Re: An issue maybe that's not completely today's issue

[Guest guest]

I have dealt with this issue myself only with my son who has cystic

fibrosis. We were not going to have other children because of the

25% chance of having another child with CF, but God told me to have

another one and it would be a girl and she would be healthy and to

tell my husband. My husband later agreed to having another child,

but it was a very difficult decision because you are talking at some

major health concerns nontheless a shorter life expectancy. We were

fortunate with Hunter, but maybe next time we would not be so

lucky. Some people were apalled at our decision to try for another

one. They thought; How cruel!! We did not want CF to take away our

dreams as a family. So we went on to put our faith in God. We had

the option of having in-vitro and have a 99% assurance that the next

child would not have CF, but you know what it would not have been

the child God intended for us. You see they could have tested the

embryos and destroyed the CF ones and implanted the non-CF ones. I

could not do this for my own beliefs and just because I had faith in

what God had already told me and I had to keep that faith. We did

have a prenatal CVS test to see if our baby had CF or not. We did

not have it to decide to abort or not, but rather to be better

prepared at the birth if there were birth defects. Asking if I

would abort because of a condition that our family has lived with is

like talking bad about a parent after divorce. The child is a part

of the other parent or the disease is a part of who the child is and

by deciding to abort for me would be like saying I am disappointed

in who you are. Again, this is just my view and I am not judging

anyone for their decisions. Everyone has to evaluate their own

belief system and make decisions that are best for their family. I

really do not think we should be ordering up the perfect child in

our eyes because nothing is a guarantee and no matter what I believe

people love each other for who they are despite the conditions they

may have. Yes, it is horrible to watch loved ones suffer, but the

disease or condition has made a huge impact in someway of those that

love them the most. For us, I look at CF as a blessing. Not my son

having the disease, but rather the people it has formed. We would

not be the same family we are today if we had not had a son with

CF. Trials and tribulations bring out the best and worst in people

and we need to emphasize the best and all the things we have been

blessed by. Hunter is very blessed despite having CF because he has

a family that loves him and cares for him. We as a family have

learned to love for the moment and love unconditionally. Hunter

could have been born without CF and maybe he would have been abused

by a family. There are just no guarantees. I think that science is

awesome in trying to cure and prevent diseases, but where science

draws the line is with destroying the potential because they are not

what someone else sees as perfect. Every being is perfect in the

creators eyes. Think of your greatest accomplishment, if it did not

happen perfectly you were still proud of your outcome despite the

ups and downs. I am sorry to ramble on, but I believe every

creation no matter how imperfect has great reward and possibility.

I hope people don't pre-judge their child's quality of life based on

a prenatal test. Miracles do happen. We have two of our own and I

would not change them for the world.

>

> I know I may be opening a can of worms, but I promise it's NOT

related to

> LPA or LPA politics in really any sense, but dwarfism as a whole:

>

> Some proponents of embryonic stem-cell research say eventually we

could find

> the cure for dwarfism (I'm not sure if they mean generally or all

300+ known

> types). Does that scare you or does that give you hope that

generations to

> come won't have to live the way we do?

>

> Would you abort (this is aimed at all) if your doctor said your

baby was

> going to have dwarfism? What about if the doctor recommended that

you abort

> it, solely on the dwarfism grounds and no other reason?

>

> Lastly, do you think we have the right to " genetically order our

children

> out of a catalog " (meaning pick their features- eye color, hair

color, skin

> tone, intelligence level, etc.)?

>

> Just wondering your thoughts...

>

>

>

>

[Guest guest]

Thank you for this . It is a highly emotional and politically charged

debate. Personally for me, having a child was a scary thing. I was very young,

and not really secure in my relationship with the man I was having the children

with. My first two were perfect, but I was still scared something would go

'wrong'.

By the time I had my third, the one child with a form a dwarfism, I knew

something was different with that child. My doctor didn't believe me and I am

very glad. If he had told me the information that the doctors gave me about

Jarrod's form of dwarfism before I had him, I think he would have suggested

abortion, and I think that I would have opted to do just that. It was horrific

information and I never in my wildest dreams thought that I could handle what we

did.

The wonderful thing is, that I didn't have the information, and once Jarrod was

born, I discovered he too was perfect and there was nothing I could do but

handle all the things that came at him/us. In doing this I found myself to be

stronger than I ever thought possible and him to be the one missing part to my

life. My husband and I bonded on a level that never could have happened if he

were born any other way.

I would not change one thing about him, or our experiences with him on any

level. He is who he is because of what experiences he has had, and I can't

imagine not having known him. At the same time, I am who I am because of my

experiences, and that includes him...And I basically like who I am becoming as a

human being.

Taking the chance out of life to me seems wrong. It is like second guessing the

true reason we live.

Yes, Jarrod has pain, but so do all of us, it is just different. I don't think

that building your future child in any particular genetic fashion is going to

change that one fact of life. Making everyone into Barbie Dolls, or Ken Dolls

isn't going to afford them the perfect life. To me it just robs one of the

growth and development that comes from the circumstances that arise to make life

just that, life.

