The Invisible Disability

Moderatrix Note: Originally posted at random babble… on 15 September 2009.  At the time the movie was just out over the previous summer.

Because of the new movie that is out I am currently re-reading Jodi Piccoult’s My Sister’s Keeper.  I read it about five years ago, but I read that the screenwriter for the movie changed the ending (why do we do these things, Hollywood?  The movie ending sounds awful, but more on that after I see it), so I thought I would brush up so that my memory is fresh when I see the movie.

There is one character in the book, Campbell Alexander, who is a lawyer who agrees to take Anna’s (the central protagonist) case for medical emancipation from her parents, pro bono.  Alexander has a service dog that assists him.  The need for the dog becomes something of a running joke throughout the book, because everyone assumes that if he has a service dog he must be blind, which he is not.  He cracks a series of jokes, including “I have an iron lung, and the dog keeps away from magnets” to avoid directly answering any questions.  It isn’t until the end of the book that you find out why he actually needs the dog (but re-reading this I find that there are many fairly blatant clues to the acute reader), and no I will not tell you, just in case it happens to be omitted from the movie. I am a jerk like that.  =)  While Campbell Alexander’s situation provides a good many of moments to laugh in a book that is incredibly tear jerking, his situation is all too familiar.

See, the reason Alexander feels the need to crack jokes and be sarcastic is because his need for the dog, named Judge (…ha ha!  I C wut U did there!) is constantly questioned.  Every time he walks into a restaurant, a hospital, a public building and despite the fact that Judge is described as wearing a service dog’s harness he is told that dogs are not allowed.  When he mentions that Judge is a service dog the common response is “But you aren’t blind!”.  Campbell Alexander’s reason for needing a service dog isn’t obvious to the casual person on the street, but his need, his disability, is just as real in the world created in the book.  But were he a real live person living in the world today his disability would be met w/ the same types of skepticism.

Even though it is becoming more common to be diagnosed with what were previously thought to not be real conditions the idea of an Invisible Disability is still foreign to most people.  People living with conditions such as Fibromyalgia, Rheumatoid Arthritis, Sarcoidosis, any number of non-neurotypical disorders, or Lupus, just to name a few, go through chunks of their lives never showing visible signs of the often constant and frequently overwhelming pain that sometimes limits their lives.  I know that when I am on the subway in Seoul I am given odd looks if I use a seat that is left open for PWDs, even though my joints and legs hurt so much that standing brings tears to my eyes, because no one can see my pain or know my need.

It is easy to assume looking at a person that they are completely able-bodied.  TAB has become the norm to society at large, and in order to be anything outside of the default you have to display physical signs of your difference.  That is what our society today demands.  A wheelchair.  A handicapped parking plate.  A cane or seeing-eye dog.  The lack of these markers can mean the difference between accessibility with independence, and limitation.  My need for accessibility isn’t obvious unless I point it out, but it is real.  It’s the reason I have to ask if the single’s lodging on a base has elevators or insist on staying in the main building which does.  It’s the reason that some people get angry when limited access forces them off of their scooter, in great pain, while standers by watch and assume that the person is faking in the first place.

The presumption that a disability must come with a big obvious sign so that other people can identify them is part of the problem to making the world outside our homes accessible to everyone.  It isn’t the job of PWDs to make their conditions obvious to you or to explain themselves to the AB-TAB crowd, but it should be the responsibility of the public and society to make sure that PWDs can access the rest of the world, which is a step, for many, to independent living.

8 Comments

  1. I think I’ll just print this out and hand it to everyone I see from now on.

  2. I read the book in late 2005, when I was clueless about invisible disabilities. Until it became obvious why Campbelll Alexander had the service dog, I assumed it was a joke and he just felt entitled somehow. I knew that service dogs exist for other reasons than blindness, but I think the fact that he refused to give a real explanation, made me assume there was none.
    .-= Astrid´s last blog ..Socialist Party May No Longer Keep Its Members’ Salaries =-.

  3. The presumption that a disability must come with a big obvious sign so that other people can identify them is part of the problem to making the world outside our homes accessible to everyone.

    And then, as you point out, many people feel entitled to judge if you’ve got the “right” disability for that sign, like the service dog.

    This is a great post.
    .-= Sweet Machine´s last blog ..Fluffcation: Holiday =-.

  4. Exactly. Even people I know who do use the “proper” markers such as scooters, wheelchairs, canes (even myself occasionally) are met w/ skeptics. As if society as a whole are watching them for that great “gotcha” moment, so they can “prove” that they aren’t really that disabled, and just big ol’ fakers trying to milk us all for something. Because, let’s be honest. Even visible disability is met with disrespect and a demand from the able-bodied centric world we navigate.

  5. Erm, umm…and thank you. *blushes* I get flattered so easily.

  6. Ah, this reminds me of my life so much. My service dog in training is for mental illness and sensory issues, so of course I must be faking it.
    .-= thetroubleis´s last blog ..What It Is To Be A Monster =-.

  7. A friend of mine on LJ recetntly posted about her attempt to get a service dog for her disabled husband. Apparently in the UK, the disabled person has to be able to care for the animal totally on their own – they have to be able to feed it, walk it, bathe it, brush it etc etc all on their own without any assistance from anyone else be that anyone else family member or otherwise. Without quoting her post directly (which I’m not going to do) I can’t convey the absurdity of the situation but basically it means that her husband is unable to get a service dog because the very reasons he needs one, are the things that prevent him from being able to care for it totally on his own. The whole situation seems beyond belief but unfortunately it is very very real.
    .-= Bri´s last blog ..Guest Post – Some Partially Formed Thoughts On Size & Disability =-.

  8. Bri, that’s just horrifying! Those requirements exclude the very people who need service dogs the most! How can they not see that? Allow family members or people they live with to help!

    *sigh*