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But the fight for fully realized disability rights continues today, from having to overcome unique obstacles in the pandemic to only just securing equal pay at this year’s Paralympics.
Ahead of the anniversary of the ADA, we asked three women to write about moving through the world as a disabled person: the challenges, triumphs, everyday realities. Conchita Hernández Legorreta, a doctoral candidate in D.C., wrote about navigating America as a disabled immigrant. Ruth Kogen Goodwin, a writer and editor in Southern California, traced the impact of making her disability more visible to herself and others. And Robin Wilson-Beattie, a disability and sexual and reproductive health educator and writer living in the San Francisco Bay area, explored her intersectional identities as a Black disabled woman.
Read their full essays below.
Conchita Hernández Legorreta
As we approach the anniversary of the Americans With Disabilities Act, I’m reflecting on how ironic the whole ADA title is for me. As a disabled immigrant, I have not always considered myself American, nor disabled. I immigrated to the United States with my family from Mexico one year after the passage of the ADA.
Like many immigrants before and after us, my family sought a better way of life, and like many others, our story centered on disability. My older brother and I are blind and would not have access to opportunities in Mexico, so my parents made the difficult and life-altering decision to overstay our visas in the United States. Being undocumented, living under the very real fear of deportation meant something different to my family: It implied going back to a place where we would not get the support that we needed in all aspects of our lives. My parents did not know that the opportunities we had in the United States were because of the ADA, but they knew what they experienced in Mexico. Families hid disabled children from the public eye. Given there were limited opportunities for employment and self-sufficiency, they would designate a lifelong caretaker for disabled family members; people would openly state, “Ay pobrecito.”
Although I had more opportunities in the United States, I was also deeply affected by harmful educational practices. The first memory I have of school here was being put into a kindergarten classroom where I could neither speak the language nor see what was happening. I have a very long traditional Catholic Mexican name, which holds family history and meaning and connects me to my grandmother in a very special way. Yet, much to my disbelief, my teacher decided that instead, she would call me Connie, a name I did not recognize nor identify with. I was unable to express to her that it was not my name because I did not speak English. Nor did I know that it was written on my desk, as I could not see or read it.
This was the first of many times in which both my ethnic and cultural identities, along with my disabled identity, were negated. I was subliminally taught that my culture, my identity, my disability and my whole self were not welcome and celebrated at school.
As an adult, I struggled with the idea of being disabled because I had not met disabled individuals who were out living their lives, and the ones I did know had no cultural connection to me. They would not understand a carne asada and how to make it non-visually, or why dancing at a club was so important and I needed mobility lessons there, or why I didn’t want to disconnect and dispose of my family, community and culture, even if they sometimes were the perpetrators of ableism toward me.
When I finally met blind role models who had similar backgrounds, it changed my life. The first person who put a cane in my hand was a Black man named Darian, who understood what it meant to have cultural stigma around disability. The first person who taught me Braille was Sahar, a blind Palestinian woman with whom I would compare language similarities between Spanish and Arabic.
I finally took pride in the fact that I was disabled.
Now, I reject the notion that I need a cure for my disability, I reject the notion that I need to be ridiculously patriotic to be American, and I reject the notion that I should keep quiet in disability spaces because I should be thankful for the bare minimum.
I am disabled and proud, and I am American — to quote the great James Baldwin, “I love America more than any other country in the world and, exactly for this reason, I insist on the right to criticize her perpetually.” I also indeed love the disability community, and thus insist on the same right. The disability community is not immune to being impacted by social, historical and structural issues that the rest of the country is dealing with. Yes, blind people can be racist; yes, there were and are many barriers for people of color with disabilities to be visible and hold positions of power within disability spaces. Many of us push for change and will continue to do so.
My hope on this anniversary of the ADA is for every disabled child, especially children of color, to know that they are perfect, that they are whole, that they belong, that they are powerful, and that true social change cannot happen without them.
Ruth Kogen Goodwin
Last year, 30 years to the day the ADA was signed, and exactly one week after my 38th birthday, I opened my front door to a large, nondescript, brown box. After some moments peeling back cardboard and Styrofoam, I held my new walker — a device that promised simultaneously to give me new freedoms and, for the first time, to publicly identify me as disabled.
I have a condition called Postural Orthostatic Tachycardia Syndrome (POTS), a type of dysautonomia. When I stand too long, I can collapse or even faint. POTS is a serious disorder with significant consequences. But before I began to use my walker, if I chose not to reveal that I had it (and unless I fainted), no one would have known. I had the privilege to keep my disabled status to myself, disclosing it only when I felt comfortable.
