By: Sam Bickford
A Conversation on Disability and Identity with Allie Schmidt of Disability Dame
What makes you feel like you? The pronouns you go by? Your politics? People in your life accommodating your chronic illness in thoughtful ways?
A big difference between Generation Y and other generations is our strong interest in identity politics. Millennials are more sensitive to and invested in how people choose to identify themselves.
One identity category is disability. In the past, being “disabled” was seen as a bad thing. It indicated a lack of or a problem with a person’s body. Now, disability advocates and activists, like Allie Schmidt, editor of the #1 women’s disability website, Disability Dame, are doing all sorts of work to open up and reinvent what being disabled means.
Schmidt has a rare form of a motor neuron disorder that has paralyzed her arms. She started Disability Dame, a company that consults with businesses and brands on how to market universal design ( a design philosophy for buildings and environments that prioritizes accessibility to all people, not just able-bodied individuals).
I interviewed Schmidt to discuss identity labels, what it means to be disabled, and how identifying as disabled can build a community and foster personal growth.
Sam for YMyHealth: After receiving such a serious and life-altering diagnosis, why did you decide to start Disability Dame?
Allie Schmidt : When you receive a diagnosis that is so severe, you’re looking anywhere for answers. Because my diagnosis was so rare, the doctors couldn’t give me a clear trajectory of my illness. All I wanted was to know that someone else was going through that same experience. I started googling to find similar experiences that other patients had, had, and I couldn’t find any.
When I was diagnosed I was at a point in my life where I had a serious boyfriend and was thinking about becoming a parent. I knew that my disability would progress, but I also wanted to find information about being a disabled parent. I couldn’t find any. After talking with other disabled friends, they encouraged me to start the blog.
Sam for YMyHealth: We have to be the change we wish to see in the world, right? If you’re willing, could you tell us a little more about the loss of function in your arms?
Allie Schmidt: Yeah, it’s really difficult. One part of my life has been put on pause. For example, I live in Nashville, and it’s really hard to live here without a car. I don’t have access to public transportation, so I’m always having to use Uber or rely on other people for rides. We had looked into getting me an adaptive car, but due to the cost we didn’t know if it would make sense to spend all that money if my disease is just going to progress. Some parts of your life, you just decide are worth it, like having a kid. I still wanted to have a kid regardless of what was going to happen to me. So, that’s a hard part of having a rare disease that doctors don’t know much about.
Sam for YMyHealth: What does having a disability mean to you?
Allie: I feel like having a disability means that there is some impairment, whether it be cognitive or physical. Anything that has something to do with your body that impairs your ability to function throughout a day.
Sam: Do you identify as a disabled person?
Allie Schmidt: Yes.
Sam for YMyHealth: What do you think about person-first language when it comes to disability? How about the phrase “differently abled”? Do you find these terms appropriate or inappropriate?
Allie Schmidt: For the most part, if I’m speaking about the disability community I try to always say “a person with a disability” because I know that, that’s what a lot of people prefer. Personally, I don’t care if someone calls me disabled, or a person with a disability. It’s ok if the disability comes first.
I’ve never used differently abled, and I don’t use it, because I feel like using that term makes it feel like the word “disability” is inherently bad. It perpetuates a stigma that disability is something to fear, or something to not want. And, I don’t feel that way. I don’t feel ashamed of my disability, and I don’t mind telling people about it. It is who I am, and it has empowered me.
I first started identifying as disabled when I began having trouble accessing public infrastructure. Because I would go out, and I would struggle doing something, and I would ask someone, “can you help me reach this? I have trouble with my arms,” and the person wouldn’t understand what I was asking them. It wasn’t specific enough. The person on the other side would try and solve the problem of my arms for me. When I started saying “I am disabled,” and asked for help, they immediately did what I asked and gave the power to me.
Sam for YMyHealth: Do you think that identifying as disabled has reduced social stigma?
Allie Schmidt: Yes, absolutely. Every time I go out in public I have to tell someone I’m disabled. I have to take Ubers everywhere, and everyday I tell the drivers, “Hey, I’m disabled. Can you open this door for me?” And if instead, I said, “Hey, I’m differently abled, can you open this door for me?”, they’d be like, “What? What in the world is this girl asking me?” People aren’t used to interacting with disabled people, which I completely understand, and so I need to be extremely specific.
Sam for YMyHealth: Has identifying as disabled made you feel part of a community?
Allie Schmidt: Yes, absolutely. And because of that I’m a lot happier. It feels good to have a community.
Sam for YMyHealth: Were you interested in identity politics before you thought of yourself as disabled?
Allie Schmidt: I hadn’t thought about it at all, honestly. I’ve always valued equality and diversity, and been vocal about those things, but I don’t think I was self-aware enough to know about the disability community before it happened to me.
That’s why I give a lot of grace to someone who doesn’t say the right thing about disability because I could have been that person six years ago. But it’s also on you to do your homework and try to understand. It can’t be on me as a disabled person to teach you everything.
Part of this evolution of things changing is in media and in business. That’s where it’s going to start. If you see disabled characters in your favorite movie, or you start going to Target and see products made for people with disabilities, you’re going to be so much more aware of disability.
Sam for YMyHealth: What would you want to say to the millennial generation about disability?
Allie Schmidt: I would say stop treating us like we’re pitiful or pathetic. That’s my number one complaint. People automatically pity me, and it’s so frustrating. I might be living a better life than you! I might be happier. I just want people to know that even if they’re able-bodied, they’re not automatically teaching someone with a disability about life. People have a lot to learn from disabled people.