I thought stepping off the toxic capitalist conveyor belt to become a full-time freelance journalist would insulate me from ableist rhetoric and give me the space to pursue newly accessible mental health care. Instead, the past two years have taught me that we all internalize what’s thought of as “corporate culture” to such a degree that it’s really the general American work culture. We value people based on their ability to produce in our system, emphasizing output volume over the meaningfulness of one’s contribution to the lives of those around them and widgets over human beings.
So where does that leave those of us who are diagnosed with a mental illness and/or consider ourselves neurodivergent (i.e., divergent from dominant standards of “normal” cognitive functioning due to attention deficit disorder, bipolar status, autism or some other neurological departure from the norm)?
My current slate of diagnoses includes extreme attention deficit disorder (ADHD), dysthymia (chronic, intermittent depression), anxiety and possibly post-traumatic stress disorder. Treating this combination of conditions is a time-consuming juggling act. Currently, I’m in weekly therapy and see the psychiatrist who coordinates my medication protocol every two to six weeks. Often, I need most of the day to process therapy, and on weeks where I see both doctors, I need almost an entire day off. I also spend a fair amount of time (to say nothing of the money) at the pharmacy filling prescriptions that legally can’t come with refills or be ordered in quantities that make juggling them less of a nuisance.
I can’t enter into freelance contracts with people who don’t make allowances for my treatment or understand that when I start a new medication, I could have a period of side effects that are incompatible with their standard production schedule. I currently can’t have meetings or interviews between 10:15 am and 11 am, because I deep-breathe through 45 minutes of almost migraine-level dizziness about an hour after my morning anxiety medication. It passes and I’m fine; since I work from home and know it’s going to happen, I can just lay down.
Nowadays, I publicly challenge the attitude that my contribution is somehow less valuable because I deal with illness or because my brain functions differently. But, for a long time I was so invested in appearing competent and professional that I exacerbated my anxiety disorder with the stress of never taking a sick day or half day or asking for things I needed — like turning off messaging apps and not answering email during periods where I didn’t have work for a particular contractor scheduled. As I started understanding more about how the neurobiology that causes my ADHD symptoms makes me better suited to (and faster at) a sizable number of tasks and skills, I became less tolerant of throwaway lines like “I don’t know why that takes you so long.” I have heard from friends who are trauma survivors and whose diagnoses run the gamut of mental conditions that my experiences are typical. It often doesn’t matter if our employer/client has social justice leanings or is a nonprofit dedicated to culture change; the stigma of mental illness is so pervasive that we’re rightly worried about disclosing.
Widespread discrimination against people with mental illness and/or cognitive and neurological disabilities sidelines a massive segment of the population.
Widespread discrimination against people with mental illness and/or cognitive and neurological disabilities sidelines a massive segment of the population. According to best estimates from the National Institute of Mental Health, one in five — approximately 43 million — Americans have a diagnosable mental disorder at any given time, and one in 25 — approximately 10 million — have “serious functional impairment due to a mental illness, such as a psychotic or serious mood or anxiety disorder.” The Equal Employment Opportunity Commission (EEOC) requires “reasonable accommodations” that are widely interpreted in their guidelines to apply to “any condition that would, if left untreated, ‘substantially limit’ one or more major life activities.” Getting those accommodations, however, requires disclosing diagnoses to an employer and risking being passed over for promotions/projects, talked down to and experiencing other kinds of legal discrimination.
That reasonable fear is compounded for anyone who faces racism, transphobia or other forms of oppression in addition to ableism. As a straight, cisgender, white woman, I am easily accepted as “professional” and pass for middle class, even though I’m not. I’m educated and have media training that boosts my ability to speak comfortably in most situations. The roadblocks for people who face multiple overlapping oppressions simultaneously are much more severe.