But it took me years to feel comfortable, partly because traditional depictions of disability made me uncertain that I actually qualified. Disability is often seen as binary: either you are disabled or you are not. But human abilities and conditions are not so simple. Like mine, some disabilities ebb and flow. For me, though POTS causes very real — and at times quite substantial — impairments, I do often appear “able” to those around me.
And yet, those appearances can be deceiving. One morning last year, I found myself sweating, shaking and trying not to faint in public as I waited in a short line to enter a medical office for routine diagnostic testing. I had no choice but to sit in place, cross-legged on the filthy linoleum floor.
When I told my doctor about the incident, he recommended a special walker with a seat to use for balance and stability, and to provide a portable place to sit. It was a fairly simple and obvious solution, but I worried about its consequences. What would people say? Would people accuse me of faking? I was so worried about the societal consequences of having a visible disability that I was actually preventing myself from using the tools I needed to live my life.
Opening that brown box last year, I believed I was unwrapping something that would help increase my level of activity and reduce the effect of my physical symptoms. What I did not expect is that it would change my own mind-set. My walker has made my disability concrete, not just to others, but to myself. Ridding my mind of concerns about the legitimacy of my disability left room to uncover and reconsider my preconceived notions about what being disabled really meant.
My disability is legitimate, whether others are always aware of it or not. This realization has allowed me to begin to understand and accept my limitations as they are. Using a walker has helped me achieve confidence in both my body and my identity.
I feel worthy and strong, just the way I am.
Robin Wilson-Beattie
Being a Black, disabled woman is a daily exercise in continuously defying the expectations of others — an emotionally exhausting feat.
My race, gender and physical disability are visible, which means constantly fighting against the standards and script the world expects you to follow. My existence is literally resistance, so I live that life. When multiple parts of your physical self and social status are seen negatively, there is a constant pressure to be exceptional at whatever you choose to do. Wanting our voices to be heard and presence included, we feel compelled to consistently prove our worth and value in the community.
I recently read a tweet by Keah Brown, a fellow Black and disabled woman who is the author of “The Pretty One.” “I feel like I’m too much for people and I hate it,” she wrote. “I know it’s not true but my brain is like ‘everyone finds you annoying. Stop talking to them. Give them space.’”
The sentiment immediately resonated with me, producing a lightbulb moment of sudden realization.
I replied, “Oof-same. It’s a form of tone policing yourself, feelings of guilt, mixed with shame. The brain protectively thinks this-as Black disabled women, we don’t have a right to take up space, because that’s what society tells us, and socially enforces.”
This exchange led to recognition of the internal trauma Black disabled women experience. Our presence is overlooked and ignored in mainstream media, television, movies, etc. — it’s as if we don’t exist in the world. Underrepresented in leadership, we are left out of decision-making. Living in this perpetual state of “resistance for existence” wreaks havoc on our psyche.
We also learn early that because of racism, success in school and work entails working twice as hard as White people — society does not consider our capabilities or capacity to achieve. Black disabled women learn that to be included in anything, we are expected to let others lead and follow their decisions. However, my nature (and voice) rejects this convention, because I believe in the validity of my existence and views.
For me, challenging others’ opinions and views has literally been a life-or-death decision. In 2004, unprecedented surgeries were scheduled to halt an aneurysm erupting inside of my spinal cord. A week before the operations, I got a positive pregnancy test. Strongly advised to terminate it by the medical team, I advocated (with allyship and borrowed privilege from a White husband) to remain pregnant. It was as traumatic and dramatic as it sounds, and resulted in acquiring a spinal cord injury and a baby (who’s now a teen!).
My first night at the SCI rehab center, an older White doctor came by my bed on his rounds. With a disgusted look, gesturing to my post-surgery and 10-week pregnant body, he said, “If you knew you were going to be like this, why didn’t you use birth control or something?” This unforgettable and egregious dismissal of my autonomy and humanity was the first of the many times people felt entitled to give unsolicited and bigoted opinions on my disabled sex life and reproductive choices.
However, the entire experience became the catalyst that empowered me to use my identities to change this narrative and help others. Through finding the disability advocacy community, education and making genuine connections, I’m now a professional disability and sexual and reproductive health educator and writer.
While the ADA is the legal framework designed to protect the rights and liberty of disabled people, our culture has a long way to go. Recognizing and acknowledging that inclusion trauma for Black disabled women exists is the first step toward healing these wounds. Hearing, seeing, involving and supporting us as whole and valid people in our communities is how society can help change the narrative.
