When I first wrote about applying for disability, I mentioned a standard practice of the Social Security Administration: default semi-automatic denials of disability claims. On average, it takes 3-5 years for someone who is disabled to be awarded benefits. This routine dragging out of claims affects me and many others financially and emotionally and also feels immoral and unjust. The disability process has been intentionally crafted to be as difficult as possible to navigate and even survive, yet this program was founded for the purpose of helping people live better lives.
The following letter is my formal response to a denial of my first claim. To be clear, many claims are denied twice before moving to a hearing with a judge. I am sharing this publicly because I want to expose the vulnerability so many go through as they seek disability – as they seek resources so they might live longer, healthier, fuller lives in the face of significant barriers to a substantial work-life.
Before I share my letter, here are some reasons I was told I am not disabled under the rules of the Social Security Administration:
+I’m on the school bus sitting behind an older girl. She is playing with her hair and I stare at her, intrigued. She turns around and says, “What are you staring at, white girl?” I blush deep red and look away, unsure what I did wrong.
+I still wear my brother’s hand-me-downs. I’m comfortable wearing shorts that reach my knees, jeans with holes in the knees, and shirts multiple sizes too large for me. But I begin to feel self-conscious because the other girls and some of the boys bully me. I am pressured to start dressing more like a girl and I begin to wear tighter jeans and shorter shorts.
+A new boy moves to town and he becomes my boyfriend. We kiss behind a building during a school field trip. We ride bicycles and play soccer together.
When I was a child I got into everything. I mean, everything. At least, everything kids get into when they live in southern rural America in the early ’90s (except somehow I skipped the drugs and wild parties). I climbed trees, I played in ditches and mud, I “planted” corn in the fields behind my house from kernels stuck on the left-behind harvested ears. I helped my mother and grandparents in their vegetable gardens. Three channels on our television set meant I watched Mr. Roger’s Neighborhood, Sesame Street, The Simpsons, Star Trek, and cheesily-dubbed Godzilla vs King Kong movies with my brother. I ran around shirtless in a community of less than 900 residents until I was at least 10, then I became known for speeding along on my bicycle to go cut grass or shelve bolts at the neighborhood hardware store. I swam in the streets when they flooded during hurricanes. I was and am still weird – not cut from the same fiber. But that’s rural America for you. And I loved it.
In elementary school I played basketball and began running in road races with my mother. In middle school I played volleyball, softball, and soccer too, along with band.
In high school I ran track and cross country, played soccer, and briefly, basketball. I played alto saxophone and was drum major in band. I acted in school plays. I was awarded MVP and Most Athletic and other athletic and academic honors. I became one of the primary care-givers for my grandmother; I fed her, dressed her, cleaned her, talked with her, and moved her from her recliner into bed most nights.
Throughout my early education, I was also heavily involved in church activities and church youth events. During summers I held part-time jobs in local businesses on top of freelance gigs: cutting grass, babysitting, washing windows, and tackling hurricane clean-ups.
College was just as busy. I played on the soccer team and became a co-captain my senior year. I worked half-time in two campus jobs and remained active in church. I dated a couple people. I studied abroad in South Africa and bungee-jumped from the highest commercial bungee in the world. Each semester included a full course load. I participated actively in multiple clubs, often leading fundraising campaigns for them. On Earth Day I wore dresses crafted from paper I found in the recycling bin. I was awarded a Community Achievement Award and other academic and involvement honors.
I graduated Magna Cum Laude, and the day after graduation (Mother’s Day 2009) began my first professional career as a job coach – I helped people with disabilities obtain gainful employment, then acted as a liaison between them and their coworkers and employers. I dated more people. I began a community garden in my apartment community. I led a youth group at church. When I got burnt out after two years from my first professional job, I became a professional mover and called it my Sabbatical From Thinking while I lifted heavy furniture and became the most muscular I have ever been.
For 60 seconds I will be famous. On the runway, the catwalk – whatever surface my heels will be wobbling on as I make my legs appear longer than they are and my heart less frantic than it will be. Few in the crowd of celebrities, photographers, stylists, and designers will know my name, but for 60 long seconds I will be the one everyone is looking at. It doesn’t matter to them who I am, and that’s ok. I’m there to sell clothes.
But I’ll be selling something else, too. I’ll be selling dreams and awareness for those living with incurable chronic diseases.
For the five hours before I take the first bold step on that plank runway I will be backstage interacting with dozens of people – models, makeup artists, hairstylists, designers, stylists, photographers, and producers. Many of these people will see me as another model who wants to make it big in fashion. I’ll be another face to paint, another head to sculpt, another frame to drape and dress. I don’t blame them. That’s why most models walk in big fashion shows – to make it big. But I’m not in this to be America’s Next Top Model.
I’m in this to share my story. I’m in this to bring fashion and sickness together in a powerful way that changes people’s perceptions and awareness of invisible illnesses.