This started with an interview on one of the BBC’s most popular news show, The Today Programme, and concerned a deaf couple who were trying to have a child using IVF. The husband argued that embryos which may become deaf should not be screened out. He wants all embryos to be treated equally because he doesn’t view being deaf as a disability. Do you?
The response to the interview was enormous. (To her credit WHYS producer Catherine heard it on Monday and argued we should talk about it. We decided not to as we felt IVF was a narrow subject area for an audience all around the world.)
Over the past two days, the debate has become as much about how deafness and blindness are viewed, as about the issue of IVF screening.
Are people who are blind or deaf members of a minority in society, and no more disabled than anyone else? Don’t we all have conditions (physical or psychological) of one type or another which restrict what we can do?
Is it right that embryos which are likely to be unable to hear or see can be screened out? Should we aspire to a world without blindness and deafness?
YOU CAN LISTEN TO THE INTERVIEW HERE.
You’ll need to scroll down to ‘0810 - The Right to be Deaf’.
UPDATE: You can listen to the programme in the usual way until Wednesday 19 March, but if you prefer to read a transcript, there’s one available on the Stop Eugenics web site.
By definition, a person who is blinded or loses their hearing is disabled. A person who has been blind or deaf from birth is not, however, since that is their normal condition and their other senses have developed to compensate. Screening should focus only on untreatable conditions that would prevent an embryo from reaching adulthood.
Well those women that stay with their men are courageoud and most are nastalgic, but the generation of women that stand by their men is a dying breed and will be extinct for sure with the new age and women being more indepebdent and more educated.
Denzel from buffalo Ny
Sent via BlackBerry
I listened to the interview on the BBC, and my opinion of the deaf person who was being interviewed, and maybe this is a comment on all of humanity, was the profound selfishness of his stance. He would choose to deny a child the chance to ever hear a symphony, listen to the sound of a waterfall, bird’s singing… for what reason? So that his child can be like him? So he wouldn’t feel disabled?
Not being able to hear is not a forward step in evolution. Its not a good thing. The people who are deaf and who live long and happy lives are a triumph of humanity. They should be looked at and regarded with respect for overcoming, and even turning into a strength at times, a terrible disability. But that doesn’t give them the right to inflict that condition upon anyone else.
Call me insensitive, but of course being deaf or blind is a disability.
People with these conditions lack the ability to see or hear, thus disability. I understand that some people are really into the “deaf culture” and whatnot, and also that the term “disabled” has some negative connotations associated with it, however avoiding the term seems to be avoiding the truth as these people lack abilities common to the vast majority of the population.
I think it is important to label being blind/deaf as a dissability, because it keeps the benefits regulated and gives notarity that people with these conditions need special services. Such as crosswalks with sound. Without the notarity of it being a dissability there may not be the push to make life managible.
In addition I think that at first diagnosis of someone with the on set of deafness or being blind one may feel it is a non desired dissability, however after one has grown accustomed to their life with one of these conditions, i’m quiet sure they would not want to be recognized as disabled, but quiet capable.
Once again we are telling parents what choices they may make for their children.
Where is it okay to draw the line in control of families?
How can one law possibly apply to all?
I feel there must be some old Confucian or Jewish Folk tale wisdom that can apply here. Perhaps that story where two mothers claimed the same child and the judge said, “cut the child in half and give half to each mother.” He then awarded the child to the mother who immediately offered her own life in return.
I bet those parents of the child who may or may not be deaf would give up their life for the child and that those with the power to make the decision about the embryos would not.
These parents are happy with their life and willing to share the joy and community. What a rare gift indeed considering all the messed up things perfectly abled (if there are any) parents do!
Hello Ros, I tried to take a backseat and hear to what WHYS today’s speakers will say but something has just haunted me to take part in this wide world global conversation.
Some matters needs us to be closemouthed but not the deaf or blind being a disability issue.
I personally do not consider deafness or blindness as a disability but the disability issue comes in because of our society when we view these people.
