To My Future Girlfriend, When She Sees My Wheelchair

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Dating for me has never been difficult. I don’t go around looking for friends to be friends with a guy who uses a wheelchair; I look for hockey fans, beer drinkers, dedicated business owners, and other driven individuals.

The same goes when I’m looking for a mate. I don’t look for someone who “would be OK dating someone who uses a wheelchair.” I just assume if you’re friends with me, you know this is how I get around, and it doesn’t socially define who I am.

That’s who I see.

That’s who my ex from high school says she saw when I asked her before I started writing this, and that’s how I’m sure all of my friends see me.

They see someone who happens to be fighting for legal rights in Canada to make all stores and shops wheelchair accessible. They see a guy who will give up his hockey tickets and miss the game if you need someone to talk to. They see a dedicated friend.

So why shouldn’t you see me as someone who is “wheelchair bound” or “disabled?” Well, that’s just it. I’m not. I’m not what society has labeled me. I want to break down these labels, these negative stereotypes that have held people back for 20 years.

I consider myself “differently able.” I get around town on public transit, go for beers at my favorite watering hole, find ways to create access where there is none, and do what I can to make a difference in the life of a child. Society is so quick to stick labels on people, labeling them useless and saying they won’t be contributing to society… this is not true. You won’t find a guy more dedicated to making a change that will make a positive difference for so many people.

The next time a guy using a wheelchair starts hanging with you, don’t assume he won’t want anything more than friendship. Sure this might be the case, but just think about that person as a human being and treat them accordingly. Critique them the same as you would any other potential partner.
Are they cute? Funny? Driven? Do they have all the qualities you look for in someone? If you can answer yes to all of that, don’t be afraid to make the first move.

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Thinkstock photo by majivecka.

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My Unique Challenges Growing Up With Multiple Disabilities

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As a person with cerebral palsy and visual impairment, I represent .03 percent of the U.S. population and face some unique challenges. The main challenges I faced as I was growing up were finding role models who had multiple disabilities, self-disclosure of disabilities, and self-identification as a multi-disabled person — where I fit.

I found finding role models with multiple disabilities difficult during my childhood and teenage years because they were not represented well in any mainstream media. My respective disabilities were represented separately rather than together. This showed the lack of diversity of the disabled community for people like myself. I hope this changes in the future, because it would lessen some of the stigma around having multiple disabilities. It would give children and young adults role models to look up to, people who could give them some hope they can do whatever they choose in life, regardless of their multiple disabilities.

The most difficult of the three challenges was self-disclosure. I was not sure most of the time which disability to disclose first, my cerebral palsy or my visual impairment — or even whether to disclose them at all. This was especially difficult when dealing with services that were related to only one of my specific disabilities, because my other disability was often forgotten about. I noticed this most when applying to colleges and when I applied to take my teaching licensing exam. When filling out the applications and applying for accommodations, there is usually no box on the applications for multiple disabilities. I usually end up checking off cerebral palsy, visual impairment or blindness, if there is that option on the application.

Another thing that was extremely difficult for me growing up was disclosing to individual people about my disabilities, especially to those who only have one of my disabilities or no disability at all. I feared rejection or lack of empathy. I still struggle with self-identification as it relates to daily living and my self-image today. I’m in my 30’s and still do not know which disability category I feel fits me. There are some obstacles I have in common with people who are visually impaired and the blind community. I need to have large print material, and sometimes have to use paratransit as a way to get from place to place, because my vision is so low that it would be impossible for me to drive. I share other obstacles with people who have cerebral palsy like myself, including using mobility aids such as a wheelchair, having a personal care assistant, and the need for adaptive equipment for daily living.

When I was in my childhood and teenage years, I tried to assimilate into each group the best I could. I attended a summer camp for people with cerebral palsy, and in my junior year of high school, I attended a college program strictly for visually impaired and blind individuals who wanted to attend college. Attending these programs only made me feel more torn about where I fit in with both of these disability groups. So as my teen years were about to end, I decided it was best to separate myself from any part of the disability community until I found where I fit in. In doing so, I learned it shouldn’t matter if you have multiple disabilities — even though people’s perceptions may seem like it sometimes.

My advice to young people who are facing the unique challenges of multiple disabilities is to find self-acceptance and surround yourself with people who accept all of your disabilities. Some people may not understand your struggles, and that’s OK. Focus on accomplishing things you want, whether it be college, getting a job or doing something you’ve always dreamed of, like what I’m doing right now. I hope reading this story will help you to realize there are other people going through the exact same struggles you are as a multi-disabled person. Try everything you can, even though it may be difficult with your conditions. Do your best to keep a positive attitude about everything you try to do, regardless of the outcome.

