July is Disability Pride Month, and Families USA was honored to have a conversation with Disability Rights Activist Ola Ojewumi about her personal health care journey and the work she does to inspire and educate others.
At age nine, Ola was diagnosed with a rare heart. Two years later, she received a heart and kidney transplant. After her transplant, Ola lived with a hidden disability and struggled with mobility. A decade later, Ola was diagnosed with cancer and subsequently, became a wheelchair user. Facing both racial and ableist prejudices both from individuals and from laws and institutions, Ola was motivated to become a disability rights activist. Ola graduated from the University of Maryland, College Park with a bachelor’s degree in government and politics. She founded two nonprofits (Project Ascend and Sacred Hearts Children’s Transplant Foundation) and advocates for affordable health care, and the human rights of women, people of color, and the disabled. Ola is a fighter and her story is one of triumph not tragedy.
Hi Ola, thank you so much for joining us. What does Disability Pride mean to you and why it is so important?
I spent much of my adolescence trying to hide my disability, which included not wanting to use a mobility device like a wheelchair. I could go to a one-floor school farther from my home but chose not to. I spent years of my life in deep denial, and becoming a wheelchair user forced me to accept that I was indeed disabled. It was a hard lesson because I had always associated disability with being negative and something you shouldn’t want to be. You should try to overcome it.
In reality, you can’t overcome being disabled. It’s impossible, as you may have to live with those limitations and medications for a long time. As a transplant recipient, I’m on medication for the rest of my life. I experienced nerve damage in my right leg, and my lung collapsed after my heart and kidney transplant at 11 years old. I came out of surgery having to use a walker and a leg brace, facing difficulty walking. Those things improved, and my disability became hidden after some physical therapy. I still had to accept limited mobility, and being on immunosuppressive treatment to keep my new organs from being rejecting would be a part of my life for the rest of my life.
Luckily, when I was an intern at the White House during the Obama administration, I was also in another program for disabled youth. The organization paid for my housing, I lived with other disabled interns, and we were required to learn about disability rights, the disability rights movement, disability history and disability pride. I learned that disabled people chained themselves to buses, blocked intersections and crawled up the steps of Capitol Hill for accessible public transportation, the right to work and accessible public buildings. We were taught about the 504 protests, the Americans with Disabilities Act (ADA), and that disabled people are paid minimum wage (e.g., sub-minimum wage). There is very little value in the labor disabled people provide, and our lives are deemed less important. I was educated about disability pride and all the sacrifices previous generations made for me as a young disabled person.
This meant my shame in being disabled was a slap in the face to disabled leaders that sacrificed their lives for the rights I enjoy today. I had to stop refusing to identify as disabled and trying to cover up my disability.
How do you show your Disability Pride and work to educate others on disability rights?
Though I am still insecure about being disabled, which never goes away for most people, in my opinion, I began to share the information I learned with others by starting #DisabledWomensHistory and #DisabledBlackHistory campaigns on social media to educate people about the history people with hidden and visible disabilities made. For example, most are unaware that the first African American woman to win the Oscar for Best Actress, Halle Berry, is partially deaf in one ear due to domestic violence.
Abolitionists like Harriet Tubman and Sojourner Truth both were Black women with disabilities. Tubman had epileptic seizures. Like many enslaved people, her disability was rumored to have been a traumatic brain injury caused by violence at the hands of an enslaver due to whipping. Sojourner Truth’s disability stopped her from attaining freedom from slavery, which her enslaver assured her he would grant to her and her infant daughter after one year of labor. At the end of that year, her “master” informed her he would not award them freedom due to a hand injury that made her less productive. She decided to run away from slavery, later becoming a well-known abolitionist, orator and illiterate author who produced one of the best-selling autobiographies of her time. Like me, Sojourner Truth was ashamed of her disability. As you can see in portraits and photographs of her, she intentionally hid her hand injury behind knitting needles to conceal it from the public. Internalized ableism is nothing new, and I raise awareness about it through this work.
I want to inspire other disabled people to no longer stay closeted, hide their disabilities or be ashamed. We are a mighty tribe of leaders who excel daily, but no one knows who we are and how we impact society as we’ve been taught to hide who we are.
Living with a disability can be a lonely experience. Are there any disability or health activists, past or present, who inspire you?
I admire Black Panther Brad Lomax, who was a disabled activist and connected the Black Panther Party with disability rights leaders to provide food and assistance during the historic 504 sit-ins—a landmark protest where disabled activists took over a federal building in California. I am in awe of black women activists like Kamilah Proctor-Martin and Imani Barbarin, who are changing the face of disability, which has been traditionally whitewashed to the exclusion of people who look like me. Disability justice cannot happen without racial justice, and vice versa. According to the Ruderman Foundation, 50% of people killed by the police are disabled, and a substantial number of black and brown people who are incarcerated have disabilities.
I admire disability activists that bring attention to the intersections of race, gender and disability. I draw inspiration from the leadership and advocacy of disabled women, including Day Al-Mohamed, Dr. Angel Miles, Andraea LaVant, the late Judy Heumann, Lois Curtis, Mama Cax, Stacy Milbern and Dierdre Davis Butler. For young people with disabilities, I promise you that the world is not as small as you think it is.
As an activist who inspires others, what would you say to someone living with a disability who is experiencing that loneliness?
When I was growing up, I thought I was the only person with a disability on an island of my own where nobody could relate to me or understand my experiences. As an adult, I see the advent of social media in how disabled people have built community and quelled the gap of isolation on Twitter, TikTok and through Facebook groups. So, I recommend reaching out to the disabled content creators you most admire. They have e-mail addresses and public DMs open. Reach out and tell them how you feel. Make friends with other people with disabilities online, and don’t be afraid to say hi. It’s not a matter of being outgoing but survival. We need community to survive oppression, ableism and the alienation we’re forced to experience because society isn’t built with accessibility in mind. For the most part, disabled people are still separated because of inaccessible transportation and inaccessible homes. However, technology has changed all that. Loneliness only stops if you want it to, and it starts with seeking like-minded people and using social media to your advantage. Explore hashtags like #DisabilityTwitter and #DisabilityTikTok and see us sharing our vulnerabilities, triumphs, pain and power.
Do you have any words of wisdom for our able-bodied audience who want to learn how they can be greater allies and advocates?
Stop the hero complex. Challenge your biases against disabled people, check your internalized ableism and examine the language you use and how you discuss disability. Do not try to be a voice for the voiceless – disabled people have voices to speak for themselves. Instead, be an ally and amplify those voices and do not talk over them.
Do not wait for you or someone you love to become disabled for you to care about disability rights. Make an effort to educate yourself on disability history.
Instead of donating to disability nonprofits that are run mainly by able-bodied white people, consider donating to mutual aid funds allowing you to give money to disabled people directly. You can find disabled people seeking mutual aid on #DisabilityTwitter or GoFundMe. You can join advocacy groups and lobby local legislators in your community about pertinent disability rights issues: marriage equality, home care, voting rights, employment and housing access.
What do you want people to understand about living with disabilities?
My journey as a chronically ill person has been long and arduous, but it is not the tragedy most people believe it is. I’m proud to be disabled, and I’ve learned much from my experiences.