(By Albina Gavrilovic_Shutterstock)
By Mickey Rowe
This year we have seen the globe locked in the death grip of COVID-19.
This year I have seen a medical system buckling under the weight of skyrocketing cases of a terrifying new illness. Medical facilities are experiencing dire shortages of essential personal protective equipment like masks for their staff members, and therefore we heartbreakingly see 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 these situations where there was not enough necessary medical equipment, and with increasing numbers of nurses and doctors contracting the virus, difficult decisions had to be made as to how the limited available medical care was going to be rationed.
An increasing number of states and medical facilities created triage plans that recommend who should and should not be allocated lifesaving care. People with developmental disabilities like myself discovered with horror that they were at the bottom of the list. I was relieved to know that my non-disabled fiancée and 3 of our children were deemed worthy of lifesaving care. I was simultaneously bearing the crushing weight of finding myself at the bottom of my state’s list, alongside my autistic 5 year old. In this age of COVID, if push came 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 autism spectrum disorder diagnosis.
One example of this was recorded at St. David’s Hospital in Texas as they refused COVID treatment to Michael Hickson because he was disabled. As the doctor spoke, Michael’s wife Melissa Hickson turned on her phone and began recording:
- DAVID’S DOCTOR: The issue is, will this help him improve his quality of life? Will this help him improve anything? […] and the answer is no to all of those.
MELISSA HICKSON: What would make you say no to all of those?
DOCTOR: Cause of right now, his quality of life–he doesn’t have much of one.
MELISSA: What do you mean? Because he’s paralyzed […]
MELISSA: Who gets to make that decision whether someone’s quality of life, if they have a disability that their quality of life is not good?
DOCTOR: So it’s not me, I don’t make that decision. However, it’s will it affect his quality of life, will it improve his quality of life and the answer is no.
MELISSA: Why wouldn’t it? Being able to live isn’t improving the quality of life?
DOCTOR: […] His quality of life is different from theirs. They were walking and talking people. And I don’t mean to be frank or abrasive or anything, but at this point, we are going to do what we feel is best for him along with the state and this is what we decided.
Michael Hickson was a father of five. He was starved to death in the hospital.
I know, in your life, people tell you that the things that make you different are shameful. They aren’t. I know that in your life society tells you that you should just fit in and make the things that are different about disappear. Don’t listen. Be you.
I do not think this doctor at St. David’s is a villain or an evil person. I think he was ignorant and doing the best he could with what he knew in the moment. That is why we must share articles like this and educate people!
In the UK both the Care Quality Commission and the National Health Service sent warnings out to doctors after people with developmental disabilities were having blanket do not resuscitate orders placed on them. The memos explained that a developmental disability like autism does not automatically necessitate a do not resuscitate order, and that such decisions being made without input from the patients or their families is an unlawful breach of human rights. It is appalling to me that so many doctors, with their oath to do no harm, thought it was perfectly reasonable to decide to not help patients with developmental disabilities during the COVID pandemic. It reeks of assuming that people like me would not want to be resuscitated anyway, because who would want to live with autism? Society tells us people are better dead than disabled, right? Make disabled people and even the word disability disappear, right? It is one thing for society at large, that may not be well educated on disability or ethics and has no obligation to save anyone’s life, to think that it’s better to be dead than disabled. To want so desperately to make disability disappear so they don’t have to look at it or think about it. But it’s especially sickening when medical professionals, who study for years to have the ability to save lives, also agree that it’s better to be dead than disabled.
Can you imagine how advanced society would be right now if all through human history women were allowed to have jobs, Black people were not being put in menial positions, and disabled people were not either being killed at birth or put in institutions? Can you imagine where we would be as a society if everyone, with their diverse lived experiences and brain wirings, had been allowed to contribute to society? As Stacey Park Milbern said before her passing, “Ancestorship, like love, is expansive and breaks manmade boundaries cast upon it, like the nuclear family model or artificial nation state borders. My ancestors are disabled people who lived looking out of institution windows wanting so much more for themselves. It’s because of them that I know that, in reflecting on what is a “good” life, an opportunity to contribute is as important as receiving supports one needs.”
We live in a time where hatred, vilification, separation, and us vs. them are held up above love and unity. Compassion and empathy can change the world. We all must learn from each other. There is something everyone can learn from you and you can learn something from everyone else and only together can we unite, bring hope to, be a light for, and heal this world. To condemn someone before you understand them only divides us more. Only makes that divide of misunderstanding greater. Slow down. Listen. Your greatest enemy has something they can teach you, and you have something you can teach them too. We must in all things work for understanding, not for a greater divide. Scarcity mindset leads to a lack of morality and greed. There is enough. You are enough. In every single interaction are we fighting for greater understanding or greater divide?
It is so easy to place the blame for all the world’s problems on those you disagree with most. Instead we must all work for hope. For unity. For healing. We must do this because no one ever thinks that they are the bad guy. Everyone always sees themselves as the hero who is in the right. Even those who commit the worst atrocities truly feel that they are acting on the side of good. At the least we must fight for deep mutual understanding.
If we did this, maybe the government would care as much for the working class and our planet as it does for the stock market and the mega rich. We have the technology. The wealth is out there. The only question is do we have the morality.
Being brave means being brave enough to act with an open and vulnerable heart. Being brave means being brave enough to choose love over anger and fear. You can be the change. If your voice didn’t hold any power people wouldn’t work so hard to make you feel so small.
We have hope now as President Biden has committed to vaccinating 100 million people over the next 100 days. This will save the lives of so many disabled folx. However, a 2020 study found that only 50% of Americans currently plan to get a COVID vaccine when it is available. This falls far short of the 70% immunity that epidemiologists say society needs in order to break the pandemic. This isn’t just isolated to America. “Vaccine hesitancy” made the WHO’s 2019 list of 10 major global health threats. Most of those who aren’t planning on getting the COVID vaccine have made this choice due to fears that it will cause autism. While there have been zero credible scientific papers linking vaccines to autism, let’s for a moment just imagine that vaccines did increase your chances of autism. We know that they don’t but let us for a second imagine that they did. My life has not been a death sentence. Being connected to a ventilator while your lungs fill with fluid because of COVID-19 or any other preventable deadly disease IS a death sentence. But my life has been beautiful. I have starred as the lead in the Tony Award Winning plays The Curious Incident of the Dog in the Night-Time and Amadeus. I have traveled the world giving Keynote Speeches on our nation’s largest stages. I have climbed trees. I have fallen in love. I have sailed on boats. And more than anything my autism helped me accomplish all of these things. My autism has changed the way I see the world, I think, for the better. My autism has made me a better creative problem solver. People with disabilities need to be creative problem solvers every day to function in a world that was not built for them. My autism has made me more empathetic.
My autism isn’t the hardest thing in my life. A lack of accessibility, acceptance, and kindness are the hardest things in my life.
And one way you can make the world more accessible and accepting of autistic people is by getting a vaccination as soon as you can.
My life has been incredible. My life has been wonderful.
And I would do it all again if I could.
Be Brave. Be Kind. Think Critically. Get Vaccinated.
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