Though I’m only in my twenties, I’ve survived circumstances that would devastate most. At the tender age of nine, I was diagnosed with a rare heart condition. Less than two years later, I became the recipient of a heart and kidney transplant ― all before my twelfth birthday. You would think that this medical saga would end there, right? It hasn’t. At twenty-six-years old, I have become a cancer survivor and I’m now a wheelchair user.
I’ve survived a great deal which has motivated me to champion for the rights of people with disabilities. Like most people, becoming disabled wasn’t on my list of plans, but it’s one club you don’t have to be born into to join. If you’re lucky enough to live to old age, you will likely develop a disability. That’s why health care reform and disability rights should matter to all of us, because it could be you one day. If it wasn’t for the Affordable Care Act (ACA), I wouldn’t be here today. The ACA permitted me to stay on my father’s insurance until age twenty-six, and subsequently receive cancer treatment at Johns Hopkins.
Naturally, I was thrilled to hear that the effort to repeal the ACA failed. Prior to the ACA, I spent much of college frightened that I’d be kicked off my parent’s health care plan — the insurance company made several attempts to do so. Then the ACA was passed and my fears were put to rest. I was lucky enough to visit the White House and thank President Obama in person for saving my life through the ACA. After the election, I became terrified that the ACA would be repealed.
For me, the ACA goes beyond health care. This law improves more than individual health ― it expands opportunity.
The proposed ACA repeal legislation meant that millions would lose their health care. I felt hopeless, but not helpless. I still had faith in lawmakers to do the right thing to protect us. Congressman Steny Hoyer is one of those leaders. As my representative, he’s spent fifty years in public office fighting for the little guys like me. In January, we spoke at a “Save the ACA” rally at Bowie State University. He spoke about his decades long work to pass influential legislation like the Americans with Disabilities Act (ADA), and reminded attendees that disabled Americas would be harmed by a repeal.
I shared my experiences and the stories of my fellow women with disabilities that benefit from the ACA, Medicaid and services provided by Planned Parenthood Metro Washington. I was beyond nervous. My palms were sweating and my hands were trembling. Rep. Hoyer then reached out and helped me out of my wheelchair and to the podium to speak my truth. For me, the ACA goes beyond health care. This law improves more than individual health ― it expands opportunity. The ACA freed me from the constant worry of being kicked off my health insurance. As a result, I graduated from college and started a career of my own which is an obstacle in it of itself for the disabled.
According to research released by the GradNation campaign, “75 percent of students with a disability believe they will continue from high school to postsecondary school, while only about 60 percent of parents expected their disabled child to do so.” So, attending college is often just a dream for disabled students that rarely comes to fruition. Sadly, the disability unemployment rate is 10.7% as many of us struggle to enter the workforce. The ACA changed that because access to health care means a pathway to education and employment for the disabled.
Humbled by this opportunity to share my story, I stepped down from the stage feeling motivated. I thought it would be the last time I’d interact with Rep Hoyer. Luckily, I was wrong. He surprised me with a phone call inviting me to attend President Trump’s Joint Address to Congress as his guest. We talked about what my attendance symbolized. I, along with other attendees, represented the faces of America and the lives in the balance if health care reform was repealed. He met with me in his Capitol office, I was only expecting a handshake and perhaps a selfie, but he had something different mind.
We had a heart to heart about what lay on the horizon for disabled people under a Trump presidency. The outlook seemed grim but we remain optimistic because we could hear the loud roar of the American people championing for progression and not regression. Women and men joined together for numerous nationwide demonstrations. They demanded an end to threats to defund Planned Parenthood and took to town halls to remind Congress that they work for us the American people, and what’s in our best interest is affordable health care.
As we left to attend the President’s address, he told me about his fifty years in office and running for office in his twenties. He reminded me that even the youngest person can effect change. Politics has the power to fuel revolutions that can liberate even the most marginalized people. We went our separate ways as he sat on the House Floor and I was sat in the balcony gallery. I was joined by remarkable veterans who fought for their country only to return with crippling disabilities and Muslim-Americans impacted by the President’s discriminatory immigration ban.
The beauty of America is its diversity, which much of the President’s address seemed to focus on limiting. Trump’s words spoke to moving forward with initiatives that would further divide the United States by race, class, gender, religion and, quite frankly, limits to our freedom. After Trump closed his address, I left the Capitol in wheelchair paratransit and wept the entire 1 hour drive home. I was scared for the future of my country but inspired by Mr. Hoyer’s words reminding me that we cannot give up or give in.
He was right. The results speak for itself. Trump and proponents of the new health care bill failed in their attempt to repeal the ACA, but they have pledged to not give up in their attempts to repeal the health care law. All of this was thanks to the spirit of the American people that made their voices heard across the country. The wellbeing and humanity of our fellow citizens were protected. The resistance is not over and this will not be the last time we see the foundation of Capitol Hill for the greater good of the country.
We are America, the beautiful. The strong and the resistance.