On this week's Take Note, Ola Ojewumi talks with WPSU's Cheraine Stanford. Ola is a public speaker, patient advocate and mentor. A double transplant and cancer survivor, Ola graduated from the University of Maryland College Park with a bachelor's degree in government and politics. As a student, she founded two nonprofits that distribute toys and books to children awaiting organ transplants, provide scholarships to low-income students, and funding for women's education programs. She's an outspoken advocate for the rights of people with disabilities.
Here is the interview:
CHERAINE: Welcome to Take Note on WPSU, I'm Cheraine Stanford. Ola Ojewumi is a public speaker, patient advocate and mentor. A double transplant and cancer survivor, Ola graduated from the University of Maryland College Park with a bachelor's degree in government and politics. As a student, she founded two nonprofits that distribute toys and books to children awaiting organ transplants, provide scholarships to low-income students, and funding for women's education programs. She's an outspoken advocate for the rights of people with disabilities.
Ola, thank you so much for joining us today.
OLA: Thank you for having me.
CHERAINE: On your website, you start off with talking about how your life changed at age nine, can you share for our audience what happened and how your life changed then?
OLA: So I grew up a pretty normal average kid and at nine years old, I was diagnosed with a rare heart condition. I actually was participating in a school field trip, an overnight field trip, and I couldn't keep up with the other students. And the school asked my mom to send me to a doctor to check me out — this isn't normal, she’s not as fast as the other kids. So when we went to the doctor, we discovered there was something irregular with my EKG, and they sent me to a cardiologist. And I found out I've been living with a heart condition most of my life, hypertrophic cardiomyopathy, it's a disease that you see on the television and on news where there's a story about a student athlete who collapsed and had an unknown heart condition. And within a year and a half, my condition spiraled out of control and my heart failed, and my kidney failed. So I was experiencing heart and kidney failure. And they decided to put me on the heart transplant waiting list. And they decided later to give me the same - give me a kidney as well, my kidneys were so damaged that they didn't think they could sustain the lifetime treatment for organ transplants. Because when you when you have an organ transplant, it's just, it's not, you are on medication for the rest of your life. It changes your life forever. And it's changed mine. It gives, it gave me a new perspective and a new outlook on life. And that life is short, life is very short. I was on the brink of death and I was saved because someone decided to check yes on their organ donation checkbox when they got their driver's license, and they made the ultimate sacrifice for me. So I feel like I need to make sacrifices and give back to my community, because if it wasn't for someone dying in order for me to live, I wouldn't be here. And I need to make an impact.
CHERAINE: What did the process of coming to terms with your disability look like for you?
OLA: It took me years to accept my disability. I was in deep denial. In high school, middle school and elementary school, I had disability accommodations but when I would see the word disabled, I would disassociate myself. ‘I'm not really disabled, I don't have disabilities.’ When I was 20, I became a wheelchair user. So I don't know how to explain it but becoming a wheelchair user forced me to accept my disability for what it was now that it was visible and no longer hidden.
CHERAINE: I was thinking about that because you've had different experiences — you've had not having a disability, having an invisible disability and then a visible disability. Do you think that that has changed your perspective or the way that you advocate for others?
OLA: It’s opened my eyes to all the injustices people with disabilities go through daily. Because I use a wheelchair, it's hard for me to leave, it's hard for me to leave my house. I have to have accessible transportation and I realized how unequal transportation is, transportation access is for people with disabilities. Even going to school and using a wheelchair at the same time, having inaccessible buildings on campus, all these things that were previously not barriers to me were now barriers because I used a wheelchair. And so it's changed my perspective and it's made me advocate for people with disabilities more, because I see all the barriers others don't see who have hidden disabilities. I will say this, it's legal in the United States to pay people with disabilities less than minimum wage. It's called sub-minimum wage. So and it's legal in 30 plus states for parents to lose custody of their kids based on disability alone. This disability opened my eyes to see the injustice that people with disabilities go through on a daily basis. So I have to be an advocate for my community for my people to overturn these unjust laws, policies and regulations, and make pathways for people with disabilities to succeed.
