Disability Pride Month

To end Disability Pride Month this year, I want to share how I've developed my own sense of pride as a disabled person by learning to take up space without feeling shame about needing accommodations.

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Disability Pride and Autism:

My journey with disability, as I have shared before, has not always been positive. For most of my time in K-12, I did all I could to distance myself from being autistic. Whether it was explaining that it wasn't noticeable (it was), finding ways to seem useful to my peers, or practicing different ways to appear more "normal," I tried everything I could possibly think of to appear neurotypical. Meanwhile, I exclusively wore sparkly neon glitter outfits during most of that time in my life, participated in many speaking and advocacy events for the school, and had absolutely no concept of the volume of my voice. I was quite a presence, and wasn't fooling anyone. While this combo didn't help me make friends, I was able to slowly form community as I found a balance between being myself and toning down the sparkles (I have worn enough sparkles for my entire lifetime). I didn't start feeling confident in my autism identity until late high school, when I had community that accepted me for who I was and was willing to have conversations with me about social cues I missed without making it about a personal failing.

Now, I try to have a balance. I believe in self-growth, and am always trying to improve myself. I also know that it's not worth having intense shame or social anxiety. I have no idea how loudly I'm talking, no matter how many times people ask me. I naturally assume people will talk about what they want to talk about, and I am not always the best about asking questions for that reason. I sometimes miss sarcasm, and need it explained to me. But now I try not to view that as a moral failing, or something I should feel shame about. I've also found the inverse strengths of these things; my public speaking voice is never too quiet, I am good at letting people ramble on about a topic they are interested in, and I like to think I am still funny even if I miss sarcasm. I am proud of being autistic because autism plays a large role in my personality, and I (hope) the people who choose to be in my life like who I am.

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Disability Pride and Hereditary Spastic Paraplegia (HSP)

I was diagnosed with HSP in 2016, and spent many years getting to the level of physical fitness I have now. When I was first diagnosed, I became a part-time wheelchair user, and was one for about 4 years. I got a disability parking placard, learned how to use different mobility aids, tried lots of different medications that impacted my ability to focus, and missed a decent amount of school for medical appointments. This experience felt really isolating in the beginning, because I was very aware of the fact that at my very small high school, I was one of two people in general education classes who used a wheelchair. I was very resistant to using any mobility aid; I felt isolated because of how different my life looked compared to my classmates, and I was upset that I couldn't focus on school the way I normally could. However, this experience also led me to become a disability advocate and is what led me to reframe how I thought about my autism.

My disability pride largely stemmed from my experience with HSP in the sense that I learned how to do whatever I set my mind to while also navigating health complications. However, I do want to clarify: my disability pride does not come from no longer needing a wheelchair, or any sort of phrasing that implies I am better off for not needing mobility aids. I love the athleticism I have right now, but that doesn't change the pride I feel about my disability because my worth doesn't come from my mobility aid status. Instead, my pride comes from seeing how I have navigated improving accessibility for myself and others through my experience with HSP, and for learning how to be confident enough in myself to value my health over acceptance.

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Disability Pride and Crohn's/Colitis

This is my newest diagnosis, and is currently the one giving me the most trouble. I am constantly adjusting supplements, battling between eastern and western medicine, facing judgment from western medicine doctors for certain treatment choices I am making with the help of other medical experts, and am not 100% symptom-free yet. However, this experience has forced me to really look at my health. I am currently able to build muscle faster, feel a lot less bloated than I used to, and overall feel better now that I am finding a balance between nutrition and living life (aka I found amazing gluten-free, dairy-free, corn-free cookies). My current struggle is going out to eat- being free of that many things can make it difficult to go out with friends and family. I also sometimes miss bread, dairy ice cream, ramen, and most Italian food. However, I also know that I am setting myself up for success health-wise.

For me, pride with Crohn's/Colitis has been having the confidence in myself and loving myself enough to maintain my boundaries. I don't break my diet. I bring my own food, eat before and order a side, or find restaurants I can eat at. I don't need to feel shame for having digestive issues, and I don't need to feel bad for needing to look at menus before going places to see if I can eat there. Before, food was my resistance to losing control of my body in other ways. Now, food is a tool I can use to fuel my body and promote health (with exceptions, I like my cookies). This lesson in balance is probably not something I would have learned right now if I didn't have the hospitalization experience I had in January.

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In all three of these examples, the connecting idea for me has been resilience. I've had to try again, start over, or redo things more times than I can count. I've advocated too hard, been too intense, let things go I shouldn't have, and held onto things that weren't important. But each time, I got back up and tried again. I learned how to build community, I learned how to balance physical accommodations, strength, and fun, and I learned how to find strength in choosing health, de-center food in community experiences, and find pride in caring about my health. None of this was easy, and I am still constantly learning these lessons. But the process of balancing accessibility, health, and the rest of my life truly has left me feeling pride about being disabled. And truly, I hope all disabled people can feel pride in their disability identity and who they are.

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Thank you for reading about disability pride. If you have any questions or comments, please comment on the blog, reach out at @Anniekrollblog on Instagram or Facebook, or email me at Anniekrollblog@gmail.com. I hope to see you next week!