My opinion...with a bit of experience thrown in...probably would have been

different many years ago, but that is what experiencing diversity does for a

person. :-)

Willow

-------------- Original message from Rapert <rrapert@...>:

--------------

> I know I may be opening a can of worms, but I promise it's NOT related to

> LPA or LPA politics in really any sense, but dwarfism as a whole:

>

> Some proponents of embryonic stem-cell research say eventually we could find

> the cure for dwarfism (I'm not sure if they mean generally or all 300+ known

> types). Does that scare you or does that give you hope that generations to

> come won't have to live the way we do?

>

> Would you abort (this is aimed at all) if your doctor said your baby was

> going to have dwarfism? What about if the doctor recommended that you abort

> it, solely on the dwarfism grounds and no other reason?

>

> Lastly, do you think we have the right to " genetically order our children

> out of a catalog " (meaning pick their features- eye color, hair color, skin

> tone, intelligence level, etc.)?

>

> Just wondering your thoughts...

>

>

>

>

[Guest guest]

> Some proponents of embryonic stem-cell research say

> eventually we could find

> the cure for dwarfism (I'm not sure if they mean

> generally or all 300+ known

> types).

I was unaware I needed to be cured. I suppose I'm

confused with this statement which I would interpret

as saying, they could give me the magic pill and fix

me.

>Does that scare you or does that give you

> hope that generations to

> come won't have to live the way we do?

It scares me only if they are trying to create a

perfect society free from any problems.

> Would you abort (this is aimed at all) if your

> doctor said your baby was

> going to have dwarfism? What about if the doctor

> recommended that you abort

> it, solely on the dwarfism grounds and no other

> reason?

I think it would get real interesting if the doctor

added, " and by the way, the abortion will be covered

by your health care, and should you choose to decide

to have this baby it will be considered a pre-existing

condition and all medical care related to his or her

dwarfism will not be covered by your insurance. " I

know for me personally my medical expenses from birth

until now are in the millions. If I didn't have health

insurance... I couldn't even imagine.

> Lastly, do you think we have the right to

> " genetically order our children

> out of a catalog " (meaning pick their features- eye

> color, hair color, skin

> tone, intelligence level, etc.)?

Personally, I can't pass judgement on whether we have

the right. We have been given the choice and ability

to do so. Should we eat the apple on the tree just

because it's there?

I would throw height into those categories though.

Without judging, I could say that the same case could

be made for any of those categories as it could for

ELL. To fit in. I tend to see both sides of the

spectrum, but when given the choice to me personally,

I'll go with what was given to me. If the great one

upstairs thinks I should have an LP, smart, blond

whatever kid, then that's what I'll end up with. I put

faith in faith. (I've also watched too much star

trek, for those that have seen it....I'm refering the

The Wrath of Khan)

-Casey

__________________________________

Start your day with - Make it your home page!

http://www./r/hs

[Guest guest]

Great Post Casey,

I agree, I didn't know I needed to be cured, no one

asked me, plus honestly I have nothing to be cured

from.

How many of these scientists and geneticists have

actually met people with a dwarfism??? All they see is

a " problem " they can fix.

Sorry but I'd rather have them spend their time and

effort looking for a cure for AIDS or Cancer then

making me a foot taller. To me my size is just vanity.

I am happy the way I am for the reason that all of my

successes and failures had nothing to do with my

height but because of me. So I am short, big deal.

If a doctor ever told me or highly suggested an

abortion because my kids would be short, you better

believe I'd give him/her a piece of my mind. In fact,

I would love to have little lp kids! They are the most

adorable kids ever. As far as having them go through

what I did? Hey, my life is not ruined, I am a happy

well adjusted adult and those bumps in the road only

made me stronger, I wish more people experienced that

to truly see what they have.

Basically to sum up how I see things: If I go to the

store and I can't reach something, in my mind I think

" they need to lower these things " not " boo-hoo I wish

I was taller, if I was only taller " .

Hmm cure AIDS or cure dwarfism, or how about the flu,

that bothers me wayyyy more than dwarfism!

-

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

" but I promise it's NOT related to LPA or LPA politics in really any

sense, but dwarfism as a whole "

Worms of another color and with a different wiggle I guess

" Some proponents of embryonic stem-cell research say eventually we

could find the cure for dwarfism "

While 'we' all know " Dwarfism isn't a disease that requires a " cure. "

Most people with the condition can live long, fulfilling lives. " , we

also have to realize that because there is such variety and physically

they go from one end of the spectrum to another, finding a 'cure'

could be more about eliminating the extremes, not eradicating all

types (as well as all heights). Would we not like to eliminate the

possiblity of -let's say- double dominate and that outcome? Aren't

some types much more difficult to deal with when it comes to living

live 'fulfilling lives'?

(and on a whole other topic, something new I had not seen on the

internet before and found fascinating:

http://www.e-radiography.net/ibase5/Hand/slides/Hand_dwarfism.jpg )

" Does that scare you or does that give you hope that generations to

come won't have to live the way we do? "

I would like to think that progress would encompass someone in the

future having an easier life than I have and being able to cope on a

daily basis with less frustrations. And as someone who is aging and

finding life much more physically difficult (at bascially the young

age of 50) I would like to spare a future generation some of the pain

and physical frustration. Especially since we seem to be living longer

lives or at least having the possibility of enjoying certain aspects

of our so called 'middle age' more than perhaps 2 generations ago.

