Interchange Highlight: Disability, Illness, and Difference Alliance

Last November on the Interchange, Ann Kirkpatrick spoke with Scripps College senior Maddy Ruvolo about the new Disability, Illness, and Difference Alliance at the Claremont Colleges. To make the interview more accessible, volunteer Leanna transcribed what Maddy had to tell the Interchange about disability activism.

INTERVIEW TRANSCRIPT:

Ann:  This is Ann Kirkpatrick and I am speaking with Scripps College Senior, Maddy Ruvolo.

So I’d like to begin by speaking about the disability difference and illness alliance. What is its mission here at the 5Cs?

Maddy:  So the mission of DIDA, as we call it, is to increase awareness of disability issues, to start conversations around disability, also to really form and cultivate a disability community here. It started a couple years ago after some of my friends and I were getting pretty frustrated because just disability never came up. It never came up in classes, it never came up in conversations with friends, it just, it wasn’t a part of the culture here. And so what we’re trying to do is trying to educate people here about disability and have a space where disabled students feel comfortable and feel like they can share things about their disability with other disabled students.

A:  What is your role as president of DIDA?

M: So as president, I run the weekly meetings, which are mostly discussion based, so I’m facilitating those discussions. I’ve also done outreach to the administration and to other student groups. So just trying to make sure everyone feels included and reaching out to other groups to try to work with other people and move our organization forward.

A:  When does DIDA meet?

M:  We meet Tuesdays, at 8pm, in the GJW living room, although that is probably going to change next semester. So if people are interested in coming to our meetings they should check out our Facebook page

A:  Speaking of next semester, what are you plans for this coming semester?

M:  We’re trying to bring in more speakers for next semester. So this semester, we’ve been mostly focused mainly on the weekly discussions, which have been really great. We’ve had a good turnout this year, much more than last year, so many more people have been coming, which is really great.  But we want to bring in some more disability speakers, people who are doing disability activism outside of the 5Cs to come and talk with us. So that’s one of the big things we’re working on for next semester

A:  So I know you have a vested interest in disability activism, would you like to share a little bit about your own experience with disability and chronic illness?

M:  Sure! I have a chronic illness called disautonomia, it’s a malfunction of the automatic nervous system. And I got sick the beginning of my sophomore year of high school. And after that I didn’t really go to high school, teachers mostly came to my house, and I really just graduated by the skin of my teeth. And then I came here and started as a part time student just because I didn’t have the energy to be a full time student at the beginning. But it was really something I didn’t’ think about on an activism level, on a community level. For a very long time I really just thought about it as a personal, like I am sick, this is my experience. But then I started taking classes here, and we were talking about oppression of other marginalized groups, and I started wondering, should disability be a part of this conversation? And then I also started looking online and finding communities there. And that was really great, so I started learning a lot more about the disability community as a whole and the history of the disability rights movement. This summer I was in an internship program with a bunch of other disabled students. And so that was really great.

A:  You were in DC last summer as an intern; can you tell us more about that experience?

M:  I was in the American Association of People with Disabilities, AAPD, summer internship program. And that was 29 young people, students and young professionals from around the country who all came to DC and did various internships around the city. And we also all lived together in the dorms, which was really fantastic. Through the program I got to meet really amazing people in the disability community and really just learn about the history of the disability rights movement. The internship I did was really great. It was just a really fantastic summer.

A:  What are some of the important agenda items for disability activists today?

M:  Wow! So there are so many things that the disability rights movement is trying to do now. I think ending stigma is a big one. That is such a huge problem and is a barrier in so many other areas. Employment is a really big issue. The unemployment rate for people with disabilities is so high, it’s a lot higher than the rate for people who are able bodied. Also, independent living, getting people out of institutions and in their communities. There was the Olmstead case a little while back that said that people need to be integrated into communities, but it hasn’t been implemented as well as it could have been. Also just ADA, there’s so many ADA violations still, so accessibility generally is a big issue. I mean the ADA was passed in 1990, and there’s still so many buildings that aren’t accessible. Also political power, really making disability more of a political issue, I mean you know, right now there are a ton of polling places that aren’t even  accessible, so that’s a barrier there. So you see how all these issues are sort of working together. But I think over all that everybody is, everybody’s trying to end ableism, everybody’s trying to work against that and to increase equality and increase empowerment.

A:  Do you feel like disability often gets overlooked as a civil rights issue?

M:  Oh absolutely! Yes! (laughs) Yes, the short answer to that question is yes. I think most people still tend to conceptualize disability as something that is a thing to be pitied, a thing where people who have disabilities are looked down on. And then also people don’t think of it in terms of rights and equality, people think of it as a medical issue or as just some tragedy. They don’t think about equality, they don’t think about accessibility. So yeah, I mean, it’s very much overlooked.

