I have two children with disabilities, and both of them fall under the “at risk” category when it comes to covid-19. My youngest has Down syndrome, and she is immunocompromised. This means that when she gets sick, she gets really sick, and it takes her body much longer to fight sickness.
The week before our state went into quarantine, she had a fever of over 102. Her doctor asked for us to come in and get her tested. They ran several tests, until the doctor said, “Good news, she has tested positive for strep.” She then added, “Not that this is good news, but at least we know what it is.” We also knew what it wasn’t: covid-19.
She missed four days of school that week because of strep.
Then school was canceled. A relief, considering at this point I was going to keep my kids home due to the thread of covid-19 in the state of Minnesota.
We have been self-isolating for 12 days. My husband, who is a mental health counselor, is now working from home doing Telehealth. This was implemented last Friday. Before then, we had a protocol for him coming home. Strip, wash, then greet the family.
Nobody has left our house since, but we know this doesn’t mean we won’t get sick.
We still need groceries, and stores are so saturated with delivery and pickup that we are unable to find any open slots, which means we have to go inside, risk exposure, and bring it home.
I am terrified of my two “at risk” kid getting infected, especially my youngest, who is immunocompromised. It is not only fear that her body will struggle to fight the virus, I worry that if she were to need a ventilator or an ICU bed, the system will be so saturated with other people that she will be left to die — deemed not worthy of life-saving medical intervention in favor of saving others who are not disabled.
I am not exaggerating or imagining a worse-case scenario. These worse-case scenarios are already happening because of the shortage of ventilators and ICU beds. This is happening in Italy, where doctors are already rationing supplies based on age and disability.
If you are too old or if you are disabled, you die.
We are looking at what could be our nation’s future.
There are not enough ventilators, so how do you decide who gets them and who doesn’t?
Karin Willison wrote for The Mighty:
States already have pandemic resource allocation policies in place that deprioritize disabled lives. In Washington state, rationing guidance distributed by the Department of Health includes a provision that triage teams can transfer COVID-19 hospital patients with “loss of reserves in energy, physical ability, cognition and general health” to outpatient or palliative care. This describes the majority of people with physical and/or intellectual disabilities, or could be interpreted as applying to us. In Alabama’s policy from 2010, people with severe or profound intellectual disabilities are listed as “unlikely candidates for ventilator support.” Tennessee’s 2016 protocol called for people with “advanced untreatable neuromuscular disease” such as multiple sclerosis and spinal muscular atrophy to be excluded from critical care. And in a particularly disturbing set of guidelines from 2015, the New York State Department of Health said hospitals could take away ventilators owned by people who require them to live if they check into the hospital during a scarce resource situation.Karin Willison — The Mighty
And this is why I am terrified. If we get to the point where doctors begin to ration who gets a ventilator and my child needs one, chances are they will send her home to die.
How did we find ourselves here?
My child’s life is not dispensable or “less than.” My child is just as worthy of life-saving interventions, regardless of disability.
How is it that a medical model views my child as someone whose life you can “sacrifice?”
This feels like a nightmare — and I am not okay.
I need the world to understand that the value of life, of all life, is not based on disability, ability, or intellect. Why is this where we draw the line?
Why is it that disabled lives are the first we “dispose” of?
My heart can barely take it.
So many times I look at my daughter, singing, dancing, laughing, and I think, “She cannot get sick. She cannot get sick!”
Because the risk is too great. The possibility of her not having access to life-saving intervention is unbearable.
I worry about my child’s life.
Sometimes it feels like it’s too much to handle.
So I will fight the way I can — with my voice. Joining in and demanding politicians to include protections for the disabled. For my kids.
We need to flatten the curve. We need to make sure the medical system doesn’t become overwhelmed.
It makes me angry to see pictures of people gathering and partying, having fun and not follow recommendations because they personally are not “high risk.” They cannot look beyond themselves to what this could mean to those who are vulnerable. It makes me especially angry to think that, if my child were to need a ventilator during a shortage, and so did a 25-year-old who was not practicing social distancing, the irresponsible and careless individual would be saved over my child.
How can this be okay?
So please, I beg you, stay home.
Stay home so we do not overwhelm the medical system — so that rationing ventilators doesn’t put my child’s life at risk and the many other children like her.
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Image shared with permission from my daughter from several years ago when she was sick and had a fever.