In the United States, July is considered by many to be Disability Pride Month - a month I wholeheartedly believe in recognizing and celebrating. But what are we saying we are proud of? Disabled people have, historically, been removed or excluded altogether from the public records of various cultures. While some would call that being "underrepresented" there is a passivity to underrepresented that fails to point out the intentional erasure of disabled lives and trials both metaphorically and literally. According to The Arc website
Disability Pride Month is celebrated every July and is an opportunity to honor the history, achievements, experiences, and struggles of the disability community. Why July? It marks the anniversary of the Americans with Disabilities Act (ADA), landmark legislation that broke down [many] barriers to inclusion in society.
In this post, I wanted to talk about what Disability Pride Month means to me - specifically, how and why I choose to celebrate it.
The underrepresentation of disabled people in my life feels markedly similar to the underrepresentation of queer people in my life - I didn't see people like me and so, I didn't know what my future might look like. It's only been in recent years that I have become comfortable calling myself disabled; it's only been since 2021 when I was officially diagnosed as autistic and ADHD (AuDHD) that I felt I could claim the identity for myself. Retrospectively, however, aside from the AuDHD, I have dealt with disabling health issues and injuries since at least 2002 which, for context, puts me in the fourth grade. It was at that point I sustained an injury to my right hip that I've been navigating ever since. Unable to walk or stand long without desperately wanting to cry for nearly four months during the initial injury was terrifying.
My injury was sudden. I was playing softball, the other team's pitcher was a little wild that day and I wasn't the first batter to be walked - the coach's rule was that if you were walked you at least jogged to the next base. I made it to first base fine. On the next walk, I jogged to second and I felt the pain growing, and by the time the second batter after me was walked, I could barely make it to third base. I remember I was carried off the field but I don't know who by. I vaguely remember that my dad carried me to my mother's car who brought me to my chiropractor, but most everything after that disappears into a blur of pain and tears. No one knew that I'd be navigating the results of this injury twenty-plus years later and we certainly never expected it to be made worse by the car accident when I was t-boned in 2022.
My mental health was also chaos. I think that it always was. I remember being extremely anxious as a kid, I'd get headaches and had panic attacks. Some of this can be attributed to the AuDHD and some to life circumstances. Then, from 6th grade (age 12) on, I navigated severe premenstrual dysphoric disorder (PMDD) which caused my hormones to wildly fluctuate and destroyed my mental health for three of four weeks every month. I spent three quarters of my life disabled by my period for 11 years - not counting the gender dysphoria that my menses caused. The PMDD wasn't diagnosed until I was in my twenties and it was not identified by my doctor but by a friend whose work as a nurse-midwife allowed her the insight to figure out the monthly patterns. While this was managed with birth control for some time, I had my uterus and ovaries removed in 2017 at 23 because the birth controls we had identified as "safe" for me failed.
In 2012, I interned with an organization in DC that required me to travel for trainings with young leaders all around the country. At the West Coast training held in LA I was at the crux of my monthly PMDD symptoms but it was here that I met disability and LGBTQ+ activist Ki'tay Davidson and we had a two-hour conversation in the middle of the hotel lobby. Ki'tay was the first person to tell me I could call myself disabled. I remained hesitant to do so but I have held onto his affirming words and good energy to this day. Ki'tay Davidson was committed to racial justice, gender justice, disability justice, and trans liberation among others. His memory is part of why I celebrate Disability Pride Month. He was the first person to crack the door separating myself from disabled community and I didn't even know that until after he died in 2016.
Over my educational career (1994-2024) I saw few, if any, teachers like me. Few teachers who were visibly, or loudly, or clearly queer, trans, or disabled. I spent years convinced I was too stupid to do so many things and the resulting decades of missed opportunity are something I mourn. If autistics, chronic pain and fatigue navigators, hypermobile folks were visible in my life, perhaps I could have felt less alone and more like my future had possibilities even if I didn't hide all the ways my body and mind work differently. Still, I choose disabled instead of differently abled. I choose identity first language because while my diagnoses do not disable me, ableism does - and violently so.
Allow me to elaborate. There are multiple models of disability; the social and medical models being two prominent ones. The medical model blames the patient and their diagnoses for creating uneven/unequal/inequitable life circumstances - and that without accounting for social determinants of health such as age, race, class, etc. The social model, however, targets society's/ies' responses to disabilities and even the ways the exclusion of disabled people is written into social norms and expectations. So, how can I believe in the social model but claim disabled as an identity and one I am proud of at that?
The answer is complicated and nuanced. There are many layers to go through and too little time to do so in a blog post. Having medical and neurodivergences can be frustrating and quite literally painful. But my experiences with these divergences from the medical/neural norms make me, well, me. I would not be who I am if I wasn't autistic; if I hadn't spent the better part of my 32 years in chronic pain; if I wasn't a fall - or at times fainting - risk. My experiences have shaped me and made me who I am. I want to fast forward, not quite to the present day - though we'll get there before this blog post is done. But if we fast forward back to when I was diagnosed as AuDHD, we also fast forward to my meeting another disability justice advocate and scholar: Dr. Ashley Shew. I bring up Dr. Shew because she has been kind enough to mentor me in many aspects of navigating the neurotypical rules of academia and also because of her 2023 book Against Technoableism: Rethinking Who Needs Improvement.
Many abled people - who are only ever temporarily abled - see disabled people as needing "improvement" whether that be prostheses or just needing to "work harder" to meet neurotypical and abled understandings of where and what we should be in society. A description of Shew's book from the publisher's website reads as follows:
A manifesto exploding what we think we know about disability, and arguing that disabled people are the real experts when it comes to technology and disability.
Shew's book challenges what "normal" is, who "disabled" people are, and whose voices we should be listening to when it comes to dis/ability accommodations, rights, and advocacy. Shew's work has informed my own, but Shew has also done something that I didn't know was possible; she introduced me to disabled community. A strong, vibrant community where care needs aren't a burden, where accommodations are forethoughts not afterthoughts, where I can stim in public, or turn my camera off on the zoom because it feels like forced eye contact with dozens of people at once.
During disability pride month I celebrate that community. I celebrate my connections to people like Ashley Shew, and Ki'tay Davidson, and Nathan Selove, and... and... and.... I celebrate how far we've come even while I know there is more work yet to do. I celebrate the work that has been done and prepare for the work that still needs doing. I am proud to be a survivor - however permanently or temporarily - of ableism and I am proud to be someone who fights back.
The ever-asked question of "so what?" comes to mind as I try to wrap up this blog post about my/an ongoing lived reality. Why does this matter? If you made it to this point in the post perhaps you've realized I've written it in the flow of how my mind works more than a straight line that gets directly to the point. The reality is, why this matters is because "Almost everyone will experience disability at some point in their lives, yet the abled persistently frame disability as an individual's problem rather than a social one." (Shew). If you're currently abled, listen to the disabled people in your life. Hear us when we share our limits, stop pushing us to act "normal" or "healthy." Stop setting health as a sign of our value in society. Disabled people deserve a chance to be proud of what we can do and not have to feel ashamed for what we cannot. No two people experience the same disability in the same ways.
Today, I am proud of my community. I am proud of the long history of disability advocacy and how hard we have fought to obtain a semblance of equal rights even as those rights are no where close to equitable. To my community, it is an honor to fight alongside you for justice. Even as I navigate my own internalized ableism, I strive to see myself as someone deserving of the accommodations I need to be in society as a teacher, as an advocate, as a human being. I don't need to be "improved" to deserve better and humane treatment - I just need to be my queer, crip, and human self.
Happy Disability Pride Month!
Comments