I have my personal friend SEKANI at K and M School of Accountancy in Lilongwe, Malawi, we sit side by side. He hears partially and doesn’t have any ear hearing gudgets that I see in many people. This guy hardly hears but he is a very fast learner. And he works with the office of the Auditor General in the Human Resources Dept.
Chawezi PHIRI
LILONGWE.
Thanks for your motion. In fact it is true the blind and the deaf persons should be included as special groups since they are treated as abnormal because they lack some of the sensory function of the body that is due to lack of sight. some ne may fail to perfome activities as one who is complete with eyes adn the the same is for deaf people. they suffer since they learn through gestures. how can you communicate for love affairs with those people?
Alfred
“Is being deaf or blind a disability?”
You’re kidding, right?
Hi Ros,
I believe being blind is not a disability. Two week ago I was on my way home, whilst waiting for a tram some woman approached me and started talking to me. It took me time to release that she was blind actually if she didnt tell that she was blind I would have not know this. Can imagine, it was 23:00 hrs she told me that she had come for chor services. He only asked me if she was on the right direction. I asked her she was heading to too. I asked myself how she managed to come over to the other side of the railway. Someone who is blind is also not disabled because he/she can use her can see and understand the environment.
Isaac
Yes, of course they are disabilities, the blind and the deaf can’t do what others can, we should love and help them.
NENGAK DANIEL
As a blind person I can say that I am not disabled, yes ther are some things I can not do, and I have some limitations that society has placed upon me because of it’s failure to consider me as ablind person in it’s technological inovations, but I am a contributing member of society. So is everyone else regardless of deafness or blindness. anyone who thinks this way is also a proponent of eugenics.
I agree with VictorK. Of course they are. Anyone who every had to work with or help any blind/deaf people know they have to do extra things for them. I think that should be the end of this discussion.
-Anthony, LA, CA.
if they believe a baby that is maldeformed should not be form in clarification of my last comment…
My “selfish” answer is absolutely not. I would not sacrifice my integrity to save my husband’s political career. His career and his marriage are both responsibilities he chose. If he cannot keep himself from sabotaging them with idiotic decisions, then he deserves to lose them. I think women who stand by their men when things like this happen are doing themselves and womankind a great disservice.
Stephanie Johanesen (again)
Portland, Oregon
My father is 82 and 98% blind from Glaucoma and cataracts diagnosed in his 60’s.
He has told me that if his fully intact mind could be uploaded to an android he would do it in a minute. Blindness and deafness are absolutely disabilities. Making the world a more pleasant place for the blind and the deaf makes it a more beautiful and friendly place for everyone.
We are indeed all “dis-abled” in some way. The paralyzed, blind, deaf or others significantly compromised in mind and body must be identified and loved as such, so that we all may become a little less dis-abled.
Being blind or deaf is a disability. From the biblical and societal points of view, they are disabilities. That is why society spends a lot to prevent them occuring.
Ben Assopiah
Tarkwa, Ghana
Yes, blindness and deafness are disabilities. To say they are not is similar to saying a person driving an automobile at night without headlights does not need to repair them, just adapt and require the traffic around him to adapt. The issue here is whether or not disabled people are fully human. Yes, they are, and as such the health and well being of their offspring should be their concern. Should they not have children at all if their disability is of genetic origin? That is for society as a whole to decide, since we all live in society and depend upon it for many things. Why any potential parents would deliberately have a disabled child if they didn’t have to is beyond me. Having lived as long as I have, I have a repository of experiences to call upon. One is a man who was a dwarf and all his siblings who had themselves sterilized in order to prevent their disability from being passed on. Those people were truly noble human beings. I wish that trait could be passed on.
This is exactly why the medical field needs to walk away from selective IVF methods. It takes away Natural or God factors and there will NEVER be an agreement on such practices due to religious and idealogical values. I’m on the fence about it, but would be VERY wary of the technologies and programs. “Gatica” is a fictional account/warning based on such technologies and though i haven’t seen it in a very long time, that is how I remember it.