I hope this message finds you, helps you be empowered and gives you hope. I am glad I could shed light on the struggles of multi-disabled people, so others inside and outside the disability community can better support us. I hope this story not only helps individuals with multiple disabilities, but their families as well, so they can be prepared if their child/teenager is going through the same challenges I did growing up. Writing this story has given me a greater purpose, because I believe it will help someone I may never get the opportunity to meet in person. I hope they realize that even though we are a small percentage of the population, there are other people going through the exact same thing. No one deserves to feel like they are completely alone.

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To Those Who Fear Their Story Ends With Disability

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The first time I “came out” as having a disability, I had the door slammed in my face by someone I’d known since childhood. Was it pity? Disgust? Simple discomfort? It was hard to tell. But in the space of a moment, I’d been rejected for a fundamental part of myself over which I had no control.

The recoil had me crawling into a cone of silence that held firm until I realized that the single most harmful act that could be done to me, I had done to myself. By staying silent, I denied my own agency, allowing others to make assumptions about my disability and all that it entailed. The truth of the matter, though, was that I was a survivor. A survivor of a chronic illness that slowly ravaged my body, stole my mobility and reshaped my reality.

The darkest corners of our truth are birthed from our most fragile vulnerabilities. There are some irrevocable losses that we may never make peace with, that instead, are honed to the sharpest of thorns. But like an oyster, chafed by a grain of sand that can’t be dislodged, eventually you polish it into something of value. The value is in learning that strength isn’t synonymous with invincibility; it’s embracing the parts of yourself that you see as broken and finding the courage to bear those parts to the world.

Your story doesn’t end with disability, but continues to evolve as you pen your own narrative. You don’t need a white knight to ride in and save you. You are your own hero. Strong enough to be gentle, powerful enough to be vulnerable, and scarred enough to understand and tread lightly around the deepest wounds of others.

There will always be people who doubt your abilities, who revile you for being different. But there is nothing wrong with who you are. I believe the only wrong that exists is when you stifle your individuality and strive to be a replica of someone else. Tune out the background noise and listen to the only noise that matters. Your voice, your truth, your strength.

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Toad&Co Hires People With Disabilities and Sends Them on More Accessible Vacations

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Toad&Co is an outdoor clothing retailer with a mission as cool as its clothes. In addition to promoting environmental protections and sustainability, it strives to help people with disabilities not only find employment but experience the great outdoors in a more accessible way, a mission it’s promoted by hiring people with disabilities and then sending them on memorable vacations.

In 1997, Toad&Co cofounded Planet Access Company (PAC), a third-party logistics company which employs people with disabilities. Approximately 40 percent of the Chicago-based warehouse’s permanent employees have a disability. PAC also hosts a training program for employees with intellectual disabilities — providing up to 70 paid, train-to-work opportunities — that teaches product assembly, order processing and how to handle materials.

In 2001, Toad&Co founded Search for Adventure, a nonprofit organization which sends adults with disabilities on “once-in-a-lifetime” trips. Since then more than 200 disabled people, including PAC employees, have gotten to participate in the organization’s 80-plus excursions, including trips to places such as the Appalachian Trail, the Bahamas and New York City. The company also sponsors an annual trip to its headquarters in Santa Barbara, California

“Supporting adults with disabilities has been an important part of our business and social mission since Toad&Co was founded 20 years ago,” Sarah Matt, Toad&Co’s vice president of brand and marketing, told The Mighty. “We believe, without exception, that opportunity and adventures in nature are possible, and more importantly – beneficial – for everyone.”

To support its initiatives, Toad&Co donates part of its proceeds to its programs supporting those with disabilities. Adding to its philanthropy, the company will donate 100 percent of proceeds from its graphic tees and tanks collection during March – Developmental Disabilities Awareness Month – to sending those with disabilities on more trips.

Thinkstock image via peppi18.

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What 'My Body, My Choice' Means to Me as a Woman With a Disability

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When I was a little girl growing up with cerebral palsy, I had beautiful long hair down to my waist. But when I was about 7 years old, my mom said I had to cut it because it would be “easier for me and other people to take care of.” I was furious. I loved my long hair and raged against her for reasons I couldn’t quite understand. In the end, I got her to agree to let me have it shoulder-length. Throughout my childhood, I would put off haircuts as long as possible, and when I went to college, I started growing my hair again. I’ve worn it relatively long ever since.

