you can call yourself disabled if you want to
As much as I do not desire to serve as a gatekeeper to any identity or identity-based community, I frequently find myself in conversation with people who seem to feel that they need permission to call themselves disabled. These people will describe their experience with any combination of the following: constantly in pain, unable to manage “basic” tasks, having a “funky” brain (among other non-specific euphemisms), their body does not “behave”, and beyond. As they stumble over themselves trying to use any other descriptor, a sentence runs through my head over and over:
You can call yourself disabled if you want to.
Despite having a genetic condition that has made me apparently disabled since birth, my formation of disabled identity did not happen until I was nearly all of the way through high school. Since my condition is not one that impacted my ability to learn or communicate and my physical access needs were minor in a small one-story school building, I was mainstreamed all throughout grade school. This stands in contrast with many other disabled students who find themselves in segregated and isolated classrooms, sometimes even entirely separate buildings. As I sat alongside my mostly able-bodied peers, my goal was to assimilate as much as humanly possible and to ensure that people knew that I was not like those other kids who were obviously disabled.
Sharing this with people who are themselves struggling to come into their own disabled identity, I often receive reactions that read to me as shock and surprise. How could it be possible that someone so obviously disabled as me would struggle to believe that? Or to take on that identity? And as I hear their stories and the ways they describe their life, this makes me laugh. I wonder the same about them.
The reasons people struggle to identify with disability are complicated and widely varied. Most people feel shame, many people feel scared, some people diminish the severity of their own experiences because they have been taught to push through out of necessity. For the individuals who have found it necessary to push through, I have observed that they are either unaware of how much easier their lives could be if they owned their experience or they are aware their lives could be easier but they do not have access to the resources required to make that a reasonable possibility. The intersections of race, citizenship, class background, gender, and sexuality inform these experiences deeply. Cultural norms and socioeconomic forces associated with each of these areas of identity often make it so someone who is white will more likely have access to what is required (a diagnosis, medical care, media representation, etc.) to feel entitled to naming oneself as disabled. It often makes it so anyone who is not a cis-man has to have their treatment mediated through their physicians ego and the general inadequacies of the medical industrial complex, which frequently means not being believed and not receiving answers. It makes it so people without insurance have to decide between not receiving necessary treatments or going into extreme debt, an option that could have serious consequences for themselves and their loved ones. It makes it so people who are undocumented cannot access care without the looming threat of being separated from their lives and communities. And on and on and on. I cannot speak deeply to most of the experiences that I have listed and ones that I have not. I reference these experiences anyways because it is important to consider all of the very real and complicated ways that people find themselves alienated from the possibility of identifying as disabled even if their experiences fit the criteria that would be necessary for them to do so.
And before my next point, I want to be clear that this is all contextual. There are going to be people who have too much else to worry about to even have the time to consider such notions of identity. This essay is not an effort to plead with these individuals or to place blame on anyone who has found themselves in the position of questioning their own entitlement to claim a label that for all intents and purposes suits them. My intention is to leverage the privilege I have, as someone who has disabled community and has had years to think through the implications of identifying with disability, to make the prospect of others doing so as welcoming as possible so that more people can access the benefits of being surrounded by people who have shared experiences.
One reason that I have heard routinely expressed by people that I already consider my peers in the context of disability is that they fear that their proclamation of being disabled will harm other people who are “actually” disabled. And this is the feeling that compels me to want to shout from the rooftops — disability as an identity is not a scarce resource! Even for people who do not experience their disabling symptoms as a constant (which is likely the case for most people and has been referred to as dynamic disability), acknowledging your experience is not inherently harmful to those whose disabilities manifest differently from yours.
What makes people feel that disabled identity is a scarce resource? Speaking from the perspective of living under United States governance, it is true that the state’s definition of disability is inherently connected to one’s ability to do labor. As long as someone is able to perform enough labor to fulfill the requirements of a full-time job, they will fall outside of the parameters of disability as defined by the state. We are told that there are limited funds and it is the job of the social workers at the social security office to determine the legitimacy of disability claims. Their main objective is to find those who are “faking” or who are not “disabled enough” so that the government can send money to as few people as possible. This explanation I have shared is extremely simplified but the point remains: our society is entrenched with notions of scarcity when it comes to disability which perpetuates an unnecessary sense of competition between people who could otherwise be allies. Despite the very real material consequences associated with government policies that are often out of our control, we do not have to listen to, believe, or internalize this narrative. We deserve to choose something else.
What are the benefits of claiming disability as an identity? We are living during a time where the prevalence of disability is increasing dramatically. Ongoing corporate and government negligence propels climate change which propels injuries of varying natures that are having lasting impacts on all of us. Another manifestation of government negligence in the context of COVID-19 is making it so there is a whole new cohort of people who are likely developing what is known as myalgic encephalitis/chronic fatigue syndrome (ME/CFS) and dysautonomia. As this happens in an ableist cultural context which teaches us that disability and illness are shameful, private, and taboo, it is easy for people to be pushed into isolation unable to receive the help or support needed. Claiming a disabled identity, for many people who are pushed into isolation, is the first step to finding virtual communities of peer support. It serves the interest of our oppressors when we are isolated from one another. While it does not solve all of our problems by coming together, we create sites of empowerment that can be a conduit for all sorts of positive change. We need all of the experiences we can find to add the long lineage of disabled wisdom — or as some people call it Crip Wisdom. This lineage creates an invaluable network for all of those who are here and yet to come, offering the possibility of decreasing suffering that is caused by ableist systemic oppression.
What are the limitations of claiming a disabled identity? Despite the identity giving people the empowerment to communicate more openly with other disabled people about their experiences with ableism, it is not a license to speak on behalf of others’ experiences with disability. Yes — you can leverage your areas of privilege to call for increased accessibility measures to be taken for people who experience different barriers than you. For example, if you have the ability to perceive online content without needing image descriptions, you might feel more compelled to advocate for organizations to make their online content more accessible in this way. But this is different than speaking as if you fully understand what other people are going through.
Identifying as disabled also does not immediately (or possibly ever) absolve you of your internalized ableism or from enacting lateral ableism (being ableist towards people with other disabilities.) Give yourself time to listen to and observe other disabled people for the opportunity to learn what sorts of engagement around being disabled feels most beneficial for you and those you share community with. It is especially important that you listen to those who experience disability in ways that are different from you. Queer and trans folks have unique experiences from those who are straight and/or cisgender with the medical industrial complex. Black people, Indigenous people, and other POC have been disproportionately excluded from disability centered spaces over the past several decades while being most vulnerable to systemic harm rooted in ableism. These facts must be acknowledged alongside the recognition that there is possibility for collective power in responsibly claiming disability.
Here I have presented a brief overview of the areas I perceive to influence whether or not someone feels comfortable to identify as disabled. There is so much more to be said that will probably be said at a later time but if you feel that you are someone who falls into this category, my hope is that by the time you are finished reading this you feel affirmed. There have always been disabled people and as long as humans exist on this planet, there will always be disabled people. There are communities with open arms ready to hold you in all of your complexities. You are a part of lineage of people who carry the wisdom necessary for the survival of all humanity.
You are worthy enough to give yourself permission to be who you already know you are.
