Living with a Disability: What NPR Readers Want You to Know

This story is from NPR’s Up First series.

July is Disability Pride Month, an event dedicated to celebrating the unique strengths and contributions that people with disabilities have made to society. In the U.S., the celebration coincides with the anniversary of the Americans with Disabilities Act, which was signed into law by former President George H.W. Bush on July 26, 1990.

To celebrate this month, we asked readers and listeners to share their experiences with disability. We wanted to know: What is one thing you wish people knew about living with a disability?

You overwhelmingly told us that disabilities are not one size fits all. We received responses from people with disabilities ranging from physical to mental, developmental and cognitive. Almost everyone emphasized that not all disabilities are visible or immediately recognizable when you look at someone.

But these common refrains also came with disagreements. “Remember that a person’s experience is their own experience, regardless of their affiliation groups,” said Laura Williams of Philadelphia. “Their personal, individual reality coexists with the realities of millions of different people.”

“Being disabled is vast, varied, and beautiful,” said Hannah Soyer of Des Moines, Iowa. “My life experience as a queer disabled woman is unique to me, just like every other disabled person’s life experience.”

The nearly 300 responses from NPR readers represent a wide range of experiences with disability. While no one story is universal, these were some of the lessons about living with a disability that stood out the most.

Comments have been edited for length and clarity.

It could happen to you

“I wish people were aware of how sudden it can be and that no amount of ‘healthy’ eating, exercise or wellness culture can protect you from disability,” said Ariel Taranski of Memphis, Tenn. Taranski was diagnosed with postural orthostatic tachycardia syndrome (POTS) when she was 19 after years of unexplained symptoms. POTS is a form of dysautonomia, which stems from dysfunction in the autonomic nervous system. “I was 14 when I first fainted, and I seemed healthy before that. I played multiple sports, was involved in theater, and had boundless energy until one day I wasn’t.

Denise DiNoto has lived with a degenerative neuromuscular disease her entire life. The 50-year-old wants people to know that “disability is not a fate worse than death.” She points out that “you can adapt, and you would if you suddenly became disabled.”

“Most people become disabled before they die,” said Marty Slighte, who has Ehlers-Danlos syndrome. “Disabled people are just like you. We have hopes and dreams, wishes and desires. We love and need to be loved.”

Being disabled is a spectrum

The same disability can affect everyone differently. Even for individuals, disability can feel different from day to day. “I have good days and bad days, sometimes with significant fluctuations in between,” said Kristen Kingzett, who has juvenile idiopathic arthritis. “So if you see someone doing something one day and they say they can’t do that the next day, that doesn’t mean they’re lying, cheating or lazy.”

“Some people have disabilities that come and go,” Kristen Bettega said. No one doubts that serious physical illnesses like cancer develop and then go into remission. I wish more people knew that other disabilities are the same. If I need time off for depression every now and then, but I can work most days, that doesn’t mean I’m faking depression.

Some readers said their disabilities don’t always get in the way of their lives. “I have a good job, I own my own home, and I’ve published five books and several short stories,” said Rami Ungar of Columbus, Ohio. “But if you found out that I’m autistic, have ADHD, and have occasional anxiety attacks, you’d think I couldn’t do any of that. And you’d be completely wrong.”
Many others, like Mike Fitzsimmons, who has spina bifida, acknowledged their accomplishments. “I can do difficult and somewhat extreme things,” he said. “I became the first person born with spina bifida to complete an ultramarathon.” Still, he stressed that he has a “severe disability” that affects everything he does “every second of every day.”