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How the Americans With Disabilities Act Helps People Every Day

WOMAN LOOKS OUT WINDOW TO SUN SHINING

Kayley Whalen of the National LGBTQ Task Force tells how the ADA has improved her life as a person with "invisible" disabilities.

I am a transgender woman who lives with two largely invisible disabilities. Most people who interact with me have no idea I live with both bipolar disorder and severe gastroesophageal issues, both of which can be debilitating. While being transgender is not a disability, I have faced many struggles accessing transition-related care, and I have undergone gender-confirming surgeries, which have left me unable to work for extended periods.

Last month we celebrated the 27th anniversary of the Americans With Disabilities Act, which granted civil rights protections to people with disabilities. I am thankful the law allows me the opportunity to have a career despite many challenges related to my health. It has helped me access accommodations that assure my success at my current workplace. It also helped protect me at prior points in my career when I was on part-time or full-time disability.

At the National LGBTQ Task Force, we believe that the fights for LGBTQ justice and disability justice are deeply intertwined. Our philosophy in how we conduct this work is "nothing about us without us," meaning we believe that LGBTQ people with disabilities are the experts on their own lives and should be leading the fight for their liberation. That's why, as the Task Force's digital strategy manager, I often share my experiences of being a trans woman living with disabilities and help others share their stories so that our community can build power from within to advocate for our rights -- including protections like the ADA.

Like many people with disabilities, I appear very able-bodied. I bike, do yoga, work full-time, and do activism outside of work. But what people don't see is how much work goes into managing disabilities every hour of every day, including having to work with employers on accommodations. Recently, while I was traveling to speak at a conference, I was stuck in an airport because of flight delays past 2 a.m. without access to proper food, unable to take my medication on its normal schedule, and unable to do exercises to help me manage GE pain. The after-effects of just that one night lasted for three days, during which I was able to attend only half the events I had planned, had to take many breaks, and experienced severe pain throughout each day.

One of the most important things for anyone living with disabilities is self-care. Sleep, my mental health, and my GE issues are inseparable. I need eight to nine hours of sleep every night to manage my conditions. If I don't get that, it can lead to severe pain, anxiety, dehydration, inability to eat, and extreme tiredness, leaving me unable to work. My body doesn't tolerate caffeine, so morning coffee is never an option. Nor is leaving straight from work to socialize, especially at a happy hour, as my system is sensitive to alcohol. Instead, every morning before work and every evening after work I have to do yoga and/or other exercise to manage my mental health and physical symptoms.

Yes, socializing and having supportive community around me is important -- in fact, crucial --to my health. As a queer transgender woman, I need to find time outside work to be part of queer and transgender community. Yet the safe space we all need is harder to access if you have any form of disability. Because of my health limitations, I have to socialize on my own terms and at different hours than others, but if I don't make that time, my mental health will suffer.

Navigating health needs leaves people with disabilities open to many personal questions, especially in the workplace. People often ask me about my diet. Most often people notice the tempeh and dairy-free products I eat and guess I'm vegan. When people notice my gluten-free food they guess I have celiac disease. I get baffled stares when I turn down anything with caffeine, including chocolate.

It would be easy to respond to these questions by saying, "I'm gluten-free and dairy-free." Some people want to ascribe a diagnosis to me or assume I have to provide them one--which can be highly stigmatizing. Instead, for whenever someone needs to know my dietary restrictions, I have a full-page document of restrictions, allergies, and dietary needs I developed with my doctors. I also have documents detailing what I need to manage my mental health, including flexible work hours and a strict sleep schedule when I'm traveling and/or working at a conference. These documents have been crucial to my accessing disability accommodations at work, which is possible because of the ADA.

In past jobs, I didn't know how to advocate for myself using the ADA, and it affected my performance and even led to once having my position filled while I was on medical leave. But since I began accepting my body's limitations and working with doctors to advocate for my health, I've had a much more successful career.

Thanks to the ADA, I don't have to explain all my diagnoses to my employers to access accommodations. This is especially important because I don't have one readily understood diagnosis. No one or two medical conditions can describe all my symptoms -- especially because of how they interact with my bipolar disorder.

My life is extremely regulated. I must plan every meal, with multiple contingency plans if something fails. I own a collection of Tupperware containers and lunchboxes that could fill two milk crates, and I keep a week's worth of food in fridges and freezers. If I'm traveling, I call hotels to see if they have fridges and microwaves. If I'm invited to a restaurant, I call to check on all the ingredients in the food I might eat, and sometimes I have to suggest a different restaurant or offer to meet somewhere after. What is easy for anyone without disabilities -- planning a trip or even simply going out with friends -- is anything but for myself and others. And the stigma that comes with it may be the more painful part of all.

The stigma regarding my dietary and sleep needs comes in addition to the stigma of being bipolar, which is widely misunderstood as making someone incapable of normal social interactions. However, since being diagnosed as bipolar 12 years ago, I've learned to manage my symptoms through medication, therapy, sleep, exercise, and a healthy diet. If I notice symptoms flaring up, I have the ability to take medical leave from work -- again, thanks to the ADA.

No two experiences of living with disability are the same. I share my story for all those whose disabilities are invisible or misunderstood. At the National LGBTQ Task Force we're working every day to advocate for people with disabilities, and I'm proud to help lead that work. We can never take the ADA for granted; it provides crucial protections that must be defended. The ADA strengthens workplaces, strengthens communities, and builds a better society. I have to thank it for providing opportunities for me I would never have been able to access otherwise.

KAYLEY WHALEN, an activist who works at the intersections of racial justice, LGBTQ issues, humanism, disability advocacy, immigration, and drug policy reform. is the digital strategies and social media manager at the National LGBTQ Task Force.

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