There is nothing like a pandemic to bring out the best, and honestly, worst in people. Not so subtle biases have a way of becoming glaringly obvious. Racism, classism, and xenophobia have all reared their ugly heads. Since I have a personal narrative involving ableism, that is the one I am going to speak to. However, there are many voices who can share their individual experiences of other forms of discrimination surrounding the current situation. I encourage you to seek them out if you are able.
In the beginning, the ableism surrounding the COVID-19 epidemic was a little more subtle. Many people reassured themselves in the old tried and true way. “This is not something I need to worry about. I will be fine. It is those people who need to worry.” This type of thinking is understandable and expected. It helps people feel like they are not going to collapse into a sinking abyss of despair. I get it. Hell, I’ve done it. But I am here to tell you, this coping mechanism crushes “those people.”
Here is what it looks like with this coronavirus. “Don’t worry. We’ll be fine. It is only the elderly and those with underlying health conditions who end up dying from this.” As a person with an underlying health condition, I can tell you every time I hear this, I felt a little more erased. It is almost like people are saying, “For most of you, no need to worry. You will be fine! But the high risk? Retreat from society, lock your doors, and hope you don’t die cause you are screwed.”
Then things escalated. Many people started to take it more seriously. After all, the young and healthy might be at less risk but they were by no means at no risk.
In comes the health crisis in Italy. Even if everyone could be saved, there was nowhere near enough medical equipment to go around. Extremely difficult decisions had to be made. Fatality rates skyrocketed. And those that were prioritized were the ones with the best possible chance of recovery, aka the young, healthy, and able-bodied.
No one wants to be put in that situation but these tired, overworked, and many sick themselves healthcare workers have been forced to make a judgment call.
Let me set the scene for you. During the best of times, disabled people have to fight every day to convince people that they matter, that we matter, and that we count. We are undermined by every facet of society, and the healthcare industry is no exception. One woman in a wheelchair went into a hospital with all the signs of a sexually transmitted disease, but they never tested her, as they would have done for any abled-bodied woman. Why? Because the idea of this woman actually being sexually active never crossed their minds. It is not uncommon for doctors to strongly suggest pregnant disabled women elect to have abortions for supposed health reasons. Many people with disabilities, especially those on ventilators, are terrified to go to the hospital because some might unconsciously assume they are better off dead. And those often unrecognized biases can end up affecting the doctors’ decisions even without them fully realizing it.
So here we are. The country is taking action. But the potential of overwhelming our healthcare system is a very real possibility and even a reality for some parts of the country. Some states are creating or falling back on policies of how to allocate scarce resources during a health emergency. Many states make the decision by choosing the person with “the greatest chance of survival.” Tennessee goes even further by listing, among many others, Spinal Muscular Atrophy as criteria for exclusion of services (page 5 if you don’t believe me). That’s right folks, if it comes down to it, I and many others will be quickly written off as collateral damage and left to die.
This is a time of crisis, which means snap judgments. Doctors and nurses are being told to go against their training and probably their own moral code. Someone comes in sick with a chance of recovery and a will to live, you do everything you can to try to save them. But here you are, one ventilator and two sick patients who need it to survive. One is in their 20s and uses a wheelchair and the other is in their 30s with no apparent health issues. You have seconds to decide. Who would you choose to save? Most would already say the healthy 30 something with no prompt. Now add on top of that a policy mandating you do exactly that.
Let’s imagine a slightly more apocalyptic situation. So many have died off that we are only left with the young and healthy, and people are still getting sick. Our systems are still overburdened. Now how do we decide? What’s the next implicit bias we fall back on to decide whose life holds more value?
At what point do we decide what kind of country we want to be, what kind of species we want to be? Do we want to only care about human rights and social justice when it is convenient? Or do we want to say this is what it means to be human, these values are at the core of our existence and we will defend them no matter what? Do we face our biases and say, okay I see them now. I recognize them. Now let’s move forward and try to do better.
I still have hope that, even in a catastrophe, we can do and be better than we were before. There are many people and organizations that are actively fighting against these lethal policies, one of which is Cure SMA. I am grateful for them. But I also know what being disabled means in this country, in this world. A major shift would have to happen––not insurmountable but exceedingly strenuous.
I am the first to admit, things are extremely shitty right now. Many have and will continue to die. Many will lose jobs. Many will lose hope in humanity. But sometimes it takes a complete collapse to bring about change. We get to choose what that change will be.
History is happening right now. How do we want our story to be written?