How I Overcame the Stigma of My Wheelchair

Dani became paralyzed at the age of 23, at which point her life changed forever. I learned of her through friends and was struck by her inspiring story. Below is her as-told-to account of overcoming an unimaginable obstacle. -Amelia Diamond

I’ve been in the chair for almost nine years. I was out with a friend one night at a restaurant. I went to use the bathroom, had on high heels, and literally slipped and fell. I hit my head on the wall and the impact snapped my neck, which is just insane. I still have no idea how that could happen. I was tingling everywhere and so confused.

They gave me an MRI when I got to the hospital and told me my neck was broken. It was a spinal cord injury. Technically, I’m a quadriplegic. (I say technically because that is the name of my medical diagnosis, not my status as a human being.) Most people think I’m a paraplegic since I can move my arms, but I have bad dexterity and my triceps are weak; any amount of paralysis in the upper limbs classifies you as a quadriplegic. That sounds like the scariest word on the planet, but I’ve embraced it.  

The First Two Years

The first two years were physically and psychologically brutal. It felt like purgatory: I didn’t want to die, but I didn’t want to live, either. It’s the worst feeling. It’s just blank. On top of that pain, I had physical pain you can’t describe with words in the dictionary. It felt like an alien was in my body. When I was in the hospital, waking up every morning was like a nightmare. I was so depressed. I’d be like, I’m back. This is real and happening. It sucked. It sucked so much. Every night, before I went to bed, I’d have an existential crisis. Up until that point — I was 23 when I got hurt — I’d experienced my whole life through my body. That’s the lens I used to experience the world, and then it shattered. I was lost: Who am I? Who do people think I am? What can I do? What’s the point?

Things slowly but surely changed over time. It’s been a journey. I’m challenged every day. I never have a vacation from my body, but I’m also so proud to be a wheelchair user and be part of the community I’m in. I’ve chosen it as an identity.

The Important Role Anger Played

The change started because I had to do stuff. I had to take action. When I went through paralysis, I was stripped of control over myself. I couldn’t use the bathroom without needing assistance. I’ve found ways around that so I am completely independent now, but at the beginning, I felt stripped of dignity. As time has gone on, I have felt more and more like myself, more confident in my skin. I took decisive actions to improve my life.

It’s amazing how much anger drove me. Anger can give you an adrenaline rush to take action. I was so angry about what happened to me, what I’d lost and what was happening to my relationships that I had to find a way to channel my anger. I was like, Okay, I need to do something drastic. One drastic move. But the first year, I was so weak that I’d black out from positional changes. You know when you sit up too fast and get dizzy? It was that times 500. The feeling was worse than paralysis. After lying down, it took two hours for my body to adjust to the upright position in my wheelchair.

Once that got a little better, once I wasn’t a zombie, I called my best friend and said, “I need to get out of here.

Through research I found an exercise program in California. I did fundraising to afford the trip. This was the first decisive action I took. My best friend came with me. She was like my nurse — she catheterized me every day, helped me go to the gym. What an incredible friend. She was amazing. She made that trip possible for me, to go across the country, to be independent from my parents, whom I love — but I needed to do this on my own, to be with other paraplegics. That’s what gave me fresh air.

I realized I thrived on independence. I realized it made me happy and I would have to chase after it. I love my family. They were so supportive — they supported me financially, by literally helping me move and coming to visit (my mom would come visit for a month straight) and helping me accomplish practical things like driving me places and helping me get in the car. They helped me fundraise — but I didn’t want to depend on them forever.

The Keys to My Independence

The following actions marked significant turning points:

Bladder surgery. This allowed me to manage my bladder on my own. I pee out of my belly button through a catheter now. It was a huge decision; they completely rerouted my plumbing. It means I can pee on airplanes and in cars, and that’s great.

I started online dating and putting myself out there, which was really interesting. I had to put all my fears aside and just have fun. I look back on that time now and think about how guys would ask me weird shit. (Sex was the first thing people would ask me about: “Can you still have sex?” I’d be like, “Yes. They do not sew your vagina together when you have a spinal cord injury.” The second question is: “Can you feel?” People assume you can’t. A lot of people who are paralyzed can feel to varying degrees. I can feel. I can feel all the way down to my toes, but I can’t feel the difference between hot and cold.)

There was a lot of rejection, a lot of stigmatization. But it didn’t hurt when I got rejected. Right away, I’d realize, “You don’t really understand me. You’re not evolved enough to love or appreciate a person like me.”

Three years after my injury, I applied for grad school and got my master’s in English. I don’t know why I did that [laughs]. But I wasn’t ready to work full time yet and still had to work on being independent: I wanted to be able to get into the chair without falling on the ground, without needing help. I needed time to learn how to cook for myself. I compare it to circus performers: They don’t just all of a sudden know how to do those crazy tricks. For me, getting into my chair from the bed was a crazy-ass trick. I took the time during grad school to work on all of this.

