We Change, We Wait
We Change, We Wait
I wasn’t even 18 months old when the Americans with Disabilities Act passed. The daughter of able-bodied immigrant parents, I grew up in total ignorance of the Capitol Crawl, the tireless activism and lobbying that had brought the ADA into law, and the struggles faced by those who spent years encouraging and enforcing compliance after it passed. My grandparents and older family members all lived abroad – in India, Japan, Germany, and England. For more than a decade, the law had no direct effect on anyone in my family.
By the time I started college, my mobility seemed to be decreasing. I wasn’t able to keep up with my friends, who could easily follow an afternoon walking around the city with all-night dancing. I was used to being an outsider – the only brown girl in a group of white or East Asian friends – but I didn’t think of myself as “disabled.” The idea didn’t even enter my head until a year before I graduated.
Ten years ago, as a rising college senior in 2010, I landed a summer internship at a civil rights coalition in Washington D.C. along with six other college students. In our first week in the office, we were all asked to pick our interests from among a long list of issues the organization focused on – children and education, poverty and welfare, immigration, voting rights, etc. – so we could each be assigned to the projects that would interest us most. I had volunteered as a classroom tutor and Girl Scout troop assistant in high school, so I was eager to work on the children’s rights projects, but another intern grabbed it first, citing a college minor in education. I let her have it and looked over the list again frantically as my manager waited for my choice. How was I supposed to choose from such an intangible list? I didn’t know the first thing about voting rights or social security. I finally put my name down in the blank space next to “disability rights.” No projects in that space came up so I focused on other assignments and didn’t think about the list again until the summer was nearing its close.
The year of that internship happened to be the 20th anniversary of the Americans with Disabilities Act being signed into law, and there was a celebratory party being thrown at the EEOC (Equal Employment Opportunity Commission) headquarters. I saw the event on my company calendar, but as far as I could tell, no one from my division would be attending. I wasn’t asked to attend and I wasn’t even feeling very well that week, but some invisible force was pulling me in. I asked my manager if I should attend and she encouraged me to go. Before I knew what was happening, I was riding the metro toward the party.
I was 21, shy, and hated networking. I was so used to entering a room and being different from everyone else in one way or another: my age, my gender, my skin color. I stepped into the EEOC already eager to turn around and leave. After picking up my name tag from the registration table, I paced around a refreshment table, feeling totally out of place. No one there looked like me, and nothing was forcing me to stick around – nothing even forced me through the door to begin with – but something in the back of my mind told me to stay.
As I took my seat and listened to story after story from people of all backgrounds, abilities, and races – the lawyers who had crafted the language, the senators who had signed the act, the activists who had pushed the movement forward – I felt something changing inside me. I didn’t speak more than fifteen words to anyone in the two or three hours I stayed at the party, and no one made any particular effort to speak to me, but by the time I went back to school to start my senior year three weeks later, I knew what made me different from most of my peers was the pain and fatigue that I felt every day: I was disabled.
I’ve continued changing over the last ten years, beyond my adoption of an entirely new identity. I’ve become an activist, a writer, a career woman, a wife. I’ve stood up and lobbied for change, for equality, for just treatment of minorities and marginalized communities as a disabled woman of color. I’ve translated my own experiences into blog posts and essays, sharing my life with an audience I can only hope finds resonance in my words. I’ve found a professional path that allows me to help others and be a resource and earned certifications for my work. I’ve met a person who accepts and loves me as I am and planned a wedding that mixes our love of nature with our love of community. I’ve become a different person, nearly unrecognizable from who I was at 21.
The ADA, on the other hand, seems stuck in the past. Other than a handful of amendments and revisions, it hasn’t kept up with the changing needs of a more informed population, and still fails to address or alter some of its own major flaws.
In 2008, my second year of college, President George W. Bush signed a number of amendments to the original act into law. These amendments retained the ADA’s original definition of disability, but also clarified that the definition should not take anything into account that may temporarily mitigate the impairment, including mobility aids, low-vision devices, prosthetics, or reasonable accommodations. As a Human Resources specialist and a legal junkie, I know that ‘reasonable accommodations’ is a squishy term that can be hard to define. The official definition is a change that allows someone to perform the ‘essential duties’ of a job without creating ‘undue hardship’ for the employer, but a company or hiring manager can easily tell a candidate or new hire that any and all duties are considered ‘essential,’ or that providing any accommodation would create a hardship. The combination of this ambiguous definition coupled with massively undereducated managers means there are as many discrimination charges based on disability filed in the United States per year as those based on race – more than those based on age, religion, or national origin. According to the EEOC, 32.2% of all charges filed in 2018 were related to disability – third only to retaliation and sex-based charges. This, of course, doesn’t factor in the countless cases that aren’t filed or reported, either because they are settled privately, because many people don’t realize what rights they have, or because, though the law is technically on their side, disabled people are put in the position of choosing whether the possibility of losing employment or income is worth fighting for their own legal rights.
