My Journey to Disability Pride

Hey y’all! I really want to get back into the swing of long-form personal blog posts, so this’ll be one of my first attempts at that in a while. July is Disability Pride Month. I know my piece is a bit late (it’s July 31 as I’m putting finishing touches on it and posting it), but it was emotion heavy and tricky to write continuously due to medical trauma I’ve experienced. I kind of want this piece to allow me to look back on my journey of accepting myself as disabled and connect or offer advice to newly disabled people. This post will mention ableism (both internalized and externalized); have descriptions of institutional abuse; discuss surgery and post-op complications/mention blood; and discuss mental health, so I wanted to go ahead and mention that at the top here. This will be a little jumpy, just depending on the order in which I remember things and how I feel they all fit, so I apologize for that in advance if it bothers you. All that said, I think I’m ready to jump into this now.

So, let’s start by going back to as early as I can remember. My earliest memory is literally me in OT learning how to write my name with my therapist, Debby. I remember the paper I was writing with had huge dotted lines and my only objective was to write my first name in between the lines. Then, as I got better, we progressed onto my last name, and then we progressed into other fine motor skills I struggled with. At this point, I don’t think I was aware that I was disabled, just that I had a lot to do and was away from other kids my age a lot. My parents did a really good job of not “treating me as disabled”, meaning that yes, I did get the help I needed, but they didn’t want me to think that getting help made me any different than my peers. I was okay with it back then, as I think younger me wouldn’t have been able to understand anything other than “you’re different a little bit”, but I’m glad that as I’ve gotten older than age 3, they’ve let me explore my disabilities and identify with and feel them however I want to.

Gonna time jump a little here to he first time I truly realized I was disabled. I had a horrendous kindergarten experience. I needed help (and still do) with “simple” things, such as opening cartons, tying shoes, and fastening buttons (on pants/button-ups etc). We put all of this in a 504 plan, as that’s what my school system (at the time), said was the only way I could get accommodations (spoiler: they lied). Everything I needed was in that 504, and was supposed to be respected, it wasn’t. I have a feeling that my teacher didn’t even read it. That school was an inaccessible hell, and I vividly remember comparing it to a prison on multiple occasions. We fought and fought and fought, up to the board, until we finally decided to move out of the district, as my brother was on the way. So, we moved from that inaccessible hell to the amazing system I’m in now, and I’ve never had a problem with getting my accommodations met.

For as long as I can remember, I have always been an educator/advocate for myself. I believe it was 3rd grade when I started making PowerPoints and asking my teachers to allow me a few minutes on the first day to explain my disability (at the time, it was only one, with a spinoff) to my peers. Most of them agreed, and I was given time to explain everything and take a few questions (most notable: “what’s that thing on your leg?”). I knew that educating my peers from the get-go, as a whole, would lead to me having to answer less of the hundreds of repetitive questions I would get throughout the year. But, I still had questions to answer, and was open for turning bullying or belittling questions into educational moments year-round.

I’m going to jump ahead a bit (again) to the end of 2018. I had just gone through my first foot surgery consult. I was excited, hot on my heels, because I was promised that this surgery was going to be the surgery. It would fix my flatfeet which created a bunch of cerebral palsy issues. Surgery was on Valentines Day 2019, and everything went “great”. I went in at 5, as ordered after being NPO all night. I believe it was about 10am when I was wheeled to surgery, but I don’t think it started until about noon. I remember going under while talking about what college I wanted to go to. I woke up in recovery with no apparent problems other than a little pain. I spent the next month(ish) recovering at home with my foot in a cast and being completely non-weightbearing, while doing school from there too. I distinctly remember a sharp pain in the arch of my foot at the bottom. Come to find out, that was the pressure sore. Cast removal day came on March 26, and I got the first glimpse of the sore. It didn’t look very bad initially, but it continued to worsen as I began my rehab. I had to advocate like hell to be taken seriously, and finally my amazing physical therapist (shouts to you, Casey) called a wound care nurse who confirmed that it was a pressure sore and gave me all sorts of stuff to start treating it at home. We did that and it eventually went away, as it was approaching level 4 status. I confronted my surgeon about it and he finally took responsibility.

Later that year, as I was still recovering, we found that there was more work to be done. I had a screw in my heel that caused serious pain, plus there were a few positioning changes that I still wanted to make. I brought it up to my surgical team, and we scheduled a revision surgery for fall break (mid-October) 2019. We went through with it, and it went exceptionally well, leaving my foot in probably the best shape it’s ever been in.

