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"Your disability/injury doesn't define you."

I hear this a lot, read it a lot, and I've thought about it a lot, as a disabled person.  And I've come to the conclusion that this is wishful thinking.

As much as I would like it that my hearing disability didn't define me, it does.

I used to play musical instruments - in particular the woodwinds and dulcimer.  I can still, to a very limited extent, play a dulcimer, but I can't tune it and I can't hear when it's out of tune. I once defined myself as a musician. Because of my disability, I can no longer make that a part of my definition.

I used to enjoy music and had amassed a wide ranging collection of music, from the classics to cybergrind. I can't hear most of this now, so I am no longer a music collector and lover. My disability shaped that part of me out of my life.

Ditto for movies - I can't hear a lot of the movie music, the things they say because they don't continually face the screen and I haven't found a single theater that does closed captioning on first run movies.  I have to wait for them to come out on DVD/Bluray/whatever home viewing medium gets developed so I can run the closed captioning option (which isn't always present and when it is present isn't always accurate).  My disability shaped cutting edge pop culture right out of me.

On line games are also difficult because so many rely on audio cues for various actions.

I can read about these things, and even engage in decent conversation about them, but I no longer have primary experience and that does, indeed, define me in ways I didn't want to be defined.

There are also many things I do now that I never would have considered doing before I was hearing impaired (mine was not a gradual hearing loss, but caused by traumatic injury).  One of the biggest changes, one by which I am definitely defined, is that I am now partnered with a hearing assistance dog.

Like it or not, having Itzl does define me.  I am "that girl with the dog" ("girl" still, even in my 60's).  

More, I have had to become a service dog advocate and spokesperson.  Everywhere we go, we are educating people on what it means to be partnered with a service dog, what our access rights are, and to deal with the negative and positive consequences.  I can't do anything, go anywhere, without having to build in time to deal with others stopping me to try to pet the dog, to talk to the dog, to tell me I can't have a dog there, to delay me in my ordinary, everyday business. I used to be able to shop for groceries in 15 minutes, now, I can count on it taking me 40 minutes or more. That defines me, like it or not.

Because I don't hear well any more, I don't respond to people talking to me if I don't notice they are talking to me.  That now defines me as "snobbish", "stuck up", and "aloof". Itzl has helped mitigate some of that, but since he is snobbish, stuck up and aloof, not a whole lot.  If he doesn't know you or doesn't like you, when you talk to me, he won't necessarily alert on it. He will alert on those he likes, the ones who call themselves his "harem". That defines me, like it or not.

Itzl

I was reading an article the other day about a young man who was paralyzed, and he was claiming his injury didn't define him, but I think it did.  He was, before his accident, going to be working for a magazine.  Now, after his accident, is he working for the magazine and pursuing his pre-accident goals?  No. He's developing skin care products for paralyzed people, and  is an advocate for quadripelegics. He is, like it or not, defined by his accident. His life changed, and he's not doing what he'd originally planned, he's not the man he was, the man he hoped to be. His life now has been shaped and defined by his injury.

I have friends who have, over the years, had various major injuries that caused the loss of legs or hands or that caused paralysis, that have gone blind or deaf, and let me tell you - every one of us has been shaped and re-defined by those injuries.

Maybe we're better people for those, but they do define us. We are not the people we were before the injury, before the disability.

Originally posted to Noddy and Itzl on Wed Nov 14, 2012 at 08:48 AM PST.

Also republished by Pink Clubhouse.

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Comment Preferences

  •  Thoughtful and realistic. As someone with a (15+ / 0-)

    complex and at times challenging past, I also feel that that past, like your disability, provides the boundary conditions of my present self. I take comfort and courage from Oliver Sack's writings, which so often show how difference does not mean someone cannot be whole, only that the shape and form of their wholeness may be different or even unique.



    Is it true? Is it kind? Is it necessary? . . . and respect the dignity of every human being.

    by Wee Mama on Wed Nov 14, 2012 at 09:02:13 AM PST

  •  I'm thinking although there may be definition, (9+ / 0-)

    it may not be necessary to be limited by that definition.  As humans we need to organize and categorize to retain the vast amounts of information we are exposed to.

    My partner will tell me that he had a conversation with Bob today.  I must always say "Which Bob?", before I can recall any other information about Bob.

    I guess what I am saying is that everyone is defined to some extent, I am defined by the fine family that runs the local Chinese restaurant as "26 Oak" which was where I lived when I first started ordering from them.