Then I got a job — I work at Spinergy, which makes high-performance bike wheels and wheels for wheelchair sports (and everyday wheelchair use). A lot of major athletes in wheelchairs use Spinergy wheels. I built up Spinergy’s social media presence from scratch.

And finally, I got a service dog, Zandra. (That’s the name she came with. I call her Z Dog.) That was huge, socially. She really helped me the most. She does tasks: picks things up, helps open doors. But the biggest thing was that she helped me feel comfortable in public. When I was just starting to be comfortable with myself, someone would come up to me on the street or in a store and make me feel weird. Even in a harmless way. They’d ask me what happened, or tell me about someone they knew in a wheelchair. You learn how to brush it off and not be annoyed, but it made me feel uncomfortable. When I got Z Dog, my focus turned to her, and it stopped my anxious thoughts in public. And people were way more interested in her than in me. That’s mostly why I bring her around now.

My Relationships and Identity

I studied English and disability studies in grad school, and there’s a whole discussion around the preferred verbiage. Some prefer person-first language — “person with a disability” rather than “disabled person.” Then there are those who find it condescending when others assume they’re not proud of their disability and wouldn’t like being called a “disabled person.” You don’t have to tiptoe around the word “disabled” with me. I’ve embraced it as an identity.

I really feel like myself now. I’m very confident. I can’t believe how many boundaries have come down because of my disability, how I’m not ashamed by my body. It’s so freeing even though I can’t move very well. I think people fear being disabled, whether because of old age or through injury or getting sick. I love being free from the fear of disability. It’s the people with disabilities I’ve met these past nine years who have empowered me and helped me get to this place. I know it’s cliche to say that, but they really did.

My relationship also helps a lot — I’m engaged. My fiance’s name is Rudy. We actually just got our offer accepted on a house! Now that I’m with him, everything has fallen into place. I’ve found someone who loves and understands me so much. I’m very comfortable with him. When we were first dating, I loved  that he waited until I was ready to tell him things. I added him to an online support group so he could learn about spinal injuries and familiarize himself with all the complications, emotions and feelings.

Rewriting the Rules

People ask me questions that are pretty personal. The only things people don’t ask me in relation to living my life with a spinal cord injury are: “Do you want to go for a hike?” or “Do you want to go to a Zumba class?” It would be so much more fun if they did ask me because then we could break some barriers. I think people assume, Oh, you’re handicapped, so you can’t do this.  

Another one: “Will you babysit my kids or house-sit or watch my pet?” I don’t get asked to do things that give me personal responsibility.

Rudy’s an avid runner, so I got a mountain “bike” (seated) so I can go with him. I have a friend whose friends take turns carrying her on trails. It’s about being creative and doing things a different way. And the Zumba: I would love to just show up, say hi, and see what they’d do with me. It might be awkward but it would be great. I have done dance and yoga and I’ve gone skiing (which I didn’t love because I hate being cold). I went on a surf trip to Costa Rica, which was amazing. And I’ve started riding horses for therapy.  

I want to be a person who helps other people. I want to be known as the person who wears her disability well. I want to use it to educate people, to make them comfortable about things they’re uncomfortable about, to get people to break free of the preconceptions they have about disabilities and to experience the kind of freedom where you just don’t give a fuck. And I want respect — mutual respect between people with and without disabilities.

What Insurance Doesn’t Cover

I had to fundraise for myself because the cost of this is insane. I’m sitting on $25,000 worth of equipment, and insurance will only do so much. It will cost me $50,000 to $100,000 to make my home wheelchair-accessible. A van with a ramp is about $60,000. The hand controls that I just got installed were 10 grand! Insurance does not cover that.

Here’s the biggest issue: How does a person who’s disabled — who can’t work because they’re sick and rely on government checks — get the equipment they need? The wrong kind of equipment can do more harm than good. How do they get to work if they can’t buy a car or don’t have accessible transportation? What if the state won’t provide a caretaker and they need one? It’s a real issue. (In fact, something I advocated for recently is proper funding for complex rehab technology.)

Community Involvement, Social Media and Activism

I’ve become involved in advocacy on local and national levels. Locally, I’ve worked with city commissions and disability groups to ensure greater access to public resources. Nationally, I’ve worked with the United Spinal Association, particularly their yearly advocacy event called the Roll on Capitol Hill where they gather a team of people in wheelchairs to speak about key issues in the community face-to-face with members of Congress. Just being seen is really important. It helps those who work in legislation to better understand.

When I moved to San Diego after grad school and started meeting people who had all kinds of disabilities — not just traumatic injuries, but people who were born with disabilities — I gained incredible respect for people with disabilities, for their perspectives, for their openness.

