not invisible

The limitations that my health problems impose on me are disabilities.  I define disability, at its most basic functional form, contextually.  This stands in contrast with notions of “crippled”, “invalid” (stress on the first syllable), and “diseased” as more inherent properties.  This latter set of categories share the property of being relatively static.  They describe a state that, while it may be transitory over time, is enduring while it is experienced regardless of what the experiencer is doing or where or how the experiencer is doing it.  E.g., if you are sick, you are sick whether you’re standing, walking, laying down, playing a game, working…you get the idea.  So while I think these categories are useful definitions of condition, they do not encompass the situations where your condition plus your context results in limitations, changes, non-normative participation in events.   For that, we have the concept of disability.  I’m still working on this as a formal argument, but the basic, inelegant definition I propose is that disability is not being able to do the things you want to do when you want to do and how you want to do them.  It can also be, and frequently is, not being able to do what others want you to do, when they want you to do it, and how they want you to do it.

I believe that this functional definition has implications for what I would argue is a false label of “invisible” disability.  First off, it should be called “imperceivable” and not “invisible” since into the category of “visible” disability would go aphasia, for example, which is not seen (the condition causing it may be, if you’re a doctor doing neuroimaging).  But I’m willing to give a pass on “invisible” as a short hand for “imperceivable” and not really attack that.  It’s not the modality of the phrase or idea with which I take issue.  It’s the idea that disability is “invisible”, ever.  As I believe disability should be properly, practically defined, there is just no way it can be invisible.

  • Condition that limits ability to move. (Cause is often not visible, except in case of amputation or significant atrophy/”deformity”.)   
    • Visible disability example: using a mobility aid.  
    • Invisible disability example:  walking with pain, walking slowly, avoiding lifting or moving things, not participating in events that will require you to move a lot.  
  • Condition that limits ability to visually perceive as “normals” do, either entirely or partially.
    • Visible disability example:  wearing glasses, using a guide dog, a cane.  
    • Invisible disability example:  squinting, positioning yourself to increase what you can see.

You can do this exhaustively.  The point is that what falls into “invisible” is not invisible.  Your co-workers, family, friends, they all do not fail to perceive that you are asking “what’s that?” when your tinnitus or auditory processing deficit means you can’t hear what they’re saying in a slightly noisey environment.  It’s not like the people you work with don’t notice you showing up to work late if you couldn’t get out of the house for the number of bathroom visits you had to make.  Your mother in law most certainly was aware that you were not chipper and helpful last Christmas when you suffered through dinner with a raging migraine.

What is invisible in these things we call invisible disability is not the disability but the actually cause, condition, state.  The disability itself is often quite perceivable, however the cause is misattributed.  The misattribution is not a property of “the afflicted”, it’s a property of the perceiver.  If you want to test that, just go ahead and disclose and watch how people still fail to apply the knowledge of cause to the observable consequences.  They will decide instead that you are just not being a team player, that you’re lazy, that you’re weak, that you’re not trying hard enough, that you’re not committed, that you don’t care, that you are angry, that you are unhappy, that you don’t like them, that you’re stuck up….oh I could fill a page with what explanations people give to observed disabilities.  Listing them doesn’t answer why.  It only helps to show that there is a rigid and compelling tendency to assign an antisocial cause to inadequacy, insufficiency, non-normal, behavior…compelling because they do it despite knowing exactly what is the reason.  Rigid because you can tell them over and over and they will claim to get it but then fail to apply it.  How can the knowledge exist and not be applied?  That’s largely rhetorical but if you want to take a stab at answering it, please do.  The best I can come up with has to do with a basic level of entitlement which is threatened when it is confronted by someone who is asking for, taking, or making allowances.  It makes me feel very misanthropic.

The take away message for me is that calling disabilities like these “invisible” is letting other people off the hook for their own inability to be sensitive, empathetic, and accommodating of people who are struggling to do the best they can with the far less than ideal set of tools life’s stuck them with.

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  1. I agree. I think invisible disabilities/illnesses entered our vernacular to raise awareness and understanding, but it really didn’t. I tend to avoid using disabled in general due to these people who don’t get it. On medical forms, I’ll write that I have a debilitating, chronic illness if needed.

    Per the Merriam-Webster dictionary, disabled is defined as: incapacitated by illness or injury; also : physically or mentally impaired in a way that substantially limits activity especially in relation to employment or education

    Why is it so unacceptable for us to use that? Sure fits me. I can’t do much of anything like normal people. My low vision from keratoconus is more invisible than my EDS in my opinion and trust me that squinting does nothing and glasses don’t provide correction. People have no idea that I can’t see well and the VA of a keratoconic doesn’t describe how we really see. Someone who I’m stuck with for rides got pissed at me the other day because I couldn’t see an airplane he was talking about. Really? I saw a flying object in the sky, but I don’t know what the hell it was. He seems to think I’m imagining my vision loss, despite the fact I spent close to 5 figures on surgery to halt the progression of this damn thing and all the sagas at the eye doc I post on. WTF?

    I think I’ve just given up and it’s made me a total recluse and asocial. I don’t know how to talk about it and no one seems to get it, but keep posting because maybe we’ll all come up with some stock answer! Good onya (had to put that, sorry)!

    • And whether you use “chronic debilitating illness”, “disabled” or some other term, it seems to be the concept of “and this means I can’t do X” that people have a problem with. The seeing the airplane thing is a great example. You’re getting a ride from this person….because you can’t drive….because of your vision loss….wtf.

      • There you go! Sometimes I get lost in the details (or is it the big picture?). I need a ride tomorrow and my ride is all pissy about it so I think it’s a resentment thing, so let’s just be rude and accuse me of being able to secretly see perfectly! Well, now we go back to the lack of supportive people issue and on and on. I think the quality of life for someone with disabilities can vary so much depending on their surroundings in general.

  2. All so very difficult and challenging – the invisible. This week, my daughter decided she wanted to return to school – it’s a good thing as it means her anxiety level is somewhat under control. She’s part of a learning center accessible through heavy doors at the back of the high school. Of course I met with the teachers last Friday to prepare them for my daughter’s limitations. They told me they had no clue of her physical state as she appears physically fine (kind of sad isn’t it that all that pain is so excruciating yet so invisible). They were still glued to the “anxiety” issue and kept asking questions (forgetting within minutes that she can barely walk or stand) such as “Can she go to recess with the others?” to which I replied “sure, if you have a wheelchair she can”, and then “Can she take the bus if you can’t pick her up?” – “Nope, she can’t walk to the bus, nor stand in line waiting” I replied. And while they were discussing how she would be fine (not anxious) because the doors to the center were so “secluded” from the rest of the school I was was worrying about how heavy they were and who we could get to open them for her. Regardless of everything I said, no one thought of the doors…

    • Holy….sheep! I suppose anxiety is something they can understand. Or think they can. they have workshops and inservices about it. Mobility, vitality, consciousness stealing diseases, not so much. 😦 Poor kiddo. I hope one of them grows a clue. That’s a real shame that the people who are teaching in the learning center have such a hard time with physical limitations, and with understanding how they anxiety triggers.

      • I plan to write a letter of what I discussed with them during the meeting just to make sure it’s written somewhere – with of course copy to the Principal and our family physician. That way, perhaps someone will catch on regarding the limitations of her physical and mental state. I have to admit she seems to be doing better – although she’s still in a great deal of pain, her energy seems a little higher and he seems to be able to control her anxiety on her own by adjusting her medication when she feels the need – thanks to a great psychiatrist!

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