Autism, Human Rights, Neurodiversity

Change of Plan

Dear Folks. As you know, I’ve been working for years now on a book on autism and human rights. I’ve recently been looking for publishers, and one of them, on their submission portal, asked how long the book was. So I went back and counted words.

Whoops! It’s way, WAY longer than anyone is going to publish or most normal (autistic or neurotypical) people would want to read. Being who I am, I need to provide data to back up the points I make. But the data is making the book far too long. So–change of plan.

I’m going to take most of the data and detailed arguments about the data out of the book and put it on my other blog:  https://thatbloodycat.com

So if anyone wants to know why I make certain claims, the back-up information will be there.

If you’re interested, check out the blog.

Autism

Begging and the American Medical System

Mel Baggs, influential blogger and autism activist, suffered from a variety of serious medical problems that worsened over time.  On March 28, 2020, she posted the following on one of her blogs.  It is not written in her usual, carefully honed style—she was too desperate for that:

I am going to run out of crucial meds.  This is me shamelessly begging for money. . . . It needs to be real money, not a gift card, because we have to use it at the pharmacy.  If the pharmacy is open.  And it needs to be a whole lot of money because meds are expensive and we are running out of ones that will keep me alive. . . .  Please help please someone help ideally lots of people help.[1]

Mel died less than two weeks after she posted this.  She was 39 years old.[2]

Citizens of other developed countries, where there are national health services, may be shocked at how common begging for money to pay for medication and medical treatment is in the U.S., where we supposedly have “the greatest health system in the world.”  Begging for medical help is completely ordinary, hardly even noticeable here.  Stores routinely have jars on their counters, into which customers can drop spare change to help with “An’twan’s surgery” or “Mimi’s cancer treatments.” Often there are photos of the sufferers taped to the front of the jars to encourage generosity.  Religious and community organizations regularly hold fundraising potlucks and concerts to help families who just can’t afford the treatment their members need.  More recently, those in distress have turned to crowdsourcing, on online sites like GoFundMe.  And it’s important to realize that it is not just the poor who suffer and must beg.  Unexpected medical expenses are the most common cause of bankruptcies among middle class families in the United States, and these families, too, must sometimes plead for help.[3]  But for autistic people, this humiliating exercise is too often futile.  They usually lack the social support networks necessary for survival.


[1] Mel Baggs, “We need real money badly” on her Cussin’ and Discussin’ blog, March 28, 2020:  https://cussinanddiscussin.wordpress.com/2020/03/28/we-need-real-money-badly/.

[2] Neil Genzlinger, “Mel Baggs, Blogger on Autism and Disability, Dies at 39,” The New York Times, April 29, 2020.

[3] Gordon Burtch and Jason Chan, “Investigating the Relationship Between Medical Crowdfunding and Personal Bankruptcy in the United States: Evidence of a Digital Divide,” MIS Quarterly  43:1 (2019), 237-262.