A:  One of your interests is disability in the media, correct?

M:  Yes.

A:  How does mainstream media portray disability, and how does it need to change the way it does so?

M:  Mainstream media does a horrible job of portraying disability. If you’re looking at just TV and film, you really see characters, if a character is disabled, they are either this heroic, super crip, happy, shiny, smiley, inspirational type of figure that’s like, they’re not even human, they’re just there to make other characters realize all the good things they have in their life. They’re there as sort of like a comparison, like Oh, if this person, if that disabled person is happy, then what am I complaining about? And it’s ridiculous, and it’s dehumanizing. And then on the opposite side, you see these bitter, lazy, evil, like ooh those terrible terrible cripples. You see a lot of disabled villains, these people who are portrayed as being, you know, so they’re physically disabled, like they have a hunch back, and that makes them bitter towards the world. Or you know, even like, I mean, and this is less so in terms of fictional media, but if you have a person who is daring to demand the accommodations and accessibility that they should be guaranteed, then they’re portrayed in terms of this bitter trope. Or if somebody is on disability, like government disability benefits, then they’re lazy, because of course disabled people don’t really want to work, because of course, we love it when people think we’re lazy. So you really see these terrible portrayals and really what the media needs to do is have these actual human portrayals. Like have portrayals of people as they actually are. And then of course another issue is that when you do see disabled characters in the media, nine times out of ten they are played by an able bodied actor, so there really needs to be a change there too.

A:  You’re involved with several blogs that speak about disability, chronic illness, and activism. Can you recommend any blogs as a resource for listeners?

M:  Sure, absolutely! One of my favorites would probably be by an activist named Mia Mengis (SP), and her blog is called Leaving Evidence. And she, I mean she’s an incredible writer, and she does really great work. And I think especially if you’re interested in learning about the intersections between disability and things like race, gender, class, sexual orientation, that’s a great place to go. And then, let’s see, I also really love my roommate’s blog, my roommate from this summer. She writes a blog called Claiming Crip where she talks about her experiences. She has cerebral palsy and she is a wheel chair user and she is just a really fantastic writer and she is brilliant and she is hilarious. And, I mean, if you start reading people’s disability blogs, people tend to link to each other, people tend to be in conversation with each other, so once you get going it’s pretty easy to find more resources.

A:  One metaphor that I’ve come across in my research of blogs is the spoon theory, would you care to explain what that means?

M:  Yeah, absolutely! So the spoon theory was created by a woman who has lupus and she used it as a way to describe energy in the way that people with chronic illnesses experience it. So if you are able bodied, you have generally unlimited amounts of energy or easily replenishable amounts of energy, energy generally isn’t a problem. But if you have a chronic illness, you only have a certain amount of energy and if you over extend yourself, then it can take days, or weeks, or months to recover, and so you really have to do a lot more planning ahead and thinking about how you are going to ration out your energy. So the spoon theory is a way of thinking about spoons as portions of energy. So if you are able bodied, you have unlimited spoons, but if you have a chronic illness, you might wake up and you have ten spoons for a day and going to breakfast costs you two spoons and going to class costs you three spoons and going to work costs you two spoons and you might get to the end of the day and realize “oh, I have enough spoons where I can either go to the dining hall and eat dinner or I can work on this paper”. So it’s really about explaining the choices people with chronic illnesses have to make, and just the amount of planning and mental energy that goes into thinking about how are you going to get through the day.

A:  So if there’s just a couple things that you want our listeners to take away from this conversation, what would those things be?

M:  Well I think people on the Claremont colleges generally are pretty open to learning about disability. Certainly we’ve found in DIDA that a lot of people want to know more, they just don’t know where to begin. Or they’ve never even thought about it. And I hope, what DIDA can do is sort of fill that need and start to educate people. But I also hope that people really start to become allies, or better allies, and speak up if you hear someone say something ablest. And that’s not just people saying the word retarded. That is people making comments about how somebody is crazy, or people, you know, not understanding why somebody who is a wheel chair user wouldn’t want to be cured, quote unquote. And so I think, or just I hope, that people get educated to the point where they really can stand up for their friends and start just really engaging with these issues and stop being so scared about disability, because it freaks people out and people shouldn’t be scared of it. I would say disability is not tragic. It’s not this tragic, terrible thing. It is a normal part of human diversity and there are so many disabled students at the Claremont colleges, probably some of your friends, maybe you! It’s really important to learn about disability issues, because you are going to encounter disability in your life. I think it’s great how much people do care about other people and about how much people do want to know about other people’s life experiences, and I just want people to know that disability is part of that. Disability is part of the equation.

A:  Thank you so much for speaking with me today!

M:  Thank you for having me!

-Ann, Public Affairs Director