Little Boxes

There was a Disability Blog Carnival about this a few months ago, but the idea had been cooking in my head for a good while before that.  It’s about the boxes that people with disabilities get put into, or put ourselves into, or put each other into.  These boxes are fallacies, because once you are in a box, you can’t simultaneously be in another box, or three other boxes, or to use the cliché, outside the box entirely.  And it pains me to say it, but I know that I am not immune to some of these fallacies.  What can I say?  One of my autistic delights as a young teen was to sit outside in an upside-down dishwasher box with a book and my thoughts and the illusion the whole world had been reduced to the comfortable boundaries of four cardboard walls, with just a small hole in the roof for ventilation.

Some of the boxes are set up as dichotomies.  The one that frustrates me the most on a daily basis are the two assumptions.  Either a person with a disability can do Everything or he or she can do Nothing.  And in fact, most other boxes seem to be derived on some level from either the Everything Box or the Nothing Box so I’m going to start with those.

The Everything Box

Here’s how the Everything Box works.  You say, “well I’m not going into neurology because I can’t do a good neurological exam on adults”.  They say “oh you’ll get it.”  You say “well I’ve tried a lot of techniques and worked out some of the problems, enough to get by with teens once in awhile, but it does boil down to not having enough strength and that just isn’t solvable.”  They say “oh I’m sure you can do it.”  You bang your head against the wall.   

The Everything Box is the bane of those with invisible disabilities because in the immortal words of Christine the Spoon Lady, we don’t LOOK sick.  How to explain that despite being verbal and mobile, we may not have adequate vision, hearing, stamina, blood sugar or dexterity to drive a car, hear overhead announcements at the airport, climb three flights of stairs,  leave our food outside the testing room or fill out 10 forms in 5 minutes.  And even more fun, how to explain these things while in a crisis situation of one or more of them.

The Everything box has high walls reinforced with duct tape, also, when we try to explain to our schools or employers or the transit authority that we need accommodation.  Because all the other students and employees can do it.  Because we “manage” so well with our disability otherwise.  Because it’s a requirement in some rulebook somewhere.  Because if they made an exception for us they’d have to make one for everyone.  Because even a person presenting with a cane, walker or wheelchair can’t possibly need an accessible entrance, because of course everyone can do everything. 

You’d think it’s great people assume those without disabilities are capable people  And it is good to be assumed to be able to do things we are able to do.  But once we state our disability or inability, the Everything assumption is not liberated and liberating.  Rather it is confining.  Because the very fact of having a disability means one cannot do Everything, under Every circumstance, Every time as well as Everyone Else.   Sometimes we need an alternative technique, an accessible route, an accommodation.  If the expectation is Everything and one cannot live up to everything, well then the only alternative is an expenses not paid trip next door to Nothing.

The Nothing Box

Nothing is the one people know about, which is why I started with Everything.  We’re all familiar with the Nothing stereotype.  People with disabilities can’t do anything.  Can’t, can’t, can’t.

The way this one plays out is, “Oh you can’t do a rotation there, because of your disability.”  “You shouldn’t go into pediatrics if you can’t carry babies in the delivery room.”  “You can’t major in this because” “go to that location because” “hold a job because.”   I’ve coded these as “you” statements but they could as easily be “I” statements. 

                People with visible disabilities get this one all the time.  Wheelchair equals complete and total physical and mental inability.   “What would he like to eat?” the companion of a wheelchair user is asked at the restaurant.  Sometimes after “he” has just ordered for himself.   People see my cane and start to help me with things - like pulling my suitcase out of my hands as I swing it up onto the train luggage rack.  Ironically, this help puts me in more danger of losing my balance than just hoisting the bag myself. 

                People with invisible disabilities get this as soon as they disclose, though, too.  I tell people I have difficulty with handwriting and they start offering to write things for me.  Like their phone number as I have a pen in my hand and am already writing it down.  I tell people I have diabetes and they make all sorts of assumptions of what I can eat, usually Nothing.  (Either that or they assume I can eat Everything.  Always boxes) 

                Nothing is the one we have had as a model far too long.   It’s the Nothing box we’ve been put into instead of regular education classes when all we needed was access to school and class.  And the Nothing box where we’ve been asked to live at home being cared for instead of working and perhaps even caring for others.  The Nothing box that keeps airlines from letting some of us fly alone.  And the Nothing box that makes it OK for our relatives to euthanize us and have it called charity instead of murder.  The Nothing box is a black hole to nowhere.

