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.