Post #6: Disability is a Ten-Letter Word (Not Four) ♿
A few thoughts on why it's so important for me to #SayTheWord.
Hello, Friends! I hope you are all doing well. All is well here in good old Duluth, at least in terms of health, shelter, family, friends. Work-wise, it was a very low-energy / high-inertia week, so I didn't get as much writing done as I wanted. This is in part because the chapter I'm working on isn't about a particularly happy time in life, so I feel like I'd rather pull out a tooth than continue writing. But I have been here before, and I know ultimately it's important to write the fun stuff as well as the painful stuff. So I am trying not to stress out about it too much. I'd rather reboot next week, sans baggage. What do you do to brush off and get back on the horse, creatively-speaking?
The Essay that Sparked The Essay
Anyway, something has been on my mind all week, so I thought I'd write about it here. Last week, I read a beautiful post by Summer Koester about her daughter, who is autistic. Much of the essay had me cheering for both mother and daughter. You can tell she is a very life-affirming, nurturing mother. But there was a teeny-tiny section mid-way through that tripped me up. It had to do with the word "disability."
The author, knowingly or not, implied belief in the equation that disability = deficit. She encouraged people to use terms like “diffability”, “differently-abled”, and “neuro-spicy” rather than disability. These terms, she continued, are commonly used in the autism community, and while I haven’t heard many of them myself, I do believe her.
Now, I think that people should be allowed to choose their own terminology (much like, but not the same as, choosing your own pronouns and having people honor that)... So if those are terms that autistic people want to use when they refer to themselves, then I can certainly respect their decisions. But I wonder: why do they feel that way? Summer said her daughter’s doctor told her not to make a big deal out of the autism diagnosis, presumably because of the stigma having a disability entails. So, to me at least, it seems like it would help to reclaim the word. To erase the stigma.
A Rose by Any Other Name?
It always makes me a little sad when people have resistance for naming themselves (or others) as disabled. Summer’s essay is certainly not the first time I have come up against resistance to the word disability. Once, a well-meaning concert presenter told me ahead of the show, "I am not comfortable using the term disability when I introduce you - it just feels too limiting to describe you. I was thinking of saying differently-abled. What do you think?” When I assured them that I actually preferred the term disability, it seemed like he comprehended. But when the show started, he still introduced me as a "differently-abled musician". Sigh… you can't win them all.
And often I believe people are honestly trying to express something positive, although misguided, when they avoid naming disability. "But you are so capable!" or "I don't see disability when I look at you, I see possibility!" etc etc. I think the big disconnect lies in the fact that most people simply don't perceive disability as a form of diversity that is neutral, or that disabled people, in fact, compose a cultural group in America.
So I thought this week, I'd explain my reasoning for using the term disabled, in case it is helpful to you. Not to shame or condemn anyone who thinks differently than me, but simply to suggest a less negatively-charged paradigm for thinking about disability.
Disabled People Have Collective Power
The main reason I personally identify as disabled is that it unites me across space and time with all other humans who have experienced this earth through a different lens of body/mind. It connects me with them in a way that feels empowering, not sad. We (disabled people) are the largest minority in the US and if we can reach out together and unite rather than try to distance ourselves from the idea of disability, then I think we'd have more collective power and be able to infiltrate the mainstream.
Personally, I believe disability is just another form of diversity, and that it can be embraced and celebrated rather than seen as a term to avoid (similarly to, but of course not the same as, race and sexuality). I want to live in a world where people, when they think about disability, think about the positive attributes and creativity that can result from living with a disability, rather than seeing it as a sad term or as a medical issue or a cultural liability. It's my hope that people with disabilities would want to own the term, loud and proud: DISABLED! :)
I have talked about it here:
Disability Rights are Civil Rights
The second reason I identify as disabled is because it identifies me as part of a group of humans that deserves Civil Rights under the Americans with Disabilities Act (the ADA) that was passed in 1990. The truth about disability is that although I believe it is a perfectly natural expression of human diversity, I also acknowledge that most of society was developed without us in mind. Thus many buildings, technologies, and societal norms are inaccessible to us without physical modifications, attitudinal adjustments or new modes of communication.
