Why We Should Talk About Invisible Disabilities: ‘We Count’
Key takeaways:
Ben Mattlin has disabilities people can see, since he uses a wheelchair. But he also has an “invisible” autoimmune condition.
Sometimes his gut issues seem far more intrusive, he says, because no one can see why he hurts.
He wants people to know that disabilities come in all types, even if you can’t see them.
Ben Mattlin has lived with a visible disability his entire life.
He was born with spinal muscular atrophy, a progressive condition that weakens his muscles. He uses a wheelchair, so people he meets know he has a disability even though they might not understand the particulars of it.
About 20 years ago, Ben — now a 60-year-old Los Angeles-based writer — developed a second, less-visible disability. He has the autoimmune condition ulcerative colitis, a type of inflammatory bowel disease.
He manages the painful flare-ups with medications and uses a colostomy pouch because his colon was removed.
Ben has spent a lot of time exploring the shifting definitions of disability. His latest book examines the new ways people with disabilities are advocating for inclusion and visibility. His own experiences with both a visible and an invisible disability informed his perspective.
What is ‘disability pride’?
“Disability Pride” is the title of Ben’s book — and it’s also an emerging concept that society should accept and honor each person’s uniqueness.
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In his lifetime, Ben has seen a giant shift in disability rights and awareness. The Americans with Disabilities Act (ADA), passed in 1990, “granted unprecedented equality and access and accommodations for nearly a quarter of the U.S. population,” he writes.
More recently, Ben has been impressed by lavish ad campaigns featuring models with disabilities, and he has enjoyed watching actors with disabilities take on highly visible roles in television shows, movies, and plays. “It goes beyond inclusion to a form of disability pride,” he says.
He knows that the very visibility of some disabilities has made these changes possible. Yet he sometimes finds himself taking pains to hide his colitis. “I talk about disability pride, so why am I more ashamed of the colitis than I am of the muscle weakness?”
The obvious answer is that it’s easier to hide an invisible disability like colitis than to cope with people’s reactions. But the short-term benefit of simply getting through the day can get in the way of the longer-term goals of creating a world with fewer obstacles and more disability pride, he notes.
Lyme disease, long COVID, autism, dyslexia, and anxiety are all examples of disabilities that are invisible and yet have profound implications on the ways people live and work.
“There are a lot of people out there with things that don’t show and that people don’t understand,” Ben says. “It should all be part of disability pride and understanding. Disabilities and chronic health conditions shouldn’t make you feel bad about yourself. They shouldn’t be exceptional.”
A kind of disability code
Ben grew up in New York City with parents who had “the emotional and financial resources to try and give me as normal a life as possible,” he says. They insisted he attend grade school with his non-disabled peers, before such accommodations were required by law.
As one of the first wheelchair-using students at Harvard University, Ben had no choice but to navigate a campus that was just starting to build ramps and equip buses with lifts for wheelchairs.
He didn’t complain: He had grown up with a “kind of disability code that was common then: minimize the impact, hide it, sweep it aside as a mere personal detail — and get on with your life,” he writes.
Disability pride, “is the opposite end of the spectrum,” he writes. “It’s the idea of showing it all, not trying to cover it up, without shame or excuse or trepidation.”
Ben did advocate, though. He wrote letters to newspapers and politicians urging the passage of the ADA. He went to protest marches. Then the law passed. It was a huge improvement, but not enough, he says.
“For all its strengths, the ADA did not — could not — guarantee fair play or full inclusion,” he says in his book. “It did not automatically change people’s attitudes.”
The price of living with disabilities
Ben’s spinal muscular atrophy is progressive, and it is expensive. Ben, who has been married more than 30 years and has two grown daughters, no longer has use of his hands. He uses voice recognition software for his writing. His wheelchair is activated by a joystick that he controls with his mouth. He has a minivan with an automatic ramp, and he sees the best doctors he can find, even if they are not in his insurance network.
His ulcerative colitis is expensive, too. Ben takes a special medication, compounded by a local pharmacy, which isn’t covered by insurance and costs about $500 a month.
Ben says his reporting has highlighted how often people with disabilities still struggle to get appropriate care and accommodations. Insurance coverage has gotten better, but not everybody has insurance.
Sometimes an accommodation can be as simple as recognizing that things don’t have to be done a certain way, just because that’s the way they’ve been done in the past, he says.
For example, when he talks about people with autism and other neurodiversities, Ben notes that activism is no longer focused on finding a “cure.” Instead, it’s focused on how to make sure autistic people can live their fullest lives.
As a result, some companies, he says, are changing their hiring processes to accommodate people who are uncomfortable with eye contact or firm handshakes.
“We the disabled serve a purpose,” Ben writes. “We count. We matter, just as we are.”
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