You and your girlfriend recently moved in together. How’s that going so far?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. 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.
What exactly does the care you require entail?It’s a pretty big range. It 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.
And you weren’t able to secure that extra care before moving out?No, 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. 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.
What is your outlook on that front—in terms of the things you’re fighting for—in light of the new administration?The fight is definitely not over. I’m worried that people will get complacent and give Biden a pass for things they wouldn’t give Trump a pass for. Like now he wants to bring in Neera Tanden, who has advocated for cutting social security before. If Trump did that, everyone would lose their minds. But because it’s a Democrat doing it, I’m afraid they’re going to make excuses for it. That’s what scares me the most.
Given all the challenges, what has living together been like?Given the time and the circumstances, I think we’ve adjusted and adapted very well. She’s helped me learn how to share my space. I’ve never had that before.
I’ve learned how to really budget my time and how to really appreciate time with someone. She works so much, so I try to really cherish every minute that I have with her. There have been times, obviously, where things have been tense. But I don’t know anyone in the world who hasn’t [had those feelings].
Now that you’re living together, is marriage on the table? Is that something you’ve talked about or are considering?Definitely. But 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. 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.
Wow. That’s not only a barrier to marriage but a barrier to success.It’s a barrier to life. 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.
Yang-Yi Goh is a GQ commerce writer.
A version of this story originally appeared in the March 2021 issue with the title “The Maddening Injustices of Dating While Disabled.”