Powerful words from Carly Fulgham
Friday night, March 27th, I told my husband, “If I get COVID-19 and have to be hospitalized, don’t tell them I have Autism.” The next morning I woke up angry that I had to say that so close to the 30th anniversary of the Americans with Disabilities Act. March 12th marked thirty years since eight-year-old Jennifer Keelan abandoned her wheelchair to crawl up the steps of the US Capitol building to prove that people with disabilities deserved an equal chance in life. Thirty years later, it’s still an acceptable option to consider us less.
Doctors in Italy are “having to make hard choices” about who is worthy to get treatment, with age and disability being part of the discussion. I’ve heard these tough choices are being debated from Washington state to Alabama as well. When this ethical conundrum comes to my town, I hope that our medical leaders remember that in many cases, disability is just a label, and should be used as a criteria no more than race, religion or gender.
In addition to my autism, I have asthma that is bad enough that I have a greater chance of needing a ventilator. If I am so sick that I’m in the hospital, how are they going to know that besides the “Autism” written on my medical chart, I’m a wife and a mother to a two-year old? A Vice President at one of the biggest companies in America where I’ve just won a Global Diversity & Inclusion Award? A volunteer member of the Board of Directors of Autism Society of California, The Art of Autism, and Autism Society of America? The volunteer President of Autism Society of Ventura County where I’ve increased our program offerings more than tenfold in four years? How will they know all this when I’m alone and too sick to explain why my life matters?
Do you think I’m different from other people with disabilities? That my accomplishments make me the exception and not the rule? That my family will care about my survival more or less than another’s? When we’re desperate for oxygen, we all look the same. The only differences are the labels on our chart, like our disability and our age. We expect our medical professionals will not discriminate based on race, religion, language, age, or disability during normal times. We cannot abandon the basic human right to live now, no matter what label we wear. I’ve still got a lot more to give to this world.
I’m not done yet.
After six months in three different psychiatric hospitals, my darling daughter is finally out and living at home again. She still suffers from PTSD (made much worse by the hospitals themselves), but at least she is able to be with her family and her dog, see her friends, and breathe the open air.
We are SOOOO happy!
If you have a few minutes today, call or email the FDA and tell them it’s time to finalize their ban on the GED (electric shock devices). Disabled people at the Judge Rotenberg Center in Massachusetts are still being tortured with these horrible devices.
I mostly write about my older daughter–the one with autism–in this blog. But younger daughter has her problems too, and last week they became acute. She had been feeling off for about two months, with a persistent cough and fatigue. But then about ten days ago she called up and asked me to take her to the E.R. She was extremely pale and her tongue had a green (!) tinge. I got her there, they took one look and started the process of admitting her to the hospital. She was extremely anemic, and had a startling low number of platelets in her blood. Two days later, she was transferred to the Intensive Care Unit at Barnes Jewish Hospital in St. Louis (where, I have to say, they have been absolutely fantastic with her care).
The immediate problem was an extremely rare (2 cases in every million people–lucky us!) blood disorder called Atypical Hemolytic Uremic Syndrome, in which the immune system attacks the blood. She had to have repeated transfusions of blood and platelets, as well as an extremely scary drug that is the best treatment for AHUS, but increases the risk of contracting Meningitis by 1,000%.
After six days of intensive testing, during which she got sicker and sicker, they determined that the underlying cause was Lupus. Once they started treatment for that, there was an immediate improvement. She didn’t have to have lots of pain medicine and she could eat without vomiting. Last night she was visited in the ICU by a therapy dog. She was able to get out of bed and hug him, which made her (and us) burst into tears.
In short, the chaos continues here in the Midwest. But what a relief to have her feeling better.
I have talked before about the differences between “autism awareness” and “autism acceptance” but I will give you the (somewhat) shorter version real quick: “Awareness” is lazy. It requires no action. It is rooted in ableism and done for non autistic people at our expense. “Awareness” is self narrating zoo exhibits and violations of privacy…
via What is Autism Acceptance?: The “You Keep Using That Word. I Do Not Think It Means What You Think It Means” Edition — We Always Liked Picasso Anyway
There was recently a thread on Twitter started by Claire Ryan who tweeted: “When is giving a child an award at school, not an award at all?” – along with this excerpt about an autistic boy called Jack. Jack reported being anxious recently in assembly as school were giving out awards. He would sit thinking […]
via Autism: When Awards Can Be A Negative Thing… — Inside The Rainbow
Mike Stanton has written a blog entry about the latest atrocities at the Judge Rotenberg Center. Meanwhile, I’m wondering, how do we stop things like this in general, not just at the JRC? (None of the pictures on this page, if you are wondering, are of the JRC or any other institution that is named […]
via Extreme measures, and then some. — Ballastexistenz
This is a hard thing to write. But I don’t think that many people really love me.They claim that they do. They tell me I am great and they love my sense of humor, or my artistic abilities or my way with words.But when it really comes down to it, they don’t really love me.I…
via I Don’t Think They Really Love Me — We Always Liked Picasso Anyway