When I was going through a very difficult time earlier this year and dealing with severe grief, loss, and ableism (as a person with PTSD/CPTSD, and thus, a person with a trauma history) a family member said to me:
“I understand PTSD because I have interviewed people with PTSD.”
Which is a bit like saying “I understand the experiences of Black people because I have Black friends” if you are white.
In other words, it’s toxic positivity horseshit.
Here’s a little video that explains it better than I can.
When I was about six years old, my family and I went on vacation to Martha’s Vineyard. We did this probably once a year. Our favorite beach was Lucy Vincent Beach, which is in the town of Chilmark, Mass.
Part of the beach was once a nudist beach. It still might be, I don’t know. So it was quite common in the 1970s to be just hanging around, building a sandcastle or whatever, and to have a naked person walk by.
On this particular visit to Lucy Vincent, possibly in the summer of 1978, I was in the shallow surf on my own watching the minnows. I’m sure of this because all I ever did at any beach in the 1970s was watch the minnows. And the horseshoe crabs, hermit crabs, sand bugs, and anything else alive and moving and non-human.
I looked up at one point because a small crowd of kids had gathered just where the surf met the sand. I usually avoided crowds of kids as a general rule when I was a kid because I found them to be overwhelming, scary, and confusing–especially if they were kids who I didn’t already know and/or who weren’t my friends.
My preschool teacher noted this in a written progress note to my parents in 1975, which I still have:
“Katie prefers to play quietly in the corner with one or two special friends.”
However, on this occasion, at Lucy Vincent, I was intrigued by the group of kids, not one of whom I knew.
I was intrigued because they had gathered around a woman. This woman was naked, which, again, was completely normal for the place and time. The kids were not gathered around her because she was naked.
The kids were gathered around her because she only had one leg.
And she was standing (with a crutch) right where the surf met the sand, answering questions about why she only had one leg.
I was hooked.
I left my minnow friends and I got as close to the group as I could without attracting attention. And I listened to this woman explain that she had been in a car accident and had been badly injured, but she had survived because smart, skilled doctors “took her leg.” We all learned the word for this: “amputation.” We all learned that sometimes injuries can be really, really bad but that doctors know what to do and want to help.
The conversation ended with the woman taking a few last questions. She then said she was hungry and was going back to her husband and her stuff for a sandwich.
I went back to my minnows.
Honestly, I barely thought about that encounter again.
I NEVER thought about it again, in fact, until the summer of 1990, when I received a letter at camp from my Dad in which he mentioned it.
I received a lot of letters from my Dad at camp. But even more than usual–and much, much longer letters than usual–in the summer of 1990.
My Dad wrote:
“On the Vineyard, watching you talk with the lady with one leg, and your openness about handicaps. That sensitivity that is still with you.”
My Dad was a public school special education teacher. He had spent the last year, prior to writing the above letter, working hard to get the Americans with Disabilities Act passed into federal law. It was signed into law by the first President Bush (George Herbert Walker) on July 26, 1990.
My Dad died eleven days later. At the age of 50.
My age today.
I did not know, until I received his letter at age 17, that he had watched me talk to the lady with one leg in 1978.
I bring this story up tonight because I would like to share something else with you.
One word: Ableism.
John Fetterman, the Democratic candidate for U.S. Senate from Pennsylvania, had a stroke in May. He debated his rival candidate recently, as you may know. He had some struggles speaking during the debate, which you may also know.
Strokes can cause damage to the brain. Strokes can lead to various disabilities, including aphasia.
According to the Mayo Clinic, aphasia is “a language disorder that affects a person’s ability to communicate. It can occur suddenly after a stroke or head injury, or develop slowly from a growing brain tumor or disease. Aphasia affects a person’s ability to express and understand written and spoken language.”
It has nothing to do with “intelligence.”
Therefore, in honor of my Dad’s work on the ADA and with deep gratitude to a naked woman with one leg on a beach in 1978, I recommend the following article.
My deepest gratitude also to my cousin (actually, my Dad’s cousin) Jane Stoddart,
and to my friend, fellow educator, and fellow warrior in the fight to live every single day as best we can with our shitty chronic conditions, Angie Federici,
for inspiring me to write this post.
If you are interesting in reading more about the affects a stroke can have on someone’s speech and language, this is a good article based on current neuroscience: