Disability Pride

Disability Pride by Ben Mattlin was a book that I downloaded from Edelweiss, which provides digital copies of books in advance of publication.  Mattlin's book is scheduled to be published in November 2022.  I feel privileged to have read it early.

 

  My review of Disability Pride appears below.

                                      

 

 I have written on disability topics previously on this blog.  Most of my focus in this area has been given to books dealing with deafness or deaf issues.  This was due to my co-blogger relationship with deaf author and fashionista, Tara Chevrestt. 

(Update on Tara: Tara is now primarily blogging about fashion at  Pin Up Gals , and I have re-shaped what was originally her blog called Book Babe as a blog dealing with books centering on strong female protagonists called Flying High Reviews.) 

 If you would like to see my posts about books dealing with disability see my review of Disabled People Destroy Science Fiction (which is a sarcastic title) here, my review of a novel about a mute woman protagonist here, my review of a novel taking place at a deaf boys' school in the UK here, my review of a novel about a 15th century non-disabled Jewish woman with a deaf father here, and my review of Inside Deaf Culture here.

The author of Disability Pride, Ben Mattlin, was born with spinal muscular atrophy.  He couldn't sit himself up as a baby, and he has never stood or walked.  It's a progressive disease which means his condition is worsening. Yet he is married, and they have two daughters in their twenties.

As a former New York resident I was interested to learn that there are only 124 subway stations that are accessible for disabled passengers.  There are a total of 472 subway stations.  In 2020 a federal judge ruled that the New York MTA must add elevators to every station that is renovated.   The MTA  hopes to make 70 more stations ADA accessible by 2024.

 The next issue that I need to discuss in the context of this review is support animals that are not allowed in the cabin during a plane trip.  This is supposed to be considered discrimination.   Airlines do allow animals that are small enough to sit on a passenger's lap or under the seat.  If they are too large to do either of those, I suspect it's probably a safety issue rather than discrimination. When food and drinks aren't being served, aisles must be kept clear in case of an emergency. I think that's common sense. 

This book mentions a 19th century individual with a disability who I think should be celebrated.  He is Thomas Wiggins, a blind man who toured performing music he himself had composed. Wiggins was invited to the White House to perform for President James Buchanan. I found a page on the Black Past website devoted to Thomas Wiggins here.

I also recently saw opera singer Andrea Bocelli perform on television and didn't realize that he was blind.  If I were a fan of Bocelli who followed his career, I probably would have. Although I enjoy opera, I admit that the performers whose careers I do follow are singers of either folk songs or popular music. 

I was shocked to learn from Disability Pride that in the 19th century it was illegal for disabled people to appear in public in San Francisco.  There were other cities where this was also a crime.  Chicago kept the law against disabled people on the streets longest.  It was enacted in 1881 and repealed in 1974.  Most disabled people were beggars which was considered a disturbance of the peace. People were actually arrested for the crime of being disabled and appearing in public!

Neurodiversity was coined in 1988 by an autistic Australian graduate student named Judy Singer.  It was derived from the term "biodiversity" .

According to the CDC, one in 59 Americans is autistic.  By the way, I had to figure out that Mattlin meant the CDC.  Sometimes this author's meaning needs to be deciphered.  He has a highly individual way of expressing himself.

I learned from this book that Greta Thunberg is autistic.  The author comments that idolizing famous autists like Thunberg is a distraction from normalizing neurodiversity.  Excuse me, I admire Thunberg for what she has done as a climate activist.  I imagine there are a great many people who don't know that she's an autist.  It seems to me that focus on Thunberg  probably doesn't impact the cause of normalizing neurodiversity one way or another.  But that's just me.

I would like to bring up a piece of litigation that was discussed in Disability Pride.  In 1995 two institutionalized women with disabilities sued the state of Georgia to receive treatment at home.  The primary plaintiff was Lois Curtis, an autistic Black woman.  Their doctors agreed that they would be able to live at home if they had the support to do so.  The state denied them, but it was appealed to the Supreme Court by Georgia's Commissioner of Human Resources, Thomas Olmstead.   The case was decided in favor of the plaintiffs.  Ruth Bader Ginsburg wrote the majority opinion which stated that people who needed treatment for mental illness that could be treated in a community setting, should be allowed to live in the community if that is their preference. Such individuals could not be institutionalized against their will.  I found a page from The Arc, an advocacy and education organization for disabled individuals, that honored Lois Curtis this past February in the context of Black History Month here .  I hope that Lois Curtis continues to be remembered as a pivotal figure in the struggle for the rights of disabled people.  

Although my notes on this book took up half a book journal volume, I've already included all the comments that were substantive.  I thought this was an interesting and insightful book, though as I've mentioned I sometimes had a hard time figuring out what Mattlin intended to say.