Sonya Renee Taylor is the founder and “radical executive officer” of The Body Is Not An Apology. She told Truthout that the impact of being neurodivergent, on top of being part of a group that experiences oppression, begins before the hiring process. Job descriptions include duties such as lifting a certain weight of office supplies or traveling, for example, which deter many people with disabilities, including psychiatric disabilities, from even applying.
“People with disabilities that could be accommodated often do not apply,” Taylor said. “Fat people face discrimination that is difficult to prove because of unconscious bias. This is true for a variety of people who do not fit the ideal, which is thin, white, able-bodied and young … people feel isolated and alone in the workplace because of these dynamics.”
Strength in Numbers
I reached out in person, via Twitter and through email to invite people with neurological or cognitive disabilities and/or mental health issues in my communities to share their stories of on-the-job discrimination and undue disciplinary action, and almost everyone who responded mentioned feeling isolated.
When I spoke with Taylor about this, she said that while the EEOC technically provides protection, stigma prevents people from asking for accomodations and makes many kinds of discrimination hard to prove. Short of a system-wide overhaul, she recommends banding together.
“There is power in numbers; we don’t have to be lone rangers,” said Taylor. “We can encourage our colleagues to join us in pushing for organization-wide accommodations. In such a case, the issue gets to be about more than us, which also lessens the likelihood of us being targeted individually.”
When even that feels risky, Taylor points out that choosing the safe route of remaining hidden is hardly a good option.
“The system will give us endless barriers to navigate; not challenging them only aids in our oppression. As Audre Lorde said, ‘Your silence will not protect you.’ You deserve your own love directed toward you.”
While Taylor shared that she has been lucky to work places that “were progressive and understanding more often than not,” Agustina Vidal, the resources coordinator for The Icarus Project — a social justice support network and education project that describes itself as “by and for people who experience the world in ways that are often diagnosed as mental illness” — echoed the stories I’ve heard over the years about conditions in social justice organizations rarely being better than in the average workplace.
“When I worked in the human rights movement, I often heard the phrase: ‘There are no human rights for human rights workers,'” said Vidal. “There was a double standard where workers offered intense support to the people who came to us, but were denied a fair or just workplace. We were spread thin and overworked, and there were no mechanisms in place for social care. I experienced that the passion I had for social justice was used as a vehicle of exploitation to often give myself to the job and to others in ways that weren’t sustainable or conducive to wellness.”
Efforts to Create Alternative Work Environments
Taylor has intentionally built The Body Is Not An Apology to be a supportive environment.
“I am working to create my ideal workplace,” she said. “We believe that as a radical self-love organization, we must allow each person to focus on their radical self-love journey and make it their first and most important contribution to our work.”
Her employees regularly take time off for mental health, trauma and life events. “We help each other and cheer lead one another; we check about accessibility needs and emotional support,” she said. “I want to work someplace where my whole self is valued and cared for.”
Laysha Ostrow is the CEO of Live & Learn, a company she founded “to create opportunities for people directly affected by research and policy.” She told Truthout that, like Taylor, starting her own business has been the most effective way to work in an environment without barriers and discrimination.
“There was a study out of UCSF and UC Berkeley recently that showed that 49 percent of Silicon Valley entrepreneurs had one or more lifetime mental health conditions,” Ostrow said. “The study authors concluded that there may be an underlying relationship between entrepreneurship and mental health conditions, which is consistent with many accounts from the Mad Pride movement and other anthropological and biographical writings that suggest similar relationships between creativity, drive and mental disorders.”
“Mad Pride” encompasses a disparate group of people around the world, some of whom seek to destigmatize mental illness and inform the public about the reality of living with their diagnoses. Others reject the medicalization of anyone who interacts differently with the world, seeking alternatives to established treatment protocols.
Vidal used Mad Pride language when describing a frustration at the loss the larger population experiences when those who are neurodivergent and/or experience conditions diagnosed as mental illness are excluded from workplaces and other areas of our society.
