I’ve heard some say disability benefits are unnecessary hand-outs for people who should just die off, and why should hard-working people foot the bill for people who are lazy, whose lives mean nothing?
The disability process itself mirrors these same sentiments – the 3-5 years (average) process for applying, fighting for, and receiving disability (SSI or SSDI) in the USA is by its nature a grueling process, with analysts hired to deny applicants not once, but twice (standard procedure), forcing the applicant to appeal their case twice over several months before a hearing is granted, which then takes years to schedule due to a shortage of judges. It is a process intended to force people to give up.
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:
Applying for disability is a demeaning, humiliating, invasive process.
I’ve heard it could take as little as three months to be awarded federal disability benefits, but I would probably have to be literally dying. I’ve heard it’s possible it could take six months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Most people trudge through two to five years of endless forms, initial decisions, appeals, reconsiderations, and hearings before becoming card-carrying members of the unofficial federal disability club – if they’re successful. In kind terms, the Social Security Administration (SSA) drags its feet more for those who are younger, more educated, and healthier-looking. The SSA is less likely to award disability to those who have worked recently or, ironically, to those who have worked fewer years. Additionally, the lesser known or more abstract the disability as well as the more physical (as opposed to mental), the less willing the SSA is to acknowledge a disability. These are facts I have been told by staff at my attorney’s office, and all but one of them apply to my case.
As if I hadn’t already made the most difficult decision of my life to accept my inability to work, applying for disability takes it one step further, forcing me to accept every single other thing I can no longer do, even those I am not ready to accept. I still have dreams of being healthy, so please don’t take what’s left away from me too.
My reality has been muted by the towering, sound-proof piles of paperwork that sprout legs and chase me while I toss and turn at night. I have to prove to the Social Security Administration that I am unable to work, but also that I can no longer function independently. I have to prove I no longer have a life despite all I have done to maintain a semblance of living. I feel I am on the middle school debate team and I’ve been assigned the side I don’t agree with; in order to win I have to admit that I am incapable of the freedoms I embraced in yesteryears. I have to do more than just admit them – I have to fully believe my inabilities enough to prove them true to strangers. I have to believe I’m less than I ever imagined I would be so that others will believe me too.
Just fill out the forms, submit them, and wait for the phone to ring, right?
Some of you probably know late last year I began the journey to join the throngs of people who subsist off Social Security Disability (SSDI) or Supplemental Security Income (SSI). Truly, I tell you, it was such an easy thing to recognize and claim I could no longer work.
Why have I spent the last two years using every ounce of energy I have to try to earn a living? Because the last thing I wanted to do was admit that I was too sick to function like the normal, healthy human being I knew I would always be. Because I was raised to work hard, and remember, there are people out there who have it worse than I do. But I learned those things when the biggest challenge in my life was convincing my soccer coach to let me play the whole match without subbing out. I was the super-involved kid in high school: on the soccer team, track team, in band and drama, and a straight-A student who graduated 10th or 11th in my class. I could do anything and everything and that’s the way the world worked for everyone else too, if they would just approach life with all the vigor and energy I had rattling in my pockets.
That was then. It’s different now. A diagnosis of ankylosing spondylitis flipped me over and shook the spare change out of my pockets. Where I used to sleep through North Carolina hurricanes that hurled tree branches and rain pellets onto the roof of my house, I now rarely find REM sleep even in the most relaxed spaces. Fatigue affects my mental and physical functions, sometimes causing me to lose the word I was about to say in the middle of a sentence. My depth perception is off, causing me to hit my head on clothes racks and slam into door frames with my hip. I now focus on the basic needs to function and survive, which involves a much different skill-set than my original dream of saving the world as a professional soccer player and community garden coordinator. Others my age are focused on getting a promotion at work, losing weight, starting a family, buying a house, and finding a good group of friends to grow old with. Continue reading Accessing Welfare Is Easy→
Most of the time, when people ask for help, they really need it.
And many of us are scared to ask because we’re afraid we’ll be attacked for it. A good friend recently put a crowdfunding page together in an effort to help me resist homelessness and survive the winter while I seek Social Security Disability Insurance (SSDI). Today, another friend shared the YouCaring link (edit 2/10/16: link no longer live) on her facebook page in support of me.
What happened next shocked me. Someone commented on my friend’s post about the youcaring campaign to help me. And it wasn’t supportive. It was along the lines of, “When I am hurting I still get up and go to work. Your friend should find a job, she can work.” I engaged in conversation with this person over several hours and took screenshots of the whole interaction, knowing the person might later delete her comments (which she did). My effort was to see her side of the story – and in the end it came out that she had lost a child years ago and she was projecting her grief onto me in the form of hatred and judgment. It was very sad, and all I could do was continue repeating myself that I would be happy to talk with her in person so she could learn more about ankylosing spondylitis.
Those of you who have been reading my blog, and those of you who know me personally know I’m good at sharing important, gruesome, sad, exciting, powerful pieces of my life so others’ lives may be impacted positively. You have seen that I use my voice to make a difference. You’ve witnessed as I have raised thousands of dollars for the Arthritis Foundation, as I’ve shared my story openly on my blog and in local and national news stories about healthcare. Those of you who know me best know that I love hosting potlucks – what you may not know is that I love hosting potlucks so much because I love bringing people together who would not otherwise meet. I love creating community, introducing strangers, being a nucleus to a gathering.