This post is for the people who cringed when I started calling myself disabled and, more importantly, for anyone who is uneasy about calling themselves disabled (because of the people who cringe). I get the sense that some people cringe because I don’t fit their definition of disabled or they dislike the word entirely.
Do you know what makes me cringe? The thought of losing my job. The thought of losing my health care. The thought of being unable to pay my bills, and losing my home.
I don’t feel like identifying as a disabled person was a choice. I started calling myself disabled in order to keep my full-time job. This is confusing to some people, who believe disabled people cannot work. The truth is the majority of disabled Americans do not receive disability benefit payments.
The U.S. government has multiple definitions of disability. The Social Security Act defines a person with a disability as someone who is unable to work due to a medical condition. However, the Americans with Disabilities Act (ADA) defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”
I benefited from ADA before I considered myself disabled. In 2015, before my MCAS diagnosis, I developed severe arthritis in my hips. Sometimes I wished I had a wheelchair, but I was certain doctors would fix me soon (hahaha). Eventually, the three-block walk from my contract parking space to my office building became impossible. I started calling in sick because I couldn’t tolerate the pain. Finally, I asked my doctor for a disability parking permit. Albeit, a temporary one.
But I didn’t get better.
About the same time I was diagnosed with mast cell activation syndrome, I started having life-threatening reactions at work to fragrance. Panic attacks pummeled me before and during work, as I constantly feared for my safety. This was no longer a matter of pain; it was life and death. I had to request disability accommodations.
Fragrance sensitivity is a difficult disability to accommodate, because it often relies on the voluntary cooperation of others. My employer tried to enforce a scent-free policy in our open office, but a few individuals continued to apply fragrance in the office, as if my life didn’t matter. After months of deliberation and a few emergency room visits, I was moved to an enclosed office on a different floor. My employer added an air purifier and sealed the air vents. I keep the door shut and rarely have visitors. The bathroom closest to my office is designated scent-free, but sometimes I still have to dodge plumes of perfume in the hallway and wear my Vogmask. At this point, I know which people to avoid.
On Wednesdays, I work from home. ADA does not require employers to allow telecommuting, and my employer resisted this accommodation request at first. I needed to prove it was a reasonable accommodation–that I could still do my job for home. My medical documentation explained working from home reduces my exposure to triggers, and conserves my physical energy. I have since disproven my employer’s fears and demonstrated how working from home can decrease sick days. (Update: The pandemic has proven the one day a week accommodation limit was arbitrary. I now work from home every day.)
Sancho, my service dog, accompanies me to work every day. Under ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability. Sancho alerts and responds to my mast cell reactions. I am safer with a service dog, especially since I am alone in my office. ADA also allows Sancho to accompany me in other public places, such as the hospital.
One of the indirect benefits of having a service dog is visually reminding people that I am disabled. When my coworkers see Sancho’s vest, they are reminded I react to fragrances and have other invisible disabilities. Plus, people smile at me a lot more.
Finally, I fall down stairs. Vertigo, low blood pressure, and muscle weakness make me susceptible to gravity. Even if I manage not to fall, stairs can trigger mast cell reactions that last several hours. So, I avoid stairs with help of ADA-required elevators.
Disability is a non-negotiable part of my identity. When I say I am disabled, I simply mean I need accommodations to be able to function. I had to fight hard for these accommodations. They weren’t just given to me. I was met with skepticism and inflexibility. My doctor filled out loads of paperwork and I sat in countless meetings. So I don’t have much tolerance for people who get uncomfortable when I say I am disabled. Nobody wants to be disabled, but I am proud of my self advocacy. I proud to be redefining disability and accessibility.
Even though I read laws for a living, I wasn’t very familiar with ADA before I got sick, because I never imagined I would benefit from ADA. I never imagined I’d become permanently disabled. No one does.
Now I understand how critical ADA is for people with disabilities. Without ADA, I would lose my job, my health care, and eventually my home. I would get sicker and require more health care, but it would be harder to access. I am benefiting from decades of advocacy from the disability community. I am proud to be part of this community and hope I can make positive contributions as I continue to learn what it means to be disabled.