Four years later, when I was still relatively new to the working world, I began using a wheelchair on days when my mobility was especially limited, or days when I knew I would otherwise be spending a lot of time standing. After I mentioned it at work, a white manager told me that I should try not to use it if I knew I would be at a client-facing event. Years later, I realized I should have questioned that request, fought back, or taken it to Human Resources, but at the time, I was twenty-three and didn’t realize that what they were asking was inappropriate and illegal. The ADA often only works when people with disabilities do their own research and fight their own battles, but for young minorities without a lot of experience, who have to deal with racial bias among other biases, losing a job is a risk that may not be worth the fight. In my case, a wheelchair would have been a totally reasonable accommodation I could have used to make my job easier, and that manager should have received mandatory training from the company on what they could or couldn’t ask a disabled employee to do – it shouldn’t have been up to me to explain the law. As of now, the only legally-mandated training managers receive are harassment prevention, which only briefly touches on disability rights, but does not necessarily spell out the law. This is a change long overdue.
A 2010 revision to the ADA updated the Standard for Accessible Design, which affects newly designed and constructed or altered public buildings. Despite this, many new constructions are still coming up with areas that are entirely inaccessible such as a recent multi-million public library in New York City. Technicalities and loopholes exist, but this often comes down to an enforcement issue. At the same time, older buildings seem untouchable – historians and purists argue that original design must be preserved, and that there is no way to add accessibility without tarnishing the look and feel.
Before starting college, I took a trip to Spain to take in the gorgeous architecture and was pleased to discover that I could access the towers of the historic Sagrada Familia by way of a modern elevator. Construction began on this basilica in 1882 and it looks just as grand as always. There are always methods to increase access without compromising design by lowering elevations, adding ramps, or countless other ideas…if designers are made to listen. However, designers are not required to consult with ADA experts, which often results in inaccessible new structures opening their doors to the public without penalty.
The ADA seems all too glad to throw up its hands in defeat rather than educate and enforce – the ADA doesn’t even have an enforcing body at all; it’s an act that relies on the individual to complete checks and balances. In 2018, the ADA Education and Reform Act (H.R. 620), which officially shifted the burden of enforcement to people with disabilities, passed the House. This bill removed any incentive for buildings and businesses to comply with the ADA until someone with a disability proactively reported that they were unable to use or enter the facility. This burden should not fall on a marginalized community, many of whom do not have the resources to report claims, and have been ignored before. This is another change long overdue.
Another ADA revision in 2016 specified the obligation of public accommodations to provide appropriate auxiliary aids and services for people with disabilities – specifically movie theatres providing closed captioning and audio description when available. But how often does this really happen and who is keeping track of it? Everyone I know who is deaf and/or hard of hearing have reported that most theatres they go to do not offer this, haven’t heard of it, aren’t at all familiar with the law. Every worker should know that these accommodations must be offered and that should be up to education from managers and owners, mandated by the ADA, the same way some states require annual sexual harassment prevention training. The theatres that do offer these services – theatres that my friends go out of their way to visit – often have broken or faulty systems, rendering them useless. The unpredictable variability means that the law is not being upheld, and there are no specific mandates regarding minimum upkeep, number of audio description systems that should be available, or employee training. This is yet another change long overdue.
I’m not the same person as I was in 2010 – or 2000 or 1990. I’ve grown and learned. I’ve taken on new responsibilities. I’ve changed my opinions when presented with new or compelling data. I’ve acknowledged and addressed many of my flaws. I don’t believe I’ve reached my final form, and plan to keep adapting. I – and all disabled people – deserve an ADA that doesn’t put the onus on us to enforce compliance. We deserve an ADA that grows, learns, and adapts to better serve us, the portion of the population it was built to protect.
It’s been thirty years. Why is the ADA still stuck where it started?
Lia Seth (she/her) is a Human Resources specialist living in the San Francisco Bay Area Peninsula. She is a lifetime Girl Scout member, pub trivia host, and avid cross-stitch enthusiast. Her original writing has been used and featured by Pearson Education, the Gottman Institute, Practical Media Inc., Girl Scouts of Northern California, the Disability Visibility Project, AMI (Accessible Media Inc.) Radio, and local NPR radio stations. She has been diagnosed with sympathetic adrenergic overdrive and Ehlers-Danlos Syndrome, hypermobility type.
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