One small example: Seems the routine in American society is to work

when one is young and enjoy the benefits of slaving when one has paid

their dues or is able to retire. When I was younger and more

physically able I didn't have the funds to visit far away places such

as Greece/Paris/Rome even my own beautiful island of Cuba, now that I

am at a certain point in my life and certain aspects of SED have

caught up with me I can't visit 'the' Greece/Paris/Rome /Cuba that " I "

would like to see. I can go to these places, but I know the experience

isn't the one I long(ed) for. Such is life I guess, but I'd like to

think that due to the physical ailments/limitations associated with

dwarfism someone in the future would be spared the frustrations and be

able to reap the benefits of the 'dues' they paid.

" Would you abort (this is aimed at all) if your doctor said your baby

was going to have dwarfism? "

Although I would not have opted to have my own children (become

pregnant) due to my dwarfism, if I had found myself pregnant I

probably would have opted to continue the pregnancy. Although I

believe in having choices, I also know that dwarfism isn't devestating

or for the most part a death sentence.

" What about if the doctor recommended that you abort it, solely on the

dwarfism grounds and no other reason? "

Then it's time to find another doctor.

" Lastly, do you think we have the right to " genetically order our

children out of a catalog " (meaning pick their features- eye color,

hair color, skin tone, intelligence level, etc.)? "

Due to the advancements of scientific technology some of it is already

a choice and some of it has been a choice by nature. On the average

don't we have a certain 'type' we seek when picking mates? Don't some

of us opt to only mate with others dwarfs? And don't some opt to date

outside of the community? Some choose to date within their own race or

are only attracted to those who most mirror their own image.

I suppose at some point (are we there already?) we will be able to

pick out characteristics that are genetically controlled. Isn't that

sort of one of the concepts of 'sperm banks'? I remember hearing of

banks where the donors are 'above average'. Look at the type of

information one receives along with those 'little swimmers'.

Interesting topic...................food for thought.

[Guest guest]

Rhonda,

I know you mean the best but I always rail when non-disabled people make the

argument that a disabled child is a gift because it has made the people

around them better people. That makes the disability all about them and not

about the disabled child. It makes a child feel that they were born to

suffer so that those around them can become " better people " . ly, that

argument isn't fair to a child. I happen to know three people with CF and

not a one of them thinks they were " blessed " because they have CF. They deal

with it and they live with it and they make the most of their lives. But

they surely don't feel blessed. They would surely rather not have CF. When

able bodied parents argue that they've been blessed because they have a

disabled child, I always feel they are either extremely selfish or in

desperate need of a justification. That's my two cents.

H.

Re: An issue maybe that's not completely today's issue

>I have dealt with this issue myself only with my son who has cystic

> fibrosis. We were not going to have other children because of the

> 25% chance of having another child with CF, but God told me to have

> another one and it would be a girl and she would be healthy and to

> tell my husband. My husband later agreed to having another child,

> but it was a very difficult decision because you are talking at some

> major health concerns nontheless a shorter life expectancy. We were

> fortunate with Hunter, but maybe next time we would not be so

> lucky. Some people were apalled at our decision to try for another

> one. They thought; How cruel!! We did not want CF to take away our

> dreams as a family. So we went on to put our faith in God. We had

> the option of having in-vitro and have a 99% assurance that the next

> child would not have CF, but you know what it would not have been

> the child God intended for us. You see they could have tested the

> embryos and destroyed the CF ones and implanted the non-CF ones. I

> could not do this for my own beliefs and just because I had faith in

> what God had already told me and I had to keep that faith. We did

> have a prenatal CVS test to see if our baby had CF or not. We did

> not have it to decide to abort or not, but rather to be better

> prepared at the birth if there were birth defects. Asking if I

> would abort because of a condition that our family has lived with is

> like talking bad about a parent after divorce. The child is a part

> of the other parent or the disease is a part of who the child is and

> by deciding to abort for me would be like saying I am disappointed

> in who you are. Again, this is just my view and I am not judging

> anyone for their decisions. Everyone has to evaluate their own

> belief system and make decisions that are best for their family. I

> really do not think we should be ordering up the perfect child in

> our eyes because nothing is a guarantee and no matter what I believe

> people love each other for who they are despite the conditions they

> may have. Yes, it is horrible to watch loved ones suffer, but the

> disease or condition has made a huge impact in someway of those that

> love them the most. For us, I look at CF as a blessing. Not my son

> having the disease, but rather the people it has formed. We would

> not be the same family we are today if we had not had a son with

> CF. Trials and tribulations bring out the best and worst in people

> and we need to emphasize the best and all the things we have been

> blessed by. Hunter is very blessed despite having CF because he has

> a family that loves him and cares for him. We as a family have

> learned to love for the moment and love unconditionally. Hunter

> could have been born without CF and maybe he would have been abused

> by a family. There are just no guarantees. I think that science is

> awesome in trying to cure and prevent diseases, but where science

> draws the line is with destroying the potential because they are not

> what someone else sees as perfect. Every being is perfect in the

> creators eyes. Think of your greatest accomplishment, if it did not

> happen perfectly you were still proud of your outcome despite the

> ups and downs. I am sorry to ramble on, but I believe every

> creation no matter how imperfect has great reward and possibility.

