Looking for writings on chosing to have a disabled child

February 2, 2022 12:48 PM

I am looking for writings, essays, blogs, etc, nonfiction, from people who know there is a good chance their child will be born blind, or deaf, or in other ways different, but choose to have the child in spite of this.
posted by anonymous to Society & Culture (9 answers total)

This was a major plot point of the series Bonus Family (available on Netflix). Fiction, of course, but the differing views are discussed quite heavily.
posted by Capt. Renault at 12:57 PM on February 2, 2022

Far from the Tree is a great read
posted by pando11 at 1:04 PM on February 2, 2022 [7 favorites]

There was just an essay about this in the New York Times yesterday.
posted by FencingGal at 1:05 PM on February 2, 2022

The Last Children Of Down Syndrome from the Atlantic last year kind of fits this, iirc.
posted by pepper bird at 1:38 PM on February 2, 2022

Consider readings from disabled PEOPLE as well. There is a huge issue within the disabled community of able bodied parents speaking FOR disabled children/people. I presume you are coming at this for choosing to have a child and be a parent, but it's important as a parent to understand your child's experience and not just read from other able bodied people, which often ignores the entire disabled experience.
Imani Barbarin and Alice Wong are amazing disability activists. They often write and share first person experiences, threads, essays, articles, and more. DisVisbility specifically shares disability centered media.
ETA disabled people are also often parents to disabled children and I'm sure there are writings about it.
posted by Crystalinne at 2:50 PM on February 2, 2022 [21 favorites]

In the vein of "nothing about us without us," you should consider accounts by people with disabilities, particularly relating to their experiences as children. The Disability Visibility Project has a great trove of these accounts.
posted by mandolin conspiracy at 2:53 PM on February 2, 2022 [6 favorites]

Heh. Or, what Crystalline said above!
posted by mandolin conspiracy at 2:55 PM on February 2, 2022 [1 favorite]

Waiting For Gabriel

Expecting Adam
posted by Kangaroo at 3:21 PM on February 2, 2022 [1 favorite]

Jessica Kellgren-Fozard is a fantastic Deaf/Disability activist that has many videos and a playlist about Deafness, and is a parent. She has spoken a lot about the intersection of parenting and disability. My tired brain forgot to include her earlier. (ETA Nyle DiMarco is a great Deaf activist as well.)

Also I'm just going to quote a 1 star review for Far From The Tree, because these are the exact issues within the community that I am speaking of, and it says it all in a perfect way. I have not read the book, I am not Deaf, but I don't think I would recommend it based off the quotes from the book.

As the hearing girlfriend of a profoundly deaf person, I’ve been recommended this book by several people. I just finished the chapter on Deafness (the second chapter of the book) and ... wow. The conclusion he comes to is breathtakingly simplistic and frankly asinine in its language choices and false equivalencies.

“You can admire Deaf culture and still choose not to consign your children to it. The loss of diversity is terrible, but diversity for the sake of diversity is a lie. A Deaf culture kept pure when hearing is available to all would be equivalent to those historical towns where everyone lives as though it were the eighteenth century.”

.......... First of all, parents often make choices based on what’s best for them not their children. As he concedes earlier, a choice to implant a toddler is often for the parents’ benefit so they don’t need to learn sign language. In one lazy swoop, he devalues Deaf culture and the lives of deaf people. Why bother with all that when you can just genetically and/or surgically modify deaf fetuses and children?

People with hearing loss don’t choose to be part of Deaf culture for the sake of diversity. They choose to be part of it because of the innate human desire to celebrate and engage with their identity — this is literally the premise of his book. How is this “a lie”? I don’t follow this sentence.

Lastly, it’s utterly irresponsible and offensive to compare upholding Deaf culture to living in fake historical communities. Much less call it equivalent! Deaf people use adaptive technology to enable them to live in a world functionally built for hearing people. They certainly aren’t hiding in backward-looking colonies trying to recapture life in a simpler time. A person (a parent, a child) has every right to forgo an invasive surgery or in vitro modifications (which he seems to believe is the way we will and should eradicate deafness). Oral culture isn’t necessarily the future. Hearing isn’t destiny. He could just as easily (more easily!!!) reached the conclusion that a hearing world kept inaccessible when accommodations can be made available to all is the equivalent to those historical towns where everyone lives as though it were the eighteenth century. That would have been a far more apt comparison.

Regardless of all the awards this book apparently got, I don’t know if I want to read the rest. I’m really not inclined to read 600+ more pages of Andrew Solomon’s thoughts on marginalized identities now that he has made his agenda and bias so clear. And while I understand that he, perhaps for framing or ego purposes, he decided to superimpose his own narrative as a gay man onto his “study” of these other horizontal identities, his choice to also impose his opinion and judgment on these other identities is distasteful to say the least.

posted by Crystalinne at 2:19 PM on February 3, 2022 [1 favorite]