I once volunteered at a junior wheelchair sports camp with a bunch of different groups, and a little girl came up to me and asked, “What is the nature of your disability?” She was so gracious. I told her that I have a spinal cord injury. She looked at me and went, “Oh my gosh, that’s amazing!” No one had ever said that to me. Normally they say, “I’m SO SORRY.” But she thought it was amazing. I was so confused, and then she said, “So that means you got to dance?” I almost cried on the spot. She wasn’t jealous. She was just happy for me, and she thought it was magical that I had danced with my legs before, even though I couldn’t anymore.

Her stigma-free attitude made me think about the stigmas I held toward people in wheelchairs before my injury. It made me reflect on how I still carried some of these stigmas with me after the accident, while I was still getting used to my new reality, and how they contributed to some of my early insecurities about using a wheelchair.

It’s also amazing what social media has done for people with disabilities. It’s offered so much visibility. Over the past five years, having a disability has been embraced more as an identity, as a culture. Instagram has become this platform for self-expression and promotion for people with disabilities — that’s been cool to watch. I follow people like @Jilly_Peppa (she’s a fashion icon), @ksenia_bezuglova, @uwalk_iglide, @TiphanyAdams and @TamaraMena1 for beauty/fashion/style; for adventure/sports, I follow @misslucyintheskye, a 10-year-old skater with spina bifida, Aaron Fotheringham, a WCMX rider, and @D_rail, who is always doing something cool.

I think the visibility across social media is making an impact on other forms of media, as well. Issues come to light. People with disabilities discover other people with disabilities. Brands and agencies (media, modeling, acting) discover ambassadors who have disabilities, which means there’s more opportunities for those with disabilities to get roles in movies, shows, etc. There’s a large population of us with all sorts of disabilities, and as a group, we’re more powerful.

To learn more about disability rights and find out how to get involved, check out ADAPT, “a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom,” the Disability Visibility Project, “an online community dedicated to recording, amplifying, and sharing disability media and culture,” and the United Spinal Association, an organization that is “dedicated to enhancing the quality of life of all people living with a spinal cord injury or disease (SCI/D).”

Photos by Edith Young.

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  • Tessa

    This is so inspiring! Clearly you already know, but you are a such a beacon of strength and reading your story (especially the happy ending) brought tears to my eyes. Is there a way to volunteer with Roll on the Hill? I live in the DC area and would love to help out!

  • Samantha s

    This is beautiful and inspiring. PS awesome skirt. You look gorg.

  • Abbie

    Thank you for this! I sent to my sister who is a 29 year old college graduate, living independently, also paraplegic. I find that the average person doesn’t consider what life is like for someone who uses a wheelchair–when they leave their shopping cart in the loading area of a handicap spot, when they set up their store or restaurant without enough room for someone in a chair to get by, when they don’t comply with other ADA rules to make businesses accessible (including Uber with its lack of accessible vehicles!). My mom says “disability is open enrollment”–anyone can become disabled at anytime. A world that is accommodating to people with disabilities is good for everyone, including moms with strollers, kids, and our growing populations of elderly people.

  • Thank you so much for sharing this story!

  • freudianslippers

    Oh my gosh I love this so much. Especially pertinent after a weekend of women’s marches, a lot of which were organized without much attention to accessibility and inclusivity for people with disabilities. I’m a pretty hardcore feminist, and I can’t even tell you the number of activist-y spaces I’ve been in where they run down the list of identities they support or oppressions they combat (transphobia, homophobia, racism, sexism, femmephobia..) and leave out disability and ableism. It’s infuriating.

    I’ve spent the last four years researching mental health from a disability studies lens. Discovering disability studies brought my own struggles with mental health totally into perspective for me, and I met so many incredible people. Thank you for sharing your story, for opening that door to conversation (love the zumba thing, I would totally go with you!) and for showing that disabled women are SO beautiful and badass.

  • Caitlin Ridgeway

    These are the types of articles that make man repeller such a subjective space – it openly connects all of the content on the website, reminding readers that there are varying levels of importance to different information, but all within a reader’s perspective. Consistently wonderful content. Thank you.

    • Serena

      I was thinking just this. This is why I love MR so much- there is no comparable content provider or community out there.

  • Thank you for sharing!

  • So inspiring and insightful, well done.

  • Adrianna

    Thank you for sharing your story, Dani.

    Happy to see an increasing variety voices on Man Repeller

  • Cynthia Schoonover

    Thank you for sharing your story. My brother broke his lower back in a work accident. He eventually walked with a cane and leg braces. Because his injury was work-related, workers’ comp paid for his hand controls for his truck. Whenever I am in a store and I see a person in a wheelchair looking at items on a high shelf, I always ask if I can get something down for them. I remember years ago shopping in a Walmart, and a young man in a wheelchair needed help and everyone was ignoring him like he had the plague. He asked me could I get eggs out of the cold case for him, and I did. I opened the carton so he could see that they weren’t cracked. He asked me to get some milk for him and I did, and showed him the date. I was glad to help him and he was so gratefu. Across the road from the Walmart are apartments for people with disabilities so he was able to go to Walmart.

