I'm Autistic and This CDC Equation Says My Life Is Less Valuable If I Get COVID-19
By Mickey Rowe and Helen Marion
I’ve been looking forward to April 2020. The sun is shining here in Seattle, and my four kids have been chomping at the bit to run wild in the sunshine after another rainy winter. My beautiful fiancée farewells her 20s and turns 30 this month. I’m finally home after being away from my family off and on since January, first directing at the Tony Award-winning La Jolla Playhouse in California, then rehearsing and performing the title role in “Amadeus” at Syracuse Stage in New York. April is also Autism Awareness Month, and this year is the 30th anniversary of the passing of the Americans with Disabilities Act (ADA). April 2020 should be one the most peaceful and pleasant times of life for me: a fiancé, father and theatre professional who is legally blind and autistic.
But April 2020 sees the globe locked in the deathgrip of COVID-19. We see a medical system buckling under the weight of skyrocketing cases of a terrifying new illness. Medical facilities are experiencing dire shortages of personal protective equipment for their staff members, and therefore we are heartbreakingly seeing healthcare providers contracting and dying from the virus. Medical facilities are also experiencing dire shortages of the medical equipment they need to care for patients stricken by COVID-19, such as ventilators. In this current situation where there’s not enough necessary medical equipment, and with increasing numbers of HCPs contracting the virus, difficult decisions are having to be made as to how the limited available medical care is going to be rationed and allocated.
An increasing number of states and medical facilities are creating triage plans that recommend who should and should not be allocated lifesaving care. People with intellectual disabilities are discovering with horror that they are at the bottom of the list. I am relieved to know that my nondisabled fiancée and three of our children are deemed worthy of lifesaving care. I am simultaneously bearing the crushing weight of finding myself at the bottom of my state’s list, alongside my autistic 4-year-old. In this age of COVID, if push comes to shove, he may not be allowed to live long enough to achieve his dream of growing up to run his very own robot factory, simply due to his ASD diagnosis.
Decisions as to who is and who is not worthy of medical care are being made in light of the CDC declaring that people with disabilities are at higher risk for experiencing severe illness due to COVID-19. Decisions are also being made in light of the concept of Quality-Adjusted Life Years (QALYs), a concept and supposed equation discussed by the World Health Organization and others to determine how much less disabled people’s lives are worth than their non-disabled friends, neighbors, and family members. In their 2016 paper on Guidance for Managing Ethical Issues in Infectious Disease Outbreaks, the World Health Organization states: “In general, the focus should be on the health-related benefits of allocation mechanisms, whether defined in terms of the total number of lives saved, the total number of life-years saved, or the total number of quality-adjusted life-years saved.”
Ari Ne’eman is a disability rights advocate, an expert on QALYs, a fellow autistic person and a personal friend of mine. He described to the National Council on Disability what QALYs are and what they do, and it was published in their 2019 report delivered to the President. “The QALY works by weighting the lives of people with disabilities: If we were to assign autism a disability weight of 0.2, that [number] would mean that a year in the life of an autistic person would be worth 80 percent of a nondisabled person’s life. Different disabilities would get a different number, if you assigned 0.5 to a mobility impairment, then a year in that person’s life would equal 50 percent of a nondisabled life year.”
As a legally blind autistic man, father, and professional, I am here to say that my life provides just as much value to the world as yours does. My autism does not affect my respiratory health or immune system, but on this, the 30th anniversary of the ADA, Quality-Adjusted Life Years legally values me as less of a person just as black Americans used to be valued as 3/5 of a person.
While most non-disabled scholars and medical professionals acknowledge the ethical shadiness of QALYs, they claim to have found a simple mathematical solution. As two such experts, Luis Prieto and José A Sacristán state, “QALYs have been criticized on technical and ethical grounds […] Mathematically, the solution to these limitations happens through an alternative calculation of QALYs by means of operations with complex numbers rooted in the well known Pythagorean theorem.”
Did you catch that? The Pythagorean theorem…
People love to infantilize me. Even though I am 31, people treat me as though I am 14 in most workplace settings. Now it all makes sense, they were using the Pythagorean theorem to calculate my disability-adjusted life years, much like one would calculate their fur-kid’s “dog years.” I see now.
