Every year a delegation of teenagers with disabilities come to the Florida Youth Leadership Forum (YLF) to learn how to be an advocate. I’ve attended many years, first as a delegate, more recently as staff, and every year I leave with a better sense of what it means to be a person with a disability. This year, my knowledge came via an encounter with rock bottom—literally.
For some people, biting it on the concrete outside of a dorm at Florida State University is not a particularly noteworthy occurrence. I’m sure plenty of undergraduates fall victim to the obtrusive mound of concrete that proved to be my downfall, but I imagine most of them can laugh off a fall—and any incriminating videos that follow—with the same Friday-night inhibition that gave the sidewalk the upper-hand in the first place. I cannot. My particular disability, a rare form of Ehlers Danlos syndrome, ensures that one fall can have repercussions that ruin not only my day, but often my week, my month, occasionally my year. As soon as I could be sure I’d landed without sustaining the one head injury to win them all, I found myself thinking both, I can’t believe this happened here, and thank goodness this happened here.
According to its website, the Florida YLF emerged as “part of a national initiative that was started in 1992 by the California Governor's Alliance for the Employment of Disabled Citizens.” Since July of 2000, the Able Trust in Florida has brought a diverse delegation of approximately 50 students with disabilities—generally high school juniors and seniors—to stay in the Southgate Dorms at FSU where for five days they participate in a variety of activities and programs that introduce them to skills and information that will, hopefully, transfer to lifelong leadership and advocacy skills they'll apply to both their lives and their communities. In practice, there are delegates that resist the call. However, it is rare to find a participant who does not benefit from five days of being treated as self-aware adolescents and young people with disabilities—at the same time.
Participants in the other camps housed in the FSU dorms quickly align themselves with the themes of their programs—soccer player, Indian-American immigrant—but not all YLF delegates are quick to identify as having a disability. My observation is that this is often due to their having been told they are no different than their typical peers. Some children of the post-ADA generation deny the impact their disability has on their lives. As a delegate, I also arrived at YLF believing that my success in mainstream schooling would allow me to transcend the disability world after high school.
At sixteen, I hated the idea of being a burden. At YLF, everyone needed accommodations, and I discovered how much easier giving into certain adaptations could make the rest of my life. I was advised by people with a variety of disabilities who unapologetically asked for assistance. The staff anticipated our needs without forcing accommodations on us, which meant that I could walk with the group without being left behind, but if I decided to switch to a wheelchair, it would be there. I began to see that accepting my limitations could give me more agency rather than taking it away.
That first summer was also the first time I was introduced to disability history -- Justin Dart, “nothing about us without us,” and the Capitol Crawl. I had lived through years of speaking on panels about disability and understanding IDEA and ADA in detail without knowing anything about the people who advocated to ensure I could do this. Now, I give the disability history presentation at YLF, ensuring that delegates know that not only are there others dealing with the same issues they do, there have been people in their place for generations. Not only that, but they do not have to accept that the obstacles they encounter will always be there. They can advocate for change, the same way their forbearers fought for the curb cuts they see every day.
This awareness also allows both staff and delegates to admit that having a disability does make life difficult. Sometimes things are hard, and sometimes one’s disability can be blamed for that. In some ways, the acknowledgment of that truth is what shifts the minds of delegates who soon want to come back year after year to ensure that the next generation of teenagers with disabilities knows they are not alone in their triumphs or their despair.
To be clear, YLF did not somehow force me to abandon my ambitions or instill the idea that I had to tether myself to the disability community forever. Rather, it gave me a new perspective on what it meant to live with my disability, rather than in spite of it.
It’s possible that I should wish that none of the delegates saw me crying on the sidewalk that evening. The people at my side were some of the ones I trusted most in the world, and perhaps I should have held back my emotions since I knew I was safe. Instead, I let myself cry, because I knew those same people understood the wave of disappointment that came with the reminder that my disability would always have a negative side. I could acknowledge that without being ashamed, and so I did. At twenty-eight, twelve years older than the sixteen-year-old who might have attempted to leap up from that fall to avoid being a burden or missing out on something, I sat on the sidewalk and let myself acknowledge that sometimes having a disability is upsetting. Sometimes it is difficult.
These truths are part of why self- advocacy is essential. Not only are advocates the ones who can fight to have the concrete mound removed before it ruins another minute of anyone’s life, but they have to be able to experience their disability in all its complexities in order to speak with truth and empathy about the need to change.