CHERAINE: And you were born the year that the Americans with Disabilities Act was passed, can you, can you talk about some of the injustices that you're talking about that you've seen over your lifetime?
OLA: Oh, I've seen I've seen so many, so many injustices particularly within the healthcare space. I've experienced medical racism, particularly with the opioid crisis and how it affects people with disabilities, how hard it is to get access to painkillers, because there are new laws to curb the crisis of addiction. And so it makes it very difficult for people with disabilities to get pain medication, but also people of color with disabilities to be believed by their doctors and to not slip through the cracks of the medical system because of medical racism. So the ADA outlaws discrimination based on disability, but it doesn't have a nuanced view of disability. The duality of racism and ableism and how they intersect is not acknowledged in the law.
CHERAINE: We have a semi new administration. Have you seen what you would like to see under President Biden's administration in terms of rights for people with disabilities?
OLA: Well, President Biden has created a position, a disability policy director position in the White House. So there's someone directly in the White House advising him on disability rights and disability policies. And he's promised to strengthen the Affordable Care Act, which helps people with disabilities. It was such a pivotal law because previously, insurance companies could discriminate against people with disabilities and deny coverage. Now they can't. So I've seen efforts made by the Biden administration to loop people with disabilities in and prioritize policy concerns of people with disabilities, and I'm excited to see what will come with this administration.
CHERAINE: Can you share what your experience has been for the past year just during this pandemic? What has your experience been like?
OLA: Oh, it's been seclusion and isolation. I can't leave. I actually contracted COVID-19 in December. I had to have an antibody transfusion. So it affected it affected me. I don't leave my house, I actually caught it from a family member. So the, the COVID-19 pandemic has caused increased isolation for people with disabilities, it's interrupted social services that people with disabilities get, home care. For me, personally, it's been having to be relegated to my home 24 hours a day, seven days a week. It's miserable, I can't go out because I have a compromised immune system. So for transplant patients, in order for you to keep your organs from rejecting, your doctors prescribe you immunosuppressive drugs to suppress your immune system’s ability to recognize that these organs aren't yours. So I was more susceptible to catching COVID-19 and I had to quarantine for 20 days after catching it. And it wasn’t, I had very mild symptoms Thankfully, I didn't need to be hospitalized. But it's been a, it's been an arduous experience.
CHERAINE: I saw you in an interview talk about some of the ways that things have changed in terms of workplace during the pandemic that have been beneficial to people with disabilities. For example, being able to work remotely. Can you talk about what some of those changes were that have happened during the pandemic that maybe we should continue after things go back to whatever normal looks like?
OLA: Well, first of all, telework is an amazing tool that, previously before the pandemic, employers would readily deny people with disabilities. So it’s a brutal irony that now that everyone needs to be quarantined, now we're getting the things we've been begging for for years. But some of the staple things that need to continue is online education now that everything's virtual. In-person education, it's not easy for people with disabilities to get transportation to stay in college, stay in school because of finances, because they physically can't leave their homes, because of lack of transportation, because of health issues. So particularly online education, how education has been transformed to meet the needs of people now, is going to be beneficial for people with disabilities who seek out higher education, who seek out employment. Now there are no excuses for why employers can deny telework and deny these options that have been readily available for years but have been denied and suppressed for people with disabilities. ‘I can't hire you because you can't come in’, that's no longer an issue.
CHERAINE: Speaking of hiring, what is inclusive hiring, and how can workplaces do a better job of that?
