10 People Discuss Life With Disability And Illness
"I don’t want anyone to pity me; I just want people to respect me like they do everybody else.”
Amanda
"I got a cochlear implant in May of 2015, at age 28, after not having hearing in one ear for most of my life. Before, I was constantly asking to hear everything people said a second or third time. I expected it to be like those YouTube videos you see where people turn it on, and immediately they're just like, 'Oh my god!'
"I mean, that is how I felt initially, but I've realized it's not that easy; it's a slow process. I'm exploring all these new sounds, and noisy situations are tough for me, or even quiet situations. My implant differentiates between when someone is talking to me or when sounds are just background noise, but my brain isn't there yet. I'm learning to hear more clearly, but I'm not totally there.
"I got my first hearing aid at 21. Before that, I had just been getting by. I had stayed pretty quiet in school because I couldn't really hear people talking to me, and it was embarrassing, but I found makeup as a teenager was an outlet for all the expression I was holding back, speech-wise. It's a big part of me, still. Except now, I don't stop talking."
Jenice
"I was diagnosed with Crohn's disease at age 10, but if you didn't know me, you wouldn't think that I 'look sick.' A lot of people, even medical professionals, assume ostomies smell or are unhygienic, but that's simply not true. I love to go out and dress up in formfitting clothes. I'm an avid swimmer and wear cute suits. The fact is, unless I tell someone or get completely naked in front of them, no one ever realizes I have a bag. Everybody poops, I just happen to do it a little differently!
"I am not just my Crohn's, or my scars, or my bag, but they're an important part of me. My illness is why I went into the medical field. Eight years ago, I was on what I thought was my deathbed, in a medically induced coma with every imaginable complication from my disease and subsequent back-to-back surgeries. Coming out of that relatively unscathed, I realized that patient care was my calling. Now, in addition to being an EMT, I'm a medical assistant and certified nurse assistant, and I'm hoping to one day work in gastroenterology as a wound care, ostomy, and incontinence nurse. I know better than anyone how it feels to be a patient, and if my experiences can help others, then I believe that's my purpose in life. That's the reason I was given what I was given.
"Something I think about a lot is that all literature and medical supplies related to ostomies only show depictions of older white people. It can be discouraging to young people — especially minorities and people of color — who are already thrown by the transition of starting to live with a chronic medical condition. That's why I always try to represent. Hey, I'm sick and young and of color, and you wouldn't have guessed it, would you?"
Steve
"I’m 25 years old and I have muscular dystrophy. The biggest way it's impacted my life is that I can’t go wherever I want, whenever I want. It’s very frustrating to always have to check if buildings have stairs to get in or if a subway station has a working elevator. That said, the most common misconception I face is that people don’t think I do anything or even go out.
"Despite my disability, I’m still a regular guy. I’m a substitute teacher, stand-up comedian, actor, and motivational speaker. I can be just as funny or as big of a douchebag as everybody else, and I’m going to live my life how I want and not let my disability get in my way.
"I chose to be photographed before my show at the Peoples Improv Theater because it's a place that makes me feel so special. It gives me the opportunity to be myself and make other people laugh, which gives me so much satisfaction and feels so rewarding. I’ve fought every step — I mean, roll — of the way, and I’m having an incredible ride."
Cameron
"I have a connective tissue disorder called Ehlers-Danlos syndrome, which results in hypermobile joints and a number of other health conditions and concerns affecting my digestive, respiratory, skeletal, circulatory, immune, and other bodily systems.
"EDS was first described by Hippocrates. It's not a new disease; it just needs research. There is a lot of ignorance and denial in the medical field when it comes to connective tissue disease, so if you want answers, you have to advocate for yourself. It could save lives in ERs if doctors knew how to recognize an aortic dissection, or even just knew more about EDS than hypermobile joints, which isn't to say doctors are the only ones with a lack of understanding. People without EDS tend to take for granted eating standard food, walking a few blocks, using the stairs when the elevator is down, or only seeing a doctor once or twice a year. They can eat what they like, when they like, without worrying if they'll be in too much pain to see a friend or go to class. Their hips don't come out of place while sitting, and they don't collapse because their knees are not in place.
"One thing I run into a lot is people staring, which seems to defy basic manners. I know I'm young, and maybe the people who stare feel bad, but...everyone knows there are children with cancer, so why can't there be young adults with other diseases? Don't stare. Offer a seat instead of taking up the disabled seats on the subway with shopping bags. Leaving nasty notes on cars with disabled stickers is the suburban equivalent of this. There is a reason that person has a sticker!
