These days, I am struggling to find grace for abled people. I have taken a break from engaging with most abled folks in my life because frankly, I don’t know how to convey the magnitude of disabled rage I feel about this pandemic and the stunningly self absorbed levels of abled entitlement. I cannot casually check-in anymore or be asked how I’m doing in the middle of mass suffering, illness and death. I cannot listen to or read about the high rates of infections, illness and death in BIPOC (Black, Indigenous and People of Color) communities with no mention of BIPOC disabled people in the middle of a pandemic. I cannot listen to the CDC say they are “encouraged” that only those “who were unwell to begin with” will die from Omicron and then hear about so-called-comrades’ vacations outside of the continental U.S. I cannot be part of any more so-called political conversations that don’t acknowledge disability, ableism and abled supremacy in the middle of a pandemic.
We will not trade disabled deaths for abled life. We will not allow disabled people to be disposable or the necessary collateral for the status quo. We will not look away from the mass illness and death that surrounds us or from a state machine that is more committed to churning out profit and privileged comfort with eugenic abandonment.
We know the state has failed us. We are currently witnessing the pandemic state-sanctioned violence of murder, eugenics, abuse and bone-chilling neglect in the face of mass suffering, illness and death. We are the richest nation in the world and we continue to choose greed and comfort over people and life. The state is driving the knife of suffering deeper into the gut of those who are already collapsed on the ground. The cruelty is sweeping and unapologetic.
This is no surprise to many of us on the far left. We have seen what the state is willing to do to its own people. We have never been able to rely on the state because we know the state does not care about us or our people. We have always had to organize outside of the state. This is nothing new. We have been here before and we are here again.
We know we need systemic change so that our peoples can literally survive this pandemic alive, but we also know that the kind of changes we need are most likely not coming. It is in the interest of those in power to keep people uncared for, sick and dependent on dwindling crumbs. This is one reason why ableism and poverty are so effective and why they are often inseparable. There are many things we cannot control or change right now, even as we desperately wish we could. As we fight for systemic changes, we can also try to change what is happening inside of our communities. We can learn from our mistakes and try to, at the very least, not make things worse than they already are.
Pitting the need for state and systemic change against individual and community change sets up a false binary. Both are necessary to get out of the pandemic mess we are in, just as both are necessary for any kind of liberation we are fighting for. We need to provide hazard pay to essential workers, end evictions, pay people to stay home, distribute free tests to everyone and we need everyone to wear masks, stop holding/attending in-person gatherings, stop unnecessary travel and get vaccinated and boosted. There are people on the left who are only talking about the need for a state response, while they themselves are still not vaccinated and boosted or continue to throw/attend in-person gatherings. If transformative justice teaches us anything, it is that systemic change alone is not enough. There are also many changes that must happen at the community and individual levels as well.
Vaccines have laid bare how deep ableism runs in our political movement culture. Disabled people have always known this, but I have been incredibly disappointed and angry at abled people, especially within our movements, who have reinforced abled supremacy via abled culture and entitlement and shirked their responsibility and missed opportunity after opportunity to challenge abled supremacy and act in solidarity with disabled people and communities.
Why have we allowed and contributed to the framing of vaccines as an individual choice instead of collective action, interdependence and solidarity with disabled people (especially those who are high risk), elders, children who cannot get vaccinated, the global south, essential workers and those who do not have the option to work from home? For those who are able to be vaccinated, getting vaccinated is not about personal choice. It is not like deciding to get an abortion; stop saying this. Not getting vaccinated is not “my body, my choice,” it is more like drunk driving or exposing someone to secondhand smoke.
We should be talking about getting vaccinated and making it part of our political left culture. Not only posting about it on social media, though that is important, but more importantly, engaging in direct conversations with those in our lives. Not in an attempt to shame, because we know from transformative justice that shaming people is not useful, but in a way that invites conversation and sets clear consequences, not punishment.
Getting vaccinated and boosted should be framed as part of our political commitment to interdependence, disability justice and solidarity. I have been truly disheartened, though not surprised, by the amount of people in our movements who are able to get vaccinated, who have not done so and continue to eat out and go to gatherings, instead of staying home to protect others. As someone who has experienced tremendous abuse, including sexual abuse within the medical industrial complex, I do not support forced medical treatments of any kind, including vaccines. I want you to want to do the right thing. I want you to want to protect and care for other people. If you are able to get vaccinated, but are adamant that you do not wish to, then for our collective safety, isolate yourself, stay home and stay away from other people.
