Being Offered a Seat at the Table as a Young Disability Advocate

My name is Derek. I’m a 17-year-old non-binary, queer disabled advocate. I’ve had cerebral palsy (what I like to refer to as floppy muscles) since I was born, so I’ve always been disabled. I’ve also recently been diagnosed with spondyloarthritis and a couple of other autoimmune conditions (commonly referred to as my angry joints). These conditions are hard to manage as a teenager sometimes because they often leave me in constant pain and chronically exhausted, but I do my best to make all my appointments, take my meds on time (my ADHD makes that tricky), and still manage school and other priorities, as well as just being a teenager and growing up. 

I like to say I’ve been an advocate all my life since I was born disabled. I often perplex doctors with my knowledge of my medical history or research regarding illnesses I have or suspect I have. I often feel I leave them questioning “Who is this kid? And why are they talking while their mom just sits there?” after appointments. I’ve always been an educator, sharing bits and pieces of my experiences as a disabled kid (and now a teenager) with classmates and anybody who will listen (even going as far as to prepare PowerPoints and videos explaining my illnesses to answer common questions in third grade). I started my Twitter account in January 2018 and began sharing bits of my life, advocating for others, and lifting others there as a way to build community when it felt like nobody “got it”. I did just that for a while, and then I got publicly outed as gay in February 2020. I flipped that around and began sprinkling in LGBTQ advocacy to my existing advocacy. Since then, I’ve amassed over 1,500 followers and am amazed at the community I’ve built and the people I’ve met. 

I was recently selected for a seat on The Council of State Governments Center for Advancing Policy on Employment for Youth (CAPE-Youth) 10-member working group of disabled youth. The group’s purpose is to give input on and assist in the creation of state transition policies while working directly with high-level state and federal government officials.

Everything for the CAPE opportunity started back in September when my vocational caseworker sent me an email with the subject line “Youth Leadership Opportunity”. I expressed to her from the very beginning that I was an advocate and looking for any ways to get further involved in developing policy or advocating on larger levels. That subject line definitely caught my eye. Inside the email was information about CAPE, an application, and a due date: September 17, the day after my birthday. I eagerly thanked her for putting it on my radar and began the application. I wrote 900 words about who I was and what my future goals are (to open a pro bono/sliding scale law firm specializing in ADA non-compliance and SSI denial claims), got a very nice recommendation letter from someone I look up to and attached my resume. Then, I sent it back for submission. One month later, I got a congratulatory email from the program director.

To be honest, from the start, I was a bit skeptical about the whole thing. It seemed too good and too right up my alley to be true and a thing I had been accepted into. But, I looked past that and graciously confirmed my participation because there’s no way I would turn down the opportunity to craft legislation that would affect me and millions of other disabled youth at such a young age. I’m the youngest of the group, with the rest being either current undergraduate or freshly graduated students. It’s such an amazing opportunity for me personally because as I mentioned earlier, I’m very intrigued with policy development. Being able to develop policies to be used by multiple states as a 17-year old is amazing.

I’m mainly going for the experience of working with lawmakers. In the future, I intend to be working with judges, members of state and federal legislatures, and other government officials very regularly to assist in reform and revitalization of SSI and Medicaid (side note: Alabama, where I’m from, has yet to expand Medicaid). Having the basics of how to address them and how to present myself down early is going to be invaluable when I need it. Additionally, having more personal connections with lawmakers is critical in the work I’m doing and plan to do, so starting these connections early and informally is advantageous. I’m also going to the December conference to show that young people (yes, even teenagers) have ideas and plans that can be valuable to conversations. That’s why having a seat is important to me. I see it as a recognition of “yes, they’re young, but they also have ideas that can help,” and that is something that is recognized way less than it should be. 

We’re teenagers, so we will inevitably make bad decisions or say the wrong things. However, that doesn’t delegitimize our desire to help make the world a better place. We should be recognized as valuable members of society who can make valid points, and sometimes, even change the world. That’s why I’m going to this summit; to be recognized in my personal advocacy efforts, and pave the way for those who come after me to also have their voices heard. 

Thank you for reading. I’m so excited to come back after the conference and tell you all about it!