Tuesday, November 1, 2011

How Do You Spell d.i.s.a.b.i.l.i.t.y?

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.


deb aka abcsofra said...

My heart goes out to you. I remember that process like it was yesterday....it was not. Don't let it get to your head or your heart. Your post says it all and it says it honestly and truthfully. The main thing is to have your doctor(s) on your side. And it the eyes of SS, you have to be only unable to perform any type of work for more then one year. And oh...they will be doing followup letters after you get approved to recheck what they already know...that you are disabled. It IS your money, this is YOUR life and please don't let anyone make you feel differently.

The Rheuminator (Jackie) said...

Thanks Deb. I often feel like you're my personal RA angel. You are always there just when I need you...

Wren said...

I haven't applied for SSDI, yet. Why? Because of everything you just wrote. I'm perfectly well one day and a mess the next. I never know how I'll feel tomorrow, or what joint RA will attack and whether it will be a disabling attack or just a painful, annoying one. Frankly, I'm afraid to apply.

I'm a boomer too. Unemployed and unable to find a new job. I've only worked for 35 years, but those were long years nonetheless, during which I paid into SS, Medicare, etc. I guess one of these days I'll gin up the courage to try for disability.

I wish you the best of luck with the process, and I hope you'll be able to get the help sooner rather than later. RA is stressful enough, isn't it.

Linda P. said...

Wearing my slippers, I'm attempting to get out of bed for the third time today, at 1:21 pm in the afternoon. I've had a fabulous previous three days in which I could stay up most of every day, participate in some work-related online discussions and even pedal the exercycle for ten minutes at a time (with no tension on the flywheel). Today, the RA exhaustion clouds my thinking along with slowing my movements. I'm stumbling because my brain thinks my stiff joints have heeded the message given them to move but, in fact, they haven't. The disjunct has me staggering into walls and making wild waving motions which at least entertain me and my husband. The examiner might not believe you, but I do!

MakeThisLookAwesome said...

I was collecting unemployment insurance when I had to go to one of those little work-seminar things. There, I was told that if I wasn't available from the hours of 9-6 or if I wasn't able to work those hours, I couldn't put that down as "Able and available to work." My response was. "I've never been able to do that. I've always had employers willing to work around it."

He sent me to voc rehab. Voc rehab asked me what I could do at my worst. I said, "sit in a dark room with an ice pack on my head." The lady looked at me and said, "yeah, we can't retrain you to do any job under those circumstances. You need to go talk to Social Security for disability."

It was a good thing too, because I soon became crippled with my pain for years.

If you want, give a percentage. Figure out how many days per month you're able to do things and average it. That should be fair.

kimberly said...

wishing you well, and missing your posts, you were the first one I found and you gave me hope on the darker days-

The Rheuminator (Jackie) said...

Thanks, all ... I am baaaack! Sorry for neglecting you, and thank you for your support & comments.