I know that headline caused some eyebrows to jump towards the ceiling, so please allow me to explain:
Disabled ≠ Incapacitated
I repeat- Being disabled does not necessarily mean that you are physically incapacitated.
This is something I wish more people understood, and the taboo imposed on those of us with debilitating invisible conditions is so great that I honestly had to think long and hard about whether or not I was brave enough to write this article. I mulled over the idea, worrying about the potential backlash of ableism and judgement that might follow. When I realized just how afraid I was to write this, that’s when I knew I had to.
last Thursday, I got a phone call that informed me that my life was about to change forever, in a very positive way.
My lawyer’s secretary asked when I would be free to come in to the office for a meeting. Nervously, I scheduled it for the earliest possible date, then I asked what the meeting was for. She told me that we had won my disability case, and that it had been fully favorable. I immediately burst into tears, completely unable to keep my composure as I thanked her profusely before ending the call so that I could wail hysterically in private.
I never could have anticipated that I was going to have such a strong reaction. I sat there shaking, crying, and hyperventilating while my two cats sat beside me with looks of kitty concern. I think the last time I cried that hard, it was when my first cat had died back in 2013 (for some context- I REALLY love my cats). These were not mournful tears, however. Quite the opposite. I had been fighting for this moment for two years.
Two years of filling out the same complicated and purposefully tedious paperwork over and over again every time I was denied. Two years of those heart-wrenching denial letters that insisted that I was not substantially held back by my debilitating health conditions, making me feel like a complete fraud and causing me to second-guess myself over and over again even though I knew the truth. Two years of blatant judgement and actual harassment by people who did not see the struggles I face daily because I don’t always share them openly. Two years of waiting for my phone to ring or a letter to arrive in the mail, hoping beyond hope that I would get the very call that I finally received on Thursday.
I know that compared to a lot of other cases, two years is just a drop in the bucket. There are people who have had to fight for many more than that. I had been warned that it was likely going to be a long and arduous road ahead. I am grateful that it turned out not to be as long a wait as I was anticipating, and I deeply sympathize with those who are still fighting for their own cases.
Ever since I had to quit my job because my body simply could not handle it, I struggled with the fear and uncertainty that comes with knowing that if I somehow wound up on my own, I would be unable to provide for myself. I spent many sleepless nights worrying about scenarios that I hoped would never come to pass… Loss. Homelessness. Hunger. Being a financial and emotional strain on those who care about me… The fear of losing everything haunted me like a looming sword of Damocles.
The sudden realization that that burden had been lifted was such a relief that I simply could not contain the tears and wailing. While fantasizing about this day, I had imagined that my reaction would be one of joy and cheer, shouting “WOOHOO!” in the street and hugging random strangers. Instead, I sat in my bed and cried, and cried, and cried. The relief was so immense, it shook me to my very core.
After I regained my composure, I took to social media to announce my victory and called my loved ones to let them know the fight was over. My voice still cracked over the phone when I tried to speak, so I only made a couple calls before I decided texting was probably better.
Oddly enough, after my immediate reaction, I became quite numb. Maybe I was in shock by the sudden news, or maybe I just cried so much that it discombobulated the emotional center of my brain. Either way, I just sat there feeling totally blank for a few hours while I processed my new reality.
As I sat there, I considered the plans I had made for that evening. Later that night, Some friends and I had arranged to go bowling together. I considered the fact that I had just announced to everyone on my Facebook account that I had won my disability hearing, and I realized how odd it would seem if someone saw me out walking around, having a good time, and tossing 10lb balls at a distant group of pins. I noticed that I was feeling a sense of guilt about that, which I acknowledged was absolutely wrong, but not even disabled people are immune to society’s imposed misconceptions about what a disability is. I felt guilty because I myself have been exposed to the (incorrect, mind you) preconceived notion that if I can not work, I should not be able to do anything physical, ever.
Of course, I know first-hand that this is wrong. It’s way more complicated than that. Disability is not a cut-and-dry label that means you can’t physically do anything, even though that’s what the majority of people tend to think. Even I grew up believing that falsehood, and remnants of that mindset still eat at me- hence the guilt I was feeling when I thought about myself going out and having fun playing a sport, of all things I could be doing immediately following that news.
Again: Disabled ≠ Incapacitated
It helps to understand how the Social Security Administration defines “disability”. This it what it says on their website:
To meet our definition of disability, you must not be able to engage in any substantial gainful activity (SGA) because of a medically-determinable physical or mental impairment(s):
- That is expected to result in death, or
- That has lasted or is expected to last for a continuous period of at least 12 months.
Substantial Gainful Activity (SGA) is work that is sufficient enough to reasonably make enough money to meet a monthly earnings minimum. In 2019, SGA is determined to be work that can earn $1,220 or more a month from working, or $2,040 for people who are blind (source: nolo.com).
It’s pretty clear that the SSA accepts that disabled people can still engage in “normal” activities, so long as there is reasonable proof that those activities do not equate to full or even part-time work. Going bowling last week was my first time out of the house on a social venture in more than two weeks. Going bowling for an hour does not equate to attaining SGA. So, since I know that, I decided to look that sense of guilt right in the face and tell it to “shove off”. I’m not about to let potential ableist judgement keep me from escaping isolation for a night and having a good time, even though I knew my body would be paying for it later (and it did, by the way, though it was totally worth it).
So, my friends picked me up, I hopped in the car, we got pizza, and went bowling, and I would like to add that I kicked ass- thank you very much! I broke 100 points in my first game!
By the end of round two, I was drained and ready to go home, but the good thing about being close to thirty is your peers are also eager to get home earlier than they used to, so there was no need for me to push myself any harder than was necessary (I had to take a stress dose in the middle of round 2, but again- totally worth it).
When I got home that night, I sank into the couch and basked in the satisfaction of ending a day of excellent news with a rewarding game of bowling surrounded by supportive people who know and understand what I go through. I smiled, reminding myself that since I know the reality of my situation, understand my limits, and have friends and family that are aware of them as well, petty judgement by ill-informed people holds no weight in comparison.
Despite my recently strengthened confidence backed by the validation granted to me by an honorable judge who carefully considered my case (even with a harsher than usual vocational expert), I still feel the need to stand up and speak for the truth, and hopefully help educate some of the ill-informed public so we can all get past those incorrect and harmful social stigmas.
While I know I don’t owe anyone an explanation, I believe it helps to be open and help share the reality of things when I can. Education is the key to affecting change in an obliviously ableist society.
I hope this has helped put some things into perspective for someone who has never had to experience the world from this angle.
One more time for the people in the back:
Disabled ≠ Incapacitated