“Disability Gain” is a concept borrowed from the d/Deaf and hard of hearing community. Disability gain refers to the good that comes from a person’s disability; how it has positively affected their personality, world view, creative problem solving, tenacity, and more. What theorem or mathematical equation has the CDC created to take into account disability gain? What theorem has the World Health Organization created to take into account the way my four children love me or the way I love them? How many quality-adjusted life-year points does each kiss my children give me a day count for? Stop using a disability label to devalue people’s lives into dog years. Thirty years ago with the passage of the ADA, we fought to make this kind of identity-based discrimination illegal. Why is it back?
People with developmental disabilities are the most likely of any group to be murdered by their parents and caregivers. Though this rarely makes the news, one such instance did earlier this year when NYPD officer Michael Valva and his fiancée Angela Pollina murdered their autistic 8-year-old. According to the Ruderman Family Foundation in a report that documented more than 200 deaths from 2011 to 2015, at least one disabled person is killed per week by their parent or caregiver.
With my and many states Stay Home and Shelter In Place orders, people with autism like myself are more susceptible than ever to this parental abuse. If autistic people are not safe at home, shouldn’t we at least be safe in the hospital? We need to stop devaluing autistic people like myself. But apparently, our lives are worth so much less than our non-disabled parents and colleagues, with dog-year-style equations codifying how much less valuable than a non-autistic person our lives are.
People are often surprised when they find out my beautiful, non-disabled fiancée is not my caregiver, though we do both help each other in many ways. I may be legally blind but I still know that I am married to the most beautiful woman on earth. How does the World Health Organization equate for the algebraic unknown that is my fiancée and our love? Or the satisfaction we both get from our incredible romantic life? Yes, disabled people like myself are sexy. I’m not afraid to say it. And many likely have a better and more fulfilling sex life than you.
My life is worth living. I may be autistic and legally blind, but I am also engaged. I have four kids in my beautiful blended family — two biologically mine and two biologically my fiancée’s. We are a Brady Bunch for the 21st century — a disabled man and an immigrant woman of color. The love I share with my kids and my family is not less because I am disabled.
I may be autistic and legally blind, but I contribute to society (however one could imagine they are god-like enough to quantify that). I have had a prolific and varied career as an actor, a director and public speaker. I was the epicenter of significant publicity when I became the first openly autistic actor to play Christopher Boone, the lead role in the Tony Award-winning play “The Curious Incident of the Dog in the Night-Time.” This also made me the first autistic actor to ever play any autistic character in a professional performance setting. Yes, my life is as full and worth living as your own.
My tenacious pursuit of my goals and belief that our differences and perceived weaknesses are actually our strengths has allowed me to live my dream! I don’t want this to end simply because my life is not worth living in your eyes. I may be autistic and legally blind, but as a fiancé and a father I have worked hard learning how to effectively communicate in the face of differences through all types of relationships, professional and romantic. And now I get to give back, teaching best practices and changing the industries in which I work.
I have gotten to speak at organizations including the Lincoln Center for the Performing Arts in New York, The Kennedy Center in Washington, D.C., Yale School of Drama, The Gershwin Theatre on Broadway, the DAC of the South Korean government, and more. My life is not only worth living for myself but I have also used my life to make the world a better place for others, and would like to continue doing so. I founded the National Disability Theatre, which works in partnership with Tony Award-winning companies such as La Jolla Playhouse in San Diego and the Goodman Theatre in Chicago, to employ people with disabilities and show that we are not charity cases but fierce problem-solving professionals.
And I am not the only one. I am the rule, not the exception. My good friend Haben Girma, who also works at APB Speakers, is Deafblind and graduated from Harvard Law. Zack Gottsagen, who has Down syndrome, appeared on the Oscars for his rigorous work. Think how much more my disabled friends would achieve if our lives were valued and invested in by society.
Disability is the only minority group that is truly equal opportunity. Anyone can join our club at any time regardless of age, race, gender, or sexual identity. And should you be lucky enough to live long enough, you too will join our prestigious club.
