Story and Photos by Yvette Mallari
Environmental disabilities were invisible to me too, until I met Valerie Kappas, whose experiences echo Chuck’s. Kappas, an artist and former small business owner in Mesa, uses Ability360’s Personal Assistance Services.
Before I even set foot on Kappas’ doorstep, I contacted Mary Lamielle, founder and executive director of the National Center for Environmental Health Strategies. Chemically sensitive since her mid-20s, she devoted over three decades to researching and advocating for those with environmental disabilities.
“I was very sick, but I was very aware,” she said.
A major complication for those with environmental disabilities is that the medical field has yet to find a successful provocation study—proof that the environment is the true cause of the symptoms.
Also, environmental sensitivities go by seemingly dozens of acronyms, EHS (electrical hypersensitivity) and MCS (multiple chemical sensitivity) being the most popular, Lamielle states that these terms are loaded. She explains that some in the community find these labels demeaning and prefer environmental sensitivities or intolerances.
“Environmental sensitivities tend to be put in the allergy category,” she said. “So when researchers test this, they find nothing, and they say ‘this does not exist’ because it’s not an allergy. It’s not an allergy, but it does exist. You’re not going to find anything if you have your eyes shut or your mind shut.”
Before meeting Kappas, resources suggested I wash my clothes with white vinegar and avoid all scented products. I followed these instructions to a T, yet she told me I was still fragrant. It can take up to a week for someone to completely neutralize.
“Some people are very attached to their fragrances,” she said. “I have to ask caregivers to make lifestyle changes, and some people are willing to do that and some people aren’t. Your home is supposed to be your safe environment where you can recuperate and avoid that kind of thing.”
Due to the exposure risk imposed by my battery-powered camera, I used a lens that allowed me to take photos of her from a distance. She explained how isolated environmental disabilities left her.
She requires caregivers and used a power chair due to a C5-6 spinal injury. Afterwards, she developed chemical sensitivity. Her chemical sensitivity symptoms range from nausea to sharp lung pain. She stopped painting, and never leaves the house without her own oxygen and a ceramic mask.
To reduce her exposure, she worked, socialized, and created art via computer, which gave her access to the world within a controlled environment.
However, Kappas later developed electrical sensitivity, and her solutions for one disability became problems for another. Her power chair and computer made her ill, causing headaches and fatigue. Giving those up left her world a lot smaller.
When speaking about the tradeoffs caused by exposure to her electrical devices, Kappas said, “For me, personally, the electrical sensitivity is worse than the chemical sensitivity.”
“These containers were filled with flowers and food plants,” she motioned to the scattered pots around her backyard, most of them empty. “Now in my manual chair, I can’t get out of the house by myself. I can’t open the door and get on the ramp by myself. I would rather be outdoors than indoors. So that’s been really radical for me.”
She heard of “Better Call Saul” through a nighttime caregiver. Kappas wondered, “Is it going to make us look crazy or are they going to take it seriously?”
Kappas welcomes accurate media representation, as it may help educate the general public about invisible disabilities. She finds it exhausting to constantly validate her disability in order to receive services.
Many caregivers do not understand the limitations her disability imposes.
“You get tired of asking people to change their lifestyle,” she said, knowing that her health worsened the last time she tried pushing her limits.
“If I’d stayed off the computer more, I’d probably at this point still be able to do more.”
Her home holds a miniature forest of air-purifying plants next to a table jam-packed with no-longer-used paintbrushes. Her art work, including a self-portrait and vibrantly painted palm tree bark, still hangs on purple walls.
Despite electrical sensitivity, she’s determined to keep a white-knuckled grip on the fleeting digital world no matter what, even risking her health just to keep up with the latest viral video.
While most of the battle is self-advocacy and awareness, there is hope for broader understanding. Documentaries like “The Human Experiment” and even TV shows like “Better Call Saul” are giving attention to a once-hidden condition. Studies are focusing on the link between genetics and increased chances of developing an environmental sensitivity. The US Access Board’s Indoor Environmental Quality Project Report explains and proposes solutions for healthier indoor environments, and centers like Ability360 are scent-free. Progress is slow, but advocacy continues toward giving invisible disabilities the visibility they deserve.
Suspect you have an environmental sensitivity?
Dr. Claudia S. Miller, an allergist and immunologist, offers the Quick Environmental Exposure and Sensitivity Inventory (QEESI), which screens for environmental intolerances. If there is a pattern, individuals can take it to their physician.
Lamielle suggests:
-Buy organic foods
-Make a neutral space in order to test different exposures
-Keep a log
Avoidance is critical, as a symptom can be caused by any number of triggers.
Book Review
Becoming Myself: A Soul Journey with Chronic Illness & Disability
Author: Darrell Lynn Jones
Review by Amina Donna Kruck, Ability360
As a person who has lived with chronic illness most of my life, I found Jones’ book entertaining and validating. Jones worked within the context of the disability civil rights movement while having several chronic illnesses that affected her energy, memory and ability to think. Yet, it took her years to think about her chronic health issues as something that needed to be accommodated. Like many of us with chronic conditions and invisible disabilities, she describes so well her struggle with the stigma she experienced, within the disability community and her own family, and the effect it had on her self-image and self-care.
The book describes a journey from feeling like a failure for not being able to cure chronic health issues and a self-image as “damaged goods” (my words) to accepting her health issues as just another way for a soul to experience life in its unique way. For years, Jones tried a myriad of traditional and alternative medicine and spiritual and metaphysical practices in an effort to be “well”. She takes us through her process of discovered self-acceptance and learning to trust her inner guidance. This acceptance and trust brought back joy in living and learning to take realistic care of herself, to seeing her “self” in a larger perspective, which she calls a soul. She expresses the best contradiction to ableism and negative stereotypes about disabilities is to see each of us as a unique expression of the divine.
Jones is a civil rights activist who writes in a sometimes humorous and often matter-of-fact style, sharing practical solutions to her situation that inspired me to continue to assess my own life and priorities so that I can live the best life possible with this pesky and divine human body.
Contributor Section
Aitana Mallari
Writer
@aitanamallari
Aitana Yvette Mallari is an online journalist and a student at the Walter Cronkite School of Journalism. She lived in the Middle East, Asia, and both coasts of the US. Aitana was a North America and Tech Correspondent for UK news site The Global Panorama. You can find her at Ability360, probably wearing a skeleton hand.