My lifeless legs were the first to tell me “I can’t walk.” My in-hospital catheterization lessons were the first to tell me “I can’t pee.” The skin checks I learned I must do regularly to monitor for signs of breakdown were the first to tell me that having a paralyzed body takes careful maintenance. But it is the flight of stairs with no ramp in sight, the building with no elevator and the doctor’s office with no accessible exam table that remind me constantly, “Yes, Cody, you are disabled and living in a wheelchair.”
This is a problem. Since the Americans with Disabilities Act, or ADA, was enacted in 1990, it seems like people with disabilities are unaware of their rights or have become complacent; that fighting spirit for equality has diminished. But only those of us with disabilities have the authority to make a difference where needed by filing a formal complaint in federal courts, asking for better.
[See: 10 Questions Doctors Wish Their Patients Would Ask.]
I get it though, it’s easier to call a relative to vent about the inability to access the second floor of a restaurant or desired building than it is to write an official complaint. In my mind, people with disabilities seem to believe that the fight is over, since a law was passed to protect our rights. If we are greeted by a flight of stairs in a building with no elevator, we just shrug it off as if there were a justifiable reason why the ADA could not be enforced there. We speak of the disability rights movement in the past tense, thinking that a loud, collective voice is no longer needed for current and future generations.
The fight isn’t over. I can’t tell you how many times I’ve still been struck by the realization that I’m not able to experience certain aspects of the world that I know I have right to explore and be part of. But I also find myself consistently debating two key issues:
1. What do I expect from society’s built environment?
2. What can realistically be accomplished to better accommodate people with disabilities?
For example, is it realistic to expect to be able to independently roll up in my wheelchair and sit in any one of the more than 41,000 seats at Washington Nationals Park to enjoy a baseball game? When presented with a physical barrier, I have become quite good at taking a trip in my mind to a world in which those barriers don’t exist, picturing myself unencumbered by my wheelchair and my reality.
I’ve had a lot of time to perfect the art of crafting this imagined utopia. After all, I’ve been living with a paralyzed body for the last 17 years, due to transverse myelitis, a neurological disorder that struck when I was 12 years old. My imagined world with perfect qualities has been constructing quite nicely. I don’t think I am alone in this creation practice, mentally designing what should be physically present but is undeniably missing. Should I and others have to fill in these blanks?
[See: How Social Workers Help Your Health.]
I’ll share a recent, painful example in which I felt that my being in a wheelchair hindered my participation in what should have been a fun night out in our nation’s capital with friends.
We decided to go to a popular bar and restaurant. Upon entering, I was greeted by a long, steep flight of stairs leading to where the pumping music and lively crowd seemed to be. After greeting the bouncer, I asked him where the elevator was. He apologized, but said there was no elevator. So my friend went to lift me out of my chair, intending to carry me up the stairs, as we’ve done many times before. Immediately, the bouncer jumped in and said he couldn’t allow us to do that. Then the manager came over. I explained that since there was no elevator, my friend would like to carry me up the stairs to enjoy the atmosphere above. She said it was a liability for anyone to carry me up the stairs, but that she was willing to seat my party downstairs at a table. That wasn’t the point. Saddened, I noted that the inebriated women teetering up and down the stairs in sky-high heels seemed to be more of a liability for the restaurant than I was. I declined her offer.
Outside, I called my mom in tears. What bothered me most? How easily dismissed I felt; how frustrated I was at the physical barriers that still exist today; how angry I was, knowing the impact an instance like this can have on people with disabilities who finally muster up the courage to go out and participate in life, only to be rejected and further isolated.
My friends and I ultimately went next door to a different place, where this time a bouncer himself carried me up the stairs without any hesitation. But once again, that’s not the point.
For those of us living with a disability, mental and emotional preparedness constantly goes into any outing. It’s common for us to be gripped by anxiety when discussing plans with friends and family, as we steel ourselves for the inevitable accessibility issues while also battling guilt over not wanting to hold others back. No matter how much I prepare to participate in a full life, I know there are unexpected hurdles that will try to discourage my presence and involvement.
[See: HIPAA: Protecting Your Health Information.]
Bottom line: Those of us who have a disability want to live rich, productive lives without any pause. Now, I understand that the world wasn’t built for those like me from the beginning, and that we as a society have had to reinvent the concrete environment. But I also know that it’s not me who needs fixing; it’s the world that needs to become more adaptable.
October is National Disability Employment Awareness Month. As it comes to a close, my hope is that our collective attentiveness to these issues persists year-round, with corporations, legislators and people like me proactively working to create solutions for an even more accessible society. Accessibility shouldn’t be an afterthought but the seamless norm.
Make no mistake. We have come very far since the ADA’s enactment. I’m so thankful that employers can’t discriminate against me and others based on our disabilities. I am grateful for the incredible number of curb ramps that now exist, allowing me to safely and smoothly cross the street in my wheelchair.
But sometimes I’m painfully reminded that I’m just a woman in a wheelchair, trying to get inside a restaurant with my friends to see the best DJ in town. Who’s playing on the second floor. And there’s no elevator.
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The Party Is on the Second Floor, So Where Is the Elevator? originally appeared on usnews.com