OLA: Workplaces can do a better job by invoking affirmative action. Affirmative action exists for people with disabilities on the federal level. There’s this program called the Schedule A program where you can get a signed letter from your doctor stating that you have a disability and you can be considered for federal employment at a non-competitive level, meaning you don't have to compete with the rest of the world for that one job. And there's a federal program called Workforce Recruitment where the federal government recruits people with disabilities to work, recruits them from colleges to work in federal agencies as summer interns or even long term employment. So, more companies need to employ affirmative action and have specific hiring initiatives to recruit people with disabilities. People with disabilities make the best employees. Statistically, we don't have high turnover rates, we stay within companies long term. There are so many things people with disabilities can offer in terms of innovation, because we have to adapt our lives to an inaccessible world and that translates into the workforce. We can bring new and innovative ideas, new perspectives. So I feel like invoking affirmative action and invoking special hiring initiatives to recruit people with disabilities is needed at a corporate level.
CHERAINE: There's an important distinction that you made in a quote from a Huffington Post article. You said, ‘I wish my non-disabled friends knew the hardest part about being disabled isn't my disability itself. It's the way society treats you because of it that's most challenging.’ Can you talk to me a little more about what you meant by that?
Ola: I feel like if the world was more accessible to people with disabilities more inclusive, we wouldn't have such high numbers of discrimination. I feel like I live in two different worlds. I'm a wheelchair user, but I can walk some short distance. I am a wheelchair user, because my walking radius is one block and then I start getting tired because of my heart transplant, and other underlying issues. So I get to navigate two worlds where people see me as able-bodied when I'm not using my wheelchair and when I am using my wheelchair, they see me as disabled. Getting used to people consistently staring at me, wherever I go, when I'm in my wheelchair. People look at me and I'm just like, ‘What are you staring at? You’ve never seen a person with a disability before?’ And, and nine times out of 10 they haven’t. So dealing with the stares, dealing with inaccessible buildings, dealing with employers that think that you're not as capable as other able-bodied employees, that’s the hardest part about being disabled. It's the way that you treat me. I’m fine with my disability. I've accepted it. There's an entire Disability Pride movement, we have Disability Pride marches. Disability is nothing to be ashamed of. It's an identity that I'm proud of. I'm proud to be disabled, because I've gone through hell and seen things most people haven't seen and overcome things most haven't overcome. So I'm proud to be disabled. And people don't understand that people go ‘What's there to be proud of?’ And I'm like, 'There's a whole lot.’
CHERAINE: Tell me about when you discovered the Disability Pride movement and how that changed your life.
OLA: I actually got an internship with the American Association for People with Disabilities, and during the orientation, they actually taught us disability history. Most of what I knew about disability history was a one paragraph excerpt from my U.S. history book in the 11th grade. That's the extent. I didn't know about the Judy Heumanns or all the other disability rights icons like Kitty Cone. I didn't know that there were movements that disabled people would chain themselves to buses in order to get accessible buses. I didn't know that that there were die-ins that people with disabilities staged to advocate for healthcare. I didn't know my history. And when they taught us that the history of people with disabilities, the protests, the 504 sit-ins, when they taught us this I was like, ‘I have a community.’ And the American Association for People with Disabilities internship program, it houses you with other disabled people. So I had a community of people with disabilities, I finally wasn't in just a community of me. So having more friends with disabilities and knowing that I wasn't alone is how I discovered the Disability Pride movement. It was taught to me by an organization centered on disability rights and disability advancement.
CHERAINE: If you're just joining us, this is Take Note on WPSU. I'm Cheraine Stanford, our guest is Ola Ojewumi, patient advocate, author and disability rights advocate. You wrote in an article that ‘although it's not always easy, I've learned there's an unmatched beauty to being a disabled Black woman’. Can you describe that beauty for us?
OLA: Disabled Black women just have it all together, we are the definition of disabled Black girl magic. That's what I like to call it because we deal with the intersections — intersectionality of race, gender, and disability, and it affords us a unique life experience. When I see other Black women with disabilities walking in their power, owning their truth, owning their strength, it influences me and impacts me. There's a beauty in being disabled and there's a beauty in being Black and combining that you just get an entire beautiful portrait.
CHERAINE: Tell me about the organizations you started and why you chose to start those when you were in school.
