This past summer I was in an internship program with other disabled students. We all lived together and worked in various offices across DC. I asked my buddy Lauren to come hang out with us and take pictures for a day, and then I talked to my friends about their experiences with disability.
If you look for depictions of disabled folks in the media, you are likely to come across one of two portrayals: the bitter, evil disabled person or the Super Crip, who is portrayed as “inspirational” in the most dehumanizing way possible. The goal of this project is to give people another view, to show you what our lives are actually like. —Maddy RuvoloAlex (left), 20: “I like teaching American Sign Language because it is thrilling to teach a language that is not well known in the hearing world. It allows me to personally connect more with my hearing friends. To be honest, sometimes it can be hard to be friends with hearing people, but it really depends if hearing people are willing to accommodate to my communication method. There are some people who are very busy with other friends, like at college. But there are also people who will move mountains to communicate and be friends with me.”
Jasmin (center), 24: “I got my disability about three years ago. I’m legally blind, and my vision is getting progressively worse. I’m learning how to deal with and accept my disability. I found it easy, at least with this group, to transition from being ‘able-bodied’ to now being a person with a disability. I’m able to accept a new identity.”
Lili (left), 21: “I have a complicated relationship with my walker because it’s not the perfect piece of assistive technology for me from an efficiency standpoint, but it’s been with me for so long and it’s such a part of how I think about my disability. I learned to walk on a walker just like this one. Sometimes I decorate it for Halloween or for school plays. I try to make it part of my look.”
Karin, 23: “I have cerebral palsy, which affects my muscles, and I have this thing that gives me medicine to help relax my muscles, which makes it easier for me to do things like pick up my purse or put on my makeup.
“I wish people got that disability isn’t this weird thing that makes me a freak, it’s just part of who I am as a person; and when they stare at me they’re just seeing me in ways that reflect their own ideas about disability—they’re not seeing me as a person, as an individual.”Karin (on the right—that’s me on the left): “You and I were roommates this summer, and we became really good friends. The best part about living with someone else who is disabled is that you don’t have to worry about being judged or being treated like the charity-case roommate. I never had to pretend or hide parts of my disability because I thought you would be uncomfortable.”
Here I am playing around in Karin’s wheelchair. Karin (not pictured): “For the most part, I don’t let people play in my chair because they don’t understand that it is not a toy, and they don’t understand what it represents, what it means to me, and what it gives me. It can be really frustrating when people look at a chair as just something to have fun in. I’m like, ‘No, it’s the difference between having a life and not having a life.’
“It’s different with us because we’re friends and we both are disabled, so we both understand what the chair means. But most people don’t get that the chair is a part of me, and without it, I don’t go anywhere.”Micah, 29: “I have an intellectual disability. Before I had this voice-recognition software called Dragon, I would have to wait for my parents to come home to write emails. Now I can send emails and do everything on my computer. It’s very cool.”
Rose, 23: “I have been legally blind since birth. Street signs are very difficult for me to read—I can’t read them unless I stand almost directly under them. So I use a monocular, which is like binoculars but just one, since I only see out of one eye. I feel most self-conscious using my monocular at fast food restaurants, because everyone is standing around looking at the menu and I feel like there’s more of a chance that they will notice me. I memorize one or two things that each restaurant serves and I limit myself to those choices, just so I don’t have to use my monocular. I’m holding myself back, but I shouldn’t.”
“Technology is rapidly improving, but it is very difficult for me to read the small font on the small screen. When I check Facebook on my iPhone, I use a magnifying glass.”
Karin: “The fact that my wheelchair can elevate allows me to reach things and be more independent. I used to not use parts of my chair that could do all these things because I thought people would think it was strange, but now it’s just like, why should I care about how people think about how I do things as long as I get things done? It’s either embracing who you are or not living your life, and I choose to live my life.”
Kelli (in the yellow T-shirt), 23: “I’ve been disabled all my life, since I was born. After my junior year of high school, I did the California Youth Leadership Forum [for Students with Disabilities], and that kind of got me into working in the community and knowing so many people here. I met people who have had the same experiences as me, who know what I’m going through, and I learned how to be an advocate for other people. I really love hanging out with other people who have disabilities, learning about their experiences.”
Rosie (right), 20: “A few months ago I started wheelchair dancing after a friend recommended it to me. It’s a really cool way to express myself.”
Rosie (second from left, in blue): “We have walkers and rollers partner with each other. It’s a new way of figuring out how to accommodate each other. Some dance moves, people in power chairs can do but people in manual chairs can’t. So it’s about communicating with your partner and meeting in the middle.”
This is me, counting out my pills for the week. I have a chronic illness called dysautonomia. People forget that not all disabilities are visible—if you looked at me you’d never know that I spent the last three years of high school in bed, and you probably wouldn’t guess that fatigue and pain continue to be major factors in my life. I wish people would remember that the healthy-looking person taking the elevator up one floor or sitting down on the bus might really need to do those things.