“Excluding the contributions of people that are neurodivergent or experience the world in ways that are often labeled as ‘mental illness’ is a loss for society at large.”
“Mad ones have a lot to offer to this world, particularly at a time when more and more Americans are seeking mental health treatment and experiencing emotional distress,” she said. “Excluding the contributions of people that are neurodivergent or experience the world in ways that are often labeled as ‘mental illness’ is a loss for society at large. There are so many ways in which we can enrich and improve this beautiful, but damaged and painful world.”
Ostrow has made researching and providing ways to support and empower those people marginalized by the mental health “care” system and broader cultural stigma of mental illness the foundation of her entrepreneurship.
“Entrepreneurship is consistent with recovery-oriented principles in rehabilitation, such as focusing on the person’s individual preferences and achieving independence from the system,” said Ostrow. “I think entrepreneurship capitalizes on the particular interests of many people with psychiatric histories, both to enact empowerment through social change and to have flexible work accommodations pursuant to the Americans with Disabilities Act.”
Disclosing Mental Illness at Work
Andrew J. Imparato, executive director of the Association of University Centers on Disabilities, is an attorney who has been open about his bipolar diagnosis for more than 20 years. Having experienced discrimination himself, even after the employment provisions of the Americans with Disabilities Act (ADA) had taken effect, he recognizes the risks of disclosing, and advocates for policies that provide protection for those who wish to remain private about their diagnoses.
“For many employees with mental illness, they are reluctant to request a reasonable accommodation for fear that the disclosure of a mental illness will hurt their long-term prospects with that employer,” Imparato told Truthout. “In part for this reason, I have been pushing for employers to adopt flexible work policies for all employees, and not force people into a disability box if they are asking for something that will make them more productive at work.”
When asked during a job interview at a nonprofit in the 1990s if he had anything to offer that would be relevant to the mission of the organization, Imparato explained a bit about his mood disorder. The lawyer leading the interview responded with: “Oh, c’mon Andy, we all see a therapist.”
“Her message to me was that I was one of many neurotic lawyers, and I shouldn’t be trying to leverage that status to count as a person with a psychiatric disability who might benefit from affirmative action,” said Imparato. “Needless to say, this was not a positive interview experience for me. And it illustrates a phenomenon that we see a lot with non-apparent disabilities. Either it is not significant enough to matter so you should ‘get over it’ or ‘stop trying to use it’ for some special status or privilege, or it is so significant that it raises questions about your qualifications for a job, even if your resume otherwise demonstrates your qualifications for the job.”
Vidal echoed Taylor’s intentionality in creating a “social justice work environment” that recognizes people’s individuality and needs, and that prevents the double-edged stigma sword Imparato described. The Icarus Project encourages people to freely share when they struggle and purposely foster trust among coworkers.
“The first step to feel[ing] comfortable communicating is to really believe that the workspace and your coworkers have your best interests at heart and want to support you,” said Vidal. “It isn’t that they accommodate you as a legal duty, but that they are genuinely invested in your well-being as a person, not just as a worker.”
Limitations of the Americans With Disabilities Act
Victoria M. Rodríguez-Roldán, J.D., director of the Trans/GNC Justice Project at the National LGBTQ Task Force, has both experienced stigma and discrimination as a transgender Latina living with bipolar disorder and also done legal work to counter it — her previous job was enforcing disability discrimination protections within the federal government.
“The ADA is an excellent piece of legislation as far as discrimination, and one of the big achievements as far as civil rights,” Rodríguez-Roldán told Truthout, “but one thing to keep in mind is that one of the biggest issues is what is going on in practice. When you talk about the benefits [of the ADA], that’s one big issue.”
While many people living with mental health problems recoil from the comparison of mental illness and physical ailments, the opposing ways the two categories are handled in our capitalist work culture are striking. There is a pervasive perception that those of us with mental illness are broken, while people with a physical condition — particularly, a visible one — should receive a more sensitive and flexible response (although often, those responses are also inadequate). Rodríguez-Roldán described what she’s seen in her work.