Brett ~ Richmond, Va.
My Precious Aras : 1st of all to me being a disabled person isn’t a bad thing or a shame at all. So that couple really had nothing to be ashamed of at all. And the answer to your question is dependable upon many things and criteria including the nature and the traditions of the society the blind or the deaf live in. As for me, I wouldn’t call a blind or a deaf person a disabled person. May be I’ll call them ‘persons with special needs’. With my love. Yours forever, Lubna.
being deaf is a disability physicologically because one can not preformed his normal duties as required
and socially isolated.
Demayen Deng
Kongor Southern Sudan
Someone who is blind is also not disabled because he/she can use her can see and understand the environment.
Isaac
—
Then of course they should be allowed to drive because they aren’t disabled, right Isaac? I see blind people fall all the time trying to get around, why? Because they cannot see. That’s called being disabled, because most people can see.
In reading some of the comments that have come across the blog I find it interesting seeing some of the perspectives fromwhich these comments are made. The person in Iowa who said that allowing a child to be born with a disibility that would be dennied things like listening to a symphony for a deaf person, or seeing color to a blind person.
I am also hearing the blind people and deaf people should be pittied. This is an article published about me in my local newspaper
http://www.azcentral.com/arizonarepublic/business/articles/1007biz-phx-justin1008.html
Am I disabled? WHy should I be treated any different?
My friend is blind and he is able to do may things…I really thank God for him…but frankly speaking being blind or deaf is a big disability.
Ros,
Being deaf or blind is disability at it’s best.If they are not then disability has got a new definition which any one with an idea can let us know.
About a woman being on her husbands’ side,it depends on the profile of the husband,I don’t expect any lady to be behind a man thas has only negative image in the public.Keep your self respected and wanted by paparazzi then you support your high profile man.
I listened tho the entire program and here is my take on the questions posed.
Lets call this policy for what it is. EUGENICS.
The Baroness, is merely reflecting the elite plan to “weed out the herd” through eugenics, by implementing new social policies. Start with something acceptable make parents feel guilty, blame them for imposing on society and deny them their natural rights to privacy and autonomy over their own bodies and genetic material.
As the interviewer posed the question (I paraphrase) “Surely you don’t mean to say that you have the right to make this decision” , to him I say damn right we have the right and the Sate, any State does not have the right to impose any restrictions on my body or my progeny, regardless of its perceived social unacceptability.
This is really just political correctness over a word. Are blind and deaf people disabled? Of course, but the word doesn’t imply that you are less of a person. It’s just a word to describe that you have a disability. I have poor hearing in one of my ears, not remotely close to being deaf, but it is hard for me to hear. Years ago that ear would not stop ringing, so much that it affected my ability to concentrate and be in school. I would have said at that point I was somewhat disabled because it affected my abilities, similar to, but in a far less great way than being totally deaf, or blind.
My grandfather was blind, and let me tell you, that’s being disabled when you cannot see anything. He had a cane and a seeing eye dog. Why? Because he couldn’t see. He was disabled. He was still my grandfather though. It didn’t make me think any less of him. I didn’t even realize it until many years after he died (I was 5 when he died in 1980) but he never even knew what I looked like. I think even he would admit it’s a disability if you cannot even know what your grandchildren look like.
JK, did you listen to the interview? The only embryos that get weeded out are after the people submit themselves to the testing. Only then would embryos get weeded out. If they didn’t willingly to the test, it cannot happen. And the deaf man’s argument was that he didn’t view deafness as a disability, yet he needed a translator to communicate to him the words of the interviewer, and needed the translator to communicate his words to the the interviewer and the audience. That’s not a disability? Also, can he listen to the BBC? No he cannot. Let’s stop this political correctness and call something for what is is. Deafness IS a disability. Doesn’t mean deaf people are a lower form of life, any less worth of respect, any less decent people. but the fact is, they cannot hear, that’s a disability when most people can hear.