    I don't look at definition as inherently bad. It is needful to some extent.  What is bad, to me, is the stereotyping we may apply to the person because of the definition.

    Please donate to Okiciyap food pantry. . If love could have saved you, you would have lived forever.

    by weck on Wed Nov 14, 2012 at 09:02:41 AM PST

  •  It really does. (13+ / 0-)

    It defines me to possible employers.

    It defines me to people who see me in stores or on the street, who either try to help too much (take away what independence I have), or ignore when I do need help (walk by when I've fallen).

    It defines me as lazy to my family.

    It's taken away my ability to sing anything but those songs I knew SO well that I know exactly where to place the note on my palate or sinuses.

    I have severe social anxiety, and yet I rely on an adorable and social dog to get around outside the house safely.

    Get 10% off with KATALOGUE2012 at my shop, or go to the Kos Katalogue!

    by LoreleiHI on Wed Nov 14, 2012 at 09:26:42 AM PST

  •  I think people might mean you are not (5+ / 0-)

    "limited" by "your" disability, whatever it may be.

    A disability does define one in giving people information about a condition or some kinds of limitations. But no matter, one is still MORE than the disability, MORE than whatever that definition is.

    At least that's what I like to think. I certainly often feel defined by age. Heh, I don't get referred to as "girl" in my late 60's. Lucky you! But my more or less mild disabilities of some difficulty hearing and limited ability to walk much seem to increasingly define me, unfortunately even in my own head.

    Good diary. Beautiful dog.

    "extreme concentration of income is incompatible with real democracy.... the truth is that the whole nature of our society is at stake." Paul Krugman

    by Gorette on Wed Nov 14, 2012 at 10:24:11 AM PST

    •  See, that's the thing (2+ / 0-)
      Recommended by:
      FloridaSNMOM, carolanne

      we are limited by our disabilities, and often, the disability changes the direction of our lives - the young man who was going to be working for a magazine now designing skin care products for paralyzed people for example.

      This saying annoys me because it tries to gloss over the disability, to act as if we don't have those limits and those sometimes drastic changes in our lives.

      My disability definitely defines me.

      My disability is not me.

      There is a difference between these two statements.

      In the first, my disability limits me in some ways, and it defines what I can do and how I do that, and how others have to sometimes accommodate me (assuming they want to accommodate me, they don't have to). It determines, in some cases, what careers I can pursue (for me, I'll never be a stage manager again - can't hear the microphone feedback), and what careers I will be allowed to pursue without hindrance (I do phone work - possible because of computers and voice to text programs - but I have to fight every day to keep my job and not be forced off onto SS disability).

      In the second, I am saying I am no more my disability than I am my hair color or my shoe size. My personality my interests, my innate character remain basically the same.

      Yes, it's semantics.  It's important to make those distinctions because one acknowledges that certain limits now exist (and it's really Not Good to ignore those limits and pretend I really can hear - that's just stupid) and the other reinforces that I am me, warts, disabilities and all.

      All knowledge is worth having. Check out OctopodiCon to support steampunk learning and fun. Also, on DKos, check out the Itzl Alert Network.

      by Noddy on Wed Nov 14, 2012 at 12:51:03 PM PST

      [ Parent ]

      •  I never said your disability IS you. ?? (3+ / 0-)
        Recommended by:
        FloridaSNMOM, Noddy, carolanne

        I'm merely saying, yes, a disability gives some information to people on you but it's one among many things and should not be accepted or taken or given as a definition or a limitation, and by limitation I mean this:

        Yes, you are limited. I am limited in what I can do.

        But on the other hand I am not limited in my personhood and other abilities to do other things. That is all I meant. Ok?

        So I think we agree on all that. And I can see why anyone with a real disability will take issue with their saying what you said. Good for you for explaining because it isn't easy. Semantics can be a real pain.

        "extreme concentration of income is incompatible with real democracy.... the truth is that the whole nature of our society is at stake." Paul Krugman

        by Gorette on Wed Nov 14, 2012 at 03:20:26 PM PST

        [ Parent ]

  •  Defined by disabilities... (3+ / 0-)
    Recommended by:
    never forget 2000, Wee Mama, Noddy

    Before I had high hopes for our family to be out of poverty by now. Not rich, but in a much better place than we are.

    I was a COTA/L. Now I'm a COTA but I've let my state license lapse because I don't have the money to keep up with CEU's and fees.  This is another barrier to work if I ever get to the point where I can again (or find a way to work around it), because I'll have to find a way to take the CEU's to reinstate my state license.