> I hope people don't pre-judge their child's quality of life based on

> a prenatal test. Miracles do happen. We have two of our own and I

> would not change them for the world.

>

>

>>

>> I know I may be opening a can of worms, but I promise it's NOT

> related to

>> LPA or LPA politics in really any sense, but dwarfism as a whole:

>>

>> Some proponents of embryonic stem-cell research say eventually we

> could find

>> the cure for dwarfism (I'm not sure if they mean generally or all

> 300+ known

>> types). Does that scare you or does that give you hope that

> generations to

>> come won't have to live the way we do?

>>

>> Would you abort (this is aimed at all) if your doctor said your

> baby was

>> going to have dwarfism? What about if the doctor recommended that

> you abort

>> it, solely on the dwarfism grounds and no other reason?

>>

>> Lastly, do you think we have the right to " genetically order our

> children

>> out of a catalog " (meaning pick their features- eye color, hair

> color, skin

>> tone, intelligence level, etc.)?

>>

>> Just wondering your thoughts...

>>

>>

>>

>>

[Guest guest]

,

Are you doing a research paper for an ethics class? :-) I'm taking ethics

next term, BTW.

I think finding a cure for the sypmtoms associatied with dwarfism, through

stem cell research, is a good thing. This is not the same as eliminating

dwarfism from the gene pool. I think genetic diversity is a good thing.

Without genetic diversity, the whole of human race would more succeptible to

plague and extinction. Who knows, in a few generations, a new type of

plague may crop up that only affects people over 4'10 " . Then dwarfs will

rule!!! LOL.

BUT, if through stem cell research, we can rebuild the nerve cells of

someone affected with spinal stenosis, for instance, than this is good. If

we can replaced failed organs, such as kidneys, livers, hearts and eyes,

through stem cells, then I'm all for it. ELL is a whole other can of

worms. If done for cosmetic reasons, nay, if for correction of severe

orthopedic problems, yea.

I'm against aborting a child because of a genetic anomoly. That doesn't

mean I'm a right wing pro-lifer (I do personally believe abortion is wrong,

but I also believe in a woman's right to choose -- even if it is a wrong

choice). But abortion should only be used as a last resort (i.e. for rape,

incest, health of mother) and not as a tool of convenience or birth

control. I wouldn't want to wish my orthopedic problems on anyone,

especially my children, but that is not a good enough reason to deny them a

chance at existence.

As far as picking traits out of a catalog, I'm not for creating a race of

genetic superhumans (i.e. " Blade Runner " ). However, if sense of humor was

one of the choices, I might have to pick that.

-Bill

On 11/29/05, Rapert <rrapert@...> wrote:

>

> I know I may be opening a can of worms, but I promise it's NOT related to

> LPA or LPA politics in really any sense, but dwarfism as a whole:

>

> Some proponents of embryonic stem-cell research say eventually we could

> find

> the cure for dwarfism (I'm not sure if they mean generally or all 300+

> known

> types). Does that scare you or does that give you hope that generations

> to

> come won't have to live the way we do?

>

> Would you abort (this is aimed at all) if your doctor said your baby was

> going to have dwarfism? What about if the doctor recommended that you

> abort

> it, solely on the dwarfism grounds and no other reason?

>

> Lastly, do you think we have the right to " genetically order our children

> out of a catalog " (meaning pick their features- eye color, hair color,

> skin

> tone, intelligence level, etc.)?

>

> Just wondering your thoughts...

>

>

>

>

[Guest guest]

,

These are some very interesting, deeply complex questions that I am

studying right now myself. I am going to give you my opinion, but if

you want to do some further reading on these questions, may I suggest:

, . 'Citizen Cyborg: Why Democratic Societies Must

Respond to the Redesigned Human of the Future.' Westview Press.

2004. (Written by my teacher and friend. I disagree with much of it,

but he is a good man and a competent scholar.)

Naam, Ramez. 'More Than Human: Embracing the Promise of Human

Enhancement.' Broadway. 2005.

President's Council on Bioethics. 'Beyond Therapy: Biotechnology and

the Pursuit of Happiness.' (I have this entire thing in PDF format if

you are interested. It's a huge file but a very powerful conservative

voice in these debates, written by some of the leading thinkers of

our time.)

None of these sources really address the disability rights aspect of

the problem that you ask about specifically, but they all grapple

with the ethical problems associated with humans " designing " humans.

OK, now for my response to your questions. I'll try to keep it short

and not offend anyone, but I can't make promises about either.

Before we can answer your specific ethical questions, we need to

understand what a disabilty really is. There are two competing

theories that answer this question and how we answer your questions

largely hinges on how we answer this larger question.

Option 1: The Medical Model

This paradigm says that disability is purely a medical problem to be

solved. Basically it argues that everything from dwarfism to

diabetes is a deviation from an objective norm of health and that

such deviations should be eliminated to keep people healthy and

happy.

