Hillary Clinton's fight for disability rights is a fight for me too
When Hillary Clinton took to the stage Thursday night to accept the Democratic nomination, I expected her to represent me and my daughters as women. What I didn't expect was for her to repeatedly and emphatically represent our interests as Americans with a disability.
As a woman with a disability, I am used to being sidelined. The best interests of the disabled are rarely represented in Washington, DC, and disability rights often barely register on the policy radar. So far this election season, the only time Republicans seemed to remember people like me existed was when they suggested kicking us out of Obamacare to cut medical costs for the rest of the country.
Clinton has a different perspective. Instead of isolating and ostracizing the disabled, Clinton told the story of going door-to-door with the Children's Defense Fund in New Bedford, Massachusetts to raise money for children with disabilities to attend school. "Every kid with a disability has the right to go to school," Clinton said during her speech. "But how do you make an idea like that real? You do it step-by-step, year-by-year… sometimes even door-by-door."
I was diagnosed with mitochondrial disease at 34 years old. Mitochondrial disease is a genetic disorder without a treatment or a cure, and it has impacted every aspect of my life. Before I got my diagnosis, I was desperate to find a doctor who could make sense of my lifetime of disconnected systems. I thought finally getting a diagnosis would bring an end to my fight. Unfortunately, it was only the beginning.
The reality of being disabled in America is often bleak. Social Security Disability denies 77 percent of initial applications, and the wait time to argue a case in front of a judge ranges from seven to 25 months. Health-care costs continue to rise, and many necessary treatments and supplies aren't covered by medical insurance at all. Families are left shouldering the cost of wheelchair vans and medical formulas, and those who can't afford them are forced to do without.
I know the impact of these policies firsthand. My autistic daughter has state medical insurance. Unlike many of her peers with autism, she doesn't receive her therapies in our home after school. Because of her insurance, we are forced to travel as far as 30 miles away every day to access her therapies in a lower-cost clinic setting during school hours. At one point, her school threatened me with truancy charges if I continued to take her to autism therapies every day. I was forced to choose between the education she needed and the medical treatment she needed, and there was no right answer.
I've blamed myself for not being able to give my daughter what she needs many times. I attend IEP meetings and advocate for her as best as I can, but there's no end to the paperwork or the layers of red tape it entails. It's hard to remain optimistic when the road is always uphill, but Clinton's speech left me feeling energized and invigorated by her advocacy.
My daughter and I don't need anyone's pity. We aren't here for your consumption or "inspiration," and we aren't looking for a handout. What we and millions of other disabled Americans are fighting for is simple. We want the world to embrace us for exactly who and what we are—we want to celebrate our diversity, not diminish it. I believe Clinton when she says she will defend disability rights, and I thank her from the bottom of my heart for speaking out against Donald Trump's mockery of a reporter with a disability.
My daughter has never been made fun of for being different. She's never encountered anyone who has made her feel like her differences make her less than. While I know that such experiences are impossible to prevent, it's unconscionable that they should ever come from someone who wants to be our president.
My daughter and I have very different medical needs, but we share one thing in common; it is society, not the state of our health, that disables us. I believe Clinton understands that. She knows that what we need is an advocate, someone who will help us change "hearts and laws" along the way to building an America that is tolerant and inclusive of all Americans. She fights with us, not against us.
This woman with a disability is glad to have her on our side.
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