Book Review: Disability Visibility

Edited by Alice Wong.

How do you know if what you are feeling is who you innately are or if it is a part of your disability?

How do you navigate life when you are at the intersection of queer, disabled, and Black culture?

What do you do when someone says to you, “It’s better to kill an infant than let it grow up to be like you?” Unthinkable, but it really happened.

These are all questions that Alice Wong gathered and published in this truly amazing book. Instead of her talking about these people, she let them talk about themselves. In some cases the pieces were written specifically for the collection, and in other cases she gathered eulogies and previously published pieces to incorporate people.

Although all of the pieces are amazing, the most astonishing to me was the first, written by Harriet McBryde Johnson. Originally published in the New York Times in 2003, McBryde’s piece outlines her open debates with world-famous philosopher Peter Singer. A professor at Princeton, Dr. Singer was renowned as a pro-animal philanthropist. He believed cruelty to animals was unspeakable, so imagine Johnson’s surprise when he said that it was cruel to actually let a baby live if the baby was going to grow up to be severely handicapped.

Apart from the ideas of eugenics and infanticide, which are more than disturbing enough, Johnson outlines how this made her feel. Her life was difficult, sure, but she did not hate her life. She was intensely intelligent and driven. She was brave, ambitious, and passionate. Was her life really SO terrible that a baby should be killed instead of growing up into someone like her?

This issue is resurfacing now that parents can see the genetic makeup of their children very early. Doctors can tell expectant parents whether their child has down syndrome or dwarfism or any other disabilities, and parents actually have the option of saying that they do not want to see the pregnancy come to completion. Often, the reason given is that the children would suffer too much. Perhaps it’s also that the parents feel THEY would suffer with anything other than a “perfect” child.

Reading Disability Visibility is hard because the stories are painful. However, they are also immensely truthful and important. Whether you are disabled or not, it is a book that will slap you in the face and awaken you from the reverie that we are all treated equally in this world.

I wish Alice was still here so I could send her a thank you for this book. Hopefully she picks it up in the atmosphere.