OLA: I chose to start my nonprofits because I felt like there was a need for scholarships for people with disabilities. I was struggling when I was in school. I didn't get much financial aid, but I got a lot of scholarships, and I used the excess — they give you a refund check — I used my refund check to start my nonprofit. And we support everything from education programs, to scholarships, to youth mentoring programs. I just wanted to leave my imprint on the world in some way and help other students with disabilities who face financial difficulties paying for school. Currently, the amount of men and women with disabilities in college hovers at 19-20 percent. That is entirely too low. And I feel like education is the great equalizer, and if my nonprofit can give even $1,000 scholarship, to someone it makes a difference because students with disabilities are often choosing between paying for a textbook or paying for their medication. I've been there, I've had to stretch a dollar, I've had to struggle to get my education, and I don't want students with disabilities to continue to have to struggle. That's why I created my nonprofit — and specifically Sacred Hearts with the teddy bears and books and gifts for kids. When I was a kid in the hospital, I remember receiving teddy bears and stuffed animals. And they reminded me that I was still a kid, even though I was going through these adult, very adult issues, things adults don't even go through. I mean, the age range for people who get organ transplants aren't teenagers or pre-teens like I was, they are people who are in their senior years. They're people who are later in life. So I wanted to give kids the gift of childhood, the gift of their childhoods back and a reminder that they're still kids, even though they're dealing with adult situations.
CHERAINE: So why should someone who is non-disabled care about these issues?
OLA: Because you'll eventually become us. If you plan on living to old age, you will become disabled. Naturally the human body ages and you experience disability. If my rights aren’t important to you, they should be important to you because someone you care about someone you know, you at least know one disabled person. You should care because this will eventually affect you and your life. And not caring or being apathetic toward disability rights is a form of injustice that you're doing to yourself.
CHERAINE: What's something that people can do to be advocates, to be allies right now for people with disabilities?
OLA: Advocate for inclusive spaces. If you see that there are areas in facilities that are inaccessible, talk to building managers, talk to your campus superintendents. Also, you can support disabled creatives and disability rights organizations through monetary donations or through amplifying their voices and sharing their work.
CHERAINE: What are some changes that you would like to see to the education system?
OLA: I would like to see more recruitment of people with disabilities so we can increase the numbers of people with disabilities in college and in graduate school. I feel like it starts in the public education system, I feel like disabled students aren't given a fair shake and aren't told that they can go to college or that they can be someone that can make an impact on this world. So I feel like colleges need to make greater efforts to recruit students with disabilities. And when they get there, accommodate them so students don't have to fight for accommodations.
CHERAINE: How do you mentor people and why is that important to you?
OLA: Well, my mentees are all people that I've interacted with through different disability rights organizations. I mentor a young woman who I met on paratransit — paratransit is disability transit. And I helped her get into college and helped her financially through college, helped assist in buying her laptop, helped assist in buying her books. I mentor by showing students with disabilities that they can make an impact. I show it through my nonprofits, and I show it through one-on-one counseling. Being a listening ear is what I am. I listen, I help advise and I help financially.
CHERAINE: What's Ola’s Truth Boutique? And why did you start that?
OLA: Oh my God, I wanted to have a Disability Pride apparel store so people with disabilities could change their perspectives about disability instead of feeling like it's something that you need to be ashamed of and that you need to hide. I have a Back Disabled Matters t-shirt that we're selling at the store, and it's because 50 percent of people killed by the police are people with disabilities. So there's a statement in our clothing that says I'm here, I'm disabled, I'm proud, I want to make a difference and I want to stop the unjust murders of people with disabilities and people of color. We also have a disabled and sexy period shirt, so disabled women can own their sexy and own their beauty, and know that a wheelchair or crutches doesn't make you ugly. You are beautiful inside and out with your disability or without it.
CHERAINE: You sit at the intersection of several identities. So you mentioned the Black Lives Matter movement, and yeah, there's research that indicates at least like you said 30-50 percent of police killings are of people with disabilities. Do you think that you have a unique perspective on some of these larger societal issues because of your intersecting identities?
