I hate having to repeat myself…

December 29, 2007 at 3:34 PM (Uncategorized) (, , , )

but for Katie Jones  

and perhaps more importantly for her parents…here goes.

I’m 46 years old.  I have cerebral palsy [admittedly a different and less affecting form than Katie Jones has  ] plus four other impairments…some of those other physical problems are moving into high gear.  ….but even if my timeclock is moving fast toward something crappy….it doesn’t mean  that any of my time, past and future is not worth life and involving myself in it.

My parents were told I would die as a baby.

They made the trip in Ohio blizzards from their college campus to visit me as I waited out the first two months of my life in an incubator

and grew some more.

My parents were told by a completely wrongheaded doctor that I would be profoundly cognitively impaired.

Um, Sorry to invalidate that degree on your Ego Wall Doc…but no.

I performed in plays

I sang

I finished elementary school,junior high,high school, college and one and a half masters degrees

And I made some lousy choices in my life.

some of the things I deal with now are truly self-inflicted

and some are not, they are directly related to my impairment.

But would I want to have missed it because  someone responsible for my welfare was told that my cp was terminal, tragic, life threatening, by medical persons?

Medics are often necessary to consult.

They lay valuable groundwork…

and then, you and your parent’s job Katie, is to use what’s helpful and figure the rest out on your own.

My parents loved me…

But they had serious demons to wrestle with that were *their own* before I was ever created.

Because of those demons, they were sometimes (In my father’s case nearly all the time) not great at parenting.   They did not turn out to be the best equipped to raise someone with impairments…but they never saw me as ‘tragic.’ they wanted me to achieve and worked hard to help me do so while, paradoxically resenting the limitations that my very existence, and later my limitations placed on their lives.

They loved me….but they resented me too.  And maybe, that’s why  I gave it such a long try to live out in the world.  Out of sheer cussedness.

Katie’s parents sound nothing like that.  They sound like they are truly *invested* in being good parents.

I’m not going to paint them in a bad light

But I’m going to pretend I’m sitting accross the table from Katie’s Mom and Dad…

Dear Katie’s parents:

I just think she has a future.  an actual real three dimensional future…with length, breadth and depth to it.

I’m sorry for you.  I’m sorry you believe that it’s necessary to set the stage for the end of her life now. I understand this is your choice to make and you actually believe you are doing what’s best.

I’m resolved to hope for a Katie that is a cantakerous, beautiful disabled grown up woman.



  1. Katie Jones and Her DNR : Elaine Vigneault said,

    […] 1. Disability rights – Why isn’t she allowed to make her own decision? Or why is it presumed she hasn’t partaken in this decision? Why is the article presented as if CP is life-threatening? Why is the article presented as though she has no capabilities for expression? “Katie’s consciousness and feelings were not important in an article about whether or not she lives or dies and whether or not she gets to go to school in the meantime. What her thoughts about all this might possibly be is not once pondered in the article.” (source) “I’m 46 years old. I have cerebral palsy [admittedly a different and less affecting form than Katie Jones has ] plus four other impairments[…] “My parents were told I would die as a baby.” (source) […]

  2. Liz said,

    best post on this that I’ve read. I also wish for her to have the possibility of that beautiful cantankerous grown-up life.

  3. michaela bowerman said,

    helo my name is michaela and i am 14 years old i have a brother that has cerebral palsy and autism and he is going to be 11 on the 17th, he is my wourld. i am doing a report on cerebral palsy in my child phycology class and i was doing some resurch and i saw your web site i hate haveing to repeat myself a read it and i loved it i think that you are an amazing persdon and you should know that. i dont beleave that it put a state or anything of where you live we live in orgon if you read this it would be grat if you or someone in your family to wright back

    sinserly. Michaela Bowerman

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