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.
Grab the Lapels 
“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?”
This would be a great question to engage in with Moth. She works through a state program doing this exact thing. Only now the state is trying to insist that these people can also go out and be apart of the work force as well. Many of these people are severely physically disabled. How is it even fair to them to put them in that position?
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I had folks who had mental disabilities but also physical disabilities who cleaned tables at KFC, or other jobs like that. While it does get them out into the community, they are also the only group that you can legally hire for less than minimum wage. It’s a weird argument. Is the restaurant doing them a “favor” by giving them a job that they can’t always truly do, or is the restaurant ripping this person off? Some of the folks I cared for didn’t really, truly do their job and would have been fired if they were not part of a work program. I think the conversation is really complicated. I always have a “yeah, but” to each thing I think of, for both sides.
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I am sure there are some people who could handle it. However, she has several clients who are completely physically disabled as well and some who can become violent. I feel like they’re being set up for frustration and possible failure. On top of not being paid properly apparently. We haven’t even mentioned the cruelty of the public. They’re mean enough to everyone without disabilities, I can only imagine how they will treat people with disabilities.
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This sounds really interesting and informative. My experience with disability and people with disabilities is pretty limited. I’ve been trying to be more careful in my language so I definitely appreciate her idea of “calling in” and helping each other learn.
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Yes, I wish as a culture we would take a note from calling-in. I still remember when I was in college, probably in spring 2006, someone scolded me in front of the entire class for using “pow wow” to mean meeting. I grew up with kids from a Native American tribe. I lived on/nearby a reservation. It was typical lexicon of the time and area, and yet she came to college and decided to let everyone know she was not okay with what I said. And that’s what call-out does for me: I never forget, but I also don’t feel kindly about it.
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Ugh, yes, those call-outs are rarely helpful. And for some people, I feel like they can push them into a more extreme position because they get defensive.
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Loved reading this! Language is so hard because words like “lame” are so embedded in it and unquestioned. And for those of us who grew up using “lame” or “crazy” or what have you, it’s embedded in us too and so hard to weed out. I’ve been trying for years and I’ve gotten better but still constantly slip up.
Thank you too for talking about the identity issue. My husband is technically disabled (ADHD, MS) but does not identify as disabled. My sister is recognized by the government as disabled and receives disability because she can no longer work a full time job (rheumatoid arthritis) but she doesn’t identify as disabled either. It’s super easy to make assumptions about people by how they look or act and I am just as guilty as anyone. I am glad there are advocates out there writing good books and folks like you talking about it so we can all work together to make life better for everyone. 🙂
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If someone asks me if they can do something, I’m likely to say, “Go nuts,” and that would be ableist. I think the 80s did quite a number on language used in the past as slurs. They brought so much of it back.
The interesting thing about Deaf people, a topic I write about frequently, is that Deaf people do not consider themselves disabled but still must visit an audiologist every year to get paperwork signed to get SSI benefits, and deaf people DO consider themselves disabled.
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This sounds like a thoughtful and necessary book and you wrote an excellent review. I love the cover too. I read a cute picture book in storytime the other day with a little boy in a wheelchair in it (it was about a boy and his dog, told from the dog’s perspective) and the wheelchair wasn’t mentioned, he was just having fun with his dog, and I thought, It’s kind of cool how kids growing up now will get to see more portrayals of people with disabilities in books and tv and movies than we did growing up. Hopefully?
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I remember reading Lindy West’s book Shrill in which she describes who the fat female role models were when she was growing up. She listed Ursula from Little Mermaid and Lady Cluck from Robin Hood. I kinda laughed, because I had totally seen Lady Cluck as a role model. But just two? And that’s how Emily Ladau felt about representation, too.
Since the picture book did not discuss the wheelchair, I wonder if the author was coming from a person-first perspective.
