What NPR readers want you to know about living with a disability

This story is from NPR’s Up First series.

July is Disability Pride Month, an event dedicated to celebrating the unique strengths and contributions 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 on July 26, 1990, by former President George H.W. Bush.

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

Overwhelmingly, you told us that disabilities aren’t one size fits all. We received answers from people with disabilities ranging from the physical to the mental, developmental and cognitive. Nearly everyone emphasized that not all disabilities are visible or immediately recognizable from looking at someone.

But these common refrains were also accompanied by differences of opinion. “Remember that one person’s experience is their own, no matter their affinity groups,” Laura Williams of Philadelphia said. “Their personal, individual reality exists alongside the realities of millions of different people.”

“Disability is vast, varied and beautiful,” Hannah Soyer of Des Moines, Iowa., said. “My lived experience as a queer disabled woman is unique to me, as is the lived experience of every other disabled person.”

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

Responses have been edited for length and clarity.

It could happen to you

“I wish people were aware of how sudden it can be and how no amount of ‘healthy’ eating, exercising or wellness culture will spare you from becoming disabled,” Ariel Taranski of Memphis, Tenn., said. Taranski received a postural orthostatic tachycardia syndrome (POTS) diagnosis when she was 19, after years of unexplained symptoms. POTS is a type of dysautonomia, which stems from dysfunction in the autonomic nervous system. “I was 14 when I first fainted, and before that, I was seemingly healthy. I played multiple sports, did theatre, and had boundless energy until, just one day, I didn’t.

Denise DiNoto has had a degenerative neuromuscular disease her whole 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 will become disabled sometime before they die,” Marty Slighte, who has Ehlers-Danlos syndrome, said. “Disabled people are just like you. We have hopes and dreams, wants, and desires. We love and need to be loved.”

Disability is a spectrum

The same disability can affect each person differently. Even for individuals, a disability can feel different day-to-day. “I have good days and bad days, sometimes with significant swings in between,” Kristen Kingzett, who has juvenile idiopathic arthritis, said. “So, if you see a person doing something one day and they say they can’t do that same thing a different day, that doesn’t mean that they’re lying, scamming, or lazy.”

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

Some readers said that 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,” Rami Ungar of Columbus, Ohio, said. “But if you found out I was on the spectrum, had ADHD and occasionally had anxiety attacks before all that, you might not think I was capable of doing all that. And you would be dead wrong.”
Many others, like Mike Fitzsimmons, who has Spina Bifida, acknowledged their accomplishments. “I can do hard and somewhat extreme things,” he said. “I became the first person born with Spina Bifida to finish an ultramarathon.” Still, he emphasized that he has a “major disability” that impacts everything he does “every second of every day.”