Tiny Tim and the Supercrip

These are a couple of the common disability stereotypes out there.  Although like I said they seem to be variations on the Everything theme and the Nothing theme.

Tiny Tim is a Nothing version.  In the Tiny Tim model, people with disabilities are objects of pity and need our charity.  Jerry Lewis and the Telethon love this model.   They show poor helpless children with disabilities sitting sadly on the sidelines watching others play.  This is what generates the cash, after all.  Never mind the MDA actually gives  the money to things to help kids with MD have fun, like new wheelchairs or van lifts or camperships.  That model doesn’t sell as well apparently.

The evening news loves this model also.  They show cute kids with disabilities and nice charitable people or celebrities or Easter Bunnies giving the kids a good time.  Aww.

The Supercrip is a reverse where a person with a disability is highlighted for doing all sorts of amazing things.  Things which would be amazing even if a non-disabled person did them, some of them.  Things like climbing Mt Everest or skydiving.  Or things like holding a job like doctor or lawyer.    Or in some cases being a mother.  Right now there’s a supercrip making the news because his prosthetic legs are considered BETTER than regular legs so they won’t let him run in the regular Olympics. 

The evening news is a fan of this model as well. 

The Supercrip can do Everything.  Why we don’t even think of him as disabled.  Isn’t that the highest of complements?  And then he can inspire us because if he can do it, so can we the non-disabled.  Only the news doesn’t use the term “non-disabled”.  They say “normal” or “healthy”  Phrases  like “dreams” or “disabled in body but oh so whole in spirit” are used.  You know, maybe the Supercrip Everything fallacy isn’t so far from the Tiny Tim Nothing one after all.

Disability and ‘on disability’

So this one gets into the very way disability is defined.  And in fact, the way it is defined by the government.  And on some levels, this is the one where I  slip up the most, leaning too far towards the Everything Box in my frustration for the way the Nothing Box plays out here.

The definition of disability I tend to use is that of the Americans with Disabilities Act (ADA) which defines disability in terms of accessibility and civil rights needs.  Specifically a person with a disability (PWD is an acronym I like a lot) has a substantial impairment in one or more major life activities.  Some major life activities they suggest are walking, talking, using hands, seeing, breathing and working.  The ADA also covers people who don’t have such an impairment but are treated as though they are.

There’s a couple of sections in the ADA.  One is about accessibility and accommodation requirements so that PWD can come out into the world and participate in the same arenas as everyone else.  Parking lots need accessible spaces.  Hotels need accessible rooms and visual smoke detectors and Braille signage.   Concerts and sporting events need accessible seating.  It’s not quite an Everything definition, of course, but does imply needing access to More Places so can do More things.

Then there’s the section that keeps me employed.  There’s some powerful language in here.  It’s not Everything language but it’s a lot closer to that than to Nothing language.  Basically it says that a workplace can’t discriminate in hiring against an “otherwise qualified” PWD who can perform the “essential job functions” “with or without reasonable accommodation.”  These are some powerful statements, although of course it’s always up for debates who is “otherwise” qualified, which job functions are “essential” and what accommodations are “reasonable.”   Overall, though, it’s designed to get and keep a lot more of us working, because a lot of us can work, if we are not experiencing discrimination and receive reasonable accommodations.   And working is a good alternative to the Nothing alternative.

The Nothing definition of disability is the one used by a lot of lay people, a lot of people in health care, and the part of the government that doles out disability benefits.   Only they don’t call it the Nothing definition of disability of course.  Often they just call it “Disability”  Or qualifying “for disability.”  Or “being on disability.”  Now if it were up to me, I’d call what the ADA calls disability “disability” and call what the SSI/SSDI people call disability, “disabled in such a way and to such an extent as to be unable to work.”