"Patients like me, who need a GI motility specialist, usually have to go to Philadelphia or Baltimore for help; I had to wait a year to get an appointment with one closer to me. You're very lucky if you ever get to see anyone for EDS at Johns Hopkins; the waitlists are so long, most of us wind up on them and get terrible care in the meantime. And all the things that can be done to help an EDS patient either may not work, or doctors consider you too risky of a patient to touch. You can have surgery, but you might bleed out or rupture something. You can have a feeding tube, but because of EDS you also have autoimmune deficiency and you'll get dangerous infections. EDS should be called 'The Catch 22 Disease.' But you cannot win unless you laugh."
Ariana
"When I was 22, I had a pulmonary embolism — a blood clot that, in my case, started in my right leg and moved to my lung. I had to undergo emergency open-heart surgery, as well as four surgeries on my leg. If I don't wear my leg brace, I walk with a limp.
"For the most part, I am an average 26-year-old woman. I try not to let my disability hinder my life. I do lots of things everyone does, but it takes me a little bit longer. Before I got sick, I took things for granted like walking or being able to stand on the bus. I've also been dealing with chronic pain for years, and waking up without pain is something I miss.
"I chose to be photographed next to the East River, by my house. This spot reminds me of so many great memories with friends. It's really beautiful, especially in the summer. The Governors Ball is right across the water, and when they have concerts, I can hear the music from here. Makeup is also a huge passion of mine; I recently started my own YouTube channel, Diva on a Dime, which is about using affordable drugstore makeup and looking your best, as well as the struggles of being a plus-size woman.
"People doubt I have a disability, since it's not obviously visible, and some people even think I use my disability to get people to feel sorry for me, which isn't true. I don't want anyone to pity me; I just want people to respect me like they do everybody else."
Mary
"I have a form of spina bifida called myelomeningocele. Spina bifida is the most common and permanently disabling birth defect in the nation, but it's still unfamiliar to most people, including many doctors. I live with a continual bladder infection because of the way my bladder empties. My kidneys are fused together, with one functioning at 90% and the other at 10%. Some of my organs are held up by slings due to prolapse, so that they won't fall or cease functioning. Spina bifida also creates nerve damage to the spine, which affects internal organ, motor, and psychological functioning. Many people don't face such things until they are older, if ever.
"I don’t fit into what people refer to as 'normal' or 'healthy' society or into the spina bifida community, so I’m left in limbo. There have been times when people haven’t believed the battles I go through just to live my life — even people at conferences have shunned me because I don’t look like their kids with spina bifida. People don’t believe my spina bifida has resulted in me being hospitalized for possible organ failure, or that I've had surgery that put me in the ICU for nine days. There are times I just want to show them my spina bifida scar to prove I have the condition! And on the flip side, I’m also expected to do all the things a 'healthy' person can do, because, again, I don’t 'look sick.'
"Spina bifida limits how my kidneys, bladder, intestines, uterus, back, brain, toes, pulse, and blood function. It affects the food I can eat, and even how my body came into puberty. Still, I have not allowed it to limit my life; there are many times I’ve had to complete a school project or answer work emails from a hospital bed, with an IV in my arm. Still, I’m grateful for my triumphs and successes, like becoming an actress, print model, and licensed massage therapist, earning my master’s degree in professional counseling with a concentration in expressive art therapy, and holding the position of chief executive director at an associate degree college for holistic health care — things that were made possible in part by a number of doctors and my very supportive parents.
"I wanted to be photographed at South Street Seaport because it's where I came after a job interview in which I was asked to explain my participation on the board of directors for the Spina Bifida Association of Arizona. The people asking looked confused and scared, as if I had leprosy. Standing in the breeze here, I realized how important it was for me to become even more active and vocal in my community. People with spina bifida all look and function differently, but we can all be 'messengers.' It’s time to give a name and face to spina bifida!"
GG
"I have a rare neuroimmune disorder called transverse myelitis. On December 19, 2009, I woke up with neck pain, and by the end of the day I was paralyzed from the chest down.
"Being a quadriplegic means I have to figure out new and creative ways to accomplish things. Tasks like getting dressed or climbing into bed are now much harder or take more time than before. I used to take for granted how easy it was to hop on the subway and to go to any restaurant, bar, or friend’s house, but it's all more complicated — and often impossible — with a wheelchair like mine. In fact, I chose to be photographed in front of the 125th Street ACBD train station because it’s the closest 'accessible' station to my house, though the elevators are often broken. It takes me 20 minutes to get here, which is especially tough in the cold or rain, but the station five minutes from my house doesn't even have an elevator.
