[Ohio-talk] Disabilities and their portrayal

Fri Jan 31 02:55:28 UTC 2014

Hi Lillie and all, 

I will comment on the last point you made first, Lillie, then will circle
back because I feel that is an entirely different issue of even greater
significance.  What you describe is part of the concept of eugenics, which
is essentially the practice of choosing the traits of a fetus or whether or
not to keep it based on its traits.  There's a great movie called Gataca
(based on the As, Cs, Ts, and Gs, in DNA code), about this topic against a
fictional plot line that explains it pretty well.  Eugenics is really a
two-sided coin.  It can be very helpful if the information obtained through
prenatal testing is used for the appropriate reasons.  I'll use myself as an
example.  My eye condition is caused by a genetic fluke, and the doctors
still aren't sure what did it.  It isn't as simple as saying I have a
certain gene turned on, or my kids will have a 1 in 10 chance of inheriting
my condition.  I think when I'm older I would want to try to figure out if
my offspring would have similar issues, not because I would give them up in
any way if they did, but so I could gather the money and other things to
take care of them as best I could since I know my parents could have
benefitted from a little advanced notice in terms of money and things like
that.  Same thing for people who find out their child has, let's say, Downs
Syndrome.  If they have that issue identified before the baby is born and
begin setting aside funds for speech therapy and other things the child may
specifically need in addition to basic necessities, then there is nothing
wrong with that and the information is actually useful.  On the other hand,
the fear of genetecists is that in the future people will conduct prenatal
testing on test tube embrios and try to pick and choose the traits.  If
human science reaches a point where a geneticist can turn genes off and on
at the descression of a set of potential parents, then that would not be
right.  

Abortion is another topic we will be talking about in this course, and I am
interested in seeing how that discussion will pan out.  I am not going to
say anything to UD about the catholic doctorin and the proceedings in my
class; I know it's ironic that such things would go on at a catholic
university, but I think the religion is very much irrelevant in this issue.
This type of conversation would be wrong if it were conducted at a public
university like Wright State, UC, or any other school.  Catholicism has
nothing to do with it, other than making the place for the conversation a
little stranger.  The bottom line is that there was false information in the
textbook, and false information in the class, and the hypothetical
discussion would have probably gone a completely different way had the real
information been provided.  "Mercy killing" might not have seemed as such
had the facts been presented.  

As for the question of whether or not doctors have the grounds to make
ethical decisions, there is no doubt that they do every day.  In this case,
however, the parents asked the doctor to do it, and the question was should
they or should they not.  Most of the class said yes, because based on what
the book said the boy was emaciated and in chronic pain, and would not live
much more than a few painful years if nothing was done anyway.  I know this
is false, and the class would have probably answered very differently if
Johnny was depicted realistically.  Colleen brought up another point, and
one that I thought of in class as well.  If Johnny were unable to speak, who
is to say that he was also unable to comprehend what was going on around
him?  The book did not say he was in a vegetative state, or that he was
mentally impaired in any way, so now there are questions of autonomy and
parentonomy that come into play.  Another issue with this part of the
textbook and class example is that this issue runs a lot deeper than it is
made out to be.  

Kaiti Shelton
University of Dayton---2016
Music Therapy Major, Psychology Minor, Clarinet
Ohio Association of Blind Students, President 
NFB Community Service Group, Service Project Committee Chair
Sigma Alpha Iota-Delta Sigma

-----Original Message-----
From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Lillie
Pennington
Sent: Thursday, January 30, 2014 9:27 PM
To: 'NFB of Ohio Announcement and Discussion List'
Subject: Re: [Ohio-talk] Disabilities and their portrayal

Hi Kaiti and All,

Forgive me if I am repeating what has been already said. 
I was quite disturbed by what happened in this classroom and the question
itself. 
Is it really that doctors decision, who in most cases is a distant isolated
factor in that persons life? Is it even the parents decision, who supposedly
know what is best for their children? Only you know what you can handle/are
capable of. Can these people who lack the true understanding honestly truly
make these unbiased decisions based on just cold, hard, facts and not their
personal opinions of what they think is best? Even, for example a parent who
is blind and has a child who is blind cannot truly make these decisions
based on what they think is best. Times have changed most likely and that
persons experiences are tainting their decision. As Atticus Finch said in To
Kill a Mockingbird, you can not truly understand someone until you have
truly walked a mile in their shoes. 
I know in the context of the book it was a completely different situation,
but I think it can be applied here and in many other situations. 
For example, if I as a visually impaired person have a child that turns out
to have a condition that they are unable to walk and are in a wheel chair, I
as a person with a disability cannot simply think that they have no chances
of a successful life and must take actions to ensure that that child does
not have to face life at all. My efforts would most likely be helping that
child transition and having as functional of a life as they could. 
Of course, I am assuming and it would depend on what that child wanted. 

I have one more thing that could be considered very contrivertial. There are
prenatal tests that can determine whether a child has certain medical
conditions, such as downs syndrome. I am not sure although I think they are
on the market, but what if the mother undergoes the test, finds out her
child has downs, and then aborts the child? What if it gets to a point where
hair color and other surface traits can be tested for? 

These are my opinions and I hope I haven't offended anyone. I apologize for
the slightly rambling tone of this. 

-----Original Message-----
From: Ohio-talk [mailto:ohio-talk-bounces at nfbnet.org] On Behalf Of Kaiti
Shelton
Sent: Thursday, January 30, 2014 11:21 AM
To: NFB of Ohio Announcement and Discussion List
Subject: [Ohio-talk] Disabilities and their portrayal

Hi all, 

I made quite a stir in my medical ethics class this morning.  We were asked
to consider an example from our book, which concerned a 10 year old boy who
was according to the book having all these horrible issues as a result of
CP.  Some of the things the book claimed about this boy were not
characteristics of CP at all, and it even claimed that CP was genetic itself
rather than caused by complications.  The question was, "Is it moral to kill
Johnny via lethal injection to end his pain and the suffering of his
parents?"  I wasn't going to say anything at first, but then I started
questioning things.  Is it moral to kill someone if you think they're in
pain, but they don't have the autonomy to tell you whether they are or not?
Is it moral to kill a child when his parents are making the request?  Is it
moral to make this decision without full and accurate knowledge of what the
condition really is?  

And you know what happened?  When I contradicted the book the professor was
first flustered, then when I started answering questions with the knowledge
I had he told me I was ahead of the curve, and proceeded with his lecture,
using the false information and pretenses the book provided.  I was shocked.
This is a class of pre-med majors (and me who is the only non-medical
specific person in the class), and it boggled me that this sort of stuff
would be fed to the next generation of doctors, dietitions, exercise
scientists, etc.  I know this is just an undergraduate class, but shouldn't
doctors always take a patient-centered approach, or a human-centered
approach for that matter?  And I'm reminded of "The Right to Live in the
World," and how what that speech says applies to this situation.  The
misinformation in my bioethics textbook only substantiates the claim that
people with disabilities lead miserable or terribly painful lives, and that
misninformation in the minds and hands of future doctors is a scary thing to
me.  

Anyway, just thought I'd continue discussion on this topic with others who
will get it.  I'm sorry if I ranted a little; I got a little passionate on
this issue.  

Kaiti Shelton

University of Dayton---2016

Music Therapy Major, Psychology Minor, Clarinet

Ohio Association of Blind Students, President 

NFB Community Service Group, Service Project Committee Chair

Sigma Alpha Iota-Delta Sigma

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