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Part 2: Double-Transplant Cancer Survivor Ola Ojewumi on How the Affordable Care Act Saved Her Life

Web ExclusiveMarch 03, 2017
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As President Trump calls on Congress to address the “imploding Obamacare disaster,” we speak with Ola Ojewumi, a disabled 26-year-old community activist who attended Trump’s speech this week as a guest of Maryland Rep. Steny Hoyer, as someone affected by the Affordable Care Act. She is a cancer survivor who has also had a kidney and heart transplant. This is Part 2 of our conversation.

Click here to watch Part 1: Disabled Cancer Survivor Ola Ojewumi Says She Is Terrified by Trump’s Push to End Obamacare

Read the related column by Amy Goodman and Denis Moynihan: A Double-Transplant Cancer Survivor Takes on Trump over Obamacare

Related Story

StoryMar 01, 2017Disabled Cancer Survivor Ola Ojewumi: I am Terrified by Trump’s Push to End Obamacare
This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: This is Democracy Now!, democracynow.org, The War and Peace Report. I’m Amy Goodman, with Part 2 of our conversation with Ola Ojewumi. On Tuesday night, she attended President Trump’s speech to a joint session of Congress as a guest of Maryland Congressmember Steny Hoyer. She was there as someone who’s been deeply affected by the Affordable Care Act. Ola Ojewumi is a community organizer and founder of Project ASCEND, which provides opportunities to low-income and disabled students.

Talk about how the Affordable Care Act has affected your life.

OLA OJEWUMI: It’s affected my life a great deal. When I was 11 years old, I received a heart and kidney transplant. And that means you are going to be on medication for the rest of your life, and you’re going to have lifetime treatment. And the Affordable Care Act allowed me to stay on my parents’ health insurance until I was 26. And I was diagnosed with a lymphoma, a post-transplant cancer, and I received treatment at Johns Hopkins Hospital last year. And as a result, I had access to my parents’ really wonderful health insurance, and I was able to receive treatment for that. And it’s all thanks to the Affordable Care Act and the work of President Obama and wonderful, wonderful members of Congress who advocated for that and championed for that.

AMY GOODMAN: So you’re saying you got cancer after the heart and kidney transplant.

OLA OJEWUMI: Yes, ma’am. And I am a wheelchair user, as well.

AMY GOODMAN: You also have spoken up around Planned Parenthood. Planned Parenthood has certainly become a target of the Republican majority, who have said, right up through, oh, now the new head of the Department of Health and Human Services, that they want to defund it. It’s one of the top things on their agenda.

OLA OJEWUMI: It’s unfortunate. Planned Parenthood here in Washington, D.C., Planned Parenthood Metro Washington, really taught me what leadership looks like, in the sense of advocacy for diversity and inclusion for women with disabilities in reproductive health. So their work—Planned Parenthood’s work in passing the ACA and the ACA having a free birth control option allowed for women with disabilities, like me, to receive free birth control. And we aren’t included in the discussion. Women with disabilities, we have the highest rates of sexual assault, and we are more likely to be raped or sexually assaulted than able-bodied women. And so, Planned Parenthood Metro Washington gave women like me a voice and taught me how to really protest and advocate on behalf of my group. And in addition, I’ve been working with them for five years in distributing condoms and contraceptives at events like the gay pride parade here in D.C. and just pushing the message of it’s more than just access to abortion. It’s access to cancer screenings. It’s access to mammograms. It’s access to things like birth control and contraceptives that disenfranchised and disadvantaged communities need and receive at lower costs at Planned Parenthood. And this is an issue because women aren’t highly represented in government, and our voices are not included, but our healthcare is regulated. And that’s the issue. And I’m hoping that a consensus or unity can be formed in understanding this is about women’s health, and our rights belong to us and should not be regulated by anyone but us.

AMY GOODMAN: Last night, on Tuesday night, at the joint session of Congress address, many of the congressmembers, congresswomen, wore white. Can you talk about the effect of that, you, yourself, sitting in the chamber?

OLA OJEWUMI: I was sitting in the chamber, and I had on my white jacket and a red dress. And I was proud to see women standing up for what’s right and standing in solidarity. It’s really remarkable how much power we have as women in understanding that our voices will be heard, even if we aren’t the majority. I received the opportunity to meet Leader Pelosi last night. I was invited by Congressman Hoyer. And being in her presence, it was like being in front of a history maker, the first woman, you know, Democratic leader of the House. And I’m proud to be a woman today, and I’m proud of the solidarity we have. And I’m proud of women on the Hill championing for our rights and championing for Planned Parenthood. They provide a voice for voiceless populations, including women of color—


OLA OJEWUMI: —and women with disabilities.

