I am NOT a disabled person: words matter

I went back to read a comment I had written on a blog, to see if there was a response, and I got horrified at my own words.

As a shorthand, I had written:

“‘Well’ people don’t SEE disabled people, and they don’t see them as mattering. They don’t see old people. Because every well person is scared to death of ending up disabled.”

I MEANT to say ‘PEOPLE with a disability.’ NOT ‘disabled people.’

Shorthand can be neutral: ‘red-headed person.’

Shorthand can be positive: ‘beautiful people’ or ‘smart people’ or ‘intelligent people’ all convey positive attributes.

But shorthand can be pejorative: ‘ugly person’ or ‘stupid person.’ Or ‘disabled person.’ As if ‘disabled’ were somehow a permanent and unchanging negative attribute of ‘person.’

I am a ‘person with a disability.’ The disability governs my life in many ways: it limits what and how often I can do things, and for how long. It means I have to make special arrangements to go on trips, even for a few hours.

But it does NOT define me.

Somehow, I have never thought of myself as a ‘disabled person’ – not for very long, anyway. But even I forget – because shorthand is an easy, convenient stereotype. ‘Disabled person’ immediately says a whole bunch of things, some of them useful, such as don’t expect me to be able to do everything I look like I can do.

And yet, in the eyes of the world, I AM a ‘disabled person.’ I can’t work. I need accommodations for simple things. I need naps every couple of hours. If you need me coherent, it’s best if you prearrange – so I can take an extra nap.

I helps in some ways that my disabilities – CFS, and the inability to walk properly for very many steps – are, for many practical purposes, invisible. Other people with disabilities don’t have even the possibility of blending in.

It hurts in the same measure that I have ‘invisible disabilities’: other people often don’t see why I’m moving slowly, for example – and honk as if my going slowly across the street at the crosswalk were a choice to annoy them. Late one night in Princeton this spring, after the Easter vigil, FOUR cars sped by me while I was halfway across the street IN the crosswalk.

I had left my walker in my car for the short distance, but I was quite scared – and this was Princeton, where cops are very strict with laws, and pedestrians in a crosswalk have official right of way. My guess – that they had been drinking. I was wearing white pants! No excuses. I instinctively held back from finishing my crossing – there was something in the way those cars moved that scared me; I CAN’T speed up if I need to get out of the way.

So I will be more careful now in my own writing. I will give up the shorthand, and people with disabilities will be people first.

Even those of us who live with this daily have to have our consciousnesses raised sometimes.

My apologies to us.

Please leave your thoughts.


4 thoughts on “I am NOT a disabled person: words matter

  1. Circe

    There are so many ways of living with a disability. And you do so with, from what I read, determination and grace. I have only seen you without a walker. We hide our disabilities all too well. As you well know “beautiful,” “intelligent” are much harder to live up to than “average” or “normal.” The strangest things–it seems to others–are disabilities. There is no explanation but the pressure of continuing to live up to what is deemed a positive label, yet a label nonetheless, for the extremely high numbers of suicides among “talented” young people. No small wonder we are torn between the inseparable worlds of flesh & spirit. Not longing to be disembodied, I make a better door than a window. My ego is bruised i. the days I play tennis poorly. I do things that hurt because they are part of who I am. Only a grinding-to-halt disability, of which I have had a few, stops me. I try to balance my needs
    and abilities. It is difficult. Better go sing “Moonshadow” to myself. How free would I be…? That’s an illusion, too. Here we are: embodied people, all on different paths, each carrying burdens.
    None of which is to trivialize yours. “You wear it well.” Too well?
    My noise-blocking headphones have shipped!


    1. ABE Post author

      Balance IS hard.

      I can pass for ‘well’ for a short while – but when I do that, do I give a mistaken impression of who I am?

      I just try not to let illness get more than it takes by force.

      Our support group has an in joke: ‘But you look so well!’ Because only there, where we know how ironic it is, does it not feel like an insult from someone clueless. There it means ‘I love you and I’m glad you found the energy to make it this month.’

      Do what you can – hope that’s enough. And don’t make it harder on yourself than it already is. Contrary to Old Testament ideas, we didn’t do something bad to choose what happens to us. God gives us the grace to live with what comes along.

      I forget who said, ‘Most folks are about as happy as they set out to be.’ But I choose to be as happy as possible. Thank you for saying I wear it well. I try!



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