'I know who I am': 6 people with physical disabilities share truths about power, love, and visibility
In recent years, we’ve seen the idea of diversity expand throughout fashion and pop culture to include people with disabilities — the rise of a runway model born without her left forearm, designer Derek Lam showcasing new designs via a cast of models with varied disabilities, a TV comedy star with cerebral palsy, another show featuring children with Down syndrome.
But the media have a long way to go when it comes to fair and accurate representation, according to the 2017-2018 “Where We Are on TV” report from GLAAD, which tracks the diversity of television characters (along with the inclusion of LGBTQ characters and those of varied races and genders). This year, the percentage and number of series regulars with disabilities has risen just slightly to 1.8 percent (16 characters) from the previous year’s 1.7 percent (15 characters).
“While these numbers are the best ever, they are still shameful overall,” noted RespectAbility president Jennifer Laszlo Mizrahi on the organization’s website. “The percentage of characters with disabilities is literally less than one-sixth of what they are in real life. Moreover, what does exist is misleading. Almost all portrayals of people with disabilities in media are white and most are male, despite the fact that disability affects all.” The issue of representation is prevalent in film and advertising, as well.
This week, in honor of the annual International Day of Persons with Disabilities, on Dec. 3, begun by the United Nations in 1992 with the aim of promoting the rights and visibility of people with disabilities, Yahoo Lifestyle presents six advocates, bloggers, designers, and models who address the importance of being seen and heard. “I think it’s very important whenever you’re able to see yourself represented,” says activist Mama Cax (at left in the photo above), “in media, and in general.”
Xian Horn, 34, disability advocate
Disability: Cerebral palsy
Why she considers her disability a “blessing”: It has afforded me so many opportunities that I really just enjoy it. I traverse the world with two ski poles, and what it means is that the world does not forget you. I had a cab driver recently who said, “I had you 10 years ago, we had such a great chat, I’m so glad to see you again, thank you so much.” I was like, “Thank you so much!” I thought of the hundreds of thousands of people he’d had over those 10 years… I feel like it’s started a lot of conversations, and also I think being able to use my disability to shed light on our universal beauty as humans is a really important and wonderful gift to have in my life.
On facing stigma: I think that we have control over our narrative. We don’t have control over how people treat us, but we do have control over how we respond. I had a situation where I was in a store to get a pair of glasses and a woman who was waiting said, “What’s wrong with you?” So I said, “I have cerebral palsy, but it’s the blessing of my life, thank you so much for asking,” and I turned to get my glasses. And she started to bawl, waterworks, and said, “I’m so sorry, I got laid off today, and I’m having the worst day, and seeing how you handle yourself, I see that life is pretty good.” And we hugged it out and became friends on Facebook. Again, it’s how do you choose to respond to a situation? I know who I am. The one area of my life where I’ve had confidence is with my disability. As a girl becoming a woman? I was completely a mess.
On working with Open Style Lab, a project of Parsons School of Design, to create an accessible raincoat just for her: I had a team of five or six girls who were just devoted to making me something that would make my life easier. Not only does it have snaps so I don’t have to use the zipper — because I’m walking with my hands full — but one of the cool things they noticed about me is that I usually put my coat on sitting down, and I kept getting my coat caught on the back of my chair, so they created it with higher coattails in the back so that doesn’t happen anymore. That collaboration was life-changing.
Magdalena Truchan, 48, graphic designer and style blogger
Disability: Paraplegia resulting from a car accident when she was 24
On facing stigmas: Surprisingly, in my life, people are very helpful, and I’ve never found that I’m discriminated against. As a disabled person, people will cut me off in line, they won’t notice me, but you have to be determined. It forces you to be more direct and assertive and vocal about who’s pissing you off. … I admire people who are advocates for the disabled. I don’t think I’d have the patience for that.
On what makes her feel most beautiful: Fashion and lipstick. I’ve always loved fashion since I was a kid — hats! I think it’s really boring waking up as the same person every day, so I [always] style my hair a different way, wear a different hat, a different lipstick, a different perfume. … I feel like you’re transformed into a different person. I think that’s because I’m a Virgo and an artist, I don’t know. But there’s a thrill, not in a shopaholic way, but in finding that one piece that you know looks great on you and makes you feel good, there’s an energy about a good outfit. I’ve always fed off of that.
Louis Jenson, 22, marketing student and beauty blogger
Disability: Hard of hearing
On not identifying as deaf: Medically speaking, I’m deaf. But culturally speaking, I would say I’m hard of hearing, because I am capable of hearing things [because of cochlear implants I got as an infant]. I was never introduced to the deaf community until I got to college, the Rochester Institute of Technology, where they have the National Technical Institute for the Deaf, and found over 1,000 deaf and hard of hearing students. It was the first time I’d ever seen that many people like that, and it was culture shock for me!
On his queer identity: I initially referred to myself as being gay, but … I just feel like, as a human, I can’t really be put into a box that clearly. … I think that me being hard of hearing and growing up really helped me build up an armor for when I needed to come out about being queer. My gender is very fluid at times — sometimes I’ll show up to class in a full face of makeup; other times I’m just regular me. When I was the director of [a deaf student] modeling competition, I wore makeup and heels, because I was trying to encourage the models to step out of their own comfort zones. And the guys started showing up to shoots with flowers in their hair! One girl showed up to a shoot completely nude, with her body painted, which is not something I would’ve expected from her.