OLA: Yeah, I feel like I have a greater perspective. I was recently asked by an editor ‘How is the disabled experience like the Black experience?’ And you cannot compare the two because they are two different experiences. The Black disabled experience is that of subjugation, of disenfranchisement. We face things on a larger scale level. How many polling places are accessible to people with disabilities? How is transit accessible for people with disabilities to vote and be a part of the political process? All of this, the root causes are ableism and racism. So relying on these intersections to see the intersectional experience of people of color with disabilities offers you a different worldview, because the racism is amplified. So the Black disabled experience is viewing racism and ableism as intertwined and being on these intersections allows me to see the world for how unequal and unjust it truly is.
CHERAINE: Can you define ableism for our audience?
OLA: Ableism is the discrimination against people with disabilities.
CHERAINE: How do you see ableism in your day-to-day life?
OLA: In my everyday life, I face it with transportation. Uber actually has a wheelchair accessible vehicle fleet, it takes 20 minutes to an hour to get an Uber for a person with a disability. It takes two minutes for a non disabled person. So that's a form of ableism. I rely on public transportation and sometimes ramps don't work on buses. And I'll take it back to education — school segregation, where people with disabilities are segregated from the general population of people without disabilities in school, is a is a form of segregation. If you've never taken a class with a person with a disability, that is an example of ableism because we are not given equal opportunities. Even being paid less in your job because of your disability. I experienced discrimination at work. When I requested 100 percent telework, my work launched a medical inquiry against me instead of granting me to 100 percent telework during a pandemic. So I've experienced it in the employment sector in transportation and in education.
CHERAINE: There's another quote that I want to read that you wrote for NBC News during Black History Month. You wrote, ’In a sense, to be Black and disabled in America is to be invisible. When you look At Black history, there's an undeniable link to disability. Some of our greatest heroes and heroines have been disabled.’ Tell me about the invisible part that you described. What do you mean by that?
OLA: Do you see Black people with disabilities on television — news, media, movies? Do you see them in your everyday life? Black people with disabilities we’re relegated to our homes and isolated and experiencing poverty at higher rates. Black people are more likely to identify as disabled than their white counterparts but the disability rights movement has been so whitewashed and has been represented by white people in the interests of white disabled people. So the erasure continues.
CHERAINE: Tell us about the hashtag disabled Black history campaign that you did on social media during Black Hhstory Month.
OLA: Oh, this was so, so much fun. Every day I posted at random facts about a disabled Black history maker, and there are disabled Black history makers walking among us that have hidden disabilities. I even did a Hip-Hip edition highlighting rappers with disabilities, like DMX dealt with severe asthma and bipolar disorder, Salt from Salt-N-Pepa dealt with bulimia. Now these things aren't traditionally considered disabilities by the general population and we need to expand the definition of disability to be inclusive of people like Halle Berry. Halle Berry has 80 percent hearing loss in one ear due to domestic violence. That's a disability. Harry Belafonte has dyslexia. Octavia Spencer has dyslexia. Whoopi Goldberg has endometriosis and dyslexia. There are so many black change makers who have disabilities, who go unseen and unheard. And we feel invisible and erased, because we're forced to hide our disabilities, to assimilate into society. Black people with disabilities are encouraged to hide their disabilities because we are already Black, we already have one strike against us. Why add to the subjugation?
CHERAINE: What's a final thought you'd like to leave with our audience from your story and from our discussion?
OLA: A lot of people, able-bodied people, feel like disability will never happen to them — that it's a consequence of something you've done wrong. That I'll never be in a wheelchair, I'm a good person and that'll never happen to me. Well, I'm living proof that it does happen. And disability can happen at any point in time in your life, and you should care because our struggle is your struggle.
CHERAINE: Ola, thank you so much for talking with us today.
OLA: This was an amazing interview. Thank you so much for having me.
CHERAINE: I've been talking with award-winning activist, patient advocate, author, and public speaker Ola Ojewumi. Hear more Take Note interviews on our website at wpsu.org/takenote, I'm Cheraine Stanford WPSU.