Reading with My Ears Book Review
I have read a lot of books about disability. Some were fiction while others nonfiction. Some were biographical, technical, historical or medical in their approach. Others more laid back and conversational in tone. But the book, “Demystifying Disability: What to Know, What to Say, and How to Be an Ally” by Emily Ladau was one of the more real, true to life and informative books I have read on disability so far.
In the audiobook read by Emily herself, she provides an approachable guide to being a thoughtful, informed ally to disabled people. She gives real actionable steps for what to say, what to do and what not to do. Through her kind but candid tone, Emily shares how you can help make the world a more inclusive place. .
I was excited to read this book. Partly because of my previous interaction with the blog Rooted in Rights, where Emily formerly was an editor. But more importantly because I am disabled and wanted to hear her strategies on how people like me can learn and find the language to interact with people who are not disabled.
Definition of Disability
In the first chapter Emily gives her definition of disability along with other advocates and the ADA’s official language. While reading, it dawned on me that I don’t have my own version of a disability definition. I have just gone with the status quo and/or the legal definition. Yet, one size fits all doesn’t work in the disability community. We are as diverse and different as any other community. For so long society has used a broad paint stroke however in reality that doesn’t work. It depends on the individual.
Additionally, there is no single way to talk or think about disability. Emily said the way we talk shapes how we think; and the way we think shapes how we talk. For example, some people don’t want to use the word disability because it has a negative connotation. We are socialized to think that way.
Terms and Labels
But it is unavoidable because we are still disabled in the end. There are nondisabled people making up terms for our community. Terms like differently abled or handy capable. Rather just ask for what the person wants to be called.
In my world, phrases like legally blind, low vision, sight loss, visually impaired, blind, and vision loss are the terms most often used. I prefer the word blind because it is clear, simple and to the point.
She cautions readers the usage of labels. A very popular label is high functioning verses low functioning. This kind of label pits one disability group against another. For the sake of this review, I am considered high functioning because I can read, write, manage my daily activities, work, etc. I need very little assistance from others to maintain my life. But viewing me this way can be harmful because it looks down on others who can’t do the same. At the end of the day, we all have some kind of limitation.
Also, services have been denied me because I am too independent or high functioning leaving me to fend for myself. We have to take into consideration over time this situation can change. As I get older I might need more assistance because of aging with a disability.
Remove Negative Words
Emily encourages us to Work on removing negative words from our language. Harmful words like stupid, idiot , lame, crazy, midget, albino, insane, retarded, crippled and dumb. A recent example of this is when the music artist, Lizzo changed her song, “Grrrls” to remove the damaging word “spaz.”
She explains disability is not an insult. Phrases like quit being so OCD, what’s the problem are you blind, and falling on Deaf ears can enter our psyche without us realizing it but in the end can be toxic. Now this can be confusing because some disabled people reclaim these words, terms and phrases. So, it is best to use safe words and ask the disabled person what they want to use.
Now with that being said, let’s look at disability identity. Emily describes disability identity as a pizza. The crust is the foundation; it is who you are. The specific toppings of meat and veggies make each pizza unique. No two slices are exactly a like, cut a pizza and one slice might have more pepperoni or olives on it than another.
Some people choose to identify and make it known they are disabled. They might even fully immerse themselves in the disability community. Others might identify only when it is necessary. Still others might not identify at all. Then we go even deeper and address intersectionality where you have a disability along with something else. I am blind, female and Black. That makes me a member of three different marginalized communities.
Her chapter on disability history touched on the story of Judy Heumann, which I talked about in a previous post. She also highlighted the Ugly Laws, advancements in educating disabled children and of course the ADA. She noted several laws before the ADA which amazingly I was already familiar. As a high school senior, I worked part-time for the Department of Health and Human Services/office for Civil rights. There I learned about the Rehabilitation Act of 1973 and Section 504. I typed up lawsuits based on discrimination and assembled paperwork for voluntary compliance. Who knew in 10 years I would be recalling this work experience as I navigated my own disability.
She presented a timeline featuring the closure of shelter workshops and the launch of the Autistic Self Advocacy Network. The Communication and Video Act opened up audio description and more accessibility to the internet and phone apps. She remarked on the Able Act and how it provides more financial control allowing disabled people to save money without penalty.
She devoted a whole chapter to ableism. I liked the fact she owned up to her own missteps. As people with disabilities, we can be insensitive to other disabled people too. Ableism can exclude us from larger discussions of injustice. Since many of us carry multiple identities we must be included in other social justice movements too.
The Curb Cut Affect
When we think of the disabled the immediate thought is ramps and elevators. But accessibility is having full use and experience of the product or service. Accommodations are provided and come in many forms. Accessibility is not about special treatment but providing equality so that all people can take full advantage. Everyone can play a role in making the world more accessible and everyone can benefit.
Think about the curb cut affect. Initially curb cuts were for people in wheelchairs only but today all kinds of people use them. Parents with baby strollers, People rolling backpacks or luggage on wheels. Another example is audio description. This technology was designed for people with vision loss to enjoy and understand movies and TV but sighted people also use it when multi-tasking and not actually watching the screen. To make the world more accessible and inclusive we need more figurative curb cuts.
What do I do when I meet a disabled person? This is the million dollar question. There are guidelines to disability etiquette however don’t over think it. Ask questions and be open to learning and receiving instruction. Don’t make assumptions about what people can and can’t do. People that insist on helping cand cause more problems in the end.
Emily warns abled body people to not assume we are faking our disability. I have come across this one a lot. People assume I can see more than I can or I’m not blind at all. I get the response, “Well, you don’t act like a blind person.” My reply is, “how does a blind person suppose to act like?” People are looking for the stereotypical image of what they have seen in the media . But blindness doesn’t work that way.
Disability in the Media
Which leads me to disability in the media. We don’t have nearly enough true to life images but plenty of media tropes. Such as inspiration porn which objectifies people with disabilities to help people feel good about themselves. It is those stories of people who overcome their disabilities against all odds. We buy into inspirational porn because we have been told disability is a bad thing and living with a disability is exceptional. I have even fallen prey to it myself by being inspired by other disabled people , it is everywhere
Final Thoughts on Becoming an Ally
Reading this book is just one important step and not the conclusion to becoming an ally. None of us are experts on disability. Being an ally is a show don’t tell approach. But ask yourself why first. What is your motivation? Are you feeling guilty, pity or wanting to be helpful? These reasons can be self serving. Help is a stereotype about the disabled community. We are not always helpless or in need of saving.