This guest post was written by UCP’s Manager of Institutional Giving, D’Arcee Neal.
While we here at UCP acknowledge and celebrate all of the great changes and opportunities that have been provided to people living with disabilities because of the passage of the ADA, we also want to acknowledge that there is much work left to do. This guest post is a reflection of that work.
25 years. It’s been 25 years since the Americans With Disabilities Act was signed into law by President George H.W. Bush. If the law was a child, she’d be in her second year of graduate school at this point, or maybe an intern in a DC law firm somewhere wondering where she’d go next. The point is, she’s supposed to be a grown fully realized adult holding her own working alongside all of the other veteran American laws that work for society these days as part of the American Dream Machine.
Supposed to be.
Those three words change the entire meaning of a statement and can completely invalidate anything else that comes before or after it. In this case, the ADA is more like an unwieldy teenager, certain yet unsure. Full of angst, moody and demanding but bursting with promise and potential, all while angling for a voice to be heard at the kids’ table during a family discussion and it’s been 25 years. We should be further along than we are.
I like to think back to what life might’ve been like before the Act was signed, when I was diagnosed at age 2 with spastic diaplegic cerebral palsy. My mom tells me the story often. At 18 months, I still hadn’t gotten up off the floor, content with crawling around happily oblivious to the fact that other babies were now discovering the joy of bipedal-like speed and the dangers of falling over and over and over again. That would happen in time, but never the regular way. When she took me to the doctor trying to figure out what was wrong with me and why I could never sit up straight, or why my legs continued to stay bent did see think about what my future would be?
I wonder what my parents thought about when they were sitting in the room at the doctor’s office. The idea that if I couldn’t walk, the possibility of holding any regular job might not happen. The idea that my dating life, any marriage possibilities, kids, and the picket fence were dangerously on the edge of nonexistence. Their family line might indeed end with them. And while none of that has proven to be true (except for the fact that I date men instead), the fear and the anxiety of how society might perceive me must have already start to creep into their minds. This was life pre-ADA. For parents whose children inexplicably develop disabilities when no one else in the family has any discernible ailments or concerns, this is a new chapter of a life they knew nothing of. Perhaps they knew about raising children. They knew about how it would be to raise a black child certainly, being black themselves in this new “post-racial” society of America. That they could handle. But disability? What does one even do with that?
Sure we had amazing heroes of our own. The Martin Luther King of disability, through Ed Roberts. Or the Angela Davis of advocacy in Judith Heumann. We had the Malcolm X’s of our world in Bob Kafka and even the hidden heroes in President Franklin Delano Roosevelt, all of whom have disabilities and whom are all rockstars. But my parents don’t know any of them. My family doesn’t know anything about them, and today their names (with the exception of FDR whom, for many years had information regarding his polio restricted from the public eye) are uttered with reverence only in certain circles. In 1986, the world was focused on exploding rocket ships, the new age of Republicanism and Madonna. Not to say disability never occupied a space in the minds of the average American, but I know from my parent’s viewpoint, it never did. And then suddenly with one diagnosis, there we were.
The United States should never be a country to underestimate the power of words on a piece of paper. After all, we are a country whose ideals are taken off a single sheet written hundreds of years ago by a bunch of dreamers who simply wanted another life. In many ways, the ADA is that ideal yet again, but for a completely different set of people who want a completely different life. And if one thinks of the Constitution, what if the Founding Fathers had simply sat back admiring their lavish pen strokes on that parchment? Their work done, the day finished, the scroll taken away to be locked in a vault as the world miraculously transformed at their whim? No. They simply put the fight to paper as a creed to the testament of the work yet to be done as war after war broke out and people fought and died for an idea some of them hadn’t even heard of.
But in 1776, there we were.
And like them, we as people with disabilities owe it to ourselves to take up the fight. The ADA was a Disability Constitution. An agreement between people with disabilities and people without that we are to be recognized, respected and regarded with all the rights and dignities of those who already take them for granted. Modern media might have you believe that we’ve come close to achieving this goal but the ridiculous unemployment rate, the equal housing arguments, the disability marriage equality rules under social security, and even social security itself all prove just the opposite. America believes mistakenly that it has done its job for the “underprivileged” in this country and while we’ve definitely gotten a good start, there is much left to be done.
I’d like to think my parents were shocked and overwhelmed when the diagnoses came. But somewhere between the lobby and the parking lot, a different decision was made. That they would teach me to independent, observant and affirming to the understanding that I am Black, Gay, Disabled, and a citizen of the United States. As such, I am entitled to the fight as much as Thomas Jefferson himself. My point is, people with disabilities? We’re fighters. And this is a war of understanding and acceptance. Friend, we’re just getting started.
And in 2015, here we are.