Sunday, December 11, 2005

Just Because You're Paranoid, Doesn't Mean They Aren't Out to Get You

In the crip community, you have your occasional apologist, who will defend the non-disabled entity (individual or bureaucracy) who has failed mightily in their legal and moral obligation to make something accessible. This "can't-we-all-just-get-along" crip will say, "they don't know what they don't know". They will say, "it isn't a conspiracy, it is an oversight".

Sometimes, I am this apologist I describe above. Most frequently, I don this persona in the process of encouraging another crip to move forward with a task, after having been slapped down rather brutally in some way. I have found that "they didn't mean to [whatever]" is much more encouraging than, "well, yes, they hate you because you're disabled -- just like some people hate black people or gay people, simply because they exist -- but don't be discouraged."

The flip side of this benign role is The Angry Crip, embodied by an ex-coworker of mine nicknamed Angry Man. Angry Man became disabled in his teens, and was in his late 20s when we worked together. He is a quad and used a manual chair at the time. He would glower and practically spit on people who held the door open for him. He literally punched a hole in the wall one time (good upper body strength).

(In my experience, it is men in manual chairs who are most likely to be insulted by the door being held open for them. No crip female that I know is angered by this. It is irritating when the door holder then stands in such a way that you can't go in/come out, but that's coping with incompetence, not hostility. To me, whether I'm holding the door for someone else, or having it held for me, it is an instance of courtesy -- dare I say it, consideration -- not an implication of inferiority or lack of inherent worthiness on my part. I think this whole door-holding issue is a mutated and unhelpful remnant of the woman's movement of the '60s and '70s.)

Which Leads Me To...

The workshop and book I got at the Abilities Expo a couple of weeks ago, Persistence is Power!, by Jeanne Lazo and Carol J. Amato. The premise of the book, based in part on the real-life experiences of Jeanne Lazo, is that it is extremely difficult to navigate the system of Social Security, Workers' Comp and private disability insurance and that they (those entities) are out to keep you from collecting your benefits, regardless of how deserving you might be. Among other things, "persistence" refers to the fact that most applications for benefits are denied, as a matter of course, often for the first 2 or 3 rounds. This is a tactic which counts on the fact that a certain percentage of people will be daunted and demoralized and give up, regardless of the validity of their particular situation.

I believe this premise is absolutely correct, and if I have any issues about either the book or it's title, it would be that they are not strong enough in getting across just how great the desire is, societally, to prevent people from getting that which they have been led to believe they are entitled, by virtue of becoming too disabled to work.

Jeanne tells her own story -- which was the impetus for writing the book -- of how she struggled, literally for years, to get her own benefits when she very unexpectedly became disabled in the middle of a successful career. In person, Jeanne is articulate, perceptive and kind. She has been through hell and has managed to remain a nice person who isn't crazy.

Big and Easy to Read

The book is laid out in a large, workbook-sized paperback format. The beginning chapters cover some of the realities of becoming disabled -- sort of the threshold issues one faces before tackling the insurance and benefit aspects of disability.

The book then goes on to describe the courses of action one must take in an effort to receive the benefits designated for their category of disability (meaning, permanently disabled -- never worked, newly and permanently disabled -- after having worked, etc.). It has checklists, tips and resources.

Painstakingly Researched

Jeanne Lazo said she researched this book for four years, and always points out, in appropriate places, that a particular rule/regulation was in place at the time of publication, but that the reader should make sure that this hasn't changed in the meantime.

The book has useful lists, checklists and action items for the reader to take, if they are currently in the process of trying to secure their benefits.

Action Item for Everyone

One thing that Jeanne mentioned, both at the workshop and in the book is that it took her over a year to obtain a copy of the disability insurance policy that she had through her employer. When I heard this, I was immediately reminded of how hard it is to find the clauses pertaining to "durable medical equipment" (DME) in the health insurance policies I've had through my employer.

Considering the reams of information that is available, especially during "Open Enrollment", if you work for a large employer that offers more than one type of health plan, it cannot be an accident that the comparison charts mention nothing about DME, co-pays, etc. My morally ambivalent Wheelchairs and Wing Nuts guy knows more about expenditure limits, frequency of purchases of new equipment, etc., than I do for my health plan, and that isn't because I haven't tried to find out.

You may be feeling perfectly fine (for you, that is), but make it a quest to get a copy of your disability insurance policy. One of the big pitfalls of some policies that actually plays into many people's guilt at needing to stop working is this: under many policies, your benefit is based on your most recent salary. If you try working 1/2 time or less, and your salary is reduced accordingly, then your benefit may be based on a salary far lower than it was before you became disabled.

By trying to be a "good citizen" and attempting to work part-time, you may be screwing yourself out of hard-earned benefits.

My Message

I tell the crips with whom I work that "you don't get extra points for suffering". While this might sound like a glib little homily, it is actually something I realized a few years ago. American society is still deep in the thrall of the idea that suffering and making-do and "sucking it up" is morally superior to a reasoned inventory of one's abilities and disabilities, pain, stamina, etc.

Not only do we prefer to see people performing at the absolute outer limits of their tolerance, but when they finally say, "I give", we then make it incredibly hard for them to ease up. So much so that the natural inclination of the newly disabled/more disabled person is to be apologetic and tentative about asking for accommodations that are entirely appropriate to their situation. DON'T DO THIS!

Approach any request for service or benefits in as businesslike a manner as you can muster. Present your documentation, your situation and your request in a straight-forward way. Be polite, but matter-of-fact. Study up (if needed) on what they can and can't ask you about your disability, your functionality, etc.

How to Get This Book

Persistence is Power! is available from Stargazer Publishing Company,, ISBN: 0-9713756-0-7. It is a great resource book for professionals, as well as individuals trying to get through the benefits maze.

In the back, there is a blurb for a new book, supposed to come out in 2006, called Jumpstart Your New Life! A Real-World Guide to Help You Return to Work After a Disability. Based on persistence is Power, I imagine that the new book will also be carefully researched and full of useful tips. Having outlined books on disability myself, it is no surprise to me that the authors discovered that there were at least one other book's worth of material that needed presenting.

1 comment:

Rebecca said...

Excellent points and it sounds like a great and useful book. Especially like your points about not getting extra credit for enduring pain and screwing yourself out of more money by trying to be a good sport.

It's very easy for me to find out what my disability insurance allows for me: nada, nichts, zip, zero, zilch. I got nothing. No major medical. No minor medical. No dental, no vision, no LTD, no LTC. Welcome to life after outsourcing and layoffs.