A recap how ADA helps me every day:
- Workplace accommodations
- Working from home
- Scent-free, temperature-controlled office
- Scent-free bathroom
- Business accommodations
- Fragrance relocation or removal
- Delivery or drive up
- Service dog
I also use FMLA leave intermittently. This is separate from ADA accommodations. The Fair Housing Act is another important law for disabled people, prohibiting discrimination in housing.
(Photo by Paul Battaglia.)
13 thoughts on “I am disabled: How the Americans with Disabilities Act helps me every day”
When I had a much lesser condition–a hurt ankle–I was thinking of how ADA impacted my life, too. In short, it often takes disaster (whether it be chronic illness, injury, or something else) to truly realize the enormous impact ADA can have on one’s daily life, but wow, it sure does have an impact.
Thanks so much for sharing. I admire your self advocacy and long for a world where scent allergies are taken as seriously as peanut allergies, etc. I have severe mast cell reactions to essentially anything synthetic, chemicals etc. I’m curious about your service dog? Where did you find one trained to recognize triggers?
My service dog is not trained to recognize triggers, since almost everything is a trigger, including the weather. He naturally alerts to severe reactions.
The ADA helped me keep my terrible job JUST long enough for me to gather enough medical records together so I could apply for disability (which I got). I wound up getting fired…ON MY BIRTHDAY. BEST birthday present I EVER GOT!!! I applied for disability the next day. YEEHAW!!! Thanks ADA!
Oh my. I’m sorry and glad you applied for disability!
I have been at my job for over 20 years. The longer I work here the sicker I got. I tried to get my boss to make this a scent free building but he said no. But, he was the biggest fragrance offender of them all. But people were spraying hairspray at their desks, air fresheners everywhere, Lysol when someone was sick, plus all of the scented lotions, perfumes, and colognes. I must admit. With all of my health conditions, they could have gotten rid of me a long time ago since I’m in a state where they don’t need a reason to fire you. I’m had FMLA for years now. I can have 4 sick days a month & 4 4-hr appointments a month. I’ve been helped a little bit here and there in the last 20 years.
I heavily rely on FMLA also. Sorry your boss doesn’t understand. Some people are just so ignorant about fragrance sensitivity. Thank you for reading.
Thanks for sharing your story. Before I quit my toxic job I used FMLA to work part time at 30 hrs/week instead of 40. Some people were surprised to find that out and would say well you’re almost working a full day. The thing many people didn’t understand was my brain fog would come on like clockwork after 6 hours of work each day. My dr and I had to fight hard to get the last round of FMLA coverage approved. I also used ADA accommodations which were also a pain to get but were essential to being successful at work. They really do make you work for your accommodations which I always found to be an unnecessary burden put on people who don’t need the added stress.
Agreed. It took me awhile to learn how to manage my disease and there was very little support to help me through that phase. Now that I am a few years in, I know by limits and how to advocate for myself. Thank you for reading.
I worked for Walgreens as a certified pharmacy technician when I’m allergic to so many foods airborne like peanuts and cheap cleaning products. The employees were always eating peanuts in the pharmacy and when I had a stroke at work they told me I couldn’t receive help. So I went in the area where customers couldn’t see me as I coughed up blood. I then suffered from trigiminal neurological after that where I struggled to stand for long periods of time after that. The company refused to let me fill scripts while I sat in between ringing patients. After getting nowhere I had no choice but to go on disability. It’s also nice not having to use 10 epi pens a week from severe work reactions I was having there. The ADA told me they couldn’t help my situation.
Do you mean DOJ? Did you file a DOJ complaint? Sorry your employer didn’t try to work with you. I had to file a discrimination complaint to be fully accommodated.
I cannot believe the pharmacy of all places and it’s coworkers were not respectful of this allergy! Many of us have trouble with people respecting scent allergies but peanuts is more heavily documented and should have been accommodated! I feel like a lawyer would be necessary Here ..