Let’s take a closer look to these type of arguments: “The embryo that would develop into a deaf child has as much right to be born as any of the other embryos.”
Or:
“I’m deaf and if my parents had screened embryos, I wouldn’t have been born”
Now, strange at it may seem, the validity of these type of arguments depends on the large scale structure of our universe. There are theories proposed by astrophysicists that imply an infinite universe, see e.g. here:
http://arxiv.org/abs/gr-qc/0102010
In such a “multiverse” setting, it is no longer correct to say that the deaf person would not have existed if his parents had opted not to have deaf children. The reason is that the deaf person would still be the same person if he had not that particular gene that made him deaf. Now, in the infinite multiverse, there exists a “non deaf” version of the same person (see the paper I linked to above).
This means that selecting against deafness has no influence whatsover on the probability of any child being born at all, except that the child has less chance of being born deaf.
It is difficult for those who can hear and see to judge what is a disability. I think we create “disability” by not integrating the disabled into society, rather we relegate them to an inferior status and manage their lives like a disease……disgraceful;
Screening embryos which is, I would be safe to assume, a procedure created and performed by men, should not be option…ever. Men always feel the need to tinker and some day, mother nature will compensate…look at global warming.
How is this even something we’re talking about? The descision should be up to the parents, plain and simple. The government has absolutely no place in telling parents what they can or cannot have in their child. If a parent WANTS a deaf child, or, heaven forbid, NATURE to proceed on a NORMAL course, the government should remain concerned with running the country, not the lives of individuals. Even the idea of this kind of legislation is an assult to personal liberty of the most egregious nature.
I know that others have said this, but, by the definition lacking a sense is a disability. That is to say that such a person is not able to do something (hear or see). However, I think that it is an important distinction between disabled and handicapped. I’ve known enough people with disabilities of many different types, including being deaf and blind, and most of these people are very clearly not handicapped in life. They certainly contribute to the world. So, getting beyond the issues of semantics, I feel that there is no reason to practice any kinds of eugenics against deaf and blind embryos.
It is appalling to me the misconception that is present in the listeners. The idea that this is an issue about choosing to create a deaf or blind child is absurd. This is about choosing to kill an embryo because you’ve found out that it is deaf or blind. This is a profound difference.
I think its absurd that we are trying to play god by enabling people to choose what their baby is going to be like. Being deaf is not a disability. Nature is not something that should be fooled with by humans.
This is an argument of semantics. Being deaf is a disability, following all reasonable logic.
Deaf people are inferior in the sense that they are disabled. It doesn’t mean they should be treated differently. It is sad that deaf people are twisting logic and reason to find acceptance. Unfortunately going to this “fundamentalist” extreme makes these particular deaf individuals seem foolish.
This is not diversity. The aburdness of this argument is utterly overwhelming. If you remove sickness does that also lessen society? People adapt, removing a hardship or disadvantage is not a negative.
If you prevent some people from not being born becuase of the way they will turn out you are entering a VERY slippery slope.
As I gay man, I wonder if my parents would have chosen not to have me would they have know that I was going to grow up homosexual as being gay can certainly make life more of a challange.
We are what we are and people who are outside the norm are what makes us such a fascinating spieces.
Daniel
San Francisco, CA
USA
Blindness and deafness are clearly disabilities. The question is whether or not whether these are conditions that should predicate a decision to terminate a pregnancy. The value to humanity of any one person is unknowable. Some in spite of or because of their disabilities do great things. The biologist James Watson once said, after referencing people like E. Hemingway, and V. van Gogh, that people with disabilities who make great contributions to culture/science ect in spite of or because of their disabilities, but must live in torment and difficulty their entire lives are ask to do something patiently unfair if their was a way to prevent these things.
What about the lt. governor David Patterson of NY? Now that Eliot Spitzer has resigned, NY state will have a legally blind acting governor. Obviously blindness isn’t an issue to the voters of NY state.