According to Market Watch, 85 percent of college graduates on the autism spectrum are unemployed. I’m going to repeat that again, 85 percent of college graduates on the autism spectrum are unemployed! This isn’t because we are less capable, but largely because of social stigma and the expectations others have before ever even meeting us. Yes, we can graduate from college, but who would value us enough to pay us?
Autistic people are hard-working employees who tend to think outside the box. Though I’m currently underemployed due to COVID-19 restrictions, I am a proven leader, having taken only two years to turn National Disability Theatre from an idea I tossed out into a Facebook group for disabled theatre-makers into being partnered with organizations like La Jolla Playhouse, the Goodman Theatre and the Lincoln Center. I pitched and ultimately secured us funding from major donors such as the Ford Foundation and the Ruderman Family Foundation. This was by no means a simple task. I went to New York to have several one on one meetings and dinners with Lane Harwell, the head of Arts and Culture at the Ford Foundation. The Ford Foundation called on us to be better about representation so we responded with a hearty “Yes, and…”
After seeing my most recent show and learning of the associated diversity statistics, the Ford Foundation responded by more than quintupling our funding. I believe this to be a credit to my ability to effectively communicate a company’s unique mission, and to forge relationships with major donors. I was able to rally interest in and financial support for a brand new company of my own creation. Unfortunately, employers never learn this about me when they are scared to have an autistic person to an in-person interview. When society learns to accept and value autistic lives, they will learn so much more about our worth.
I believe the unemployment rate is so high for people on the autism spectrum because people do not think our lives are worth living or investing in. Those people are wrong.
Yes, triage is essential, especially in the age of COVID-19. But using a disability status alone to value someone’s life as less worthy of a ventilator is not only immoral and unethical, but illegal (per the Americans With Disabilities Act [ADA], Section 504 of the Rehabilitation Act [Section 504] and Section 1557 of the Affordable Care Act [ACA). And there are other options. As the National Council on Disability states:
“The lives of people with disabilities are equally valuable to those without disabilities, and healthcare decisions based on devaluing the lives of people with disabilities are discriminatory. […] There are alternatives to the use of QALYs […] such as value frameworks that use patient preferences to determine the value of healthcare treatments. […] Some stakeholders, but especially bioethicists and people with disabilities, have argued that QALYs are built on a faulty premise: that life with a disability is inherently worse than life without a disability.” (7)
And to those of you reading this who are on the autism spectrum; my one out of 54 who spent autism awareness month being told that your life is not as worth living as your neighbors and family members, who should calculate the dog years of their worth. What I ask of all of you today is: be brave, jump in headfirst even when you aren’t sure, and be brave enough to advocate for yourself when you need something. When it is scary. When you know you deserve equity even when the world tells you that you don’t. Will you fail? Of course! Sometimes! But will it be worth it? Yes.
If I hadn’t been brave and taken leaps I was afraid to take, I would have never gotten to be on stage in “The Curious Incident of the Dog in the Night-Time,” to speak at Lincoln Center, to star in “Amadeus,” to start National Disability Theatre, or be marrying the woman of my dreams. So please be brave, ask for what you need, and trust that sometimes if you take a leap, the net will appear for you. Go be incredible, ignore those who say that your life is not as worthy of love and support, and more than anything, be you!
I hope as our allies learn to value our lives we can move from Autism Awareness Month and towards Autism Acceptance Month. I hope we can move towards accepting autistic people as they are, accepting autistic people as valuable and accepting autistic people as equally worth investing in, not just in spite of but also because of their unique worldview and brain wiring. Our differences are our strengths.
For more on the coronavirus, check out the following stories from our community:
- If I Get COVID-19 It Might Be Ableism – Not the Virus – That Kills Me
- How America’s COVID-19 Response Is Exposing Systemic Ableism
- Why I’m Worried About Rationing If My Child With Down Syndrome Gets COVID-19
- What to Do When Your Child on the Autism Spectrum’s Routine Is Disrupted by the Coronavirus
- One Reason the COVID-19 Pandemic Might Be Extra Challenging for Autistic Adults