My whole life I have been passing able bodied. Thanks to the God and Goddess I don't have all the deficits that others born with Spina Bifida have. Oh, I am plenty different enough but not enough so that you would notice. That has always been to my advantage, as I was able to do things that everyone else did without anyone giving me a second glance. My disability was firmly locked in a closet.
I thought my eyes had been opened when I lost my right leg to necrotizing faccitis (NF) and while I waited for a prosthetic I spent nine months in a wheelchair. This world is not made for anyone in a wheelchair. Oh plenty of people talk the ADA speak but when you come right down to it barriers in this world remain. As soon as I got my prosthetic, I got out of that chair and was back to being me. Most people, including physical therapists, do not notice that my right leg from the knee down is titanium! Back to being passing able bodied, that disability closet door was opened just a titch. I went back to work, and worked my butt off. I was able to still see patients but preferred doing QA. (I know really sick, huh?)
Now, I find myself in a place I never thought I would be. If you don't have hand rails on your house, forget it I can't get in without my cane. Most patients really are not sympathetic when they are sick, so they are uncomfortable with an obviously disabled nurse. I was an administrator for a home care agency. I got the damn place it's license. Everything was as good as it could be with a meglomaniacal, overbearing boss. Basically, home care agencies if they are privately owned, are owned by nut cases. I unfortunately was dealing with a germaphobe nut job. When my Spina Bifida symptoms began to rear their ugly head, I found out what discrimination was really all about. I had some clue from my previous employer but since that is still in litigation I won't go there. My skin broke down and I had a venous stasis ulcer on my remaining leg. I ended up hospitalized and what did Mr. Wonderful Boss do? He said he wouldn't pay me my owed PTO unless I worked from the hospital. He then reneged on my telecommuting. Things went down hill from there. He interfered with doctor appointments and my care. I even saw an ad for my job. I kept doing my best. The man even said I was the hardest working person he ever saw. It was for nothing. I got sick at work and the idiot fired me after embarrassing me. Calling 911 for stomach sickness is a bit extreme. Discussing my bowel problems in front of my underlings was worse than being sick and not making it in time. I probably should have sued him....but at the time I was in no place mentally to do so. I guess I am out of the closet and pardon the pun, but shit out of luck when it comes to a job.
It's been a year now. My wound on my leg is healing slowly. I go on job interviews only to realize that I don't fit the corporate image of what is an administrator or QA nurse. I look disabled. I walk with a cane. Some days the wounds exhaust me, other days its better. So, here I am fully out of the closet, walking down the hall and out of the door....and I am choosing to go back on disability. I identify myself as a nurse. It's so damn hard for me to do this. I have been on enough interviews that have made it clear to me that in a position higher then Walmart greeter, the ADA doesn't means squat. One company, who takes federal money has an office, that is not accessible. That was the reason for not hiring me. Another company wouldn't give me a reasonable accommodation regarding the drug test...gee, I guess I could fake the test in an accessible bathroom rather than nearly falling on my ass trying to cath myself into a cup in a non-accessible one. One idiot actually told me that it would be different if I was in a wc. Oh excuse me, they said wc bound. No one I know of is welded to their damn chair! If the healthcare community is so openly prejudiced against a disabled one of their own, its no wonder no changes have been made elsewhere. Doctor's offices, hospitals are not always accessible. Come to think of it, in the area hospital I spent most of last year in, I did not see one disabled employee.
I surrender! I am damn good at what I do. I know I am a better nurse then some because of the care I have received in the past year. I know the federal, state, and accrediting body regs inside and out. Besides, I care about my patients. But, I am giving that all up. If you cannot see who I am beyond my disability then I don't want to work with you anyway. No, I am not bitter but rather exhausted. I am tired of proving myself to people who aren't worth it. I have spent my life trying to prove that I am as good as an able bodied person. To Hell with that philosophy!
No one really knows how those of us with SB will age. I am fortunate enough to be in a generation who is the first to grow up with SB. It's become clear to me that driving myself so hard is costing me my health. Retiring from active nursing now will probably add years to my life. It is doing wonders for my mental health, and my family life. I do have a plan, I am going to work on something. And I am going to make sure that in my little part of the world, the ADA is adhered to. For me one door opened wide, but others closed shut. Fuck it! I found a window into my future.
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