Photo Courtesy of AMC
Invisible Disabilities: Real or Imagined?
In the “Breaking Bad” spin-off “Better Call Saul”, a brilliant lawyer named Chuck refuses to leave his house due to his sensitivity to electricity. Saul takes care of Chuck while others write him off as eccentric. Hollywood isn’t known for accurate portrayals of well, anything, and disabilities are no exception. What rings true is the skepticism that surrounds Chuck’s electrical sensitivity, because his disability is invisible.
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.
Valerie Kappas in her backyard
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.”
Pots in backyard now sit empty. Kappas switched from a power chair due to her electrical sensitivity to a manual chair which she cannot push unassisted.
Kappas’ artwork hangs in her home, a reminder of the days before her chemical sensitivity ended her painting career.
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.
-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.
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.