Christina Mallon, 29, ad agency designer
Disability: Motor neuron disease, resulting from a car accident at age 22, which left both arms paralyzed
How she’s reshaped the world around her: Overall, this world is what makes me disabled. At the end of the day, nothing is set up for a person with a disability — it’s not part of the design process, so really I’m just hacking my life. I live alone, I work full-time, I have a wonderful group of friends and a great social life, and I think it’s making sure that I choose jobs and surround myself with people who are open and willing to help. … I type [on my phone] with my feet. I don’t wear tights. We created socks that work with touch screens, using a different type of thread, and that was in collaboration with Grace Jun and Open Style Lab [at Parsons]. Anyone can sew conductive thread into a sock; that’s really all it is. You just have to have people willing to take on the design challenge.
On facing stigmas: A lot of time people will think I’m Christina, disabled Christina, that’s all I am. So I have to fight to show I can be a mother, a friend … I fight that every single day. But I have to be OK with it and ready to take on the world so girls who are younger with disabilities have a role model to look up to. And that’s what gets me through my day.
Mama Cax, 28, blogger, activist, and motivational speaker
Disability: Lost part of her leg to cancer at age 14
How she found self-confidence after her amputation: It’s hard to pinpoint the exact moment I decided to even expose my prosthetic, but all throughout college I had it covered. It wasn’t until after college that, with Instagram and blogging, I connected with other girls who were amputees. I thought, wouldn’t life just be easier if I accepted this and didn’t have to hide it? At the beginning it was really hard, because it was a lot of stares, and at that point I didn’t have the stylish cover [from Alleles, in Canada]. I would get a lot of stares and rude comments, and so it was a long and painful road to get where I am now. But I think it got to the point where my confidence was just showing, and people were afraid to ask questions that would be perceived as stupid.
On the realities of dating: I feel, like, for a long time, it was hard because of my own insecurities. I wasn’t willing to put myself out there, because I didn’t think anyone would find me attractive. That’s also because of the image of people with disabilities we would see out there: I had never seen any romantic relationships in my circle or in the media — none of the characters have a disability, and if they do, they’re kind of like the sidekick, the geeky person behind a computer. So I think that’s the reason why I never thought romance was made for someone like me. But I started dating, and soon you realize that whether you have a disability or not, you’re going to meet s***ty guys and great guys. And you do get weird questions. I did dating apps for a while, and one time someone messaged me and the first question was, “Can you have sex?” So those kinds of things.
Why media representation matters: I think it’s very important whenever you’re able to see yourself represented, in media in general, and for me the interesting thing is I’m at the intersection of so many marginalized groups: I’m a woman, I’m also a black woman, I’m also a woman with a disability, and a lot of times people will talk about inclusion or diversity and I see women, I see black women, but a lot of times I don’t see disability. So in spaces where there are a lot of women, it always feels like there’s something missing.
Danielle Sheypuk, 39, psychologist and Miss Wheelchair 2012
Disability: Spinal muscular atrophy (SMA)
Biggest misconception about people with disabilities: The fact that we are not considered sexual people. Of all the minority groups, we’re left behind when it comes to dating, sex, and relationships. We’re humans, and humans want to find a mate, so we’re no different than anyone else, but I realize it’s almost universal for people with disabilities, because of all the stereotypes that still surround us in that area — that we’re asexual, physically not attractive, not able to have sex, won’t make good romantic partners, and are not masculine or feminine enough. If I put a profile up on Tinder or Match, it’s most likely not going to get as much action as someone without a disability. And it’s completely unfair.
On winning Miss Wheelchair New York: One night in 2012 my friend called me and said, “I found something that’s perfect for you, it’s a Miss Wheelchair New York pageant and it focuses on academics and also glamour,” and the fact that glamour and disability were in the same sentence? I was so excited about that. I thought, let me win that title, because it will be perfect with my PhD. [Sometime after], I was at a doctor’s office with a new doctor, who was asking about me. I said, “I’m getting my PhD in clinical psychology,” and at the end I was like, “Oh I forgot, I’m also Miss Wheelchair New York this year,” and he’s like, “Oh my God! Let me get the nurse — she’ll want to meet you!” In my mind, I was like, OK, this is a powerful combo.
On why, in a 2015 TEDx Talk, she differentiates between self-esteem and “datable” self-esteem: Because as someone with a disability, we often have areas of high self-esteem in our life — our careers, our social lives, great families, and a lot of friends. But when it comes to our dating and sex life, it’s like our self-esteem is totally in the gutter. So I wanted to take the message up a notch. I want to talk about dating — and not that we just like shopping, but that we shop at Barney’s, we shop at Bloomingdale’s, and that we like to wear expensive clothes and be in Vogue. And I love using my own self and my own body as, like, a message to push it forward. Like, “Oh, she’s wearing high heels — I want to wear high heels!” After [I was in a] runway show, I got a lot of messages and tweets about, “Oh, after my accident I stopped wearing high heels— thanks for letting me know that I could still do it.”
Read more from Yahoo Lifestyle:
Mom with only one arm: ‘People stare and that’s OK, I embrace my difference’
Gender-fluid aspiring model: ‘I want to make my own beauty standard’
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