With that eye-catching cover, who can resist picking up Demystifying Disability: What to Know, What to Say, and How to Be an Ally by Emily Ladau (she/her). The cartoon depictions of people with disabilities are wonderfully diverse, and I could immediately picture the artist, Tyler Feder, creating a wonderful children’s book about disabilities. When I was growing up, I never saw anyone with a disability, until I got to high school, because disabled students were sequestered in their own room.
Ladau opens the book in a personable tone of voice, which made me receptive to what she had to say. Instead of telling, she asks readers what their experiences have been like, so we’re drawn in with questions like, “Have you ever shared a news story about a disabled person on social media because you felt warm and fuzzy after reading it?” or “Have you ever shushed your kid for asking ‘what’s wrong’ with a person who was using a wheelchair?” So, immediately I felt like my brain was engaged.
Pretty early on, Ladau covers first-person vs. identity-first language. This is a tough one! As a book reviewer who has some disabilities (hard of hearing, general anxiety disorder) that I’m only recently beginning to acknowledge out loud, I don’t personally have an opinion on how I want people to describe me. It does seem that when we write social media bios, we include facets of ourselves, but how many of us are thinking where to put which words?
Let me back up: Ladau gives the example of “blind person” (identity first) vs. “person who is blind” (person first). Because Ladau has a visible physical disability and uses a wheelchair, she does not separate her disability from her identity, thus she prefers identity-first language. And of course, the disability community is not all the same. I’m glad Ladau repeated this concept. There are over a billion people in the world with disabilities, she writes. Of course they don’t all feel the same way. My interest was more about hearing from a disable person and what she thinks about identity-first vs. person-first language, because it tends to be able-bodied people taking the lead on the conversation in an effort to avoid offense.
Although Ladau acknowledges how many disabled people there are — and they are the world’s largest minority — I felt the book was lacking in some representation, namely folks with severe mental disabilities. My feelings come from experience; in college, I worked as a home care giver to people with mental disabilities, and many had physical disabilities, too. Though there was a large range in how much disabilities affected the people I cared for, the majority of the time I was working in homes with people who were severely disabled, such as one woman in her thirties with cognitive development similar to a one-year-old baby. There were many people like her under my care. I’ve noticed that the books about disability that I’ve read lately never seem to discuss such individuals. Why not? Is it that these folks do not fit neatly into the conversation?
For example, Ladau talks about there not being a disability problem, but an accessibility problem. People with disabilities would exist fully in the world if everything were accessible. And on the one hand, she’s right. If you need glasses, you technically have a disability. But because we’re so used to, and have made space for, and normalized the fact that people cannot see and need a disability aid (glasses), we don’t even consider it a disability anymore. Why can’t all disabilities be thought of, normalized, and made space for, in the same way?
On the other hand, a lot of disabled folks who live in group homes like the ones I worked in were abandoned and became wards of the state as babies or children, or they had parents who kept them at home until the parent was too old to care fully for their disabled child. Ladau describes the inhumanity of keeping people in institutions, and I agree, but in many ways group homes, which are literally houses and apartments in the community, still do not have the ability to help a severely mentally disabled person be out in the community. Will this person remove their clothes in public, or grab another person, or become agitated and hurt themselves?
Honestly, though, as I write this I am coming over to Ladau’s side. Had the places I worked had more staff and fewer disabled people in each home (one house had six people, every one of them with mental disabilities and used wheelchairs), and maybe more money, we could have taken the residents out more often. Then again, there were also people who could be violent, and it was hard to take them out into the community because you didn’t know what the disabled person would do, but whatever it was, you were partially responsible as the staff.
I will say that Michigan, where I grew up, had several state institutions that housed people with mental disabilities who were considered too violent to live in the community, and that almost all of those shut down, including the one in my hometown. It is now an abandoned, spooky-looking building that could be used in a haunting movie. Was it the final chapter of America’s institution boom, where you could be put in a state home for being a childless woman? Was it an effort to integrate people with mental disabilities? I’m not sure.
But back to Demystifying Disability. Another section I appreciated was what Ladau describes as “calling out” vs. “calling in.” You know how it’s really popular to publicly shame people on social media? Uh, does that even work? Perhaps some people should be told publicly that they are saying some ableist stuff. But, other folks may not realize they did, so Ladau suggests private messaging that person, or “calling in,” to note what happened and ask that they consider doing better. Makes sense to me — society exists on modeling the behavior we desire to see, and studies prove that shaming people, for any reason, doesn’t work so great. The hard part, to me, is which words are considered ableist. I certainly try, but until recently I never thought saying, “That’s crazy!” was ableist. And if you lived in the 80s, “lame” simply meant “not cool” with no bearing on disabled people. It’s a battle, in some ways, to recognize where a phrase comes from but also to realize that language changes, and that is the nature of culture.
Demystifying Disability is a good starter book on disability, and while limited in scope, it does provide perspectives from a disabled writer and starts a conversation.
CW: shares examples of ableism and examples of ableist words to explain why they’re a problem.