The logical outcome of this thinking is that we should use technology

as a means to this end, whether it be gene therapy, selective

abortion, nanotechnology, pharmaceuticals, etc.

This is the dominant theory. It has tremendous strength in our

science driven society and many wealthy, powerful people and

institutions have a stake in maintaining this way of framing the

issue.

Option 2: The Social/Cultural Model

This paradigm argues that there is no such thing as an objective

standard of health. What it means to be healthy or ill, able bodied

or disabled is a construction of our western society and culture.

The line between disabled and abled is not drawn by an objective

standard of science but by our cultural values. In other words,

there is a tremendous variety of human forms and the actions or

abilities that " matter " are determined by a cultural and society in

see a specific time and place. For example, 70 percent of the human

population has at least a very mild form of dyslexia. Of course, the

cast majority of these cases are so mild as to go undiagnosed, but

the reason why the 15-20% of the population that is dyslexic enough

for it to matter are considered " disabled " has more to do with how

western human society has constructed language. People with dyslexia

are disabled not because there brain is unhealthy, but because it

functions in a way that it cannot process symbols from right to left

as quickly or accurately. This skill is not important in other types

of societies in other times and places, and so this difference would

not be a disability there. Dwarfism is another good example. ATM

machines, gas pumps, toilet seats, etc. do not occur in nature. They

are cultural constructs and the reason why we are " disabled " is

because many of the actions that are " important " in our culture are

more difficult because of how our society has designed things.

The logical outcome of this type of thinking is that we should use

technology to find ways of designing our society that makes it more

inclusive. If every building had a ramp and ever door had an

electronic opener, a wheelchair user's disability would all but

disappear (this doesn't eliminate prejudice and discrimination

against those with a physical difference, but for it to happen, such

negative stereotypes would already have to have been demolished).

This paradigm of disability is fiercely opposed to selective abortion

because of its active devaluation of the lives of people who are

disabled. For the same reasons this viewpoint also opposes the use

of technology to " fix " people with disabilities, whether it be

through the manipulation of genes, cochlear implants, or limb

lengthening surgeries. Although this type of activity is more a more

passive expression of " ableism " than selective abortion, many

activists feel that it embraces and encourages the same devaluation

of the variety of human life.

My opinion:

I hate dichotomies like the one i laid out above. I think that there

are certain truths to both models of disability and it is foolish and

destructive to fully embrace either one. Like any ideology, when you

embrace it so completely that you are no longer capable of

considering thoughts from outside of it, you have put yourself in a

very sad little intellectual box that is not nuanced enough to

account for all of the rich complexities of our world. The above

models of thinking should be tools we can use to clarify ideas, not

dogmas.

Therefore, I think that it really depends on the disability and the

attitudes the person has as they make their decision. There is a

distinction between a parent deciding to abort a fetus with

achondroplasia and a parent deciding to use gene therapy to cure a

fetus that has spina bifida (this type of technology is quickly

advancing and will be an option in our lifetimes.) Whether you

believe in evolution or intelligent design, human beings are equipped

with some very strong moral feelings that tell us that we should

prevent or act against suffering. However, these same feelings of

conscience tell us that we should love and respect everyone, despite

their superficial differences. In the issue that you raise, , we

must walk a fine line between these competing moral intuitions and

not fall into the trap of being enslaved to one narrow ideology that

holds one intuition up as sacred at the total expense of the other.

And finally, a quote from aristotle: " It is the mark of an educated

mind to be able to entertain a thought without accepting it. "

peace and progress,

Joe

>

> I know I may be opening a can of worms, but I promise it's NOT

related to

> LPA or LPA politics in really any sense, but dwarfism as a whole:

>

> Some proponents of embryonic stem-cell research say eventually we

could find

> the cure for dwarfism (I'm not sure if they mean generally or all

300+ known

> types). Does that scare you or does that give you hope that

generations to

> come won't have to live the way we do?

>

> Would you abort (this is aimed at all) if your doctor said your

baby was

> going to have dwarfism? What about if the doctor recommended that

you abort

> it, solely on the dwarfism grounds and no other reason?

>

> Lastly, do you think we have the right to " genetically order our

children

> out of a catalog " (meaning pick their features- eye color, hair

color, skin

> tone, intelligence level, etc.)?

>

> Just wondering your thoughts...

>

>

>

>

[Guest guest]

http://www.gadsdentimes.com/apps/pbcs.dll/article?

AID=/20051120/ZNYT04/511200352/1011

Here's a recent article that was in The NY times but the link used is

from an Alabama newspaper, which touches on the thread at hand.

Included in it is the mention of one of 'us', " Hedley, whose 10-

year-old daughter has dwarfism, said the condition is usually not

detected prenatally.... "

The article's link is subscription based, so it may only let you view

it once without signing up. Thus, I copied and pasted the entire

article below. It is rather lengthy, but worth reading:), grady.

" The Problem With an Almost-Perfect Genetic World "

By AMY HARMON

New York Times

MIA PETERSON is not a fan of tests. Because she has Down syndrome,

she says, she cannot always think as fast as she would like to and

tests end up making her feel judged. A recent driving test, for

instance, ended in frustration.

