How to ask for a fragrance disability modification from a business

Pumpkin spice is here, whether you like it or not.

For me, pumpkin spice is synonymous with death. I don’t just mean in the figurative sense–the end of summer, trees shedding their leaves, and the demise of sensible shoppers.

No, I mean literally. Before September, I already had suffocated from a displaced pumpkin spice broom in a home improvement store. The cinnamon pine cones are sure to follow, filling everyone’s lungs with harmful particles.

Listen, enjoy your latte, but there is no need for pumpkin spice kitty litter. The cats are already suffering.

The problem with seasonal fragrances is I have no idea where they are going to pop up. I usually smell them before I see them, and then it’s too late. Even with rescue medications, my reactions last at least several hours, if not days.

Last year, I had a major victory. I requested my local grocery store remove its cinnamon pine cones… and they did! It took some time–because corporate bureaucracy–but they eventually responded:

“Over the weekend we were able to get approval to remove this product from our floral department. We won’t have them in store after today. Thank you for your patience while we found a resolution for you.”

A few weeks later, I requested another business to stop lighting a candle near its cash register. Their response was even better:

“I am so sorry our candles caused a reaction. We have had a handful of concerns so we understand now the issues the fragrances can cause and will remove them. Thank you for giving us an opportunity to hear you and help.”

In the United States, fragrance sensitivity can be considered a disability and the Americans with Disabilities Act (ADA) requires businesses to make reasonable modifications for people with disabilities.

“ADA requires businesses to make “reasonable modifications” to their usual ways of doing things when serving people with disabilities… Anything that would result in a fundamental alteration – a change in the essential nature of your business – is not required.” – U.S. Department of Justice

Tips for requesting a fragrance disability modification from a business

Write an email to the business. It is important to keep a written record of accommodation/modification requests. You can call the business and ask for an email address if you can’t find one online.
You must say you have a disability in order to request disability accommodations and modifications.
Be specific. Name the store location and product.
Be reasonable. The businesses can deny unreasonable requests (e.g. removing all fragrances at all locations). A reasonable modification might be moving fragrant products away from high traffic areas, such as the entrance and cash registers.
Be kind and thank the business for its modifications.

Example email for U.S. businesses

I am requesting an ADA reasonable modification for my disability at [store name] in [city]. Today, I had a severe reaction to [product] at your store. I am requesting you to [move or remove the product from a specific area] from your store. I have been a customer for many years; however, I cannot continue to risk my health to shop at your store. A 2019 research study found 32.2% of adults suffer from fragrance sensitivity; this modification will likely benefit other customers.

Thank you,
[Your name]

2024 Update

Store leadership and staff changes over time. This September, the pine cones were placed inside the entrance once again. Here is the email I sent to store staff, in addition to forwarding their past response agreeing to make the modification (written records are so helpful!):

I am requesting that the scented pine cones moved from the enclosed entryway, so that I can enter the store without negatively affecting my health. As you can see from the email chain below this disability modification request has been deemed reasonable and made in years past by the [local store name] starting in 2018.

They promptly moved the pine cones!

Sticks and stones may break my bones, but pine cones will surely kill me

I’d love to hear your experiences requesting fragrance disability accommodations from a business!

How to tell someone they smell

Based on my research, people don’t react kindly when you tell them they smell. In fact, it seems to be the quickest way to evoke paranoia.

Technically, everyone smells. Whether it’s from a fresh shower or natural body oils, even the cleanest people have a scent. Just ask my poodle.

However, I am specifically referring to people who drown their bodies in fragrance: perfume, cologne, lotions, deodorant, and detergent. These fragrances can be life-threatening for people with mast cell disease. Just a few seconds of exposure can destroy my health for several days.

Although I try to stick to scent-free environments where people understand my fragrance disability, inevitably someone forgets or doesn’t care. When I was first diagnosed, I tried to be Minnesota Nice and avoid the offenders, but avoidance only left me with two choices: never leave my home or destroy my body. After months of puking, pooping, and gasping for air, I began confronting people.

3 ways to tell someone they smell:

Yell “Skunk!” and run away
Slap a Mr. Yuck sticker on them
Start a game of “Duck, Duck, Smelly Duck”

“You smell” became my default declaration. Every time I sputtered those words, terror swept across the offender’s face, as if they were the one dying. I realize my delivery was not great. In my defense, it’s about all I could manage to say. When your body reacts to fragrance, your organs swell and your oxygen levels drop. Sometimes I become so confused that I forget to flee the room or take my medicine. I fumble for words.

“You smell” was never meant to be a personal attack. I hoped any embarrassment would convince them to respect the scent-free environment. It usually did not. They did not understand the long-term damage caused by their fragrances. I realized it’s easy to tell someone they smell, but it’s hard to explain the consequences.

When I say “you smell,” I mean you’re killing me.

Since my mast cell disease diagnosis four year ago, I have become braver about educating people about my fragrance disability. I have learned requesting scent-free environments is not selfishness. Spreading awareness does not just benefit me; it protects the health of other people with mast cell disease and conditions that cause fragrance sensitivities, such as migraine and asthma.

3 ways to tell someone they smell and it’s harmful:

Hand them your EpiPen and say, “You might need this.”
Write a passive aggressive blog post and send them the link
Email, text, or talk to them after you recover from your reaction. Specifically explain how fragrance affects your body. For example, fragrance reactions can permanently damage my kidney. Probably try this option first.

Of course, you always run the risk of finding out someone is a complete jerk, who doesn’t care if you suffocate or lose an organ. There will always be that one person who suggests you “just wear a mask” without understanding masks don’t block fumes, but they do reduce oxygen flow. It’s best to avoid assholes, whether you have a disability or not.

I am disabled: How the Americans with Disabilities Act helps me every day

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:

Parking
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
Elevators

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.)