April 30, 2006, 3:51 pm

When Every Word is a Struggle – Blogging Against Disabilism

roundish.jpgShe was born ten days late.

Nearly two feet long and almost nine pounds.

In retrospect, I’m sorta glad she was a C-section!

And she was perfect.

Except that she looked like an orangutan, according to her grandmother.

Her soft blond hair stood straight up until she was eleven months old.

Good thing afros were the style back then, because I think she was the only white baby I’ve ever seen with one.

She walked at nine months.

She could point out the individual Bee Gees by name at 18 months (hey, I have my parental priorities!).

Healthy, beautiful (don’t believe what her grandmother said) and the smartest baby in the world. Not that I was partial or anything.

My daughter, Lillian, is now 25 years old.My regular readers will remember her as the child who presented me with my dermoid cyst grandchildren, Barry and Bridget a few months ago.She is tall, blond, model-thin and gorgeous (I’m still not biased, as you can see.) She works in public relations for the city of Portland, Oregon.

She works with the public everyday, talking on the telephone, greeting office visitors, arranging sales, working with her managers.

She even interviewed for a job that would mean coordinating conventions and meetings for the city, providing even more opportunities for working with the public.

And she has stuttered continually since she was two-and-a-half years old.

Stuttering, or dysfluency as it is also known, is rare in females. The ratio of males to females is 4:1. There is no known causation (although theories abound) and there is no cure.

Water.That was the first word.When Lillian would say it, it came out as “wa-wa-water”.

No biggie. It isn’t unusual for toddlers to go through a period of what appears to be stuttering when they first learn to talk. It’s harmless. It’s transient.

For Lillian, it never stopped.

“Oh, she’ll grow out of it”, her pediatrician told me. Visit after visit. Year after year. “She’ll grow out of it.” Grandparents expressed concern. Aunts and uncles expressed concern. “Oh, she’ll grow out of it, that’s what the doctor said!”, I reassured them.

She still stutters.

She has lived with taunts and laughter, like when we were on a cruise and she tried to order a hamburger. The waiters laughed at her and mocked her speech. When she answers the phone, it sometimes takes her 10-15 seconds to say a single word. People would hang up thinking there was no one on the line. She could not say her name without going through facial contortions and repetitive syllables.

Speaking in front of the class was torture. And this was in a supportive, Catholic grammar school and high school with kids who had known her since she was five and where ridicule was not tolerated under any circumstances.

Public school would have eaten her alive.

When evaluated at the age of seven at the Speech and Learning Center of the Children’s Hospital, Oakland, they asked her to draw a picture of herself.

She drew a crying clown. At the age of seven her self image was already taking the brunt of the stuttering backlash.

Oh, we did speech therapy, off and on. Lillian hated it and hard a hard time complying with the exercises. All speech therapy can do is give you tools to use and she felt even the tools made her talk differently.

All she wanted was to be able to talk.

Normally.

She has used the new earpiece device that gives feedback as you speak (actually works with the developer of the device), which helps with fluency. It’s better, but not a cure.

Lillian gave me permission to blog about her experiences with stuttering.

I wish I could have asked her to “guest blog” how debilitating this was and is for her. I’m feel I’m not getting across how the inability to communicate normally can be so devastating to a life and a person’s self esteem.

Like it was when she was seven, externally Lillian seems like she has a charmed life. She graduated from college (with honors), has never had a dearth of boyfriends (who never seemed to mind the stuttering), and ironically, works as intimately with the public as you can!

But she never knows if she loses a job interview, if it was her speech that held her back. If she’ll be fluent or not each time she answers the phone.

Every time she opens her mouth to speak, she doesn’t know.

And it hurts.

Badly.

Lillian has a speech disability.It’s not visible.She doesn’t need special equipment to walk or move. Or a disabled placard.

But it is a disability just the same.

She says no one really understands how disabiling stuttering is, despite her high-profile job.

I understand.

Who knows if she has even experienced discrimination, no one tells you they aren’t hiring you because you stutter. She could have easily taken a job in a back corner and hidden herself from the world and the need to communicate.

Instead, she has tackled life head-on and puts herself out in public every day. Stuggling with what the rest of us take for granted: communication.

Does that make her a hero?

You’re damned right.

People with diabilities do it everyday of their lives.