  • Serena

    Thank you door sharing your story Dani and thank you Amelia + Manrepeller for ringing attention and awareness to a diverse range of experiences and voices. This is what makes the MR platform and community so special.

  • Holland Kennedy

    incredible, incredible read. thank you so much for sharing!

  • Brought me to tears, such an incredible, inspiring share. So moved by Dani. Thank you for sharing more about this community that is often overlooked. <3

    Eva |

  • nelgracev

    Beautifully written. <3

  • ehh

    ‘i never comment, but felt compelled to chime in and say that this is my favorite post ever. Thank you, Manrepeller, for representing of the diversity of human experience.
    rock on!!

  • Gabe

    Thank you for sharing your story. So grateful to have met you in CO a few months back. Keep on trucking Dani, you are one badass chica!

  • Charlie

    First comment, but had to chime in and say thank you Dani! I am currently on a leave of absence from college–I was on a study abroad program and broke my ankle and had to drop out of the program because my surgeon deemed the program too inaccessible. Mine is a short term injury, but it’s really opening my eyes to how many institutions aren’t doing what they need to in order to be fully accessible to people with disabilities. Thinking about ways to get involved.

  • Kiks

    “So that means you got to dance?”

    I am weeping.

    This was a truly eye-opening, perspective-shifting read. Thank you so much for sharing all of this with us.

  • jr

    beautiful beautiful article <3 I had a mild tbi (rollerskating) and am two+ years post. It's been a rocking experience that I am still processing & finding ways to look at positively. Thank you for sharing your story Dani! Love this content MR – thank you for being a platform <3

  • Kimberley Boehm

    One of the best articles I’ve read on MR—and they’ve been really strong of late. Dani, your statement that people need to get past our stigmas and biases really resonated for me. We’ve all got a lot of work to do in that regard. Thanks for sharing your experiences.

  • Kim

    Amazing article. Thanks for sharing your story – it’s inspiring on many levels.

  • claire

    loved reading this. like most people (it sounds like), i was so interested in z-dog too! and next time i visit my quad cousin i’m gonna tell him to get straight to the kitchen and make me something delicious! … and see what his reaction is :p

  • onward

    Thank you for sharing this. Man Repeller, are you going to take a stand on Mira Duma’s recent comments and the video of her making homophobic and racist comments? You stand for diversity, right?

  • Stacey

    Powerful. Thank you for sharing. Disability is not something to be feared.

  • me

    There’s so much content on MR these days that I cant seem to keep up with it all.

    I’m so very glad I finally got around to reading this thoughtful & inspiring post.
    Brava, sister.

  • Lindsey

    Wow, wow, wow. I am in tears. Thank you so much for this interview/article. I love learning from other women, and I just learned so, so much from Dani. What a gracious, thoughtful, honest, delightful woman! I want to be friends with her.

  • Kelsey

    You rock Dani- congratulations on the house!! From the corner I can see of her vest, I wondered if Z-dog might be a CCI dog- I work with/have a facility dog from them and love seeing CCI pups in ‘the wild’! Thanks for sharing with all of us!

    • Daniela Schirmer

      She is!

  • This is one of the best articles I’ve ever read (on this site or anywhere!!) I’d say your English masters was put to good use 😉 Thank you for sharing your story!

  • Anne

    Thank you for sharing your story. What an inspiration to anyone with obstacles in their lives. Also, congratulations on your engagement!

  • I did my Master’s Thesis on wheeling efficiency in people that use wheelchairs for mobility. As a 25 year old ale-bodied researcher, I would have LOVED to have read Danis story instead of the crash course in interacting with people with disabilities that I fumbled through. Dani you are a rock star. Well done MR! A great read on a great woman.

    • Daniela Schirmer

      Oh no, I can only imagine how awkwardly staged and outdated the course might have been ! Thanks for reading

  • Elle Shoel

    This is totally wonderful.

  • Mun

    Such a beautiful strong woman. So admirable.

  • Roxana

    Thank you! Thank you! Thank you! Thank you Dani for sharing your story. For sharing your beautiful life!

    Love this! So well-said. It brings tears to my eyes to know that Dani and people like her are graciously using their voice to bring awareness and make changes. As the mother of a child who is disabled, this (Dani, MR interviewing her, etc.) is so validating and empowering and important for all of us, regardless of ability.

    A great social media presence for individuals who have disabilities and particularly those who have children: Dani, I’m sure she’d love to interview you!

  • AmericanmanStan

    Well written article. Great job Dani!

  • As a disabled woman, I find it so refreshing to see disability covered in such a straightforward way. Especially happy to see mentions of disability, identity, and language choice.