As a Disabled Person, I Feel Seen in Mutual Aid
Solidarity not charity
Since the COVID-19 pandemic first hit the United States, communities across the country have quickly picked up on mutual aid as a framework for both survival and bigger dreams. As the health and economic impacts of the pandemic have pushed virtually every inequality in this nation to the surface, mutual aid philosophy allows us to reimagine our society from one built on exploitation to one built through solidarity. As a disabled person, this structure has given me a new way of imagining what the rest of my life could look like.
Mutual aid is nothing new. In fact, it’s as old as human civilization. The anthropologist Margaret Mead is often cited as saying that the first sign of human civilization was not clay pots or fish hooks or grinding stones — it was a femur that had broken and healed. Mead argues that no animal survives a broken leg in the wild for long enough to heal. Therefore, a broken femur that has healed was a sign that someone who could not gather fruit, or hunt, or walk unassisted was cared for. Not for their productivity, but because they lived in solidarity with other people who took care of them.
Over the past year, I’ve had to navigate what it means to ask for help as I developed a chronic neurological disorder resulting in changing physical and mental abilities. When I first began using mobility aids, many people in my life didn’t know how to respond. I suddenly became delicate in their eyes. Whenever I would try to do something, someone would run up and say, “No, don’t worry about it, I can do it for you.” The first time felt nice; the third felt infantilizing. I had become the charity case.
To complicate things, my disability is unusual. When I first began experiencing symptoms, they were indistinct and I found it hard to articulate what I was experiencing. My family was primarily interested in ‘curing’ me. My doctors investigated bloodwork and my mother set me up with a traditional healer. Eventually, I was diagnosed with a Chiari Malformation, which has a surgical treatment, but no ‘cure.’ My family was overjoyed that I had an answer. While I was a prime candidate for surgery, I had to manage expectations that I would somehow be abled again.
As the health and economic impacts of the pandemic have pushed virtually every inequality in this nation to the surface, mutual aid philosophy allows us to reimagine our society from one built on exploitation to one built through solidarity.
Many people with chronic neurological disorders and illnesses, have a complicated relationship with the constant push for ‘cures.’ While we are happy to have symptoms alleviated, medications are far more complicated in practice. Many of us go through cycles of trying new medications to see if they even work, and if they do, figuring out if the side effects are worse than the benefits. The longer you go through the process, the more you start to think, “what am I trying to be cured for?” Because I don’t need a cure. I can still make art. I can still communicate with the people who matter. I can still organize. The specifics may have changed, but the important things are still there. This is still a life worth living.
Despite the ingenuity that disabled people have long-employed to navigate our unique lived experiences, we still rely on others. Those of us who live independently still rely on farmworkers and grocers to provide food, on calendars and alarms to keep us attuned to time, and on engineers and manufacturers to produce the medical equipment we use.
My family is worried for my future, because they fear a future in which I inevitably am unable to work full-time to make an income. But the fear is not about whether or not I am able to contribute to wage labor, it’s about whether or not I am taken care of with dignity. I don’t need a cure; I need a world that is accessible for me to thrive in.
The state won’t provide this, but mutual aid opens new possibilities. It offers a way for communities to intervene in cycles of violence and poverty without cops. It offers a way for us to care for disabled people without institutionalization. It offers a way for us to grow food and nourish ourselves without the exploitation of the land or other people. It offers an alternative to taking care of our families beyond the confines of capitalism.
Contemporary mutual aid in the United States is a natural response to a state that prioritizes the wealthy and white and exploits communities of color, which have consistently lived in crisis. Many indigenous communities built their societies around mutual aid and still practice this today. Organizations like the Black Panthers and the Young Lords that were targeted by the state could not rely on it for protection or support, so they created alternative systems to provide free breakfasts and other services to their communities. After Hurricane Katrina, mutual aid cared for people when the state did nothing. Just as activists say, “the police doesn’t protect us, we protect us,” mutual aid offers a future where “the state doesn’t provide for us, we provide for us.”
Because I don’t need a cure. I can still make art. I can still communicate with the people who matter. I can still organize. The specifics may have changed, but the important things are still there. This is still a life worth living.
In Ward 1’s mutual aid group, I initially felt useless. We constantly need more people running deliveries of groceries, medicines, and supplies to our neighbors. I wanted to utilize my car (and disability parking tag) for the cause. But in reality, I can’t carry groceries back-and-forth to my car or walk up multiple flights of steps to people’s homes. But I’ve been able to contribute in different ways remotely with fundraising efforts and storytelling.
In our work, we repeat the mutual aid mantra, solidarity, not charity. The more I’ve been able to embrace the mutual aid framework, the more I’ve realized that when I get a voice in the decision-making process, I don’t feel patronized when helped. When I build solidarity with others and we work together to find ways that we can benefit each other, I can envision a life for myself beyond wage labor or meager benefits from the state.
As I worry about a future where I inevitably will be unable to work full-time, mutual aid represents a vision where my inability to generate profit is not a death sentence. It’s a way where I don’t have to feel guilty or burdensome due to a lack of income. And while it is not a silver bullet, implementing a network of care based in solidarity is a necessary step towards building a world that uplifts and supports all people.