This story was told to CreakyJoints by Derek Schmitz, a 17-year-old author, accessibility consultant, and queer, non-binary, disability advocate living in Alabama. Derek has been volunteering with the Council of State Government’s Center for Advancing Policy on Employment for Youth (CAPE-Youth), a Department of Labor initiative that seeks to improve employment outcomes for disabled youth and young adults. They are also a Consultant and Co-Manager of Client Outreach for Neighborhood Access, a New Hampshire-based organization dedicated to improving the accessibility of policies, practices, and presence in community-facing organizations.
Here, Derek tells their story about living with multiple disabilities and the importance of speaking up and speaking out from a young age.
I was born premature and had a traumatic injury during my birth that resulted in cerebral palsy. I’ve never known life without my disability. Since I could speak, I’ve been an educator and advocate, sharing bits and pieces of my experiences as a disabled kid — now teenager — with my classmates and anyone else who would listen.
I was diagnosed in November 2020 with spondyloarthropathy, which we broke down to be localized in my hips and sacroiliitis in my back. [The umbrella term “spondyloarthritis” refers to types of inflammatory arthritis that affect both the joints and the entheses (the points where ligaments and tendons attach to bones).] One of the complicating factors of having more than one disability is that symptoms of a new condition can sometimes get written off as part of a medical issue you already have. Some of my joints are dislocated because of muscle spasms from cerebral palsy. It was easy for my doctors to dismiss the pain I was having in my back, hips, and knees as part of that.
My joints felt like they were crumbling apart and grinding on each other, like there was nothing there other than bone. I was in a lot of pain. I went through many rounds of prescriptions that didn’t help. First doctors thought it was nerve pain, so they prescribed gabapentin (an anti-seizure medication that’s commonly prescribed for fibromyalgia and other conditions). Then they thought it was muscle pain and gave me prescription-strength NSAIDs. Those helped, but I couldn’t stay on them. Finally, they told me there was nothing to do but go to physical therapy.
Learning to Speak Up
I knew my doctors were trying to fit these symptoms into my cerebral palsy diagnosis. Something was being missed. I wondered if it could be arthritis. I had Googled symptoms of juvenile rheumatoid arthritis, and as I read, I kept thinking “This sounds like me.”
I needed my doctors to take the idea seriously, but disabled people aren’t often seen as the decision-makers in their care, let alone younger disabled people. I sat my mom down and told her, “I’d like to take the lead at my doctors’ appointments.”
She agreed, and I made myself the point person for all conversations. I brought a list of questions and took notes. I made sure the medical team knew I was serious about handling my own health. The doctors were perplexed — they’re used to talking to and through parents. But that didn’t work for me. I was the one feeling the experience in my body. And no matter how much I told my mom what it felt like, she wasn’t going to be able to describe it accurately. I began to push hard for my pediatrician to refer me to a rheumatologist.
Finally, after a year of strong advocacy for my health, I got my referral. I was now 15 and had been dealing with joint pain for three years.
A New Diagnosis
The rheumatologist I visited — and still see — is awesome. He is one of the best doctors on my care team. When we met that first time, he poked and prodded me and declared me a “weird case.” But he went into it with the assumption I had arthritis, which meant a lot to me. It showed me he respected and believed me. I had blood work and X-rays and he started me on sulfasalazine, a disease-modifying drug that’s commonly used for inflammatory arthritis, to see how I reacted to it.
It was the MRI that gave my doctor the data he needed to make a diagnosis: spondyloarthropathy in my hip and back. He told me I was lucky to have caught it early.
Though I’d obviously heard of arthritis, the word spondyloarthropathy threw me for a loop. My brain shifted into planning mode. Anytime I get a diagnosis, my first thought is “okay, now that I know what this is, what are my next steps?” It’s just how I operate.
Finding a Broader Voice
As a teenager, it’s tempting to say I shouldn’t have to deal with any of this in the first place. I’m definitely hindered by having to manage my health issues. But what I actually know to be true is that the things I’m going through are literally defining my future.
For example, my health puts me at extremely high risk for COVID-19, so the past two years have been very isolating. And even before the pandemic, I was out of school so often that I lost many friends who just didn’t know how to reach out and continue a relationship with me when I wasn’t physically present. But because of that, I found Twitter.
I started an account in 2018, just posting bits about my life. Soon after, I discovered the disabled community on Twitter and began posting more about my experience and joining in advocacy efforts for people with disabilities.
Soon one of my teachers started following me — my freshman English teacher. He really encouraged me to use my Twitter posts as an outlet. He told another teacher about my account. And then they both had all of their classes make Twitter accounts — and if they followed me, they got 10 extra bonus points.
At the same time, I was grappling with coming out. But before I could make my own decision about it, a friend through an online queer space outed me on Twitter. I panicked. And to deal with my panic, I decided I’d just be out loud about being out. I revamped my entire Twitter page: full rainbows, they/them pronouns, and an updated bio. And that’s when everything really started to kick off. I continued Tweeting about my experiences being disabled, but I also started sharing what it was like being queer, being nonbinary, and being me.
Learning to Speak Up for Others
Something about my Twitter account resonates with people. I think it helps them feel less alone. We can offer our perspectives to each other and create a forum for discussion that you can’t really get anywhere else.
I call myself an advocate, but I really don’t see what I’m doing as advocacy. I do spend my time doing mutual aid, uplifting other people, and calling out systems, but to me, it doesn’t feel like tasks I have to undertake. It’s just who I am. Being an advocate has been ingrained in me because I’ve had to fight for myself for so long. My Twitter account was the first place I had a platform to fight for others.
Then last year I got an email with the subject line “Youth Leadership Opportunity.” That got my attention.
It was through the Center for Advancing Policy on Employment for Youth (CAPE–Youth). I applied and was accepted as one of 10 youths (out of a pool of 500) to sit at the table with policymakers and help strategize different policies about vocational rehab, children’s rehab, and all the state services that handle disability and transition into adulthood.
I’ve attended one of three conferences in a series, and the work is exhilarating. And through that work has stemmed other advocacy opportunities. I’ve started working with Neighborhood Access, a disability accessibility firm that goes around to places to ensure accessibility, as well as provide training from the inside out on how to address disabled people.”
Having outlets for my advocacy is awesome because I really feel like I’m setting myself and others up to succeed. I’ve got college credits. I already have a job lined up. And I’ve got my disease mostly under control. Things are a whole lot better than they were when I originally started.
My Advice for Disabled Youths
Find your organizations. Look in your state for things like Vocational Rehabilitation services and other types of assistance that you can get.
Cultivate community. The Twitter community is amazing. I cannot recommend it enough. It helps you feel not as isolated when you have people who you know you can talk to.
Stand up to people in power. I know it’s intimidating. But we have the possibility to change the world. We need more advocates. Find something that you’re passionate about and challenge the status quo. A “simple” action you can take is just reaching out to your local legislators about your selected issue. You may only get responses from aides, but you get the office’s eyes on your issue and your name out there.
Be a More Proactive Patient with ArthritisPower
ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.
If you’re interested in being a patient advocate with ArthritisPower and helping our efforts to engage more diverse patient groups in research, check out our Patient Engagement Advisor Program.