Ms. , 31, the chief of self-advocacy for the National Down

Syndrome Society, prefers public speaking and travel. And her test

aversion extends to the latest one designed to detect Down in a

fetus. " I don't want to think like we're being judged against, " Ms.

said. " Not meeting their expectations. "

Heralded in the Nov. 10 issue of The New England Journal of Medicine,

the new prenatal test provides earlier, more reliable results for all

women than the current test, which is routinely offered to only older

women who are at higher risk. But for people with Down syndrome and

the cluster of other conditions subject to prenatal screening, the

new test comes with a certain chill.

Because such tests often lead to abortions, people with conditions

from mental disability to cystic fibrosis may find their numbers

dwindling. As a result, some fear, their lives may become harder just

as they are winning the fight for greater inclusion.

" We're trying to make a place for ourselves in society at a time when

science is trying to remove at least some of us, " said

Imparato, president of the American Association of People With

Disabilities, who suffers from bipolar disorder. " For me, it's very

scary. "

Some bioethicists envision a dystopia where parents who choose to

forgo genetic testing are shunned, or their children are denied

insurance. Parents and people with disabilities fear they may simply

be more lonely. And less money may be devoted to cures and education.

The Cystic Fibrosis Foundation, for instance, does not endorse

prenatal testing, which the American College of Obstetricians and

Gynecologists recommends offering during pregnancy.

" If you can terminate pregnancies with a condition, who is going to

put research dollars into it? " said Press, a professor of

medical anthropology at Oregon Health and Science University.

Indeed, the $15 million spent on the new test for Down by the

National Institute of Child Health and Human Development might have

gone instead toward much-needed research on the biochemistry of

people living with the condition, said Bérubé, co-director of

the disabilities studies program at Pennsylvania State University.

Mr. Bérubé, whose 14-year-old son has Down syndrome, worries that if

fewer children are born with the condition, hard-won advances like

including them in mainstream schools may lose support. " The more

people who think the condition is grounds for termination of a

pregnancy, the more likely it will be that you'll wind up with a

society that doesn't welcome those people once they're here, " he

said. " It turns into a vicious cycle. "

Shriver, founder of Best Buddies, a nonprofit organization

that helps people with intellectual disabilities form friendships,

said smaller numbers will mean even greater social isolation for the

people his group serves.

" Loneliness is one of the most significant challenges they face, " Mr.

Shriver said. " And it would only become more acute as they became a

smaller segment of the population. "

Beyond the impact on the disabled, disabilities activists say, the

implications of prenatal testing for diversity and democracy require

more attention than they have so far received.

Hedley, whose 10-year-old daughter has dwarfism, said the

condition is usually not detected prenatally. It is so rare that it

has traditionally not been considered worth the expense of the

genetic test. Soon, though, pregnant women may be offered a gene-chip

technology that can perform hundreds of tests at once for a few

hundred dollars.

" It's so complicated, " said Ms. Hedley, president of the Children of

Difference Foundation. " Would I choose to have my child have a

disability? Oh my goodness, no. It's difficult for her. It's

difficult for everyone. But difference is what makes the world go

round. "

Supporters of abortion are especially wary of wading into a

discussion over the ethics of prenatal testing, lest they be seen as

playing into the opposing side in the fraught national debate over

abortion rights. But advocates for people with disabilities are

troubled by how much faster the science of prenatal testing is

advancing than the public discussion of how it ought to be used.

If no child is ever born again with the fatal childhood disease Tay-

Sachs, many might see that as a medical triumph. But what about other

conditions, including deafness, which some do not consider to be a

disability, and Huntington's Disease, an adult-onset neurological

disorder?

Among the difficult choices facing prospective parents in coming

years, genetics researchers say, will be the ability to predict the

degree of severity in chromosomal abnormalities like Down syndrome,

which can cause mild to moderate retardation.

" Where do you draw the line? " said Mark A. Rothstein, director of the

Bioethics Institute at the University of Louisville School of

Medicine. " On the one hand we have to view this as a positive in

terms of preventing disability and illness. But at what point are we

engaging in eugenics and not accepting the normal diversity within a

population? "

Abortion, Mr. Rothstein and others fear, could become a kind of " poor

man's gene therapy, " if cost-conscious health insurance companies see

it as less expensive than treating a disabled child. Others argue

that prenatal testing will be limited to those who can afford it,

leaving the poor to grapple with genetic disability and disease.

Of course, as more conditions are diagnosed in utero, many parents

may simply decline testing, or use the information to prepare

themselves. But studies have shown that women are considerably more

likely to terminate their pregnancies if they know of fetal anomalies.

One study of 53,000 women's choices, published in Obstetrics &

Gynecology in 2002, found that the termination rate ranged from about

1 percent for conditions that were classified as having no impact on

the quality of life, to 50 percent for those considered to have a

serious impact.

Women were far more likely to choose abortions for disabilities that

have a high probability of affecting cognitive functioning. For

conditions that have little or no impact on the quality of life but

might require medical or surgical therapy, the abortion rate was 16

percent, but doubled for those likely to cause mental dysfunction.

