Orange Is the New Black and How to Get Away With Murder star speaks about the disease and another way of looking at health
Before going to the oncologist’s office, I’d asked if he could wear an N95, and the staff said he’s not really a masker. He walks in the room and he starts putting the mask on. And he says, “We’ll do this quickly before I suffocate.”
I think people don’t understand that. You’re asking, “Hey, would you mind protecting my life?” When someone’s like, “Oh God, what a pain in the ass,” experiences like that make you reticent to ask in the future.
Having felt how terrifying it is to feel like your health is free-falling in a world, a system, a country that does not value disabled people and does not value people without their labor has been clarifying to me on how I want to be able to show up for someone else.
If we’re only focused on individual change and not on the systemic issues that actually have a larger impact on health, like poverty and lack of access to medical care, then what we’re doing is not really about health. It’s about thinness and desirability and social status.
The risk mitigation in my life is very high. When your health is taken away from you, you realize how important it is. There’s not much that feels worth the risk of another Covid infection.
Even as an act of solidarity, picking a couple of those places, making a commitment to that and making that known is incredibly important. As someone who feels extremely isolated and abandoned by the rest of society, I don’t have the capacity any more to ask individual people in my life if they will take this on. That’s what the video was for.
If I push up to the point where I get brain fatigue, I start to feel like shit, basically. The fatigue becomes exponential very quickly. It wasn’t until later that I realized that when I reach the limit, that is because I’ve gotten beyond it, and that has a cost.
I’m new to experiencing it first-hand, but a lot of the systemic oppression that disabled people face is neglect. It may not be outright vitriol. If you don’t take the action to make the space accessible, we can’t be there, or we can’t be there safely. We have to risk our lives. If you cut the funding for programs that people need to survive, you just get people who kind of fall by the wayside
I tell everyone that I have long Covid, because I want everyone to know that it exists. The guy who’s taking 27 vials of my blood in a lab, he’s like, “Damn, that’s a lot of vials.” And I’m like, “Yeah, it’s for long Covid.”
[With a wider audience,] it’s really more about the fear of people making assumptions about my abilities, and therefore my ability to work.
One of the most common ways disabled people are discriminated against is people making assumptions about their capacities and not consulting them about it.
The actor, known for roles in Orange Is the New Black and How to Get Away With Murder, revealed he had “never fully recovered” after two Covid infections. “Long Covid has dramatically changed my life,” said McGorry, describing symptoms including debilitating fatigue, depression, dysautonomia, Raynaud’s disease and brain fog, which he called “a cute little name for brain damage”.