She is an inspiration.

And I am extremely proud of her.

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16 Comments

  • Annemiek
    Annemiek

    April 30, 2006 at 5:24 pm

    You have a daughter to be proud off. Great how she is facing life head on, instead of hide. My oldest brother stutters too, it was always very hard on him. For him some speech therapy has worked somewhat, he still stutters but less. He too faces life head on, and is in a managers position in engineering.


  • TC
    TC

    April 30, 2006 at 8:22 pm

    Good for her! She’s facing the world head on(and I think I know where she gets it from).


  • difficult patient
    difficult patient

    April 30, 2006 at 9:40 pm

    I’m inspired . . .Thanks for sharing, Kim. And thank you Lillian for being a great example!


  • DisappearingJohn
    DisappearingJohn

    April 30, 2006 at 11:58 pm

    Sounds like you definitely have a reason to be unbiased! (and proud)


  • Robin
    Robin

    May 1, 2006 at 4:39 am

    I’m glad to have heard your daughter’s story. I see the point of this whole day now.

    Thanks Kim.


  • Attila the Mom
    Attila the Mom

    May 1, 2006 at 8:44 am

    What a beautiful post. Thanks so much for sharing your daughter’s story.


  • may
    may

    May 1, 2006 at 10:33 am

    and i am proud of her too…


  • Jodi
    Jodi

    May 1, 2006 at 12:15 pm

    What a remarkable person your daughter is. Make sure you tell her that for me, OK?


  • Kelly
    Kelly

    May 1, 2006 at 3:10 pm

    Wow. Having grown up with a Father who stuttered, I can understand some of what you experienced. Having a child with a disability, who also has a normal appearance… well I can relate to that as well.

    Beautiful post, and your daughter is simply amazing!


  • Gimpy Mumpy
    Gimpy Mumpy

    May 1, 2006 at 5:51 pm

    So glad to have found your blog!

    I am adding you to my Gimpy Blogroll :)

    Happy BADD!


  • missbhavens
    missbhavens

    May 1, 2006 at 6:36 pm

    Stuttering is one of those speech disorders that is wildly difficult to overcome. We can’t even agree on the etiology! My original degree was in Speech Pathology, and we spent some time at a school in NYC where the therapy consisted mainly of gaining control of one’s stuttering by speaking extremely, extremely slowly. Then gradually speeding up. The students would go out to the park with tape recorders and ask folks to be their conversationalists. It worked for some people short term, but they seemed to lapse after awhile–possibly because speaking at at rate that makes asking “what time is it?” a 3- minute endeavor is not much better than stuttering out the same sentance, socially speaking! Good for her. She’s obviously a strong one! Gee…I wonder where she gets that from!?


  • Colin
    Colin

    May 1, 2006 at 6:59 pm

    Once more you prove your mettle as a writer and as a person with important experiences to share.

    I must confess I had forgotten your daughter was in Portland. Send her to Island Joe’s one day! SW 6th and Alder. If I’m there (alas unusual these days), or you prearrange with me, her meal is on me!

    Best regards,
    Colin (aka Island Joe).


  • Rhonda
    Rhonda

    May 1, 2006 at 7:34 pm

    This was beautiful and brought me to tears. I’m so glad I stopped by!

    Thank you for writing it.


  • Kelly
    Kelly

    May 1, 2006 at 8:34 pm

    Just to let you know, I was thinking about this post and your daughter this evening when I was out at a restaurant.

    The waiter stuttered.

    So I smiled.

    And silently cheered him on.

    Thank you for making all of us aware of an “unsilent” disability.


  • Hannah
    Hannah

    May 3, 2006 at 10:47 am

    What a lovely tribute…perhaps one of my favorite Kim posts ever.

    Hh


  • Jo
    Jo

    May 3, 2006 at 2:51 pm

    We had the privilege of meeting Lillian at Christmas when she visited with our son. She is indeed a beautiful young women. The whole family was very impressed with her. We hope she visits again.


About Me

My name is Kim, and I'm a nurse in the San Francisco Bay area. I've been a nurse for 33 years; I graduated in 1978 with my ADN. My experience is predominately Emergency and Critical Care, and I have also worked in Psychiatry and Pediatrics. I made the decision to be a nurse back in 1966 at the age of nine...

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