Genetically Speaking
I had another speaking opportunity today, this time at Children's Hospital of Philadelphia, where I addressed graduate students in genetic counseling. The students had the, dare I say, "pleasure" of listening to me for a full hour!
My talk was complete with a sharp PowerPoint presentation (put together by one Winheld's World reader -- you know who you are) that illustrated me at various points in my life. There were cute pictures of me and my sisters in our younger days, graduation pictures from high school and college, and some scary looking pictures from when I had lost tons of weight prior to my tracheotomy. My favorite picture (at right) was the one of me at Halloween the first year I was in a wheelchair, when I dressed as a military tank! As this was a class of genetic counseling students, I also touched on the issues of prenatal testing for Duchenne's and of pregnancy termination when a fetus is determined to have the disease. I told the students that while my life has been good and that I have been able to achieve plenty, if it is possible to prevent a child from being born with Duchenne's, I believe that should be done.
Certainly, I like the person I have become. However, I would trade it in a heartbeat for a "normal" life. And there is a huge physical, emotional, and financial burden placed on families raising a child with the disease. People can obviously deal with such concerns, but why go through all of this if you can avoid it in the first place?
The discussion lightened considerably when someone asked me what I didn't like about going to summer camp (the subject of one of the photos in my presentation). Yeah, something about group showers and using the toilet while your fellow camper is attempting the same feat on the adjacent throne didn't really do it for me.
But, hey, maybe that's just my personal preference!
3 comments:
Wahahahah, I am whooping with laughter at the tank costume Josh - that is so funny! You also just won yourself a 'Thinking Blogger Award'...smirks mysteriously...
Livvy xxx
>
> I just caught up to date with your blog and am so disheartened by the
> entry about your talk to the genetics students that I feel compelled to
> share my feelings with you. I do not wish to deny any of your own
> feelings, as they are truly your own and come from your life experience,
> personality, genetics and so on.
>
> First I must tell you that I am in favor of abortion rights and thus my
> sense of injustice in what you say isn't based on a doctrine opposing
> abortion in general. I know that those of us with disabilities are often
> seen as burdens to family members, prospective employers, service workers,
> teachers, and in many other places and by many other people who share our
> planet. I am not smug about my right to exist and live a full life and I
> do not think people without disabilities are entitled to smugness on their
> own behalf either. What troubles me is that you seem to believe, and
> you're not alone, that physical, financial, emotional, or other
> investments made toward a person with a disability such as Duchenne's
> aren't really worth it and my question to you is: to whom aren't they
> worth it? I doubt there are many of us with major disabilities who are
> delighted that our senses or body parts aren't functioning well, or at
> all. So I'm not advocating that we feel some sort of pride simply for
> having a disability. But what does it take in a human beings life, in
> your mind, to make his/her life worth living?
>
> As you well know, I have made the choice to give every level of support
> that I am able, to enable someone else with a disability to live the full
> life he chooses. I see it as an honor and a privilege to do so and this
> particular relationship is one of the most satisfying relationships with
> all the inherent richness and depth achievable in human intimacy that I
> will ever be privileged to enjoy in a lifetime. No, not every parent,
> child, or family can go the distance where severe disability impacts every
> aspect of life. I am particularly lucky to have the stamina,
> determination, mental faculty so useful in being a parent/caregiver. Many
> parents and families don't have the ability to go the distance and be
> fully present and available to another human being for a multitude of
> reasons and in myriad circumstances. So should we look at our social
> policies and value systems individually and as a country and address the
> really tough issues of giving good care to one another including the
> variety of needs that people may have due to poverty, disability, race,
> sexual orientation and so on, or should we advise people to abort fetuses
> because that child may be born needing something, or being someone, that
> their parents, or the world, isn't pleased to deal with. I do not believe
> that our disabilities in and of themselves make life not worth having. I
> believe it is the lack of resources for people with disabilities and those
> in supportive roles, which often make life seem too difficult, painful,
> complex, unrewarding. this may be what causes you to suggest that giving
> life to a baby known to have a disability is likely to be a dis-service to
> that child and family. I do not believe that disability is inherently
> burdensome or inherently not. But I think that the way we, as a society,
> and as individuals, need to give a lot more thoughtful consideration to
> what is valuable in life, in work, in relationships and in ourselves.
>
> If 99 out of 100 people treat me in a particular way, good or bad, it
> doesn't mean they're all on track, correct, clear-thinking, and doing what
> is in their own, or my interest. It just means that those 99 people are
> all doing the same thing. So I can't buy into the idea that if many
> people see me as a burden, I must certainly be one. I find many totally
> able-bodied people to be burdensome in key ways, and sometimes it would be
> delightful to think of having advised their parents against having them at
> all because of the drain they put on family, friends, co-workers, etc.
>
> Please understand that I don't feel you need to defend the statements you
> made to genetics students. Your comments and beliefs are yours to share
> or not with those you choose. I'm only presenting another perspective
> directly to you because I want you to know that to me, your life, your
> struggles, joys, and so on, are so worth having in this world and I am
> entirely grateful that you are present in the world I live in because my
> life, and the lives of many others, are the richer for it.
Josh, I remember when you could walk in the early 1980s - you were in the same Kindergarten class as my youngest brother.
To this day, I have one particular memory of you imprinted in my mind, which I'd like to share with you and your loyal readers:
I was in 2nd grade...and one day, during recess, I was standing at the top of the very steep staircase, near those double red doors, which led to the vestibule adjacent to the gymnasiam. That's when, either my brother or I, asked you to run for us. We watched you propel your body forward, in a way unlike we had ever seen. Both of your arms moved to one side of your body, fists clenched, and you broke out into a walk-run, with your feet shuffling. It was a jerky movement, and you seemed to be struggling.
We watch you in fascination, unsure of what to make of your running style. When we got home from school, I recollect telling our mother about how you "ran funny" - and her telling us, that making you run so we could watch - was not a nice thing to do.
I am not sure if you were even diagnosed with Duchenne's, yet.
However, your diagnosis did come shortly thereafter, and when my mother told us you had MD -
I felt awful for putting you on the spot - that one moment in time.
As an adult, looking back on the memory, which is pretty vivid, I always wished that I could tell you how sorry I was for making you feel like an outsider, or like you were "different." After reading your blog, it's incredibly clear to me, that you are a very special person - with an incredible message for those who are living with physical challenges and with Duchenne's. Your spirit is strong, and your words, moving! Keep up the amazing work. I look forward to your next entry.
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