks that most people take for granted. We see this reality onscreen in Ramy. The cold open for the second episode takes place inside a bathroom where Ramy holds Steve (his character goes by the same name) upright on a toilet. Humming a tune, Steve finishes his business, and Ramy wipes him. “Don’t half ass it — I know when your heart is not in it,” instructs Steve. Moments like these fill the series and feel undeniably human.
“That is why the show resonates with people,” says Way. “It’s authentic.” Created by and starring stand-up comedian Ramy Youssef, Ramy has been praised for its portrayal of American Muslims. Youssef won a Golden Globe for his performance in the show.
Like their characters, Youssef and Way are best friends and even met in a similar way. “I had just started fifth grade, and it was my first time at a new school, and 9/11 happened,” explains Way. “Kids hear the news and they hear parents talking, and they see Ramy and start making assumptions. For me, as the new kid, it was hard to make friends, especially being disabled. We didn’t know it at the time, but doing the show really made us realize that we bonded over the shared connection of being misunderstood.”
Real Life Goes On
After countless phone calls, letters, assessments, faxes and even taking Horizon NJ Health to court, Way, who also has trouble swallowing and is at high risk of aspirating on his own spit without assistance, has gotten nowhere. According to Horizon NJ Health, he’s not disabled enough to qualify for more hours. “I’ve lost friends from the same lack of care I’m currently facing,” says Way.
PCA hours are determined by guidelines that determine how disabled someone is. “Not being able to go to the bathroom by yourself gives you a certain number of hours, but needing to use a diaper will get you more. And no, I’m not wearing a diaper,” says Way. “If you have a trach, you’ll get more hours than someone like me who uses a non-invasive ventilator.” Besides this, no other factors are considered, and at no point does the person who determines the allotment of hours even meet or speak with the client. “We can’t even FaceTime,” says Way. “In the most dehumanizing fashion, your entire life is reduced to a couple pieces of paper with a rubric created by nondisabled people, who could never fathom my daily struggle for survival.”
Despite this, Way considers himself lucky because he lives in a state, New Jersey, that is known for being generous with PCA hours. “It’s so horrible that I have to say that I consider myself lucky for getting the sub-minimum care to survive, but I have friends who only get five hours a day,” he says.
With the presidential election looming, Way advocated for Medicare for All and Bernie Sanders for president. “My goal is to use my growing platform to bring awareness to this and to get in front of lawmakers,” he says.
While these issues keep Way up at night, he is looking forward to all 10 episodes of the second season of Ramy being released on May 29. “People are going to talk about it,” he says. “It brings our friendship to a whole other level.”