Is Stephen Hawking disabled?
Physically, yes - as we go by that norm. Intellectually, certainly not.
The problem that does arise is that people have to be put into a pigeon hole, maybe it is what we judge as normal or ability should change?
I think we should look at it more like - we all have different abilities.
This seems to be a semantic debate. People who are blind or deaf may feel a stigma attached to the label of disabled, I don’t see it at being disparaging. However the very fact that a deaf person needs a facilitator to communicate in this discussion is proof that they are disabled no matter what they see as their own identity.
when your guest say deaf is not a disability are they reciving disability pay
thanks
Sean
Good morning (here in Beaverton, Oregon),
What prevents the government from taking this law another step further and telling an individual who carries a certain trait that they cannot have child because they might pass on that trait to them?
If nature and evolution have developed humans that can see and hear, then these options must be considered advantages. Whilst I do not condone selective abortion, for humans to outguess creation is simply arrogance.
Douglas,
Canada
Of course embryos with any disability should be screened out!
Quite frankly it is selfishness on the part of deaf people that they would not want this. They must feel if there are no new deaf people it lessens them somehow, or will end their culture. To not want to put an end to a disability for your own personal esteem is selfish and egocentric.
–
Scott in Portland, OR
Aspire all you want, we will never end blindness or deafness as there are other ways of enduring these conditions besides birth. What about the survivors or war? Returning soldiers? And, accident victims. Diversity helps us connect with one another learning compassion and understanding.
And, to create a screening LAW that eliminates these conditions is an outrage? Where does the government get off sticking their noses in these very personal conundrums? Think of all the Helen Kellers of the world! What a waste of talent this would be. Challenges in life makes us stronger and discloses other God given gifts.
Linda
Of course deafness is a disability. Deaf people are unable to hear, lack of ability is, by the definition of the word, a disability. People deny they have disabilities because the word carries connotations of inferiority and inequality. People need to realize that having a disability neither makes a person inferior nor unequal to others without the disability. All people have their unique strengths and weaknesses, abilities and disabilities. But the sum of any one person’s strengths and weaknesses is the same as the sum of someone else with different strengths and weaknesses. The two people are equal.
William
Kansas, USA
What a sad waste of talents if the government makes a law that would screen out the deaf and hearing babies.All the Helen Keelers of the world would be lost forever. And, what about the other causes of deafness and blindness?
Being hard of hearing and having a son who is hard of hearing I have experienced both the deaf culture and hearing.
Evan though the deaf culture has become more open and integrated, I have never met a deaf or hard of hearing individual who would not chose to be able to hear.
Having said that, my hearing loss is part of who I am and definitely gives me a perspective that a hearing person may not have. People like Helen Keller and Bethoven would be lost in genetic screening.
Yes. Deafness and blindness are both disabilities. You are not able to hear, you are not able to see. Ergo: you are disabled.
While deaf people and blind people find incredible ways to cope with their condition and can lead long, happy and productive lives, I doubt that there is one person so afflicted anywhere in the world who would prefer their children to be deaf, blind or both rather than normal.
I think the Brit couple who do not want to screen out an embryo which is predisposed to deafness or blindness is respecting life as it is but I disagree with their position. Their children would be better off in this life if they are normal.
–
Rob
School Bus Driver Extraordinaire
Tomball ISD
There is no slippery slope about this Daniel. I am also gay and see nothing wrong with the idea of fixing the “gay” gene if there is one. Sure initially I felt revulsion to the idea, but then I realized my revulsion was coming from a place of ego and insecurity. Like it would lessen me as a person if there were no more people like me and that is simply selfish and narcissistic.
i would ask the deaf and blind members of the discussion:
what if your embryo were found to have the other disability? ie: if you are blind, what would you do if your embryo were deaf?
i’m just curious.