Anyway, off of surgery. Let’s pop over to my public advocacy and Twitter journey. I started a Twitter account in late 2018 and was followed by my mom and a couple other friends and classmates. It was never a huge thing and I never intended to become the advocate I am today. I then got submerged into the disability community on Twitter and shared my stories. I met other disabled people and was there to support those who needed it. I started really blowing up after I was outed on Feb 2, 2020. I put out that statement and reclaimed my outing and met so many amazing people. It was from that point forward that I decided I wanted to become a public disability and LGBTQ advocate. I did just that, boosting disabled people and being more open within my communities. That was truly the first moment I felt pride in calling myself disabled.

Fast forward to the middle of the pandemic. I was growing my base and working well on Twitter, but the horrific pain in my back and hips was just getting worse. I had been having it for three years, but my rehabilitation medicine doctor was very dismissive, something that happens a lot when you’re disabled and in pain. It kept getting blamed on my cerebral palsy. I distinctly remember saying “no, this is different” multiple times and then it was chalked up to be nerve pain. I remember doing research on rheumatology, cause I got a random hunch that said “look at this whole other specialty that you’ve never worked with before” so I did. I looked into it and found juvenile idiopathic arthritis. I begged my rehab med doctor to just write the damn referral, and he wouldn’t. So, at my yearly physical, I brought everything up to my peds team, and while they couldn’t see anything wrong, they wrote the referral anyway. Huge thanks to Dr. C for that. I got into and went to the Department of Allergy and Rheumatology at the children’s hospital where the rest of my appointments were within 2 months, which honestly surprised me. My rheumatologist Dr. W greeted me with a warm smile, a heavy German accent, and jokes. While we were going through my symptoms, he said that I had a “weird case” but that he “wasn’t saying [I] was making it up” and that was incredibly reassuring and affirming. At the end of our appointment, he ordered 7 tubes of blood and sent me for an X-ray. My x-ray was clear, but my bloodwork returned with a positive HLA-B27 marker, which indicated that I was at higher risk for rheumatic disease development. I felt relieved that we had something to work off of, and Dr. W ordered an MRI. It was scheduled for election day 2020. So, we went and got it done.

About a week later, Dr. W called my mom and gave me the official diagnosis: juvenile idiopathic arthritis, specifically spondyloarthropathy and sacroiliitis. We came up with a treatment plan including sulfasalazine and methotrexate. I began following my treatments diligently, relieved that I finally had answers and something that was working. Well, at least something I thought was working. I had a horrific reaction to methotrexate (the first in the step therapy up to Humira) and ended up having the worst weekend of my life. But after that weekend, we stopped it completely and put in s new prior authorization for Humira. By the grace of God (or whatever spirit you believe in, if any), it was approved shortly after we sent it in, and I had my first dose of Humira on December 18, 2020. I know it’s weird that I just remember dates like that, but that was the first day I went without feeling as though my hip was falling apart in 3 years. And I felt proud that I stood up for myself and grateful that I finally found a team that listened to me.

All of that to say, I am proud to be disabled. I had a long journey to self acceptance and working through serious bouts of internalized ableism and panic attacks along the way. I’m not perfect, sometimes I still get bummed by the things being disabled prevents me from doing, whether by inaccessible spaces or limitations of my own body. But, I am proud of my journey. I’m proud that I found such an amazing community and that I finally have people around me that let me express myself and be who I truly am inside. I am proud of how hard I’ve had to fight to be heard, and I am proud of everyone still fighting to be heard. I’m proud of all the disabled people around the world who self diagnose, who force doctors to listen to them. I’m proud of all the amazing advocates I have met along my journey, like Tinu, Charis, and Corin, and all the work they do. I’m proud of the friends I have made through my advocacy, some of whom are my now my best friends and parts of my chosen family.

Most importantly, I am proud of myself and I take pride in my disabled identity. I hope you are too. If you’re struggling with a diagnosis or anything disability-related and you need a listening ear, I’m here for you. Shoot me an email and I promise to be as much of a listening ear or advice giver as I can for you.

Thank you all for reading. This was a deeply personal article for me to write, but it felt good because it gave me the opportunity to reclaim my experiences and share my pride in being disabled with you all. If you liked this article, I would appreciate it if you would consider sharing the article or sending me a tip (completely voluntary!) with Ko-fi, Venmo, or Paypal. All of that information can be found here if you want it. Once again, thank you for reading, and please don’t hesitate to reach out if you need to talk.