Finding the online disability community was transformative for me. Before, when doctors and school administrators told me I was lying or faking or being dramatic, I knew they were wrong, but I still took in their judgments. Realizing that the problem wasn’t me or my body, but rather social stigma and discrimination and ableism, was super empowering. I like who I am today, and my disability has played a really big role in shaping that. ♦
Maddy Ruvolo is a 21-year-old college student and disability-rights advocate from the Washington, DC, area.
24 Comments
I finally have my official favorite Rookie post! My dad has been legally blind since I was two, and has to use a cane. Soon he will probably need a guide dog, too. Despite his ”disability”, he’s stronger than any able bodied person I know. He has homeschooled me and my sister our entire lives. He also has an (occasionally annoying!) HUGE collection of vintage clothes, and that’s his hobby. Sometimes I forget he has a ”disability”, because all I really ever see is his abilities. I hate that he has to deal with such negative attitudes, like the woman who, after my dad accidentally bumped into her at a super crowded Christmas market, asked her friend ”why a blind guy was here.” A loss of understanding and a sense of equality is the biggest disability to me. Thanks for these awesome pics, again!
Your dad sounds amazing <33
Eye opening. Thank you, thank you, thank you.
I loved reading this and the article you included. A girl on my facebook once posted a picture she had taken (with no permission i assume) of a girl with downs syndrome reading a book captioning it with something along the lines of ‘aw this girl with downs syndrome has just been sat here reading this book aww and she has glittery trainers on’ it was so patronizing, unnecessary and dumb and I sort of wanted to smack my head against the laptop screen.
x
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This is perfect, thank you. I have a chronic pain condition, and when you talked about the issues with being someone who looks healthy but isn’t, it really touched me. People are always saying, “but you don’t LOOK sick,” and it’s really frustrating.
this is beautiful. me and my best friend met via a support group for youths with cfs/m.e we’ve been with eachother for everything the last five or so years, i don’t know what i’d do without her. our illnesses don’t define our friendship, but they did make it stronger as we saw eachother at our weakest and sickest and still stuck by eachother :)
This was BRILLIANT. Thank you, Rookie! Thank you for making efforts to break down people’s dumb de-humanization of others in such wonderful, wonderful ways!
Such perfect pictures! These are beautiful.
This is beautiful though does anyone else feel like it should have been posted under ‘family’ rather than ‘forever’ as the message I got was about unity and acceptance as opposed to eternity?? Nonetheless, a really lovely set of photos x
this is beautiful!
I always felt like disability was such a horrible thing to happen to someone but now I’ve accepted that it exists, and beautiful things can come out of it. Thank you.
Thanks so much for this post. I really love that everyone featured was portrayed as just regular kids, because they are. Thank you for sharing your friends and their stories with us!
this really warmed my heart!!<3 one of my favorite rookie posts!
This is such a beautiful and eye opening piece, thank you rookie <3
This is a really good post; my uncle and grandma are both sitting in a wheelchair, so for me it has always been a normal “thing” and i get so angry when People stare at them or give them weird Looks. It’s not a big deal, they are normal People for fucks sake!!! And i’m so glad that in this post you showed that that’s what they are, -normal People! Thank you for that!
your dress is the cutest thing I’ve ever seen.
Thanks! I got it for $5 at a yard sale. I was pretty excited about it.
These comments make me super happy – thanks, everyone! If you want to learn more about disability issues, come talk to me on tumblr and I’ll point you in the right direction (hellomynameismaddy.tumblr.com).
This is so important, and the things that all of Maddy’s friends said were super interesting. I believe this is really nice in terms of educating people on disability issues! Thank you.
This is wonderful. So eye-opening, thank you.
Great, really eye-opening article. I’ve always loved Rookie’s uncanny ability to hit the nail on the head with their pieces, especially when it comes to things that are sometimes difficult to talk about!
One suggestion: I have a brother with cerebral palsy/an intellectual disability, and we like to really emphasize “people-first language.” That just means saying things like “person with a disability” rather than “disabled person,” just out of respect. This kind of language highlights the idea that you are not your disability, your disability is merely one of many parts of who you are. Once again, fantastic article!
Thanks, olivesocean! There are actually a lot of people in the disability community who prefer identity-first language (“disabled person”) over person-first language (“person with a disability”). I identify as a disabled person because my disability can’t be separated from the rest of me, and I don’t think that’s a bad thing!
Beautiful. Reminds me of this incredible group, Magical Experiences Arts Company, . They are currently doing a kickstarter. Check it out!
both my parents work with people with disabilities and it is so refreshing seeing things like this. great photos and writing! <3