AMY GOODMAN: Women wearing white because of, well, sort of—they call it suffragist white, for women’s rights, women wearing white, fighting for the right to vote. I wanted to ask you about one of the points that President Trump made in his address. He had as one of his guests Megan Crowley, someone who suffered from Pompe disease, a rare illness. He used the example of her father trying to find a drug that would save her life as a pitch to reduce regulations at the FDA. As a transplant and cancer survivor, your thoughts about this?

OLA OJEWUMI: I could relate to her story. I have a rare disease, as well. I have mitochondrial disease, and which is why I’m a wheelchair user. But what the healthcare system and the Food and Drug—Food and Drug Administration and the production of pharmaceutical drugs, they do need regulation, because her story is a small segment of a larger problem, meaning it’s not just breakthroughs they’re talking about with regulation, it’s also protecting Americans from dangerous and harmful drugs. Further regulation helps American health and improves access to drugs, impactful drugs and very influential drugs in curing diseases. And not having regulation and not having further testing harms more people than it helps.

AMY GOODMAN: I wanted to ask you about the education secretary, about Betsy DeVos, to find out your response to this. During her confirmation hearing, Betsy DeVos caused some controversy when asked about the federal Individuals with Disabilities Education Act, or IDEA, I-D-E-A. When asked if all schools that receive federal funding, including private or public charter, should comply with the act, she said it should be a matter for the states. Can you respond to the now-education secretary?

OLA OJEWUMI: I was deeply disappointed in her comments, and it showed a lack of understanding about equal access to education for people with disabilities. The Americans with Disabilities Act was passed the year I was born, 1990. And years prior to that, there was—there were more oppressive laws that limited equal access and equal resources to students with disabilities. And what we need is not leaders in agencies saying that states should decide whether to offer the same education to an able-bodied student than that of a student with a disability. Students with disabilities face increased hardship, as well. There is a—there is a special-education-to-school pipeline. And to state that states should have an option whether to educate people with disabilities was disheartening. And I do believe that the Department of Education’s disabilities page did go down after she was sworn in as as secretary of education. And that’s an issue. I do see—I do see school choice as an issue, as well, with Betsy DeVos, because it tends to harm marginalized groups, meaning students of color, students with disabilities and those who come from poor neighborhoods. So it’s more than just her comments on the IDEA. The idea of a student choice being implemented furthers the achievement gap between white students, black students, and then even furthers that gap when public education funding is limited and reduced to invest in private education, to invest in charter schools. So, this is going to affect students like young people like me with disabilities. And I hope, as a young adult, I can bring a child into the world, and, whether they’re able-bodied or disabled, they receive the same access to education and have a representative that really believes in them and that really believes they deserve a space in the classroom and they deserve to be heard and treated with equality and not further bigotry.

AMY GOODMAN: While on the campaign trail in South Carolina in 2015, Donald Trump famously mocked a reporter with disabilities. Let’s go to that clip.

DONALD TRUMP: Written by a nice reporter. Now, the poor guy—you got to see this guy. “Oh, I don’t know what I said. Uh, I don’t remember!” He’s going like, “I don’t remember! Ah, oh, maybe that’s what I said.” This is 14 years ago. He’s still—they didn’t do a retraction.

AMY GOODMAN: That was Donald Trump. And for those who are just listening, he was waving his hands, sort of they were flailing about spasmodically. And what we know about who he was mocking was a reporter at The New York Times. The reporter he was talking about is Serge Kovaleski. He suffers from a congenital condition that impairs the movement of his joints. Following criticism of his apparent mockery, Trump said he’d never met Kovaleski, but the reporter said he’d spent a lot of time with Trump while working at the New York Daily News and covering Trump’s 1989 launch of an airline. Ola, your thoughts and what that meant to you? There were commercials during the campaign specifically about this.