As for Down syndrome, doctors estimate that about 80 percent of women

who get positive test results choose abortion.

Still, some who work with Down syndrome children don't believe the

future is that grim. C. Crocker, director of the Down syndrome

program at Children's Hospital Boston, believes that number of women

who choose to continue their pregnancies will go up in the coming

years.

Even as genetic tests appear to have lowered the number of Down

syndrome births, he said, social conditions for people with the

conditions have improved markedly.

" We're in the midst of a gentle social revolution, " said Dr. Crocker,

and, he believes, it may just outpace the scientific one.

[Guest guest]

I agree with most of which you said Joe.

One note abut Aristotle (philosphy is one of my majors):

While a good quote, Aristotle also believed that women were far inferior to

men (a sub-species of men), and that governments should be organized into

three heirarchies: the workers, the warriors, and the philospher/kings. Of

course, only white males were allowed to occupy the top position.

But you are absolutely right in stating that culture is a sociological

construction, and the " culture of disability " is probably more influenced by

the society one is born into, and not biology.

Unfortunately, behaviors and attitudes change faster than cultures and

institutions. In this digital information age people want things " here and

now, " and are impatient for change.

I prefer a couple quotes from Buddha: " He is able who thinks he is able. "

and " There are only two mistakes one can make along the road to truth; not

going all the way, and not starting. "

Keep posting Joe! Your thoughts are stimulating!

-Bill

On 12/1/05, Joe <joseph.stramondo@...> wrote:

>

> ,

>

> These are some very interesting, deeply complex questions that I am

> studying right now myself. I am going to give you my opinion, but if

> you want to do some further reading on these questions, may I suggest:

>

> , . 'Citizen Cyborg: Why Democratic Societies Must

> Respond to the Redesigned Human of the Future.' Westview Press.

> 2004. (Written by my teacher and friend. I disagree with much of it,

> but he is a good man and a competent scholar.)

>

> Naam, Ramez. 'More Than Human: Embracing the Promise of Human

> Enhancement.' Broadway. 2005.

>

> President's Council on Bioethics. 'Beyond Therapy: Biotechnology and

> the Pursuit of Happiness.' (I have this entire thing in PDF format if

> you are interested. It's a huge file but a very powerful conservative

> voice in these debates, written by some of the leading thinkers of

> our time.)

>

> None of these sources really address the disability rights aspect of

> the problem that you ask about specifically, but they all grapple

> with the ethical problems associated with humans " designing " humans.

>

> OK, now for my response to your questions. I'll try to keep it short

> and not offend anyone, but I can't make promises about either.

>

> Before we can answer your specific ethical questions, we need to

> understand what a disabilty really is. There are two competing

> theories that answer this question and how we answer your questions

> largely hinges on how we answer this larger question.

>

> Option 1: The Medical Model

>

> This paradigm says that disability is purely a medical problem to be

> solved. Basically it argues that everything from dwarfism to

> diabetes is a deviation from an objective norm of health and that

> such deviations should be eliminated to keep people healthy and

> happy.

>

> The logical outcome of this thinking is that we should use technology

> as a means to this end, whether it be gene therapy, selective

> abortion, nanotechnology, pharmaceuticals, etc.

>

> This is the dominant theory. It has tremendous strength in our

> science driven society and many wealthy, powerful people and

> institutions have a stake in maintaining this way of framing the

> issue.

>

> Option 2: The Social/Cultural Model

>

> This paradigm argues that there is no such thing as an objective

> standard of health. What it means to be healthy or ill, able bodied

> or disabled is a construction of our western society and culture.

> The line between disabled and abled is not drawn by an objective

> standard of science but by our cultural values. In other words,

> there is a tremendous variety of human forms and the actions or

> abilities that " matter " are determined by a cultural and society in

> see a specific time and place. For example, 70 percent of the human

> population has at least a very mild form of dyslexia. Of course, the

> cast majority of these cases are so mild as to go undiagnosed, but

> the reason why the 15-20% of the population that is dyslexic enough

> for it to matter are considered " disabled " has more to do with how

> western human society has constructed language. People with dyslexia

> are disabled not because there brain is unhealthy, but because it

> functions in a way that it cannot process symbols from right to left

> as quickly or accurately. This skill is not important in other types

> of societies in other times and places, and so this difference would

> not be a disability there. Dwarfism is another good example. ATM

> machines, gas pumps, toilet seats, etc. do not occur in nature. They

> are cultural constructs and the reason why we are " disabled " is

> because many of the actions that are " important " in our culture are

> more difficult because of how our society has designed things.

>

> The logical outcome of this type of thinking is that we should use

> technology to find ways of designing our society that makes it more

> inclusive. If every building had a ramp and ever door had an

> electronic opener, a wheelchair user's disability would all but

> disappear (this doesn't eliminate prejudice and discrimination

> against those with a physical difference, but for it to happen, such

> negative stereotypes would already have to have been demolished).

