Why the 'Dehumanizing' Process of Applying for Disability Benefits Won't Stop Me
Applying for disability has been a demeaning, humiliating, invasive process for me.
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 three months to a year. “It’s possible” in the world of bureaucracy is nothing to lean on. Many 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.
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 the past. 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 others will believe me, too.
The piles of paperwork litter my kitchen table as I struggle to answer questions about my (in)ability to interact with people, go outside, take care of my health and accomplish chores.
I feel I am exaggerating when I say I cannot clean my home, even though as I write the answer I can see the piles of dirty dishes in my sink, smell the trash and feel the gritty bits of dirt and detritus gathering on my floor.
I feel I am exaggerating when I say I used to cook but can’t anymore, simply because I still want to cook. As I write the answer I look at the recycling bin full of receptacles for microwave meals. I open my fridge and see the empty drawers that were once overflowing with fresh vegetables to cook. I finally gave up on buying them; weeks would pass as they shriveled and I ate microwave-heated, sodium-rich soy gravy nuggets.
I still dream of from-scratch meals and crave the crunch of a perfectly cooked stem of fresh broccoli, yet I archive these thoughts as I tell the Social Security Administration I can no longer do these things.
Saying I can’t work is easy. I understand now that I can’t. It’s the other parts of the disability process I struggle with. Home life. My personal activities. Big Brother has his magnifying glass held aloft to observe every move I make – to see if, as a beautiful, healthy-appearing 29-year-old, I really do have trouble lowering myself to the toilet many mornings. To see if my friends really help wash my dishes. To see if I can ride my bike a mile across town and use the evidence to claim I have no physical problems. To see me interact for two minutes with a stranger without having a panic attack and use it to claim I have no mental trauma. To watch me sleep, to see if I have insomnia and nightmares. Come on over, Big Brother, the sheets won’t be clean.
I know I am disabled and cannot work, but I haven’t given up hope for the other parts of my life. I haven’t forgotten what it’s like to cry while cutting onions. I haven’t forgotten the warmth of the dishwater as I scrub away a meal that I made from scratch. I haven’t forgotten coming home to pleasant smells and a clean floor. I haven’t forgotten the joy of spending an evening out with friends, or a day trip to the ocean. I haven’t forgotten the freedom and power of running several miles. I haven’t forgotten, and that is what keeps me from accepting the losses I never imagined were possible.
I remember how whole I felt before, and now I am left with broken pieces – pieces I hold onto so dearly, like broken pottery.
I have learned, by looking at myself through the eyes of the Social Security Administration, that I am nothing more than my disease – yet I am simultaneously defined by everything I have lost.
Time and time again, I am painfully reminded that having a life outside my disability is simply unacceptable – if I am disabled, it must be my only identity. Every moment I must be available to stand naked in front of Big Brother’s magnifying glass for an invasive, full-body review before the conveyor belt jolts me to the next box to check on a government form.
If I need disability benefits, I had better be able to prove I am worthy of occupying the lowest rung of the ladder in a bureaucratic nation which, by the way, means I work harder than the rest just to keep from falling.
But I won’t give up. While this process is taking everything I have, I will not give up. Because people with disabilities don’t give up. We don’t have the option.
Follow this journey on Being Charis.
The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to email@example.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.