Tuesday, February 24, 2015

So Much to Say there are Just No Words

There has been a lot of chatter on line these days about this new PSA

Go watch - see what you think.  I'd be interested to hear.

I've listened to parents say how good it is to see an ad that shows the truth about how hard FASD is.  I've listened to other parents talk about how hard this is to watch and how much it hurts them to think about their own children in these terms.  I've listened to adults on the fetal alcohol spectrum and to outsiders who have no personal connection to our community.  I find myself in bits and pieces of all of their comments and still somehow struggling for my own words.  I've asked permission to share some of theirs and where I have received it I will but I feel like continuing to wrestle with it myself is important.  For me this video cuts to the heart of the dilemma I struggle so hard to express over and over here.

 If we know how to prevent a difference should we be doing so?  Does that make the difference automatically “BAD”?  There are so many differences we have learned to accept – imperfectly true – but in this wholly imperfect world we have made at least some space.  Those that are blind or deaf or paralyzed or of different skin tones or different religions or different sexuality are not automatically shunned or separated.  To be sure racism, sexism, homophobia, religious persecution, ableism all still exist but they are no longer universally accepted.  There are people who will stand up and say “NO – this is not acceptable!”  And they are not only the people who ARE different fighting and pushing back on that hate.

What if though, what if we knew how to “prevent” homosexuality?  Or blindness?  Or a particular belief system?  Would it be ok to run public service ads promoting prevention?  Especially ads that focused entirely on fear – on the worst possible outcome for their lives?  Would it be ok to film a PSA that showed a young deaf boy – never taught to sign or lip read- punished for not hearing until he became depressed, violent, abused alcohol or drugs to escape his pain and confusion, ran away and living on the streets – to encourage women to – I don’t know - what ever prevented deafness in this hypothetical construct.  Having had many deaf friends in college (I attended a school with a specific program for deaf students) I feel pretty safe venturing the guess that the deaf community would be up in arms and they would not be alone.  How about an ad that showed a young homosexual being bullied and shamed into depression and possible suicide attempts then being killed by thugs like Matthew Shepard?  So that women would avoid what ever "caused" homosexuality?

I’m not saying that the information about the cause of FASD should not be out there – should not be widely distributed to the public, that we should not try to minimize the number of children born exposed.  But I AM tired of the relentless negative portrayal of those affected.  I’m tired of seeing their struggles and pain shown as inevitable when huge parts of those very struggles are preventable.  Let's work on prevention - lets work on prevention of their pain with understanding and support.  Being born deaf, or blind or homosexual or to a certain set of religious beliefs or of a certain race does NOT doom one to a life of misery and destruction and neither does being born alcohol exposed.  


  1. I have an auntie with spins bifida -- she encourages all her female relatives to get enough folic acid during pregnancy.

    I adore my aunt, she's a wonderful, loving, kid and well-educated woman who happens to be in a wheelchair and has a great life -- but she's also the first to tell you that if given a choice, she'd rather have been born healthy (causes of SB weren't known when she was born).

    I can't imagine living her *less.* if she didn't have SB -- nor could her husband, family and friends.

    Why WOULDN'T you want to prevent a preventable illness?

    My dad (who raised me as a single parent) was born blind... He's fine with it, also has a great life but would likely prefer to be NOT blind if it was an option.

    1. Kate - thank you for your thoughts. Many people who are disabled in one way or another would prefer not to have been. There are however also many who do not wish that their difference could have been prevented or could be corrected. I have no opinion on rightness or wrongness of their preferences. How could I since I do not share their experience?

      I do not believe looking for a prevention or cure is "bad" in itself. What I struggle so much with is why we are not making the world as accessible as possible to all those who are here now and experience it differently. IF there is a prevention or cure someday (or even now) - people should be free to choose or not choose it as they wish. (There are many many persons who choose NOT to have cochlear implant treatment for their deafness. I certainly do not feel qualified to tell them they are wrong any more than I would tell someone who did have the implant they were.) What I object to is stigmatizing people born with a difference when we do nothing to enable them to succeed as they are now. does that make what I was saying any clearer?