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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