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The discussion of language is fascinating. But lame – argh! I never thought of it like that but then what else could it mean? I heard my husband gently calling in a colleague on a language usage the other day and was proud of him doing that; it was in a one-to-one meeting. He’d been called in by private message when he’d used a term (I’m going to disclose it was “Chinese whispers” – he hadn’t used the n-word or something!) and appreciated that. Mind you, I sort of called out an author for the say they described only the races of non-White people and I should have done that more quietly, so we are all learning.
Do you think this book was applicable worldwide or very much based in a US context? And I’m not sure on my own language, too – I will say I’m prosopagnosic or I’m face-blind but I wouldn’t call myself a face-blind person or a person living with face blindness. I’d also say I have depression and anxiety. Maybe I’m hoping I could be without these things one day (not so sure about the face blindness!!).
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Maybe “unable to recognize faces”? Or whatever the technical name for it is? It is interesting in these comments that we’re all assigning weight to the words and phrases we use, suggesting some are worse than others. I think Ladau takes the same approach in her book, though one group is blatantly offensive and the other is words that have made their way into our language that we’ve changed the meaning of.
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I’d definitely say I’m prosopagnosic rather than someone [living] with prosopagnosia. When I use the technical name I usually then say “That’s face blindness” though! And yes, there are interesting gradations, aren’t there, and also words the person with lived experience can use that others can’t.
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In my school days, beginning in the 1950s, it was common to have one or two polio sufferers in school, in ordinary class but needing wheelchairs and special desks. In the country towns I lived in children with Downs syndrome were kept home. I don’t know what happened when mothers got too old – mental institutions I guess. When they were closed and ‘moved into the community’ the impression I got was that it was mostly cost cutting.
One of my sisters in law lives a very productive life on a disability pension, which she acknowledges, but I’m not sure I’d be brave enough to ask does she consider herself disabled.
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It’s interesting that the kids who had polio and were in wheelchairs were in class. Well-known disability activist Judy Heumann also had polio and was in a wheelchair, but she said such kids were kept in a class in the basement.
Bill, are you afraid of your sister-in-law, or how she might feel about that question?
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I love your reflections here. My highly-under-informed two-cents: I think we know so little about mental health and related disabilities that it’s a much more challenging topic to handle. I support Ladau’s choice to focus primarily on physical disabilities. Often, the two are entangled. But we’re only starting to crack the nut on mental health. What can we control? What can’t we control? What can be controlled through specific disciplines or diet or medication? I feel like daily mental conditions are being retagged and refocused and mean something new. By focusing on physical disabilities primarily, Ladau ensures her critical community’s voice is heard and that this book will remain relevant until the problem is solved.
The challenge with mental health (just like diet!) is that it’s so new (in the grand scheme of research and such) published content is becoming out of date before the ink dries. I’d love to explore mental disabilities from the lenses you mentioned above Ladau explores. But perhaps it’s so complex it needs its own space?
(Totally added this to my TBR. It sounds awesome!)
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Hmmm, but you could argue in the same sense that our understanding of physical disabilities is just as new. For instance, there have always been people with schizophrenia, but how the medical system understands their disability and how they are treated changes. People in wheelchairs were often put in special education classes out of sight, regardless of their cognition. In that sense, neither are new, but part of that is we are always, always guinea pigs. I have had medical treatments performed on me that no one does anymore. Even something like metal fillings — those are gone. I guess, more specifically, when I say “mental disabilities,” I don’t mean mental health, which can be improved with physical activity and a balanced diet, friendship and secure housing.
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I’ve thought about your question on the absence of people who are profoundly disabled a lot in the context of both work and the autistic community (which, as I think I recently said on one of Bill’s posts, is a weird place that I don’t spend a tonne of time). I have a lot of thoughts though I may of course be wrong.
