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Disability shouldn’t be a taboo. Here’s what to know and what to say

Tyler Feder/Ten Speed Press


Let’s start with some numbers.

More than one billion people — nearly 15% of the world’s population — experience some form of disability. In the United States alone, about 61 million people, or one out of every four Americans, live with at least one disability.

So it’s probably safe to say that you know someone with a disability or might be disabled yourself. To be clear, these disabilities may not be physical or even visible: they could be learning, developmental or intellectual disabilities, or mental or chronic illness, to name a few.

But as common as disability is, not many people know how to talk about disability or how to interact with disabled people.

“To so many people, [disability] remains a mystery, this very scary and overwhelming topic,” says disability rights activist and writer Emily Ladau. “We don’t talk about it. We ignore it. We shy away from it. We hide it away. But that’s not what we should do when it comes to disability, because it’s just something that’s part of what makes people who they are.”

In her book Demystifying Disability: What to Know, What to Say, and How to be an AllyLadau shares thoughts on how both nondisabled and disabled people can collectively make the world a more inclusive and accessible place.

Emily Ladau is a disability rights advocate, speaker and the author of Demystifying Disability: What to Know, What to Say, and How to Be an Ally.

Ladau, a wheelchair user with multiple disabilities, points out that there isn’t a single story of the disabled experience. She says, while it isn’t disabled people’s responsibility to educate people without disabilities about the nuances of living with a disability, progress is made through dialogue.

“I believe that offering honest and sincere guidance and conversation remains a key part of the path forward for the disability. That’s how progress has been made by the powerhouse disability activists who have come before me. It’s how we will continue forward,” she writes.

We talked with Ladau about the sorts of guidance she would give to someone – disabled or not – who wants to be a better ally and help destigmatize disability in America.

What is a disability?

Disability is a natural part of the human experience, says Ladau. There’s no singular experience of what it means to be disabled, and there’s certainly nothing inherently bad or shameful about being disabled or having a disability. So the words disabled or disability? Use them. They are not bad words.

What is ableism?

Ladau defines ableism as “attitudes and actions that devalue someone on the basis of their disability.” It exists in many different forms and places. Ableism can be as small as someone asking about your disability by saying, “What’s wrong with you?” or as big as a lack of accessible public transportation that provides a disabled person a means to access employment, education or even healthcare.

One size doesn’t fit all.

Detail from the cover of Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau. Tyler Feder/Ten Speed Press

There is no one disabled community. As Ladau says, “If you’ve met one disabled person, then you’ve met one disabled person.” Every person with a disability has a unique experience with their own disability. Within Ladau’s family, for instance, she, her mom and uncle have the same rare genetic disability. But for each of them, the disability manifests and impacts them differently. One person’s experience may inform another person’s, but no singular experience reflects that of the entire community.

Learn and use the correct language.

“Language is one of the most important signals that we have to demonstrate our acceptance or rejection of a person’s identity,” says Ladau. In her book, she lists words that shouldn’t be used and offers terms that should be used instead. Here’s a rundown of some of her suggestions:

Chart that shares examples of what to say/not say from Emily Ladau's book:"Remember it's always best to ask a person what terms work for them based on their own lived experiences and identity ..."For example: "Say this: disability/disabled, person with a disability/disabled personNot this: differently abled (unless preferred), handi-capable, handicap/handicapped, special needs (unless preferred)"

Emily Ladau/ Ten Speed Press

Being an ally requires constant work.

“Allyship is not about simply holding the door for someone or using the correct terminology and then washing your hands off it, calling it a day and saying, ‘Hey, I was a good ally today,'” says Ladau.

It brings us back to the idea of reckoning with what a typical disabled person looks like and understanding how someone who is Black and disabled or transgender and disabled experiences disability differently than a white woman in a wheelchair.

“To me, being an ally looks like asking yourself ‘Who’s at the table?'” says Ladau. “It’s a constant learning process and that can be challenging, but when we know better, we can do better.”

Additional resources

Books

Movies

  • Crip Camp: A Disability Revolution (2020)
  • Sins Invalid: An Unshamed Claim to Beauty (2013)

Videos


The podcast portion of this story was produced by Sylvie Douglis.

We’d love to hear from you. If you have a good life hack, leave us a voicemail at 202-216-9823 or email us at LifeKit@npr.org. Your tip could appear in an upcoming episode.

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