I’m Disabled and Proud—But Society’s Views of Disability Made It Hard for Me To Feel That Way

This month marks my fifth anniversary of being disabled. Five years of sadness, frustration, joy, and celebration. Five years of how I keep being amazing. Five years of becoming an advocate for myself and the disability community. Five years of learning and unlearning what disabled means.

My disability anniversary also comes right on the heels of Disability Pride Month, which is observed every July. It’s time where we get to celebrate ourselves, our accomplishments, our determination, and our resilience. It is a month where we get to see other people who may look or live like us.

There was a time when I refused to believe I was disabled—not because I saw anything wrong with disability, but for what it would mean for how society would view me.

However, there used to be a time when being disabled wasn’t much of a celebration for me. I live with several rare genetic conditions including coronary artery spasms (where the arteries that supply blood to the heart periodically constrict), Ehlers Danlos Syndrome (which affects connective tissues and makes skin very fragile), Alport Syndrome (which causes progressive kidney disease) and Ankylosing Spondylitis (an inflammatory disorder that attacks the spine). Yet I once refused to believe I was disabled—not because I saw anything wrong with disability, but for what it would mean for how society would view me. I never saw love stories of a disabled and non-disabled person on my TV or at the movie theater. I didn’t see the success story of a disabled CEO covered in my favorite magazines or news outlets. When people shared the stories of disabled people, the focus seemed to be on sadness, inspiration porn, GoFundMes, and pity.

That’s why I tried to avoid being seen as disabled. In California, where I live, the Americans with Disabilities Act (ADA) placard that you hang in your car comes in two colors: red for temporary disability like recovery from injury or surgery, and blue for permanent disability. I was still in the diagnosis phase at the time, which made me feel like I was going to get my life back. To me, red meant not forever, and maybe, just maybe, I would get better. Committed to that concept, I would drag myself down to the DMV and renew my red placard every six months for two years.

But one day my doctor sat me down and said, “It is time you get a blue disability placard.” My heart dropped. My doctor carefully filled out the permanent paperwork listing all of my disabilities at that time and I took it to the DMV. When I finally had the blue placard in my hand, I cried.

It was at that moment I realized I was disabled. And it was forever.

Self-empowerment was the path I took to cope with a new part of my intersectionality as Black disabled woman. Telling friends, family, and followers that I was disabled became powerful. I used it as a way to educate people with visible and invisible disabilities. When a stranger accosts me for parking in an ADA spot, I share that not all disabilities look the same. When I get nasty looks at the airport when I pre-board with other people with disabilities, I remind people that disability is not just using an assistive device. When a company or brand treats me unfairly due to my disability, I use my platform on social media to call them into an opportunity of accountability and action. Through talks, panels, and even this article (which I wrote just after being discharged from the emergency room), I use my voice to show the power and pride disabled people live with daily.

Disability Pride Month has come and gone. But I urge you to take action every day to uplift and support the disabled community, not just during one month. Here are my action items for folks looking to further their allyship and support of the disability community:

• Remove “able bodied” from your vocabulary. This term is used to describe people who don’t have disabilities, but it’s misleading: I (and other disabled folks) have the ability to do things the same as you or a little differently. Replace it with “non-disabled” because it includes disabled people in your conversation.
• Learn our history. Educate yourself about the Americans With Disabilities Act, which was signed into law in July 1990 due to continued advocacy from disabled activists. I also recommend watching Netflix’s Crip Camp, an award-winning documentary executive produced by Barack and Michelle Obama that shows how powerful our advocacy can be.
• Diversify your feeds. Follow activists like Imani Barbarin, Catarina Rivera, and Aaron Philip on social media to learn more about how we thrive and how you can advocate for us.
• Donate to disabled activists and causes: If you are privileged enough to volunteer or donate, use this intersectional list as a guide to where to start and continue supporting the disabled community, or buy from a shop owned by a disabled person.
• Advocate for intersectional celebrations at work. Talk to your employer to find ways to celebrate Disability Pride Month next year. Bring in disabled speakers or collaborate on a cool product. Perhaps you may even become inspired to advocate for more acknowledgement of the LGBTQ+ members of our community, whose stories and experiences often get overlooked during Pride Month in June. (In America, almost 13 percent of disabled people identify as LGBTQ+, compared to 7 percent of the overall population.)

Above all, uplift us and amplify our voices, because we are responsible for uplifting ourselves 24/7. As a Black disabled woman, I am constantly advocating for my appointments, tests, treatments, and having my pain believed during my many emergency room trips a year. The progressive disabilities I have will test me at times, but I still find a way to keep moving forward with my ever-changing disability identity.

Pride is something that we find through perseverance. Through being overlooked. Stared at and misunderstood. Being in a position to thrive every day in a society that really isn’t designed for us is a tremendous source of pride. I am proud to be disabled. I am proud to use my voice. I am honored to tell my story in hopes for more love, support, compassion, and advocacy for my community.