I’m Just Not Impressed

Am I supposed to be?

The Invisible Human

with one comment

Today is Blogging Against Disablism Day. Read all about it and see more posts here.

Imagine if you will a person. This person takes four different very expensive pills which are not covered by zir health insurance every night. Zie has taken something, ranging from the current four supplements to a variety of toxic psychoactive prescription drugs, every day for more than five years. Some of these medications have caused zir to spiral into horrible depression. Some have caused weight loss. Others, weight gain. Zie is likely going to be adding two more drugs to zir current regimen soon, because the four pills zie already takes – which are some of the last possibilities to permit zir to function normally – no longer effectively block the pain zie would otherwise have to live with almost every day.

Is this person disabled?

Does it matter if zie can hold a job?
Does the type of job matter?
Does it matter if zie would be unable to hold the job zie is trained for without the aid of daily medication?
Does it matter if zie can walk/hear/see/function mentally at a high level?
Does it matter that you would never know that this person was in pain if zie didn’t tell you?
Does it matter that this person has experienced pain daily for the past two weeks?
Does it matter if zie is married? Has children?
Does it matter if this person would need pain meds virtually every day, absent zir nightly cocktail of pills?
Does it matter whether the pain meds are prescription or OTC?
Does it matter whether the pain meds effect mental functioning in some way?
Does it matter whether zie can be unable to speak or find appropriate words when the pain is severe?
Does it matter whether other people have worse conditions?
Does it matter whether this person thinks zie is disabled?
Does it matter if this person is a he or a she?

Does it matter if this person is me?

I am at a loss, I confess.
Seriously. I have no idea whether I should consider myself disabled. I do know fellow migraineurs who have fought hard for legal acknowledgement as disabled when their stasis migraines have made it physically impossible for them to function normally. Clearly, I am not at that point. My knee-jerk reaction is to say, no, of course I’m not disabled. All of my problems, from my severe nearsightedness to my almost daily migraines can be reasonably controlled by modern medicine.

When we talk about invisible disabilities, do we even see ourselves?

I’ve discussed one type of invisibility in my most recent posts here – the invisibility and infantilism of people with disabilities in discussions of sexuality, focused through the lens of past experience as the partner of a person with a visible physical disability. Because of that narrow focus, I was thinking primarily of issues faced by people with visible mobility limiting disabilities. Ignoring, as I did so, not just the experience of people with other visible and invisible disabilities, but really, my own.

It has only been recently that I’ve come to even consider myself as living with long term chronic pain, because for the most part, that pain is managed, and it is not nearly as persistent and severe as many people I know. I fear that I’m somehow infringing on their right to acknowledgement of their pain – pain which regularly, severely limits their mobility, their ability to function, their very existence and interaction with the world.

It makes my migraines seem inconsequential.
But I’m not really sure that matters.
And really, what a privilege it is to be able to choose. To decide whether I want to identify myself as disabled. To get to decide for myself how I want to present my identity to the world.

But that doesn’t change how every “it’s just a headache” or “have you taken an aspirin” or “you should try x medication that worked so well for me/my mother-in-law/this random person on House” chips away at my feelings of control, self worth, very being. Because it’s not just a headache. Sobbing in frustration for not being able to the most basic sunny weekend activities with my sun is not “just” a headache. Cancelling or reworking plans because I can’t get out of bed without falling over is not “just” a headache. Losing my temper with my loved ones because they are too loud/bright/alive for me to handle is not “just” a headache. This is how I and many many others live.

Just because you cannot see us, doesn’t mean we are not there.

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Written by emandink

May 1, 2009 at 3:43 pm

One Response

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  1. I think that even those of us who are knowledgeable about certain subjects, or who advocate for equality have a hard time seeing how those terms apply to us. For a long while I fought using the word ‘disabled’ when talking about myself. It was because I was buying society’s interpretation of what ‘disabled’ means, because I was seeing it as the worst possible thing that could happen to me. But it isn’t.

    I’m not saying that you are disabled, or that you have to claim the label as your own, I’m just relating my own experience, and that is that trying to ignore or downplay that element of my identity was certainly doing me more harm than good. And while I still grieve that I have these illnesses and limitations, I also know now that I still can be me, even with my disability.

    NTE

    May 6, 2009 at 2:58 pm


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