Disability Pride Month

Reflecting on July



I decided to do a project focusing on disability pride for Disability Pride Month about halfway through July, giving myself effectively no time to make this happen. Yet, I found a few people excited to collaborate with me on this. Through the process, I've realized that this is a project that can't end when July does.

My experience with disability doesn't begin with my own. Throughout my childhood, I was brought to work by my mother, grandmother, and my mother's best friend, all of whom worked with disabled people as aids. In middle school, my grandmother and mother opened an art studio for disabled people. In high school, we lived with a woman with cerebral palsy so she could have access to full-time care. I've seen countless triumphs, struggles, joy, frustration, success, and sadness. I've always had the opportunity to see the vast expanse of humanity that exists within the disabled community. As I got older and met more people, I realized others didn't have the exposure I did and therefore had misinformed and harmful views on what disability means. With even more time, I found that well-meaning allies with just as much exposure as me also had those views. Unfortunately, we're inundated with stereotypes and beliefs that to be disabled is to live a life of pure suffering, a life not worth living. On the flip side, some allies and parents of disabled people believe that the connotation of disability is so negative that we shouldn't call anyone disabled at all, or that to be disabled is to have a superpower. This mindset erases and undermines all that the disabled community has fought for and relieves the pressure put on society to accommodate and provide accessibility and acceptance.

The timeline in which I've experienced my own disabilities is murky. I wasn't diagnosed with the things that affect me the most until adulthood despite having been born with nearly all of them. This is where I'd be told not to divulge too much personal information, but that's exactly the problem I'm trying to fight against. We shouldn't be made to hide, or made to feel like these things are meant to be secrets. I have a genetic condition called Ehlers Danlos Syndrome which affects the collagen in nearly every part of my body. It creates a lot of injuries, chronic pain, and over all failures in how a body is generally supposed to work. This didn't start to rear it's head until I was an adult. There were signs in childhood but the problem with having an undiagnosed genetic condition such as this, is that most likely your family experiences all the same things so the people you're around the most think those things are normal. Because of EDS, I also have a condition called dysautonomia which translates to a dysfunction of the autonomic nervous system. The way it presents in me is an abnormally high heart rate nearly always, but especially while upright and standing, heat intolerance, chronic dehydration, excessive sweating (hyperhidrosis), an inability to digest food properly (gastroparesis). This condition is by far the most disabling for me. I have to spend most of my time laying down, otherwise it feels like I've been exercising for hours at a time. Earlier this year, after a decade of begging every therapist and psychiatrist I've ever seen, I was finally able to get assessed for autism and got diagnosed. This is something that has genuinely affected me my whole life but it was missed because I was a quiet, well-behaved white girl who loved rules. It's hard for society to find anything "wrong" with that. This diagnosis has given me an opportunity to know myself on a deeper level than ever before, and while there's a lot I have to grieve, I'm overjoyed to know I'm part of such a rich community of people. PTSD is something I acquired, and the only thing I won't openly discuss the origins or details of. All of these things at some point in my life have been, and currently are disabling for me.

But I didn't always know I was disabled. I started to identify with disability after getting diagnosed with EDS in 2015 and dysautonomia in 2016 but truthfully, I was disabled long before that. Even with my exposure to disability and knowing that it's not inherently bad to be disabled, I never thought I could consider myself disabled until I couldn't work or had visual proof of it, like a cane. It's silly because I had to drop out of high school because I was unable to ever complete homework or focus in class, I experienced such intense dread at the thought of having to go to school, and experienced chronic suicidality because of the pressures. Certainly I was disabled at that time. And even before that, when I had the same problem in middle school and was threatened by the school district with juvenile detention. Despite all of my experience with disability, I didn't see disabilities like mine. Had I seen accurate representation of all the ways disability could present itself while growing up, perhaps it wouldn't have taken me so long to accept disability within myself and perhaps I could have advocated for myself to get help in existing with my disabilities sooner.

Disability will always be a part of me, my art, and how I interact with life. It will always dictate when I can do my work, how I can do my work, what my work says, who my work is for. My autism makes me a great photographer because I've been watching life through a window for as long as I can remember. I see moments others don't because I'm never involved the way others are. PTSD gave me compassion and empathy for my subjects, and made it easier for me to connect on a deep level necessary for capturing soulful moments. At the same time, my chronic pain, fatigue, and discomfort makes it beyond difficult to do the amount of photography I dream of doing. I sometimes go months without touching my camera because I have to prioritize survival above all else. I'm currently writing this passage while bed bound.

As is evident by this point, this project is important to me because I believe our stories deserve to be told. So rarely do I see us included in conversations about activism or social justice. We're consistently left out of conversations, despite the fact that we're the one marginalized group you can become a part of at any moment and you likely will if you live long enough. Disability issues, justice, activism, and accessibility should matter to everyone because someday, it will matter to each individual. We should not be hidden away for the comfort of those made uncomfortable by our presence. We are meaningful members of society. We have value to contribute.

I can't stop photographing disabled people because our stories will never end. We'll always be here.

Here is a photo of me I didn't intend to take, getting IV saline for my dysautonomia that is considered treatment resistant at this point. I happened to have my camera with me and I had two hours to kill.