The ADA Won't Stop Ableism, It's Up to Us
I am 25 and have been disabled my entire life, and will be disabled for the rest of my life. While I can take confident ownership of my identity as a disabled woman, I have yet to take pride in my disability. Pride is difficult to conjure when the stain of ableism colors the reflection I see in the mirror and corrupts the image of the woman I see when I turn my gaze inward.
Ableism, a social structure of oppression that elevates the “able-bodied and able-minded” over those with disabilities, including learning and thinking differences, thrives in the United States. Ableism thrives even as we recognize the 30th anniversary of the Americans with Disabilities Act (ADA).
Ableism, discrimination, and exclusion thrive because we as a society are largely ignorant of their existence. Ignorant of our own inherent biases and the extraordinary work left to be done in order to realize a truly accessible nation.
In fact, I, a woman born with spinal muscular atrophy and who has acquired additional less visible disabilities, was ignorant of the awesome and subtle power of ableism for most of my life.
The driver didn’t see me. She wasn’t looking for me, either.
Then, three years ago, I was struck by a car while crossing the street. In the crosswalk. With a stop sign. Even though I had done everything right, even though I waved to the driver, called out when she failed to stop, screamed when it became clear she would not stop, I was still struck and injured.
The driver didn’t see me. She wasn’t looking for me, either. In my wheelchair, I sat just below the convenience of her horizontal line of sight, outside of the norm, outside of the easy.
As I lay on the concrete, head ringing, eye quickly blackening, the driver who hit me stood over me and sobbed. And with a sharpness those who know me would recognize, I yelled up at her, “Stop crying. It isn’t helpful.” I needed help. I needed action and swift resolution. Not her tears.
Upon reflection, this accident serves as an excellent example of the passive violence of ableism. It illustrates the violence of complacency. To harm me that day, the driver had to do nothing at all — just keep her eyes level. And when forced to confront the ramifications of her inaction, all she could do was cry.
For 22 years, I kept my own eyes level — unable, or perhaps unwilling, to recognize the ways in which I had internalized ableism. I wasn’t aware of how it had affected my relationship with myself and with others, disabled and non-disabled, and with the world at large. That’s unacceptable.
Our collective ignorance — yours and mine — is partly due to the supremacy of the “medical model” of disability. A disability model is a lens through which we’re taught to think about and engage with perceived physical, mental, and emotional “abnormality.” This education happens through media, architecture and city planning, the education and health care systems, etc. And I was an excellent student.
We sometimes talked about disability. We never talked about ableism.
The medical model makes the able-bodied experience the norm. It promotes the construction of inaccessible, exclusionary structures, both literal and figurative. The medical model taught me that disabled people are to blame for their own inability to conform and participate in society. It taught me that I had to bear the burden of inclusion on my own already weakened shoulders.
I was not, however, aware that this was happening. In many ways, I’ve been lucky. I was, and am, loved and surrounded by parents, a sister, and an enormous extended family who supported me unconditionally. Teachers, mock trial coaches, and theater directors who believed in me and challenged me to excel. Together we focused on that which I could do, ignoring my rising anger at that which I could not.
We sometimes talked about disability. We never talked about ableism. Because we didn’t have the words. And so my own internalized ableism and the resulting anger, shame, and embarrassment directed at myself went unrecognized. Not for lack of love, but for lack of knowledge.
The hard truth is that ableism is rooted in a deep belief that people with disabilities are somehow less human and therefore deserving of less humanity. It is rooted in fear. If disabled people are fully included and widely visible, able-bodied and able-minded people would be too often reminded of their own physical and mental fragility. I know this fear because I’ve felt it in the eyes of people in the street — and because I’ve felt it bloom in my own heart. Ableism became part of me. It taught me to doubt my own humanity and distance myself from anyone and anything that might magnify my being less-than.
Because of that, I planted myself at the center of every stage I could find, before every panel of judges, audiences, teachers, and classmates, hoping they’d see only me, not my walker, wheelchair, or scooter. Acknowledge my ability, and ignore my disability.
It didn’t occur to me that instead of wishing judges would look away while my dad carried me up the stairs to the stage, I could wish instead that the theater would build a ramp. I didn’t yet know that there were other ways to understand my disability or myself. That came later, when as a young adult out in the world, I began to question the integrity of what I’d been taught by ableism. Without family, friends, or mentors to act as a buffer against discrimination, the anger I had ignored began to rise to the surface. But I didn’t understand why.
“You just seem really angry.”
A month or so before the accident, a friend visited me in D.C. Though I didn’t yet have the vocabulary to properly describe the crushing weight of ableism, I was trying to find the words. I was trying to understand my place in the world, to locate myself on a map and chart a course to somewhere better.
When I asked my friend to help with those cartographic calculations, she looked at me and said, “You just seem really angry.”
She was right. I was angry. I was furious. I am both.
Anger is the appropriate response to structures of oppression, to unrelenting attempts at dehumanization, and to our silent, tacit approval of ableism.
When I was struck in the crosswalk, I was thrown from my scooter. I landed face-first on the concrete and was severely concussed. This blow shook something loose, and the anger that had been building broke forth.
As a result of my injuries, depression, and PTSD, I was forced to take a leave of absence from work. During those painful, frustrating weeks, I began to make sense of my anger and recognize the extraordinary injustice of ableism, which places the work of inclusion on the shoulders of the disabled.
It is unjust to expect the disabled to celebrate the 30th anniversary of the ADA without also recognizing that there’s still so much work to be done.
To be sure, I’m a lucky member of the ADA generation — a generation of children who have come into adulthood shielded from the injustice of legal exclusion from public places and programs. But even with deep regard for the tremendous, hard-won legal advances, I have not been particularly impressed by a barely ADA-compliant America.
I refuse to be impressed by the bare minimum.
I refuse to be impressed by a society that outlaws discrimination and at the same time allows ableist exclusion.
I refuse to be impressed by complacency.
We must do better.
All people should have the opportunity to take pride in their disability. No one should think of themselves as less than fully human.
For that to happen, we must reject the medical model and adopt the social model of disability. The social model recognizes that disabled people are excluded not because they’re deficient, but because society has been designed for the narrow “normal.” We must recognize that it is our collective duty to deconstruct exclusionary systems and rebuild for all, rebuild for difference, rebuild for disability.
I used to believe that the weight of ableism was mine to bear alone. I no longer believe that. I know I can and should expect my family, friends, and coworkers to do the same work I have done and will continue to do. I expect them to turn their gaze, examine their role in perpetuating ableism, and take active steps to combat it. I expect them to share my anger. To fill the silent void of ableism with shouts and acts of dissent.
And maybe next July, we’ll really have something to celebrate.
Nora is a Program Manager with the Workplace Initiative by Understood and previously worked at the Department of the Navy assessing barriers to equal economic opportunity. She graduated from Georgetown University where she studied the intersection of disability, gender and citizenship.