For most of us, the disabled exist in the abstract. That might sound blunt, but it’s true. They are always someone else, somewhere else – a rickety old aunt, a friend’s child, or a warrior returned home from battle. Most people wish them well and offer to help if possible all while never begrudging them getting all the good parking spaces at the mall.
Long gone are the days when the disabled were shunned and locked away. No longer are they a source of shame for their families. Even so, we can’t help but be grateful that we’re not in that situation. All we really know about the disabled is that we’re not supposed to stare. We know the Americans with Disabilities Act, or ADA, is the law of the land and that it protects the disabled. We take comfort in knowing there are a host of both public and private benefit programs to meet most of their needs and that accessing them is relatively easy.
That’s what I believed, anyway. I didn’t really pay any attention to disabled people. It’s not that I had particular aversion to them, I just never gave them much thought.
Everything changed in 2009.
People had been telling me for weeks that I seemed tired and looked ill, but I paid them no mind. I had just moved to Washington, D.C., to work for U.S. Rep. Charlie Gonzalez. I had worked hard to get there and was ready to make my mark and change the world. I was a staff assistant, which is about as low on the Capitol Hill totem pole as you can get and still draw a salary.
I soon learned that in addition to just plain old hard work, success in D.C. is is all about influence and friendships. Not in the sinister, quid-pro-quo way portrayed on television, but in a more fraternal way. So when a friend from Texas invited me to an event at the White House, nothing was going to keep me from going.
The morning of the event, I felt like death and looked the part. In hindsight, I’m surprised the Secret Service didn’t throw a biohazard bag over me and toss me back out onto New York Avenue. But I was determined to go.
I had been invited to a departure ceremony, at which you stand outside the White House, just below the South Portico, and watch the president get onto his helicopter, Marine One. White House staffers are customarily permitted to invite friends and family, especially anyone who might be connected to the president’s trip. President Barack Obama was on his way to Texas, and so the receiving line was full of Texans hoping for the opportunity to meet him.
It was a hot day, so we were allowed to wait inside on the East Colonnade before being moved out onto the South Lawn. With almost mathematical precision, Marine One started warming up just as Obama emerged from the West Wing, waved to the crowd, and climbed into the aircraft. There would be no ropeline visit that day.
As Marine One faded into the distance, I realized the strength I had summoned to make it to the event was about to give way. My knees buckled and down I went. The group of assembled White House staffers and others parted like the Red Sea. As I lay there on the driveway, looking up at the White House, I remember thinking, So that’s where the Truman Balcony is!
Reality rushed back in, and I was quickly helped to my feet by members of the Secret Service. I don’t think my feet even touched the ground, as they quickly and kindly escorted me to the nearest exit.
It was there that my journey from the abstract to the reality of living with a disability began. I was diagnosed with neurofibromatosis, a rare, progressive, and incurable gene disorder that causes tiny tumors to grow throughout the body. In my case, the tumors cluster along the tiny nerve endings inside my upper spinal cord. These tumors disrupt signals from my brain to the rest of my body.
I saw the best doctors at the Mayo Clinic, MD Anderson, and UT Health San Antonio, and they all told me I needed surgery to remove these tumors. Not doing so could interrupt signals from my brain to regulate vital organs like the heart and lungs. Unfortunately, the side effects from the surgery robbed me of some of my motor functions and landed me in a wheelchair.
I felt as though I had woken up on another planet. There I was, this angry little man who did not fit in this new world – a world populated by kind, mostly well-meaning giants. There was no possible way to live in this new world without their help. Sometimes these giants would try to help and just make things worse. Marooned as I was in this new world, I struggled to accept that in order to survive and thrive, I had to realize that my independence was now shackled to these giants, benevolent as they might be.
If you’ll forgive the melodramatic allegory, I hope you’ll join me as I try to offer some perspective from this new world by highlighting what it’s like to navigate San Antonio from a wheelchair – from the challenging to the impossible, from the desolate to the hilarious.
In the coming weeks I hope to open a dialogue that goes beyond statistics on sidewalk improvements. Part of the conversation will be about how and why the ADA is not, and cannot be, the gold standard for constructing public spaces for the disabled. I would never assume to speak for anyone but myself. I invite people to look – indeed, to stare – as I share my experience navigating my strange new world.