A Hashtag Invites Disabled People To Claim Their Disabilities With Pride

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In November 2020, disabled activists Karli Drew and Charis Hill started a new Twitter hashtag for and about disabled people: #BeingDisabledDoesDefineMe.

Essentially, the hashtag’s creators meant it to invite disabled people to express the seemingly counterintuitive opposite of a more familiar saying about disability, one which can seem like simple common sense: “My disability doesn’t define me.” Statements like this are especially common in media stories about disabled people, in which “doesn’t let their disability define them” is shorthand for an interpretation of disability that is at the same time quite simple, yet also complex.

The clash of these two opposite views of disability is worth exploring, not only for non-disabled observers, but for disabled people themselves.

The language of our disabilities

So much debate and controversy over the language we use to talk about disability stems from fundamental questions we as disabled people ask ourselves:

  • I am I “disabled?” Whether I actually am disabled or not, do I think of myself as disabled?

  • Should I call myself disabled and encourage others to do the same? Or should I choose another, less stigmatizing, less definitive word – or just not talk about it at all?

  • If I do embrace disability as part of my identity, will that limit me or liberate me?

  • Will clearly identifying myself as disabled give me enough access to tools, supports, and the camaraderie of fellow disabled people to compensate for the stigma that comes with the label?

  • Does my disability, in fact, define me? What does that even mean?

Based on its prevalence in popular media and casual discussion, it’s still conventional wisdom that, “My disability doesn’t define me” is a positive and empowering statement, and that a non-disabled person saying that a disabled person “doesn’t let their disability define them” is a seal of approval.

This approach to disability “labeling” seems to be based partly on a very literal reading of the word “disability” or “disabled.” It makes sense to deny being “disabled,” if “disabled” means unable to do anything. If “disabled” literally means totally incapacitated and stagnant, why would anyone want to see themselves as “disabled,” much less be spoken of that way by others?

Charis Hill explains:

“I think that because many people believe being disabled is a bad, negative thing that people should somehow overcome in order to be valid, the suggestion that you don't have to BE your disability is something like a compliment … When people say, ‘My disability doesn’t define me,’ I read that as an attempt to build distance from the general historically-supported message that being disabled invalidates you as a person.”

Karli Drew adds:

“They mean their disability isn’t an all-encompassing descriptor for who they are as a person. I think they’re trying to say they’re ‘more’ than just their disabilities. I understand and respect this stance when it comes from disabled people about themselves.”

So the phrase “My disability doesn’t define me” can also be an attempt to distinguish between having certain specific impairing conditions, and being in a general state of incapacity, inaction, or stagnation – as in, “I HAVE a disability, but I am not disabled BY IT.”

Whether or not to identify ourselves as disabled, and whether or not we feel that our disabilities define us, also reflects more fundamental differences in how we understand our disabilities themselves.

The more traditional idea is that disability is concretely real and, to some extent, defining. In this view, disability both literally and socially defines us. It’s just something disabled people have to accept. Some semblance of peace and happiness is possible, but only through accepting lower and limited expectations. This is the core argument of ableism.

A popular counter-argument is that disability is only an idea, it’s not real. It is labels, like the word “disabled,” that actually disable us. If we can overcome and intentionally ignore or deny our disabilities, refuse to let them define us, we are in effect no longer truly “disabled.”

This takes the idea of identity being a mere abstraction to the extreme. And there’s something to be said for this belief. “Disabled” is a highly social category that should always be questioned and recalibrated. But disability is usually also at least a bit “realer” than many of the other factors that divide and distinguish us. Deafness, blindness, amputation, paraplegia, and other kinds of impairments, (though not all of them to the same degree), have an objective reality that can never really be redefined out of existence.

A more balanced hybrid that underpins more of modern disability culture and activism is that disability is both a concrete material reality and a socially constructed identity. In this view, disability status doesn’t entirely define us, but it does affect us, and probably always will. Labels like “disabled” at least give us an anchor for identity, a community, and a language to talk about our experiences.

These different takes on disability also affect how we respond to ableism and disability stigma.

One approach is to escape disability stigma by avoiding or denying the label of disability itself. The other approach is to defeat disability stigma, while embracing disability itself and intentionally changing the meaning of “disability” so that it becomes less stigmatized. The second approach is more widely accepted among disabled people who are deeply involved in disability culture and activism. This is no surprise, since exploring disability this way almost requires some kind of embracing of disability itself, as both a practical fact of life and a social identity.

Still, the most widely understood image of a successful, admirable disabled person is still that of the disabled person who overcomes and denies disability, refusing to “be defined by it.” It still dominates popular images and beliefs about disability and disabled people. This is why #BeingDisabledDoesDefineMe is so significant. It seeks to open the door to a distinctly different way for disabled people to think of ourselves.

