Getting On, Off Disability
But that’s just what happened in 2005 after nearly five years in nonprofit disability advocacy work. The economy was increasingly less kind to nonprofits and funding was scarce, so my job was cut. After that I struggled to find equally fulfilling work with an extensive background in newspaper writing, communications, nonprofit marketing and information and referral. To continue to stay productive and working, I donned a name tag and uniform at two different movie theaters. My husband and I loved movies, so why not get them for free on our tighter budget as an employee at the theater? And with my background and maturity, I was proudly plunked in the front in box office on busy weekends or at ticket drop directing eager customers to their screening rooms. I considered it a bit of continued advocacy and education interacting with people who might not have interacted directly with someone with a disability in a personal way before.
As it happened, I met a banking executive who decided he too, loved movies enough to work at the theater and was saving up extra money for a summer vacation to Australia. We connected quite a bit and he got to know my background enough that he suggested I submit my resume to his company. I jumped at the opportunity to become a corporate raider on wheels. Notice the acronym C.R.O.W. because I’d be eating it sooner than later because in the back of my mind I felt sure I would conquer Corporate America like anything else in my life.
My theater cohort recommended me for a temp job in his department and I enjoyed it, but soon realized corporate culture and disability culture, at least in that department, didn’t quite dance well together. My first day, I was asked in an obligatory, monotone voice by the manager if I needed any accommodations. I informed her politely and then was then told she was just joking, that I’d have to just make due or go elsewhere because if a whole person could do my work, then surely “half a person could,” referring to my being a paraplegic. I was stunned. After years of being spoiled as a respectable, equal worker at the newspaper, then as one of the majority in nonprofit that hired and counseled people with disabilities, I was back in the usual minority that was not on a level playing field of human respect. My co-workers were nice, but were understandably out for their own skins, so I wasn’t sure, even when talking with my temp agency advisor, what to do. I knew how to properly advocate, but was afraid to rock the boat because I wanted to badly to fit back into the 9-to-5 stream.
A full-time position came up on the internal job board. I took it, thinking there might be a better atmosphere in a different office – and there was, but the work was mind-numbing and I longed for my name on my shirt thanking people for visiting the theater, but kept pushing thinking this was my ticket upward.
It was downhill from there, though, as I had been dealing with a myriad of health issues from chronic pain, increasing workloads, a pressure sore on my foot that had become infected, increased bouts of sleeplessness, erratic waves of depression and long work hours. Productivity was king and I had to learn my job as soon as I touched down. I was warned the training for the job was deplorable by my own management team, but had no idea how bad until a week’s worth of training left me ill-prepared for the 14 hour days, co-workers who were so busy chained to their own workloads they didn’t have time to really stop and answer questions. I quickly became burned out and ill, something you don’t do in your first 90 days. It took my husband begging me to quit to accept defeat in this position because I didn’t want to face being out of work again, but I eventually did and left on my 90th day. I took time to get healthy again, but was never quite the same, not realizing that a ticking time bomb of infection was lurking deep in my foot. This was the beginning of 2008 and it was not getting off to a good start after trying to rally from my lay off in 2005.
By the beginning of 2009, I was well-acquainted with intense wound care visits, suggestions that amputation may be imminent, but determined I wouldn’t lose my limb or my sanity. I spent January to May on bed rest, thought I would lose my mind and went on disability, finally realizing I could not work and we could not afford my lack of income, but was also working on my next professional dream to own my own business, yes from bed rest. I felt worthless and dejected, but kept in the back of my mind that someday this, too, would pass and I would be productive again. Still, the depression I was diagnosed with in my teens played devil’s advocate with my fragile body chemistry.
There’s not much of an arsenal to fight depression when you are on bed rest beyond sheer will and desire. My tank was running dry, but I pushed anyway.
I finally found a wound care doctor who wasn’t willing to just remove my leg from “Hello”, was friendly and personable, and he was prepared to battle with insurance about maxing out all treatment protocols before that ever became an option.
So, I began the journey down the rabbit hole of disability benefits. I thought it would be simple. After all, I’d paid into the system with full-time work and I’d had a disability since birth. I’ll spare you the tedious details, but after leaving Corporate America job in January 2008, I applied for disability had to apply? Um, I’m in a wheelchair, had documented chronic illness and some stranger had to decide if I had a disability or not that warranted a disability check. Really?I felt like I was surrounded by unseeing idiots.
I started a binder—yes, a binder! I must have had a premonition of some kind. Every fax, every letter, every conversation I’d had since I began to feel ill in Corporate America was in that binder. I had a list of all the hospitals and doctors I had ever seen in my life related to my spina bifida and the wound care.
It was a good thing that I was so detail-oriented, because I really needed to keep track of all of what the Social Security Administration required of me, largely due to the ambiguous nature of the illness other than I had a rotten hole in my left foot. Since there not necessarily a single area affected (my depression, other pressure areas developing from bed rest, etc.), they seem to apply a “shotgun” approach, checking everything. Luckily, I wasn’t denied after my first attempt, but it was because of all my documentation and tenacity to keep calling the person on my case that it all fell into place within a year. I understand other people aren’t as lucky, but it was a long, long, near year process and I felt like this stranger in the Social Security office new more about me than my husband or I did off the top of our heads
I can’t be sure if my situation is typical of the process, but, sadly, I’d bet that it is. My advice to anyone preparing to do battle with the system is to be persistent. Expect an initial denial, but know that it doesn’t mean the end. Appeal! It’s the way the game is played. Find an experienced attorney who knows how to go to bat for you if you think your process will be longer than mine. Since they are paid a set fee that comes out of your final settlement (which is retroactive), it pays to have help. Document everything! I can’t tell you how many times I referred to my sacred binder, which I still have.
Since then, I lost the good fight with my foot, had my left leg amputated just above the knee and earned my certification as a professional life coach, building my practice. I’m so much healthier now with no regrets, even though I do miss my leg sometimes. I’ve worked with Vocational Rehabilitation to develop a customized employment plan and learned much about motivational speaking, training, product development, website building and more. I’ve not let any barnacles grow under my butt and I’m well on my way out of the disability benefits system if I continue on the road I’m on now. It’s become my desire to be independently employed as a coach for others with disabilities.
And yes, I dream of wealth, before I’m too old to enjoy it. I’m getting there, a dollar at a time. My lesson is focus on your path and be persistent.
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