If you are like me, the word disabled has always meant physically unable to participate. If a person can't walk, then she is disabled from walking. If another person can't see, then he is disabled from seeing. Like so many things I never imagined would happen to me, it seemed so simple...
Suddenly, my little black-and-white definition doesn't work. I am struggling with my application for Social Security Disability Insurance - this is early benefits for someone who is, other than age, eligible to receive Social Security. (As opposed to SSI, which is benefits for a person who has not contributed enough at this point to qualify for Social Security.)
Here's my dilemma: There are very few things I simply always cannot do; however, virtually everything related to working is something that I sometimes can't do, and can't predict when or where that will happen. For instance, today I can write a check or take notes; tomorrow I may wake to find I can't hold a pen properly, much less write my name ... and I can't predict whether that inability will last a day or a week.
Sometimes I can't get out of bed at a certain time; sometimes I can't shower and dry myself off; hell, sometimes I can't wipe myself. Today I can type for 20 minutes before my hands stiffen; tomorrow, I may only be able to type 5 minutes. Sometimes I can sit for 20 minutes before pain forces me to stand up & move around; other times I'm good for an hour. Sometimes I am so fatigued that I literally can't sit up at all.
I'm sure it comes as no surprise to you that there is no room for gray in disability report forms. Either you can or you can't; either you have a "disability" or you don't. And from what I've read, you had better be able to perform on command if you are going to a disability examination.
Here are some questions I'd love to see on a disability report form:
Would you prefer to work rather than apply for Social Security Disability? "YES!"
How long have you been contributing to Social Security? "45 years"
Are you happy to be answering all these personal, dehumanizing questions? "uh, no"
Is it grueling and painful for you to fill out pages & pages of forms? "Yup"
Do you enjoy having a healthy bureaucrat act like you are a deadbeat by asking pointed questions in a disbelieving manner? "do I really need to answer that?"
If there was a job out there where you could come in late if you had a terrible morning; take a nap as needed; take pain meds that muddle your cognitive powers; wear slippers because shoes won't fit; leave 3 times a week for doctors' appointments; not do your work if you're having a bad day; leave early if you have a medication reaction ... would you take it? "Sure. Would you hire me?"
So apparently what I am supposed to do until RA causes enough damage that I am visibly "disabled", is to lie to an employer and claim I can show up on time, work the hours assigned, and do my job well. Not sometimes - all the time, which I believe is still the standard expectation in the real world.
And if I refuse to lie to an employer and I don't fit into the SSA's little perfect definition of "disabled" . . . then what? Not suprisingly, I haven't found anyone who can answer that question.
So, here's what I'd like to do: I'll just take all the money that Social Security has gotten from my paychecks for the past 45 years. Oh, and I'll take those Medicare taxes, too. No, no you don't have to pay me interest on my money that you've held for 45 years because you were sure I couldn't manage it properly. That's right, I'll just take the principal, and you can deduct any funds I've received over those 45 years for Rent Assistance, Medicaid, WIC, Food Stamps and other government handouts -that would be ZERO. Yes, you heard me - I. JUST. WANT. MY. MONEY. And you can keep your applications and waiting rooms and smug clerks and sluggish, depressing, belittling, demeaning disability process. And I'll suppress the urge to tell you where to put them.
Wish me luck ... I'm going in.