Over the years, I have thought a lot about my hair. I wondered why my mother’s demand made me so angry, why I still feel hurt about it all these years later. And then I realized — as a person with a disability, my hair is more than just a fashion choice. It symbolizes something much more significant: my right to make choices about my body.

People with disabilities are often treated as if our bodies are not our own. This begins very early for those of us born with a disability, as we have to go through medical procedures we cannot consent to and may not fully understand. We are told that others know what is best for our bodies, and we have little choice about who touches us and how. Even though decisions about our bodies are usually being made with our best interests (or others’ perception of them) at heart, this loss of bodily autonomy can have a long-term impact on self-esteem and relationships.

Throughout our lives, we have to get help from strangers with the most personal tasks imaginable. I once tried to count up all the different personal care attendants I’ve had over the years. I stopped when I got to 100. For somebody whose job doesn’t involve a pole, an awful lot of people have seen me naked. It goes against my personality; while I don’t consider myself shy, I would be a very private person about my body if I could be. But I don’t have a choice in the matter.

Thankfully, many of the people who have helped me over the years were kind and caring. Some were indifferent. A few were abusive. Unfortunately, people with disabilities tend to be targets for abuse by people with bad intentions. I’ve experienced this several times in my life, including in a romantic relationship. I’ve learned from personal experience that abuse tends to begin with small violations of consent. These acts can be quite subtle, such as intentionally refusing to follow simple but specific instructions from a person about how to dress or care for them safely, and causing them pain and/or embarrassment as a result. The abuser generally cites “convenience” or “that’s too much work” as the reason for refusing to honor someone’s choices and needs, and may also make negative comments about their body.

In some cases, these actions are not malicious; they can stem from genuinely not understanding. Some individuals who are trained as “professional” caregivers may get the idea that the way they learned to provide care in school is the right way for every person. I’ve had to learn to stand up for myself and say, “No, that doesn’t work for me; this is the way I need to do things.” Most of the time, the person respects my autonomy. It’s when they don’t that problems arise.

Whether the cause is deliberate abuse or poor training, lack of bodily autonomy can slowly chip away at a disabled person’s self-esteem. It can make us feel guilty for needing help, for even existing. I know my body; I know what it needs, and I’ve taught dozens upon dozens of people with a variety of ages, strength levels, and body types how to help me. It baffles me that any person would come in and try to tell me how they are going to do things. Yet it happens.

On my recent, disastrous road trip with a caregiver who turned abusive, she showed early warning signs of refusing to help me in the ways I needed, even when I said it was causing me additional pain and fatigue. As we both became more exhausted and frustrated, she began to lash out emotionally with words and actions that pointed to what I believe is often in the minds of people who abuse those with disabilities: a particular, insidious form of ableism.

I apologize for the TMI nature of this next incident, but I want to make sure people understand the reality of my life. During the trip, the caregiver was helping me to the restroom. I had just gotten my period, but already had the needed protection in place. When she saw it, she looked repulsed. “I’ve never taken care of someone on their period before,” she complained. “Most people like you do something about it.”

People like me? I was completely shocked by her words. To make sure I wasn’t misunderstanding, I asked her to clarify what she meant. She said, “Well most disabled people take a pill or shot or something so they don’t get it.” I was so floored at that moment, I couldn’t express what I really wanted to say. I rattled off something about having tried various things and they didn’t work and caused problems for me, hoping she’d let it go. She didn’t. She angrily responded that I should “try more options” and “try harder.”

I was horrified. What kind of woman humiliates another woman for having her period? She seemed to be saying that as a woman with a disability, I should be expected to alter my body just to make it more convenient for my caregivers. Her concern wasn’t for my well-being; I wasn’t dealing with cramps or PMS, and she persisted in her demand after I told her my body reacts badly to birth control pills. She wasn’t new to caregiving; she told me she had cared for several other people before, though they were mostly seniors. And yes, she claims to be pro-choice — it’s all over her Facebook page. But it seems her respect for women’s bodies and choices does not extend to those of us with disabilities.

I have encountered many people working in health care fields who are deeply ableist and believe people with disabilities should limit our lives because our existence is inconvenient. They body shame us, and expect us to let others choose when and how we will have basic needs met. We are expected to respond with subservient gratefulness for whatever help we are given, even if we are treated disrespectfully. This attitude is deeply ingrained in the health care system. For example, although I try to avoid using home health agencies, I have had to do so on occasion when I was short of help, moving, or had an emergency. I found myself in that situation after I got away from the abusive caregiver mentioned above; I had help coming my way, but she wasn’t there yet. So I called an agency and asked for a female caregiver — someone physically strong enough to do transfers, able to drive, and who likes dogs. When I said this to the scheduling worker on the phone, she reacted as though I had asked for something extraordinary. She did find someone for me — and that person was great — but apparently she had to make several calls.