    I used to walk a lot, I took my kids to the park, or the pool, went bike riding. Now I can't walk to the end of my very short driveway and back without stopping to catch my breath.. on a good day. A day like today I can't walk to the kitchen and back (and I am walking at a snail's pace besides).

    I can't plan outings well, because I never know what kind of day I will be having. A day at the museum? Sure.. maybe, if I can breathe, if I can walk, and if I can keep my eyes open. I try to rest the day ahead, but even that doesn't always ensure it.

    I used to sing. I took lessons, I've been in bands (local mostly practice few gig bands, but still), I've been in church choirs and school choirs from 1-12 grade. I was even accepted to an arts school in 5th grade, my parents couldn't afford the tuition, but I was accepted, and to the opera program. I had a VERY wide range. Now I can sing in tenor, alto or maybe soprano I on a good day. I can't hit the Descant and below baritone any longer.

    My disabilities have greatly affected my self image and self definition. They've also affected how other people see me, since my disabilities are mostly hidden (unless I'm wheezing loudly).

    "Madness! Total and complete madness! This never would've happened if the humans hadn't started fighting one another!" Londo Mollari

    by FloridaSNMOM on Wed Nov 14, 2012 at 10:34:18 AM PST

  •  December 28, 1988 (4+ / 0-)
    Recommended by:
    FloridaSNMOM, Wee Mama, chimene, greblos

    I was a newly wed
              a physician
              a medical manager at a prestigious institution
               about to be a mother for the first time

    In 1 hour
              paralyzed

    In the past 24 years
               still married to the same wonderful man
               still paralyzed
               a mother of a child with autism
               still have my M.D.

    Of course, this is not the course, if given a choice, I may have chosen. What I have learned, through 24 years of disability, that everyone's life is full of vicissitudes. No one goes through this life the way they would chart it for themselves.

    But as my husband told me in the ICU in 1988

    You are still YOU
    Disability may limit how you live your life, but you define the life you live.

    Thankful and blessed!

    "I feel like I'm still waiting to meet my true self. I'm assuming it's gonna be in a dark alley and there's gonna be a fight." ---Rachel Maddow

    by never forget 2000 on Wed Nov 14, 2012 at 10:38:04 AM PST

    •  Yup. That's what I said to my wife (0+ / 0-)

      Fibro isn't as bad as paralysis for most things, but she did lose mental function and for her, a lot of her identity was tied up in that.  

      But she IS still her.  She's just not able to DO a lot of things she used to do.

  •  My wife's life was redefined by her disability (4+ / 0-)

    She was a very skilled sysadmin, helped design and build the first robust back-end to support online photographs (for an early cellphone/camera company and Kodak's print centers, when they were still trying to find a way to survive the exit of the cash-cow film from the world)

    Her career ended because her disability literally ruined her ability to keep complex models in her head, her IQ has been actually measured to drop when trying to do sustained mental effort and stress causes a physiological response that makes her other physical symptoms worse.

    She also used to garden, did most of the shopping/cooking (because she liked shopping more than me, and was a better cook at the time).

    We weren't sure about kids either, but that was taken from us by her illness.

    What she's kept from that life are some of the social activities (some hobbies, online activities and such) but restricted to things she can do when she isn't very reliable (she might have to sleep for a few hours randomly).  She still does all the product research for big purchases (although it takes her longer) and as before, provides ideas for food, social events and trips. She helps a little with the food but it's mostly advice these days, plus salads, and assembling batch-cooked stuff into individual meals.

    What she has gained from her disability is more time for "together" activities with me, including daily walks together, plus we made time to have a series of wonderful dogs in our house.

    She sometimes thinks getting sick saved our marriage (she was a workaholic, but I think we'd have found a balance).   It probably improved our health....we're eating better and I'm exercising more than when we were both working (she's more sedentary but we do try to keep her active within limits).

    Seriously though.  There was the life she had before she got sick, and the life after.  She's the same person inside (which is why it wasn't actually a strain on the marriage, and in some ways helped), but she is physically and mentally less capable than she was, very suddenly.

    So her life has much narrower boundaries.  As a caregiver, mine too, although not nearly as much as her.

  •  I think it would be better stated as: (1+ / 0-)
    Recommended by:
    Wee Mama

    "You are not solely defined by your disability."

    I'm pretty sure that was closer to the saying's real intent.  If not, it's an intent I like better.

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