February 23, 2022
Source: National Public Radio (NPR)
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 or one out of every four adults 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 Ally, Ladau shares thoughts on how both nondisabled and disabled people can collectively make the world a more inclusive and accessible place.
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. [sic] 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.
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:
[List from Ladau’s book:]
What to Say
Remember it’s always best to ask a person what terms work for them based on their own lived experiences and identity. We’ll unpack some of the words and concepts from this table throughout the book.
Say this: disability / disabled
Not this: differently abled (unless preferred)
Say this: person with a disability / disabled person
Not this: handi-capable, handicap, handicapped, special needs (unless preferred)
Say this: has a disability, is disabled
Not this afflicted by, suffers from, victim of
Say this: person who is able to
Not this: high functioning
Say this: person who is unable to, person with high support needs
Not this: low functioning
[End of list]
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.”
Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann and Kristen Joiner
Disability Visibility: First-Person Stories from the Twenty-First Century edited by Alice Wong
No Pity: People with Disabilities Forging a New Civil Rights Movement by Joseph P. Shapiro
The Color of My Mind: Mental Health Narratives from People of Color by Dior Vargas
We’re Not Broken: Changing the Autism Conversation by Eric Garcia
What Can a Body Do?: How We Meet the Built World by Sara Hendren
Crip Camp: A Disability Revolution (2020)
Sins Invalid: An Unshamed Claim to Beauty (2013)