Being Known, Being Seen by Meghan Waldron

I was born with a genetic disorder called progeria. I was around two years when I was diagnosed (2003), and right around that time, the gene causing the mutation was discovered. Four years later, the first clinical trial started to test a new drug that could potentially slow progeria’s aging effects. In 2020, thirteen years after my diagnosis, this drug was approved by the FDA and is now the first drug proven to treat my condition.

Progeria is an extremely rare disorder that only affects approximately 300 people worldwide, so most people had never heard of or seen it before my diagnosis. Now, almost 20 years later, public awareness of it has grown. While this has led to potential treatments, a future cure, fundraising, and awareness, it comes with struggles for those of us who live with it. Sometimes, it’s weird to be so easily recognizable, and it can be exhausting being mistaken for someone else with progeria. Sometimes, I just want to turn progeria off for a while, so people can see who I really am without seeing a physically disabled person, as well.

I have a lot of conflicting ideas of being visible with having progeria. It can be hard to articulate in a way that makes sense; things aren’t as straightforward as they seem. I’ve come to know I don’t have to feel one way or another on the topic. It is okay to be nuanced, and it is okay that I don’t know exactly where I stand.

The Progeria Research Foundation, the only foundation working solely towards finding treatments and cures for children and young adults with progeria, was founded two or three years before I was born by the mother of a boy who had progeria. At this point, little to no research had been conducted on the disease; all that was known was that it caused accelerated aging. Throughout my lifetime, I have been able to watch the awareness of progeria grow, to witness other kids with progeria become well-known worldwide, all the way to now, when an increasing number of people (mainly online) will ask “do you have progeria?” or a similar question, because they have either seen or heard of it somewhere else. It’s weird, being known and recognized, because I spent most of my childhood having to explain my condition to others. This is the duality of advocacy: it illuminates everything, even when you sometimes would prefer privacy. When I first met one of my closest friends at college, he already knew what progeria was, and as a kid this was not something I could fathom outside of the medical world. So, the awareness is fantastic. PRF has held countless successful fundraising events which fund research and drug trials where the families don’t have to pay anything for the drugs, housing, or travel. I also don’t always feel like I have to explain my existence anymore because many people have a basic understanding of what progeria is. And, along with that, I am able to use my voice (as the ambassador for PRF and otherwise) for disability and accessibility awareness, which is so incredibly necessary not only for kids with progeria, but all those with physical disabilities.

Being disabled is not something I feel ashamed about, nor is it something anybody should feel ashamed about. But sometimes I wish I could remove myself from my disability. I want my thoughts and my actions and my creative work to be seen, without that being tied to something physical, because I feel like those aspects of me are the most important. I am a fiction writer (I am studying creative writing in college) so for me, all the things I write are conglomerations of ideas, people, maybe dreams or places I’ve seen briefly, or anything that comes to mind. And while some of this may be tied closer to who I am as a person, my writing is usually pretty far removed from my lived reality. I like to make up worlds and scenarios that aren’t real, because when there’s too much “real life” going on, sometimes I just have to find an escape. Writing and the stories I make are my escape, and I hope that my stories will become escapes for others, too.

What are the implications of being a fiction writer while being disabled, and not only being disabled, but where people know your disability and maybe you as well? When people read my writing in the future, I don’t want them to think about me, I want them to simply immerse themselves in the world that I have happened to create. An unfortunate bias happens when someone meets someone else who is disabled where they assume the disabled person is less capable than an able-bodied person. Really, to put it bluntly, we can get dehumanized. For me, just because I’m short and can’t carry heavy loads and I look different, for example, doesn’t mean I can’t do literally anything else. I wish this bias could be removed and all able-bodied people could see disabled people like they’d see anybody else.

When Dallas (Graham, here at the Red Fred Project) tells people about the Red Fred Project, I can only assume some of them question the importance of it. I don’t doubt the amount of people who question the importance of fiction writing as a whole (as a writer, I question it too, but that usually just means I need to get a little more sleep). But the project isn’t just about creating fiction children’s books for the sake of it. The point is that anyone could pick up one of the kids’ books and center themselves in this imagined world the kid created, rather than in the kid’s reality. Readers don’t have any option except to take the story at face value and appreciate it for what it is. The point of the project is that while some of the kids Dallas works with may not have the ability to write, or they’ve never had experience writing, and most don’t have the means to publish by themselves and may never be able to, Dallas brings these dreams into reality, because stories are important.

Every person has a unique lens on life because of their experiences and you never know someone’s story, whether real or fictionalized, until they tell you. These stories are fascinating. Dallas and the Red Fred Project help the world view the kids he works with not just “sick kids” but as something more—who they really are.

I know from experience that it’s frustrating to be seen as nothing more than a disabled person, which is what causes me to sometimes want to be invisible. My publicity primarily holds one purpose: bringing awareness to a very important cause—but if I can write stories and send them into the world without the world knowing my face is attached to them, I might help spread another important message: make sure you’re listening to who a person really is, and not just who you think they are.

—

You can order Meghan’s children’s book here: http://redfredproject.com/shop/runningonthewind