"There are a lot of stereotypes about people with disabilities. People assume I can’t or don’t work, that I live with my parents, or need constant care/assistance, and that I can’t date, have kids, or be in a relationship. There's also a misconception that it’s OK for strangers to ask personal questions, like 'What happened to you?' or 'Were you in an accident, or were you born like that?' It gets tiring being the subject of people’s curiosities, and it happens all the time.
"My life doesn't revolve around my disability; it's just one aspect of my life. The times I feel most burdened by being in a wheelchair are when the environment prevents me from accessing things — I doubt I'd think about being disabled as often if more things were built with accessibility in mind. In many ways, though, I am more comfortable with myself now than I was before I needed a wheelchair. I feel like I'm the new and improved GG 2.0."
Delaney
"I have had chronic Lyme disease for six or seven years. My memory and speech aren't the same anymore, and there are times I don't have the energy to do anything more than shower. Many people don't realize this disease can cause depression and anxiety, and can paralyze or even kill.
"I may seem fine to outsiders, but I'm struggling to keep myself in one piece. My illness means I miss a lot of classes and social events, and the response tends to be 'You don't even look sick.' Having people not believe I'm sick is one of the most painful things. It's hard enough to tell people that I have Lyme disease, so for them to be so dismissive is a slap in the face.
"Still, I refuse to be defined by my illness. That's why I wanted my portrait taken in Grand Central: I take trains to and from here at least twice a month to get to my doctor in another state, and I have become attached to this place. Here, no one knows I'm sick; I'm just another passenger. And that's a nice feeling, because maintaining hope is just about the most important thing I can do. I constantly try to do everything at 100% — I never want to give up on my dreams or myself."
Jason
"I was diagnosed with primary progressive multiple sclerosis in 2005, when I was 25. Before that, I didn't have to think about life with a disability. In that way, I feel blessed because I've lived in these two worlds where I know what it's like to be perfectly able-bodied, and I know what it's like to be on the other side. Not only am I a person in a wheelchair, but I am also a young person of color in a wheelchair.
"There are a few misconceptions I've come to notice. One is that people — even people my age — think I'm disabled as a result of war. I was at a club at the East Village recently, and all the guys were like, 'Hey bro, thanks for serving your country.' It was pretty hilarious. The other misconception is that I'm not a sexually desirable person. That's a common one for people with disabilities. There are days where nobody looks at me, but I still get hit on plenty, and I can still perform the necessary duties.
"I'm a filmmaker and I run a nonprofit organization. Disability is my full-time work, and I have a mission to make it (my story included) something everyone knows about, but I think people don't realize when they see me crossing the road in my wheelchair that I'm actually doing big shit. In fact, my life's busier than it's ever been. My most recent film, When I Walk, won a 2015 Emmy Award. So when people look at me with 'sad eyes' or offer me their spare change, it feels a bit odd.
"One of my proudest accomplishments is a project called AXS Map, a crowdsourced tool on web and mobile that allows users to rate and review businesses based on accessibility. We have close to 90,000 reviews in 200 countries, powered by Google, and even partnering with the United Nations. Get on the website, download the app, and start rating and reviewing places to help the world become a more accessible place for people with disabilities. Anyone can do it! And if you want to know what else I'm up to, you can visit my blog."
Kerry
"I was born with three fingers on my left hand and an arm curvature. My life is different from what you'd expect in a lot of little ways, like I can't put my hair up in a ponytail. I went on a trip without my parents one summer when I was about 14, so I cut my hair short, since they wouldn't be able to help me with a ponytail. I've kept it short ever since.
"People often try to assume what I can and can't do. I'll say I can do something and they'll end up doing it for me, or — and this has been even more recently — I'll explain that I can't physically do something and they'll give me a 'Yes you can!' sort of pep talk. Maybe it's out of love and consideration, and I get that and appreciate it. But I've been differently abled for 22 years now; I know exactly what my limitations are.
"Theater is my life's passion. When I was 15, I walked into an audition and the casting director immediately told me that I shouldn't be in this field because of my arm. But I just kept fighting because I'm stubborn, and that's why I can really appreciate where I am now as a theater maker. I'm a working voice and dialect coach for actors. I was an original cast member in a new musical that had a workshop reading off-Broadway. I've produced shows professionally in New York City and have worked in the London theater scene. I've met some of the most amazing artists and many of my closest friends through the incredible pieces of art I've been involved in both on- and offstage. I wouldn't have had that passion and drive if it wasn't for that casting director seven years ago. I guess I have to thank him someday."
Body Positivity Week is a week of content devoted to exploring and celebrating our complicated relationships with our bodies. Check out more great Body Positivity Week content here.
