Stephanie Hepburn is a writer in New Orleans. She is the editor in chief of #CrisisTalk. You can reach her at .
CW Tillman has a 1 ½ inch semicolon tattooed on his wrist. Unless he wears a long sleeve shirt, it’s visible. People who’ve had a suicide attempt know what the symbol means—an attempt can be a pause in a person’s story, but it’s not the end of the sentence. He says it sparks dialogue and solidarity.
Tillman, who has worked in mental health and disability rights, says mental health advocacy lags decades behind. He points to the hiddenness of psychiatric challenges as to why because it makes protests less visually impactful and precludes adequate protection under the ADA. To get to this part of the conversation, he says, it’s important to first look back at the civil rights disability movement and how the ADA came to be.
In 1988, roughly 40 people in wheelchairs went to the Hollywood Walk of Fame in Los Angeles, California, with hand tools. Protestors chiseled away at the sidewalk to illustrate they needed curb cuts (also known as ramps). “Without curb cuts, people in wheelchairs end up having to use the street, putting them at grave risk of injury or death,” says Tillman. One demonstrator, Dianne Piastro, told the Los Angeles Daily News, “No one gives you rights. You have to demand them.”
Protests like the one in Hollywood, notes Tillman, have long been the civil rights disability movement’s signature—an approach that has reaped great reward. After decades of demonstrations and lobbying, the Americans with Disabilities Act (ADA) was signed into law by President George H.W. Bush in 1990. It’s modeled after the 1964 Civil Rights Act to ensure equal treatment and access for people with disabilities. The ADA prohibits discrimination based on disability in employment, state and local government and the United States Congress, public accommodations, commercial facilities, transportation, and telecommunication.
The invisibility of mental illness, says Tillman, makes it harder to come up with visually impactful ways to protest. As a suicide prevention advocate, he’s thought long and hard about how to illustrate the staggering number of people who die each year of suicide in the United States. “It’s like wiping out a small city every year.” In 2018 alone, there were 48,344 reported suicides.
Tillman suggests advocates learn from Active Minds, a nonprofit supporting mental health awareness and suicide prevention among young adults. Founded by Alison Malmon in 2003, after her older brother died of suicide three years prior, the organization developed the traveling Send Silence Packing exhibit. The exhibit tours college campuses, using 1,000 backpacks to represent the number of college students who die by suicide each year. “What if we did this on the capitol grounds in Washington, D.C. with 48,344 pairs of shoes?” asks Tillman. “This would show people the lives lost to suicide in a single year.”
After our interview, Tillman emailed me this Washington Post article: What if all covid-19 deaths in the United States had happened in your neighborhood? The piece features a simulation to help people comprehend the extent of loss of life from Covid: 204,678 deaths at the time of publication. A person can enter their address to see what it would look like if all Covid deaths in the U.S. happened where they live. I did so. In New Orleans, that’s over half of the city’s population. Tillman believes a similar simulation for suicide would help people visualize how dire it is as a public health emergency in the United States and worldwide.
Employment is another area where mental illness invisibility has posed a considerable hurdle for equality. Though the ADA typically covers diagnosed mental health conditions, he says the hiddenness of mental illness and vagueness of ADA language makes it easier for employers to skirt compliance. For example, not long ago, he worked for a mental health organization and asked for accommodation under his diagnosis. The employer denied his request. If Tillman, who was knowledgeable about his rights, couldn’t move the needle with his employer, a mental health organization, he wonders what chance other people have. “There was little recourse, and I couldn’t have likely changed the outcome without facing stigma and challenges in the workplace.”
Employers, says Tillman, are often not aware of their obligations under the ADA regarding mental health. Under the act, to have employment protections, a person must be able to perform the essential functions of the job and have a disability as defined by law. This is where it gets tricky, Tillman says. The ADA doesn’t list out what conditions constitute a disability. Congress originally defined disability as a physical or mental impairment that substantially limits one or more major life activities, a record of such an impairment, or the person be regarded as having such an impairment.