When the bare basics of my life are considered extraordinary, I believe there is a real problem with ableism in our health care industry. I feel like many people 18-50 years old can meet all the requirements I asked for, if given proper training on how to do transfers. I guess it’s no wonder the awful woman I traveled with had managed to work as a caregiver for years, with such low hiring standards at agencies. And of course, poorly trained workers aren’t taught to respect their clients with disabilities and are more likely to be abusive.

People who have worked in medically-oriented caregiving settings often don’t know how to react to someone like me. I live my life as I choose. If I want to do something, I figure out a way, and I don’t let my disability hold me back. I honestly don’t care if people find aspects of my disability inconvenient — I do too, but I’m not going to accept less from life because of it. I strive to be kind and treat those who assist me with respect, but I don’t respond with fawning gratefulness every time someone shows up and does their job. I expect people to work hard, behave responsibly while still having fun, and most of all, respect my body and my choices.

I wish supporters of women’s rights would recognize that for women (and men) with disabilities, pro-choice goes beyond abortion. My body, my choice means the right to be considered a whole woman even if you have a disability. My body, my choice means women with disabilities deserve equal access to gynecological care, and should not be pressured or forced into suppressing our bodily functions or being sterilized, as hundreds of thousands of us were during the height of the eugenics movement. My body, my choice means the right to have children if we want them, and to have our gender expression and sexuality respected whether we are straight, pansexual, or lesbian. My body, my choice means the high rate of domestic violence, sexual abuse, and caregiver abuse against people with disabilities must be acknowledged and addressed with the same dedication as violence against women without disabilities.

Pro-choice means the right to make choices about every aspect of your body from your hair down to your toes. I often see women with disabilities wearing frumpy, ill-fitting or stained clothes, and of course with short hair. Now granted, who among us hasn’t run out to the store looking a bit scruffy… but I often wonder if that’s really how they would like to look every day. Are they being given choices and support to buy fashionable clothes, wear make-up if they wish and have a hairstyle they like? Basic rights most women take for granted are often denied to us. That needs to change.

A friend and former assistant of mine has a very cool tattoo. It’s a braid of hair, shaped into a heart. In the center are the words “Long hair. Don’t care.” The tattoo symbolizes doing what is right for your body and your life, even if others may disagree or judge you for it. It’s a right we all should have, and one I continue to defend with my beautiful long hair and every other choice I make each day I live on this Earth with a disability. I hope if you know me, or if any other person with a disability is part of your life, you’ll defend our right to live as we wish. And when you say you’re pro-choice, make sure your respect for women’s bodies and choices extends to those of us with disabilities, too.

Follow this journey on Free Wheelin’.

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To the Parent Who Helped Encourage My Son With a Disability

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Dear Parent,

I don’t know if you remember me or not. The moment our paths crossed was probably so split-second that you never thought twice about it, but it still warms my heart.

It was a beautiful, not-so-hot summer day and I loaded the kids up to go to the park. The park we frequent is about 20 minutes away, and it is worth every minute of the drive. You see, this park is the only one in our area that offers wheelchair users like my son the ability to play on almost every piece of equipment. Because my son is 2, the park is not only a play experience but a learning experience as well. You see, for every wheelchair ramp, there are stairs on the other end of the equipment for the non-disabled users.

My son Luca comprehends that his wheelchair allows him to get from Point A to Point B, but he has a hard time grasping that a wheelchair cannot go up the stairs. Like any other 2-year-old, he doesn’t like being told he can’t do something the moment he wants it. He pointed to the stairs, and I acknowledged that I understood him, but redirected him to the wheelchair ramp.

As he finished his episode of frustration and we slowly made our way to the ramp, we met you and your daughter walking down the ramp. As a bit of encouragement for my son, I pointed in your direction and said “See! That’s where we go to go play.” Without any hesitation, you promptly encouraged my son and “Come on buddy! This way! Keep going!”

All I could do was crack a smile. Honestly, I did not think you were going to say anything. I was expecting a simple smile or no acknowledgment at all. But you did the exact opposite. You encouraged my son to use his wheelchair up the ramp.

It is not easy as a parent when you have a strong-willed child, and my strong-willed child is on wheels. From one parent to another, I thank you for being another voice on the sidelines cheering my son on his journey. No victory is too small in our world.

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Thinkstock photo by Jaren Wicklund.

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