I think part of the reason books like this don’t address people with very complex issues is because they go against some of the ideas inherent to disability activism. Disability activism, for understandable reasons, usually uses the social model of disability. A purely social model of disability means that society can be blamed for everything that disables a person (e.g. not providing a ramp for someone with a wheelchair, or not providing an interpreter for someone who is Deaf). The medical model can be quite paternalistic, and is much more focused on treating/managing/curing the condition. A social model of disability gives disability rights campaigners something concrete to argue for (step-free access/better interpreting). Someone with significant learning and physical disabilities, who may struggle to communicate, be unable to breathe without ventilation, and experiences chronic and difficult-to-manage pain, doesn’t fit nicely into that narrative and confounds the idea that “people with disabilities” would be fine if society was just less ableist – as if that is one homogenous group. It would be wonderful to be able to cure some disabilities – ones which cause chronic pain, severe cognitive impairment, profound sensory sensitivity etc – things that cannot reasonably be solved by societal change. That is a bit of an inconvenient truth, though, and I think a lot of the most vulnerable disabled people are often ignored by disability rights activism as a result.
I’m not saying that’s specifically what’s going on with this book/author at all, but I think it strongly influences disability activism and thus a lot of individual writers and activists are unconsciously influenced by it in turn. (The autistic community is one of the worst culprits for this, which is why I have thought about it so much!)
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Yes! Oh, Lou, I’m so glad you’ve weighed in because you’re saying things that I’m thinking but can’t put all together. For instance, I know a person who had a baby that was born several disabled. They said he had no brain activity. And yet he eventually went home from a big specialty hospital (about 130 miles away) with a ventilator and a helmet and special seating and a 24/7 nurse. Every couple of months he would nearly die and be raced, via ambulance (in America, holy moly) back to the special hospital 130ish miles away. To this day, this still happens, and he’s now old enough to be in public school. And due to the law in the U.S., he does, in fact, go to school. But he sits in school. I’m not even sure he knows he’s in school, though I hope he does and the change of scenery brings him joy. He has accessibility rights (go to school, 24/7 nurse), but none of that will make him this fully realized person that disability activists talk about.
As I’m writing, I’m thinking, which always happens to me. And what I think is that some disabled people are trying to say don’t make assumptions about the disabled people you see, because many of them are doing amazing things, but you don’t see them as a person. And I think that idea — to see someone as a capable person — is different from categorizing most disabled people as held back by society alone.
I know you’ve written before about the ways the autism community makes you cringe. I know it’s frustrating when one vocal group starts to represent the whole, and all you can think is, “Please stop.”
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Yes, absolutely – I think “don’t make assumptions” and “make society more inclusive wherever possible” are both very reasonable messages, and different from “the only thing holding disabled people back is society” – but I have explicitly heard the latter at least in the context of autism, and it’s just not true for all autistic people!
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I don’t recall you ever speaking about your job working with people with mental disabilities in the past, although I’m not surprised – it speaks to your empathy and interest in this subject. You are a lovely person who cares about others and this fits right in with that. No doubt that was a challenging job – I think we should, as humans, all work with people with different abilities, the world would certainly be a better place if that was the case, and you are the perfect testament to that.
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Ahhhh, probably because it was long before my blogging days — like 2003-2005. I graduated high school and started in the summer and worked through the school year in evenings and on weekends as I could. Eventually, I switched to a midnight shift (11pm-9am) and just went to school all day, did an evening snoozle, and went back to work again. I would not recommend that.
At the time, it could be easy to get upset with how ridiculous some people seemed (and some of those people were coworkers), but looking back, I did get a lot of perspective from that job.
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working the night shifts! Girl I didn’t think I could be anymore impressed but now I am!
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Don’t be impressed, it was awful. And I definitely fell asleep, like, twice, which is a termination-worthy offense. Other direct care facilities let employees sleep overnight, though. I mean, if you think about it, a person living with family wouldn’t be stared at all night. The family would sleep. But, if they’re paying you (like $8.15 per hour, LOL), then you have to be awake.
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I’m sure everyone falls asleep at least once – you are only human after all 🙂
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