The legislature’s intent in creating the ADA was to protect people with a broad scope of physical and mental impairments, but Tillman says the vague language has left the term “disability” open to interpretation, which has precluded protection for the very people Congress aimed to include. For instance, Congress found that people with bipolar disorder and major depression hadn’t been able to bring ADA claims because they were found not to meet the disability definition.
Through amendments in 2008 and 2016, Congress has tried to close the gaps, but Tillman says ambiguity remains. Not just in terms of what conditions quality but also in accommodations, which the ADA states must be reasonable. “The term reasonable is also open to interpretation. What does that mean when it comes to hidden illnesses?” he asks. The Department of Labor states that “most employers are aware of different types of accommodations for people with physical and communication disabilities, but they may be less familiar with accommodations for employees with disabilities that are not visible, such as psychiatric disabilities.”
Tillman says that while it’s visually apparent that a person in a wheelchair needs curb cuts, what accommodations people with mental illness need aren’t as transparent. People with psychiatric disabilities may need flexible schedules and be allowed to telecommute or work from home. They may require leave related to therapy and crisis prevention and recovery, and flexible breaks set by the person instead of a rigid predetermined schedule. “In my own experience, there were days I could put on a smile and act like everything was hunky-dory and go about my eight-hour workday, but that was the maximum amount of energy I had. I’d go home and collapse, cry, or experience all the emotions I wouldn’t allow myself to experience during the workday.”
The Department of Labor has listed frequently used workplace accommodations for psychiatric disabilities, which include those mentioned by Tillman. It also incorporates a reduction in office place noise, increased natural lighting in the office, recorded meetings and training sessions, removal or modification of non-essential job duties, and implementation of a flexible and supportive supervision style. Unlike with many physical disabilities, Tillman notes that people with mental health challenges aren’t typically aware of what their rights are under the ADA. “We lack information that is clearcut and available.” Furthermore, he says, there’s not much guidance on what to do if an employer violates a person’s rights, and what materials are available aren’t readily accessible.
While shifts in protests and ADA implementation and enforcement are necessary, Tillman says that what also needs to change is an adequate representation of people with psychiatric disabilities in leadership roles. Other disability groups experienced their watershed moment decades ago. Like the deaf and hard of hearing did with the 1988 Deaf President Now event, a highly organized protest at Gallaudet University in Washington, D.C. The university’s board of trustees had named Elisabeth A. Zinser as president, a hearing candidate. “Students protested for several days, locking themselves to the gate of the college. The board ended up meeting all of their demands, including naming Dr. I. King Jordan as the university’s eighth and first deaf president.”
In advocating for people in any disability group, Tillman says that members of that group must be included in leadership positions because they have “that cultural piece to their own story and identity.” Yet, he says, that’s not happening in mental health. Yes, organizations are starting to hire certified peer specialists but not typically in leadership roles. “Inclusion of people with mental illness in leadership gives us a voice and more power in decision making.” This also matters, notes Tillman, because leaders with lived experience will have a greater understanding of what challenges people with psychiatric disabilities face in day-to-day life and how to meet the needs of their employees with mental illness.
Together, notes Tillman, stigma and invisibility have created barriers for people with psychiatric disabilities. For example, an employee may fear sharing their diagnosis and not ask their employer for accommodations. Later on, says Tillman, the need for job modification comes out less optimally. “It may reveal itself when the absence of the accommodation starts to affect the person’s job performance, and suddenly they are let go.”
That’s not to say Tillman doesn’t understand the fear of potential ramification from stigma, and there are days where he wonders if he wants his story out there anymore. “I worry it will cause people to think differently about me.” But he says if talking about his experiences helps one person overcome their fear. Well, then it’s worth it. The semicolon on his wrist was his way of “being out” about his suicide attempt. It’s done what he’d hoped. People ask questions about the tattoo, and it starts a conversation, or they approach him and say, “Me too.”
Photo: President George H. W. Bush signing the Americans with Disabilities Act inscribed to Justin Dart, Jr., 1990
