Listen to this story:

On a wider or a more encouraging note, I would tell them that all this is very hard to deal with and it feels super bleak sometimes. But to me, my rebellion, I guess, is that I refuse to let the powers that be take my pursuit of a joyful life. And that doesn’t always mean that I get everything the way I want it to be. There are so many things that I wish were different and easier, and policy change takes time. But I stay hopeful and I stay engaged in a way that I can.

And I strive to be happy because these systems and the medical reality of my disability have taken so much from me. But I think that one of the most powerful things you can do is to stay joyful in the ways that you can in a disabled body. Because it’s not my disability itself that really gets me down, so to speak. I mean, sometimes because there are some immutable things about disability that just kind of sucks sometimes. Like am I happy that I have chronic pain at age 30?

No. But for the most part I’m very accustomed to living in a disabled body. And that’s not really the stuff that bothers me on a day to day basis. It’s the way that people treat us and the way these programs are set up to dehumanize us, in my opinion. So it’s always my goal to force them to look at me as a human being and also to remind them that my joy is not something that belongs to them.

They can take all of my money, they can take all of the flexibility in my life. They can ask me invasive questions that they would never ask anyone else. But my joy does not belong to them. And I refuse to be a hopeless lump that gets written off as, um, not contributing to society. Quote quote so much of a person’s identity, I think, is wrapped up in what do you do for work?

And it can be very hard when you can’t work in a traditional way to feel like you have value. And I guess that’s been the challenge of my adult life, is to quiet all those voices and do things. Anyway, I’m a social worker by training and I’m very good at what I do. I can’t get paid in the way that I would like to, at least not right now. And it’s super challenging when so much of adult life is career focused, whether in relationship building or friendship building or whatever.

It’s so much it’s like, what do you do? And it’s like, well, I’m a social worker, but I’ve sort of been deactivated by the long term care system. But I have to remember that I am extremely talented at what I do and I didn’t train for nothing and that I can still use my skills in a way that makes the world better. And I remain hopeful that in my lifetime, some of the people who make these policies will see the absurdity of how it’s all set up. Because out of one side of their mouth, they’re saying, work disabled people, get up off your butt and do something.

But then the help that you need to literally get up off your butt requires you to be impoverished. It’s like they’re yelling two contradictory things. And it affects relationships. It affects everything.