Championing a different view of disability

Hill and Drew’s Twitter hashtag #BeingDisabledDoesDefineMe reveals the simplicity, sincerity, and depth of the way more disabled people now interpret the meaning of their disabilities. It invites disabled people to express their ownership and pride in their disabilities. The responses were stunning and, to repurpose another commonly misused word in disability discourse, inspiring.

Drew says, “I wanted to reassure people it’s absolutely okay to let a disability define you.”

“I have seen people post pictures of themselves with it to show disability pride,” says Hill, “and I have seen people write powerful tweets about how disability is central to who they are.”

About the hashtag’s meaning for so many participants, Drew notes that, “For some disabled people, it’s their first time embracing a community and culture like this. For others, like me, it’s a reminder we’re a part of that incredible community and culture.”

Hill adds, “It has been beautiful to see tweets by people in the community who are just now learning about disability culture and community, who are tentatively grasping this new-to-them idea that they can lean into their disabilities instead of fight against them.”

This integration of ourselves and our disabilities is more than just a philosophical “take.” For many of us, detaching our disabilities from our selves doesn’t make intuitive emotional sense.

“As a disabled person,” says Drew, “every aspect of my life is directly and indirectly permeated by disability. The same holds true for many other disabled people.”

Hill agrees, and notes the unsustainability of the opposite approach. “Separating a part of myself that informs my understanding of and movement through the world is impossible - if you somehow remove that identity from me and box it up in a different room, I'm simply no longer whole.”

This usually well-intentioned push to detach disabled people from our disabilities, including through use of “person first” language like “person with a disability,” just doesn’t work for many of us.

Drew comments, “It feels like they’re taking our disabled realities out of the equation altogether, or implying we need to ignore our disabilities to live.”

There are in fact benefits to integrating our disabilities into our identities. It isn’t, as it may appear from the outside, a resignation. It can be healthy and empowering.

Says Hill, “We're refusing to live into stigma and shame when we say who we are and refuse to allow others to choose our narrative for us.”

And Drew adds, “Embracing our disabilities unlocks more self-acceptance and it allows us to highlight our own unique qualifications.”

This formulation doesn’t work for every disabled person at every stage of their lives. But the resonance and response to #BeingDisabledDoesDefineMe shows that more and more disabled people are, as Hill puts it, “... coming to that realization that being disabled really does define them and that they are allowed to be proud of that rather than embarrassed or ashamed.”

What influences our understanding of our own disabilities?

Disabled people don’t all think alike about disability. A lot depends on which conceptions of disability we are and aren’t exposed to, and by whom. Until fairly recently, most of the images and narratives of disability in popular culture have been about disabled people “overcoming” and sidelining their disabilities.

Recently, internet platforms and social media have done a lot to open up new ways of thinking about disability not just to non-disabled allies and the wider community, but to disabled people themselves. The message of disability identity is particularly powerful and vibrant online. #BeingDisabledDoesDefineMe is just one example.

It also matters who explains disability to us, and under what circumstances.

Most of us are introduced to our disabilities by people who aren’t themselves disabled. This can include parents and family, doctors, therapists, teachers, and counselors. They essentially have the first word on what disability is and how we should feel about it, which isn’t always for the best in the long term.

Some disabled people never really connect with other disabled people, or learn about disability history, culture, or activism. Many others only connect with these things much later in life. This is either because they only became disabled later on due to accident, illness, or age – or because they grew up with disabilities mostly influenced by non-disabled elders and professionals,

Another even simpler but often overlooked influence is our underlying personalities, beliefs, and values. Everyone has natural, deeply rooted inclinations or ways of thinking, disabled people included. Some people are compelled to explore and constantly refine their sense of identity. Others just don’t care, or feel less reason to be concerned about identity. Some people are more practically oriented, and are frankly bored by abstract talk of any “meaning” in disability.

We can’t ignore politics and ideology either. Broadly speaking, conservatives tend to view discussion of any sort of “group identity” as negative, even corrupt – a harmful movement away from the freedom of individuality. Liberals or progressives on the other hand are generally more comfortable with like-minded and identity-defined groups working together for shared goals and collective social recognition.

So disabled people who are also basically conservative may be less inclined to engage with disability as an identity or social membership they would want to identify with. More Left-leaning disabled people can be more likely to view this kind of thinking and identification not only as emotionally satisfying, but politically necessary.

#BeingDisabledDoesDefineMe is for some disabled people a simple statement of fact. For others it’s a way to retool how we understand our own disabilities. Either way, it’s an important call for us all to set conventional assumptions about disability aside and embrace broader, and for some more exciting, provocative possibilities.

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