OLA OJEWUMI: I was deeply saddened and insulted, like much of the disabled community. What he did on that stage in mocking a disabled reporter really was a throwback to a lot of people with disabilities’ childhood, where we were mocked for walking funny, walking different or not being able to to keep up or, you know, having deformities. And as a result of our disabilities, we look different. And that’s the behavior you would not expect from the leader of the free world. And in addition, it’s more than just about mocking people with disabilities. It’s also about the Trump Organization being sued for violations of the Americans with Disabilities Act. How do disabled American voters and disabled Americans in general feel included, when the president has a history of violating one of the landmark laws that gave us things like access to reasonable accommodation, access to things that previous, pre-ADA generation disabled adults fought for, for decades, and we finally have them? And to have a president that violates the ADA really troubles me.

And in his State of—in his joint address to Congress, he did mention unemployment. And one thing I found fascinating is that the disabled community has the highest unemployment rate. So, the Americans with Disabilities Act was signed in 1990, and the employment rate for people with disabilities who can work was at 70 percent. And here we are 27 years later, and that employment rate is still 70 percent. So, has the administration put out a plan to address barriers to employment for people with disabilities, i.e. employment discrimination. And it’s hard to get a job when you lack means to equal education. There’s such a low percentage of students with disabilities attending college and an even lower percentage of people hired into the workforce in fields that, you know, require skills other than to be able to clean a bathroom or to be in janitorial services. That’s not an issue. There’s nothing wrong with working in those fields. But that’s the only fields of employment that seem to have provided opportunities for people with disabilities. And legally—you can look on the Department of Labor’s website. It is legal to pay disabled employees subminimum wage, meaning there’s a minimum wage and then employers are allowed to pay people with disabilities lower than that. And that’s one of the biggest injustices that disabled Americans experience. So where is the administration’s plan on finding employment or helping us find employment and addressing this through public policy? Because we are consistently left out of the conversation, and we have one of the highest unemployment rates of any group.

AMY GOODMAN: Is there anything else you want to add about President Trump’s speech—his choice of language, the issues he’s addressed, the issues that are most important to you, Ola?

OLA OJEWUMI: The issues that are most important to me is public education. I run a small nonprofit, Project ASCEND. And I started it as a 20-year-old, 19-year-old, in my dorm room with a $500 refund check. And we provide college scholarships to girls of color, students with disabilities and low-income youth. And our Scholars Program hails college students, disabled college students, from Cornell University all the way to George Mason down here in D.C. So, my focus last night was on the Affordable Care Act, but the plans for education and increasing—and increasing school choice, and then the announcement of the celebration of National School Choice Week. School choice is often cloaked as a civil rights matter, as in a way for brown and black kids to have the same opportunities as wealthy white children. And that masks, doesn’t represent the actuality of school choice and the voucher system and the charter school system and how it’s limited options for students. And in the charter school system, as opposed to public schools, there’s only a 17 percent difference between performance of students at charter schools and public schools. And school choice creates a business-like model for educators. It doesn’t support teachers’ unions. It treats—it treats student scores on standardized tests as a determinant of how teachers are treated. So, if the students’ scores are poor, the teacher is reprimanded. They’re not receiving protections in the union. And it’s also a means to fund—fund religious education and use a voucher system to provide funding and tuition assistance to those who want to attend religious schools. And there needs to be a separation of church and state. And instead of looking to repair the public education system as a whole, the government is seeking to invest in a privatized education that makes big business wealthy. And that’s problematic. The issue of education should not surround how much money you have to send your child to a private school, or wealth or poverty. Every student should be given an education, an equal education, and it must address the students’ needs in that area. So privatization and school choice is not the answer. What is the answer is further investment in public education.

AMY GOODMAN: I wanted to ask you about this most recent controversy around now-Education Secretary Betsy DeVos, who’s facing real backlash and ridicule after she claimed that historically black colleges and universities are an example of school choice, following a listening session at the White House Monday with the presidents and chancellors of these historically black colleges and universities, often known as HBCUs. In a statement, she wrote, quote, “HBCUs are real pioneers when it comes to school choice. They are living proof that when more options are provided to students, they are afforded greater access and greater quality,” unquote. Well, on Twitter, many ridiculed DeVos’s comments, saying they displayed a lack of historical context. HBCUs established because black students were prohibited from attending public colleges and universities throughout much of the United States’s history. One Twitter user wrote, “Betsy DeVos said HBCUs were about school choice. As if white/colored water fountains were about beverage options.” Another user joked it was as if DeVos had said, quote, “Rosa Parks is a real pioneer when it comes to seat choice,” unquote. So, I was wondering your thoughts on this, Ola.