“If the person has cancer and clearly cannot work for a big period of time, employers will bend over backwards and go beyond what the ADA will require them to do,” she said. “But say you have a mental illness, and you’re hospitalized and you need several days off for that; the next thing you know, they’re changing the locks and you can’t get in. This happens in settings even where you don’t think they can do this kind of thing.”
Rodríguez-Roldán says that both those tasked with enforcing the “reasonable accommodations” policy and employers need to be aware of the discrepancy. “By the time we’re having to complain to the EOC and lawyers are suing them,” she said, “we’ve already lost.”
Taylor placed the emphasis squarely on her fellow employers.
“Companies should be initiating anti-stigma campaigns in the workplace, rather than these workplace wellness programs that encourage constant weight loss and disordered eating,” she said. “What if those programs instead encouraged education and awareness campaigns for neurodivergent folks, as well as other identities? Employers should be regularly checking in on the emotional well-being of their staff and providing resources around that.”
“We can create our businesses with new models that value people over output.”
Taylor advises people who are seeking to start new organizations and create new workplaces to beware that they have likely internalized the ableism of the capitalist production model.
“The incessant-work-as-an-assessment-of-your-value model is inherently ableist and unsustainable,” she said. “We must remember that we can create our businesses with new models that value people over output.”
The ableist model isn’t just problematic because of a fear of stigma, or microaggressions, or even possible dismissal from a job. In fact, Vidal rejects the “accommodations” language because it “coveys the idea that mental health and emotional respect are an inconvenience to your coworkers and the workplace.”
Because most of us are without union backing, we often are on our own when raising issues with our employer; we typically aren’t given guidelines for requesting time off to tend to our emotional and mental needs in the employee handbook.
“We are in the impossible position of choosing between having a job and taking care of ourselves.”
“I think many of us hide our struggles because revealing them may jeopardize access to employment and our ability to meet our basis needs,” Vidal said. “We are in the impossible position of choosing between having a job and taking care of ourselves.”
Problems With the US Government’s Definition of Disability
Another source of concern to disability activists is the inadequacy of government standards for assistance.
Imparato said, “I think the biggest barrier to employment and economic self-sufficiency for people with serious long-term mental illness is the definition of disability for [Supplemental Security Income] and [Social Security Disability Insurance], which dates to 1956.”
The Social Security Administration (SSA) answers the question “How Do We Define Disability?” this way:
To meet our definition of disability, you must not be able to engage in any substantial gainful activity (SGA) because of a medically-determinable physical or mental impairment(s):
That is expected to result in death, or [t]hat has lasted or is expected to last for a continuous period of at least 12 months.
Imparato takes issue with requiring people to submit medication documentation as proof.
“We are sending the wrong message to young people and others who are trying to figure out how to manage their symptoms and put their lives back together,” he said. “No one should be required to prove they can’t work in order to get support from the government to help them navigate their disabilities.”
According to Ostrow, the SSA does have options for self-employment for people with disabilities — Plan to Achieve Self-Support and the Ticket to Work Incentive program. But, as with any program, they only work for people who know they exist.
“When I was on Social Security Disability Income, I had never heard of either of these programs,” she said. “I knew I couldn’t make more than a certain amount of money, but I didn’t know about programs to go back to work until I started working as a policy researcher. I think we could do a lot more to figure out effective workforce development strategies that enable people with psychiatric disabilities to achieve career goals and financial stability.”
Her goal in her research and advocacy has a very simple social justice thread — one that, if applied in government and community programs, by employers and by our broader culture, could easily and quickly change things for those of us with mental illness. It’s one that is even achievable under our current capitalist system.
“What we call ‘disability accommodations’ are really about providing people choices according to their preferences, needs and values,” she said — they’re about “creating spaces for opportunities for all to contribute.”