>

> This paradigm of disability is fiercely opposed to selective abortion

> because of its active devaluation of the lives of people who are

> disabled. For the same reasons this viewpoint also opposes the use

> of technology to " fix " people with disabilities, whether it be

> through the manipulation of genes, cochlear implants, or limb

> lengthening surgeries. Although this type of activity is more a more

> passive expression of " ableism " than selective abortion, many

> activists feel that it embraces and encourages the same devaluation

> of the variety of human life.

>

> My opinion:

>

> I hate dichotomies like the one i laid out above. I think that there

> are certain truths to both models of disability and it is foolish and

> destructive to fully embrace either one. Like any ideology, when you

> embrace it so completely that you are no longer capable of

> considering thoughts from outside of it, you have put yourself in a

> very sad little intellectual box that is not nuanced enough to

> account for all of the rich complexities of our world. The above

> models of thinking should be tools we can use to clarify ideas, not

> dogmas.

>

> Therefore, I think that it really depends on the disability and the

> attitudes the person has as they make their decision. There is a

> distinction between a parent deciding to abort a fetus with

> achondroplasia and a parent deciding to use gene therapy to cure a

> fetus that has spina bifida (this type of technology is quickly

> advancing and will be an option in our lifetimes.) Whether you

> believe in evolution or intelligent design, human beings are equipped

> with some very strong moral feelings that tell us that we should

> prevent or act against suffering. However, these same feelings of

> conscience tell us that we should love and respect everyone, despite

> their superficial differences. In the issue that you raise, , we

> must walk a fine line between these competing moral intuitions and

> not fall into the trap of being enslaved to one narrow ideology that

> holds one intuition up as sacred at the total expense of the other.

>

> And finally, a quote from aristotle: " It is the mark of an educated

> mind to be able to entertain a thought without accepting it. "

>

> peace and progress,

>

> Joe

>

>

>

>

>

> >

> > I know I may be opening a can of worms, but I promise it's NOT

> related to

> > LPA or LPA politics in really any sense, but dwarfism as a whole:

> >

> > Some proponents of embryonic stem-cell research say eventually we

> could find

> > the cure for dwarfism (I'm not sure if they mean generally or all

> 300+ known

> > types). Does that scare you or does that give you hope that

> generations to

> > come won't have to live the way we do?

> >

> > Would you abort (this is aimed at all) if your doctor said your

> baby was

> > going to have dwarfism? What about if the doctor recommended that

> you abort

> > it, solely on the dwarfism grounds and no other reason?

> >

> > Lastly, do you think we have the right to " genetically order our

> children

> > out of a catalog " (meaning pick their features- eye color, hair

> color, skin

> > tone, intelligence level, etc.)?

> >

> > Just wondering your thoughts...

> >

> >

> >

> >

[Guest guest]

Hey Bill,

Aristotle had it wrong when he said that only white males can be

philosopher kings. I think I should be the only philosopher running

around (errr... wheeling). The other white males can go jump in a

lake ;P No, in all seriousness, I like to quote some of Aristotle's

more intriguing maxims once in a while, but would never call myself an

Aristotelian. He did alot to bring philosophy to where it is as far

as methods, but he didn't come close to getting it all the way to

where it is as far outcome in ethics, metaphysics, epistomology,

logic, etc. People who say that philosophers waste their time and

that it never progresses should compare plato to russell.

I am completely unfamiliar w/ eastern thought, and as far as western

stuff goes, i do mostly bioethics by the analytic method. The school

i identify most closely w/ for a truth theory is American Pragmatism.

If you haven't read the pragmastists (esp Dewey), you should

check it out.

As for affecting social change, I think that behaviours, attitudes,

institutions, and cultures are all more or less expressions of the

same phenomenon that express themselves in slightly different ways and

play off of each other. Behaviours are actions that express attitudes

that are encouraged and made more permanent by the establishment of

institutions that are designed by cultures. Of course, institutions

are designed to control behaviors through insentives or punishments

and cultures have a reciprocal causal relationship with the attitudes

people have. The interelations are more of a complex web than they are

a line of causation. Changing one piece of the puzzle changes the

others and it is not easy to figure out which piece to attack because

they are interelated in such a complex way. I think we have had this

conversation before and it probably bores everyone but us, so I'll

stop now.

cheers,

Joe

> > >

> > > I know I may be opening a can of worms, but I promise it's NOT

> > related to

> > > LPA or LPA politics in really any sense, but dwarfism as a whole:

> > >

> > > Some proponents of embryonic stem-cell research say eventually we

> > could find

> > > the cure for dwarfism (I'm not sure if they mean generally or all

> > 300+ known

> > > types). Does that scare you or does that give you hope that

> > generations to

> > > come won't have to live the way we do?

> > >

> > > Would you abort (this is aimed at all) if your doctor said your

> > baby was

> > > going to have dwarfism? What about if the doctor recommended that

> > you abort

> > > it, solely on the dwarfism grounds and no other reason?

> > >

> > > Lastly, do you think we have the right to " genetically order our

> > children

> > > out of a catalog " (meaning pick their features- eye color, hair

> > color, skin

> > > tone, intelligence level, etc.)?

> > >

> > > Just wondering your thoughts...

> > >

> > >

> > >

> > >