OLA OJEWUMI: I was really troubled by that statement. And it does show a lack of understanding of the history of black education and education for black students. I attended an HBCU for my first year of college. I went to the wonderful Howard University. And the things HBCUs do for students, they’re amazing. But those institutions were created because black children, black young college students, were prohibited from entering white institutions. One of our greatest thinkers, W.E.B. Du Bois, received his doctorate at Harvard, and he was forced to sit outside of classes and hear the lecture from, you know, behind a closed door, because of segregation.

And that’s a lack of understanding, that seems—of black history, that seems to be rampant within the administration. For example, yesterday, I believe Kellyanne Conway called HBCUs ”HBDU.” And that’s an issue, as well, in addition to President Trump’s comments about Frederick Douglass and the perceived thought that Frederick Douglass was still alive. There was a lot of mention during the joint address to Congress about inner cities. “Inner cities” seem to be common—a common replacement for the term “African American” or “black,” and instead of tackling issues that—you know, infrastructure in black communities and low-income communities and urban areas, about, you know, the lack of jobs. These things influence gun rates. These things influence high crime rates and high murder rates, because of the lack of legitimate work available in those areas. So, with that being said, there’s just a way in which the administration is very out of touch with African Americans.

And it is troublesome that there wasn’t even an understanding of why HBCUs were created. I mean, there was a point in time where black children had to be escorted to schools by the National Guard for their own protection—for example, Ruby Bridges being escorted to the National Guard to desegregate a local elementary school in, I believe, Louisiana. And even on her first or second day of school, she was—someone attempted to poison her food. And the National Guard had to, you know, be the first to taste her food, before she ate it. And she was a 6-year-old little girl. And that’s the issue. There isn’t an understanding of the black experience. And it’s often—it’s been—it’s often been glanced over in U.S. history and not really addressed. So, DeVos’s statements are problematic, and they do trouble me about what she’s going to do for education, when there is such a large achievement gap between black and white students in the United States. And—

AMY GOODMAN: You also—you also have the Department of Education misspelling W.E.B. Du Bois’s name in a tweet Sunday honoring the iconic civil rights activist, author, educator W.E.B. Du Bois. It said, “Education must not simply teach work–it must teach life. — W.E.B. DeBois.” Sort of like DeVos, they spelled it, the tweet misspelling his name. This was a few weeks ago.

OLA OJEWUMI: Yes, it’s kind of a history of just being out of touch with Americans and black Americans, African Americans, whatever you want to call it. And I’m just hoping that things do change. I mean, I have faith that, you know, we can come together and unify to, you know, fight discrimination and bigotry. But there needs to be an understanding and more meetings about how to influence the public education system and break the achievement gap, end the school-to-prison pipeline. With the appointment of Jeff Sessions and his rolling back of President Obama’s Hallmark policies phasing out privatized prisons—statistically, privatized prisons don’t save the government or the state any more money. And it’s become an industry to imprison young people and young children. So, though meetings with HBCUs are wonderful, but there needs to be meetings about institutionalized racism and classism that prevents equal education for black youth.

AMY GOODMAN: Ola, we only—we have less than two minutes, but I just want to ask if you could directly address young activists. You have been through so much. You’ve been through a double organ transplant. You’ve conquered cancer. You are still so young. What gives you the strength and courage?

OLA OJEWUMI: I get strength from my community and seeing the problems in the world. I knew I was meant to do social justice when, in recent months, I’ve watched the news and literally been brought down to tears about the way America is headed and about the regression.

So, my message to young activists is: Continue to advocate. Draw inspiration from what you see. Don’t change the channel. Don’t ignore what’s going on in the world. Watch what makes you angry, so it can keep you fired up and keep you in the trenches fighting, because change does not just get done on the Hill. It gets done with your voices and your advocacy. So, continue to go to these town halls and speak out about the ACA and why we need it. Continue to speak out about anti-Semitism, anti-blackness, Islamophobia, all of that. And be sure to be inclusive of your movements. Particularly, 50 percent of police brutality victims are people with disabilities. Our rights and our images are not in the forefront, whether it be the sexual assault—sexual assault, anti-campus-rape movement or, you know, Black Lives Matter. They’ve done influential work, but we need representation, because people with disabilities, people in wheelchairs, our rights matter, too. And we need to be included in the discussion. So, make sure your movements are inclusive of everyone, from every background. And, you know, we can really change the world together.

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Disabled Cancer Survivor Ola Ojewumi: I am Terrified by Trump’s Push to End Obamacare

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