At a Loss for Words

I have a disability.  I want help when I need help; I don’t want pity.

How does pity sound?  “Poor Jeff,” for starters.  Being talked to like I’m a three year-old or a sick puppy.  People handing me things I didn’t ask for or need, doing things for me I didn’t ask for or want, those sorts of things.

“It must be hard for you,” is pity disguised as sympathy couched in condescension.  “I understand,” bridges the gap, but leaves me wondering, “Do you, really?”  “My brother is legally blind,” aims at commonality but minimizes.  “Life’s a bitch,” is inane and insulting.

I appreciate honesty.   “What’s that white stick for?” seems indelicate, but is clear and direct.  “What’s it like being blind?” offends some, but works for me.  I need information from the sighted; they need information from me.

I reserve the right to define myself.  Rather than, “I suffer from RP,” I say, “I have RP.”  Our semantic evolution has replaced pejorative words like “handicapped” with nebulous but suggestive words like “issues.”  Are we thus more sensitive?  I prefer accuracy.  I can handle the word “blind.”  We focus on how to label instead of how to relate.

I am not bitter.  I search for ways to connect with people.  Many approach me in terms of my disability which, I readily acknowledge, is a distinctive feature. But blindness is only one among my many roles: writer, husband, social worker, brother, son, uncle. While blindness contributes to my singular identity, I am not unique in facing challenges.  No one gets through life unscathed.  My disability makes me a part of, rather than apart from, the human experience.

So, even as I promote clear and direct as a path to connect you to me, how come words fail me when it’s my turn to say, “Please, will you help me?”

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8 Responses to At a Loss for Words

  1. bethfinke says:

    A lot to chew on here. I particularly like your point about disability making us a part of, rather than apart from, the human experience.

  2. stpetric says:

    Help me understand what’s pejorative about the word “handicapped”. You say you prefer accuracy, and it seems to me hard to understand significant visual impairment as anything other than a handicap. Not one’s defining characteristic; not the end of the world; not reducing one to helplessness; but pretty clearly something that complicates all kinds of life domains from relationships to employment. (Although at a very early stage of the condition, I write as another person diagnosed with RP.)

  3. guidepooch says:

    I agree – I cannot stand the words “suffer from” and “handicapped”, the latter which seems to be quite common in the US but has been mostly banished in Canada. I had someone at a bus stop pat my arm once and say “I’m sorry you are blind and may god bless you”, which made me want to simultaneously throw up and kick her. But someone else in a line at Starbucks said “I have compassion for you” and I was sort of ok with that. Words matter.

  4. Jeff Flodin says:

    Thank you all for your comments. Beth, I remain a White Sox fan. I recall what Jean Shepherd said: “If I were in a foxhole, I’d want six White sox fans with me, for they have faced death every day of their lives and for them, it holds no fear.
    I think my take on the word “handicapped” lies more with it being archaic. Not to say that “disabled” implies anything less limiting. If handicapped harkens back to the dark ages of social indifference (the pre-ADA days, for example), it suffers more from guilt by that association than by being pejorative, if pejorative means disparaging and derogatory. Any ideas for a new word that describes without suggesting limitation?

    • William (Colt) says:

      Jeff, how about “fighter” — it will sound too agressive to some but it isn’t limiting in any way. And any of us with limited or no vision certainly are just that — fighters. Every freaking day on some level.

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