Abled culture teaches abled people to be entitled. You are entitled to never have to learn anything about disability and ableism. You are entitled to get to move through the world, and through our movements, with little-to-no understanding or political analysis about disability, even as you pontificate about every other system of oppression and violence. Abled culture in our movements mean that we will say, “we must center those who are most impacted,” all day every day, but then not include disabled, especially those who are high risk, in the center during a global pandemic. Abled entitlement means that you will still continue to plan your vacation abroad, even amidst the Delta surge; you will still post pictures from your giant family holiday gathering amidst the Omicron surge.
You are not entitled to our deaths. You are not entitled to the deaths of our loved ones in the name of capital, privilege and “normal.” You are not entitled to our silence about our pain and suffering and the wet tar grief that envelops us. You are not entitled to our fear and terror at the worsening conditions and chaos of this pandemic, wondering if we will ever be able to safely leave our homes again.
You enjoy connection at the expense of our isolation. Your needs are always more important than the collective. When you choose to gamble with your own health, you only take into consideration your own risks and never the risks of others. Abled entitlement ensures risk assessment will always be, “Will I get sick? I will be able to recover OK. My family will be OK. My children will be OK.” Never, “Will they be OK? Will their children be OK? Will their family be OK? Will everyone they might also interact with be OK?” Never, “Could this harm their country? Their state? Their continent?” Shielded by your abled privileged bravado, “it can’t happen to me. I’m healthy.” Never, “Who might I be exposing? I might be OK, but someone else may not.”
Abled supremacy means that many of you mistakenly think that if you do get COVID and if you end up with long COVID, that the state will take care of you or that your community will. You believe this because you do not know about the lived reality of disability in this country. Abled privilege means that you don’t have to listen to disabled people or learn about ableism and abled supremacy. Our government does not care about the disabled people that already exist. So, if you think it will care for you if you become disabled from COVID as millions more will, then that is a function of your ableist ignorance.
I need you to care about disabled people’s lives more than you care about a vacation, a party or a celebration. A cornerstone of being disabled in an ableist world is isolation. This is part of the trauma of ableism. Disabled people are marked over and over by isolation through material, social and cultural inaccessibility, stigma, fear, violence and shame. We live with various forms of social distance our entire lives. During this pandemic, many disabled people, particularly those who are high risk, have not left their house or seen anyone for years, save the people they live with. You take the luxury of in-person connection for granted and feel entitled to it, even as thousands around you die and suffer, even as you may risk prolonging and worsening the pandemic.
We don’t know when the next variant will emerge as a threat. Scientists are watching many variants that have not become threats yet. The longer COVID is allowed to circulate within a community, the more chance it has to mutate and spur a new variant. We cannot keep risking collective safety for individual indulgence. We cannot keep sacrificing long term needs for short term wants.
Disabled people are not disposable. We are your feared present and your inevitable future. We are what age and time promise more than anything else, and this is one reason you fear us and why you have continually pushed us away and hidden us. You don’t want us too close, don’t want a daily reminder of difference and privilege; you don’t want to have to change your life for us. We are to be landfilled away, conveniently forgotten about so you can play pretend without interruption.
Pandemics, climate change, pollution and toxins have tilted the scales and upped the ante that disability is our collective future. You may have been able to avert your eyes from state violence, poverty and addiction, but what about when the very air you breathe becomes a threat? What about when there is nowhere left to escape climate disaster and you cannot afford to leave the planet? Individual safety by itself is a myth. There is no individual safety without collective safety and collective safety requires that no one is safe unless everyone is safe.
You interrogate your privilege, but never your abled privilege. You educate yourself about oppression, but never ableism. You love your queer, BIPOC, working class, abolitionist, anti-racist, feminist, immigrant communities, but never seem to remember that disabled people exist in these and every community.
My people are dying and terrified. And you don’t seem to care. You don’t seem to care because you don’t see them–see us–as your people too. When you talk to me about racial justice or housing justice or healing justice or gender justice, who exactly are you talking about? Whose justice are you fighting for? Because it never seems to include disabled people or if it does, it is only in theory, not practice; only to make yourself look better. Or only when disabled people are in the room or when disabled people initiate the conversation.
I do not wish to be your token politicized POC disabled friend or comrade. If you care about me, then I also need you to care about disabled people and disabled communities because if you don’t care about them, then you don’t care about me. If you care about me then I need you to check your abled entitlement and challenge abled supremacy, especially the current abled culture that deems disabled people as disposable in this pandemic.