Now this is where the confession part comes in.  Where I explain how I buy into a disability stereotype.  Even though I try not to buy in, this one I have some problems with.  And yes I understand that there are people who are disabled in such a way and to such an extent that they are unable to work.  I know such people, as friends, as patients, as people I have met in the disability community online.  And I believe SSI/SSDI should exist to help people in this circumstance.  In fact I believe SSI/SSDI should do MORE for people who are truly disabled in such a way and to such an extent that they are unable to work.   Especially those who might actually in fact be “disabled in such a way and to such an extent that they are unable to work sufficient hours to have a job with benefits like health insurance but in fact are able to work part time in certain jobs with sufficient accommodations.”   

No my problem is to use the one simple term “disabled” in place of such an explanation.  Because it starts to descend so quickly into the Nothing model.  Because then people start thinking of “disabled” as a synonym for “unable to work.”  And without invalidating those people who are unable to work, disability doesn’t mean that and it’s just going to make things harder for those of us who can and do work.  

To wit, the diabetes educator who told me I was “inspirational” because I work with my diabetes and disabilities.  Because she has Type 1s who are “on disability” and don’t work.  She didn’t mention anything about them having serious complications or other reasons for disability besides Type 1.  And while Type 1 does meet the ADA definition of disability (at least as originally written) nothing in just the Type 1 diagnosis should render a person completely unable to hold any sort of full time work.  Considering that all the Type 1s in my life are either employed full time or are full time students. 

To wit, the people who tried to offer me disability insurance when I started my residency.  Now admittedly there is a possibility I could become disabled to in such a way and to such an extent that I could no longer do the work of a pediatric resident.  I could develop an inability to stay awake all night.  I could develop cognitive impairment and not be able to remember names of medications safely and reliably.  I could develop severe hearing AND visual impairment.  I could lose the use of my hands completely.   I’m not saying these things can’t happen, and perhaps I am playing with fire by not having disability insurance.

But the whole point of the sales pitch was not about becoming disabled in such a way and to such an extent that one can’t complete a residency.  It was about “if you develop a disability” and can’t work.  And I’m sorry but, well, I already HAVE a disability and I AM working.  (I told you this was the one with which I have the most trouble)   I wonder if I applied for Disability Insurance based on my current level of ability and my current job I’d qualify.  I sure hope not!

Then there’s the people in the disability community I meet who tell me they are considered 100% disabled.  I’ve met patients like this too, people who walk into the ED with chronic back pain and when I ask if they work, explain they are disabled.  100%.  Yet there are people with quadriplegia who require attendant care at home to get out of bed and dress, and who then are able to work.  So I assume would not qualify as 100% disabled.  How does the government determine percentage of disability anyway?  It can’t be as simple as number of damaged limbs.  12.5% off for each arm?  40% for an eye?  Number of possible hours a week someone could work? 

Like I said, I think disability insurance, SSI and SSDI should exist.  I think people who are disabled in such a way and to such an extent that they are unable to work should be covered.  And even more, I think people who are able to work part time but can’t get insurance benefits should be covered for health care while still working to the extent possible. 

But I do wish there was some way to convince the insurance people, the government people, the medical profession and the general public that “disabled” does not mean “disabled in such a way and to such an extent as to be unable to work enough to support oneself or get health insurance.”  This is a SUBSET of disability that needs 23 more words .  And to use “disabled” for both uses is to slam an awful lot of us into the Nothing Box who simply don’t belong there. 

Not that there should be a Nothing Box in the first place.  Or an Everything Box.  Because disabilities and people with them really live somewhere in between any box you could name.  We can’t do Everything.  We can do more than Nothing.  We are People With Disabilities taken all together but more than that, we are individuals.  And so rather than get stuffed into a box, I think I’ll dump out the soap and climb atop.  And suggest to the world that they treat each of us with individual weaknesses, individual abilities and that the single word “Disability” only goes so far in describing any one of us.   So instead of using the label as an ending, stamped onto a box after sealing, how about we start using it as a beginning, tear off the duct tape and talk about what’s actually inside?