It's important that we move forward in our society in a way that accommodates for disability - that we build new ways of doing things so that everyone can be included. This will require some retrofitting and re-imagining, but it is possible. And, thanks to the ADA, it's actually the law! It's now 2024, so any business or group failing to consider disabled people in their thinking are practicing discrimination via omission. To promote the importance of identifying as disabled, my friend Lawrence Carter-Long started a campaign on social media called #SayTheWord, and a longer explanation of his reasoning is laid out in this article.
I believe claiming disability as a cherished part of our identity not only helps to protect our Civil Rights, but it also allows us to claim our place in the story of humankind. To that end, I co-founded a group called RAMPD.org (Recording Artists and Music Professionals with Disabilities) with Lachi. One of the things we are trying to do is reclaim and celebrate disability as a critical piece of the cultural landscape. We crafted our own definition of Disability Culture that I think really sums it up:
"Disability Culture is a celebration of people who identify as disabled, while acknowledging the vast diversity of the disability experience and each person's inherent and equal worth. It is unapologetic, creative, innovative, adaptable, imaginative, and rooted in problem-solving. It is based on the premise that disability needs to be seen, respected, included and celebrated. It includes our worldviews, our perspectives, our contributions, our art, our words, and our music. Disability Culture, at least in part, is a vibrant and thriving counter-response to the exclusion, marginalization, and oppression historically and currently experienced by many disabled individuals."
Redefining Disability, Celebrating Disability Culture
Embracing Disability Culture involves rethinking how we talk about disability, how we think about it. So we at RAMPD also took it upon ourselves to create our own definition of disability— because everything else we read was too negatively biased!
What is a Disability? How do I know if I have a disability? Here are the common experiences most people with disabilities share:
Diverging from the typical mode of being or functioning in the following ways:
Physical or body (including chronic illness and being immunocompromised)
Cognitive or mind
Sensory (hearing sight, or other)
Emotional and mental health
Or rare disease that does not neatly fit into any of the above
In addition to the above, you may also experience some or all of the following because of your disability:
Using adaptive techniques, skills, supports, tools, equipment, technology or people to overcome barriers
Employing community support, assistants, personal care workers or support from other others individuals or service animals
Believing that barriers are mitigated through awareness, acceptance, inclusion, community and education
Living in an environment or using technology that was not designed with you in mind
I know that not everyone with body/mind conditions identifies as disabled, so I am not surprised that terms like dis-abled or differently-abled keep popping up. There's a big lack of education around disability in schools (for starters, please go learn about Judy Heumann if you haven’t before). There's still a lot of baggage (and in some cases, internalized ableism) that keeps people from wanting to identify that way. And on some level I do understand wanting to go beyond terminology and just embrace our differences on a human level.
Disability as a Natural Part of the Human Condition
It's my not-so-secret hope that eventually terms like disability will not be necessary because everyone will recognize they are just on a spectrum of health / disease / youth / aging / ability / disability and we can meet each other in that ever-changing place of existence, as the full humans we truly are. But until the systemic issues of disability discrimination / oppression / exclusion are rectified, I think that term disability (and identifying as a cultural group) can help us to band together under the same flag so we're not sidelined or ignored.
My goal is for people to see that all humans are not so different after all — we are all capable of our own kind of wholeness. What's more, we are all fragile and mortal, but there's not anything wrong with being mortal! It's part of the cycle of life-death-rebirth that is built into the very fabric of nature and all of creation.
So this week, I'd urge you to think about the word "disability" and what that means to you. The terms are always changing and that's good! Culture evolves. But I hope that we can maintain a sense of unity in the disability community. Every person with a disability faces the same types of oppressive forces in this society and we have the most strength when we are united. In fact, my identity as disabled is precisely why I want to uplift and fight for people in all marginalized groups. None of us are truly free until we're all free… We are all connected.
I'd love to hear your thoughts on this! Have a great week, and please keep in touch!
Very Truly,
Gaelynn Lea
Paid Subscribers: Here’s my little wordplay on disability - feel free to write your own!