I need you to not only say that you are in solidarity with disabled people or that you value disability justice; I need you to practice it. I need you to engage in the hard conversations with fellow abled people about vaccines and boosters, masks and canceling in-person gatherings, travel and work. Many disabled people have been doing this labor because we do not have a choice. We have been losing connections, yelled at, mocked, ridiculed, told we are overreacting, harassing or controlling simply because we do not wish to die. Simply because we do not want others to die. Simply because we cannot afford to risk being at the mercy of a triaged medical system that may deem us unworthy of treatment because of our disability, illness, class, race, skin color, accent, immigration status, gender, size. Simply because many of us knew what was coming, what is coming, and we knew we could not stop it without you and we knew you would always choose your own comfort and pleasure over collective safety, over interdependence. How to put into words the demoralization of needing people who do not need you?
We should be framing this pandemic in terms of interdependence. This is the right political framing because it is the only moral and humane framing. Interdependence acknowledges that our survival is bound up together, that we are interconnected and what you do impacts others. If this pandemic has done nothing else, it has illuminated how horrible our society is at valuing and practicing interdependence. Interdependence is the only way out of most of the most pressing issues we face today. If we do not understand that we are interdependent with the planet we as a species will not survive.
Abled culture teaches you to act as if you are independent, to buy into the myth of independence. Reject this. Embrace interdependence and know it is the only way we will be able to end this pandemic. Know that if we center disabled people, first and foremost those who are high risk, it will help everyone. More people getting vaccinated and boosted, means less people overrunning hospitals, so that ICU beds and hospital staff can be available for those who truly need it. It also means that non-emergency surgeries and other vitaly needed medical procedures do not have to be postponed because of an overwhelmed medical system. Less people traveling unnecessarily means less chance for the virus to spread and mutate, and that those who do need to travel (e.g. to take care of a sick loved one) will be at less risk. For those who can, staying home and not going out when you don’t have to creates safer conditions for those who are not able to stay home. Declining invitations to gatherings and explaining why, not only helps to stop the spread, but also models by example care, boundaries and interdependence.
Reframe your disappointment for having to cancel that event or gathering as an opportunity to practice interdependence, solidarity and disability justice. In the same way that you might refrain from attending or purchasing something you enjoy because you want to support workers on strike, support the most vulnerable groups from this pandemic. This includes the global south, which is filled with BIPOC disabled people, because we know that they will bear the brunt of the global north’s entitlement, selfishness and greed (e.g. not stopping the spread of the virus, waiving patent rights for vaccines). If we all step up to protect the most vulnerable, if we all practice collective action together, then we can significantly help to reduce risk and harm.
The solution cannot be that everyone has to get COVID. That is eugenics because many disabled high risk people will die and those who do not die will have serious complications and lifelong impacts to their health and wellbeing via COVID and the possibility of long COVID. Do not buy into this eugenic thinking that expects the most vulnerable to be sacrificed. Long Covid is real and it can happen to anyone.
This pandemic will create millions more disabled people with chronic illnesses. Are we ready for what is coming next? Are we prepared for how many more disabled people with chronic health conditions there will be? Are we ready for how that will and should necessarily shift our movements and political work? Or are we going to continue to shut out disability and disabled people from movements and communities? Are we going to continue to not include ableism and abled supremacy in our liberation work?
If there was ever a time to be in solidarity with disabled people, it is now. It has been through this entire pandemic. This is about what you can do now. Now is the time to recalibrate, to get (back) in alignment with your values. We don’t need your apologies, we don’t have time for that, we just need you to do better. If you are abled, talk to other abled people. Because of ableism they will be more open to hearing it from you than from us. Help to educate them. Do not participate in upholding abled supremacy. Unlearn everything that doesn’t serve interdependence.
Interdependence is ultimately about “we,” instead of “me.” It understands that we are bound together, by virtue of existing on this planet. Interdependence is generative and grounded in care for one another. It doesn’t live in obligation or entitlement, but rather a loving willingness and a sacred giving. Interdependence cannot exist in scarcity, competition, comparison, domination or greed. It flourishes in abundance, appreciating and honoring difference, collective care and collective access. Interdependence can exist between two people or six billion and everything in between.
Interdependence asks us to imagine new ways forward with intention and soulful commitment to each other. We need you. We need all of us. There is no getting out of this pandemic alone. There is no stopping the spread or pushing our government, schools and businesses to do more, alone. We need each other. We need each other. We need each other.
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