evi in portland, or
BBC World Have Your say,
Interesting subject, to me at least. I have lost 50% of my sight in the past year and I am in the process of applying for disability payments right now. I lost all my sight in my left eye on march 15 2008 within a 72 hour period,to an aggressive form of glaucoma. While I have partial sight I am so much slower at doing visual parts of tasks my chances at employment are near zero. I was a builder/remodeled and due to a fall from a roof that shattered my legs the state government was retraining me with computer skills but the vision loss has interrupted that. (By the way the fall may have been the cause for the vision loss)
Personally I feel it is a disability however it society would allow for the difference it should not be disability that need be aborted for rather why not find a way to correct the blindness in the fetus instead.
Thanks
John in Ohio
WCPN
If being blind is a disability, so is being short (you can’t reach the same shelf that a tall person can).
Yes, this is about semantics. However, we interpret reality through language and so the disabled are only made disabled by the linguistic reality we construct around them. “Different” is a much better and more moral word for this application than “disabled.”
A law like the one proposed that institutionalizes the pursuit of the perfect “able-bodied” child would prevent the likes of Ray Charles, Marlee Matlin or Beethoven from being born.
And it would also have no problem with the enforced sterilization of anyone deemed “inferior” if it were proposed.
Let’s talk about what’s really motivating this - ECONOMICS.
What happens to our species when we make everyone “perfect” and then the world changes. While I do not support suffering pain in particular I do not understand why we are so afraid of differences and different cultures. If nothing else the scientists ability to work with those who are different is providing us with ever better understanding of humans i.e. Oliver Saks.
As someone who has gone through fertility treatment I find this legislation very offensive. The goverment does not interfere with the off spring of people without fertility problems. Why should they be able to interfere with ours.
My husband and I tried to have children for 12 year before we were blessed with our first through fertility treatment. Our child was not deaf, however, if she were I would have welcomed her gladly and learned to help her intergrate into the world as best she could.
Ginger
Portland, OR
USA
my point being that, if they don’t consider themselves handicapped, and they rely heavily on the other senses they do have, how do they feel about loss of the other sense? isn’t that really the point they are making? that they aren’t disabled, but that others are?
i feel the deaf parents in the uk should be allowed to make their own choice and should be allowed to have a deaf baby.
evi
btw, rob, helen keller and bethoven went deaf later in life. they were not born deaf.
No Jeff deafness clearly isn’t the same thing as being tall versus short. Deaf people generally have ears, which don’t work. So something about them is disabled. I guess if we use this logic then people without arms and legs are not disabled either, they just can’t walk easily or play the piano as well as someone with limbs.
There will always be people who become blind or deaf through accident or disease. Deliberately producing blind or deaf people through fertility programs is not at all desirable. We have sight and hearing for a reason: they are useful for living!
As a seeing/hearing human, I cannot speak for those who are born blind or deaf. Not knowing any other way, I’m sure it is less a handicap for them than for people who once could see or hear.
However, for parents to deliberately choose to bear a child with such a disability - and it IS a disability - is not fair to the child or to society, which will have to make special provision for the care and education of such a child, however valuable that child’s potential (but unknown) contributions may be.
My mother had two dear friends, sisters, who chose to remain unmarried because their brothers had been born blind and they did not want to risk passing on the family’s blind trait to their children.
Too bad more people today do not share their selfless attitude!
As a musician, I value and take care of my hearing, and I know that it is a gift that would help me immeasurably should I become blind.
I recently was unable to use my eyes for a short time. I would be devastated if I should lose my sight.
One further point: several people have spoken about blindness and deafness contributing to the DIVERSITY of society. That is a ridiculous reason to deliberately choose to bear blind or deaf children. Sorry. I can’t fathom any way in which the lack of a sense improves a life or helps other people. We will always differ in our gifts and abilities. We don’t need people to lack basic survival senses in order for our society to be diverse.
Ella
Philomath, OR
Asking a deaf or blind person if they feel they are disabled is rather like asking a person without a sense of taste if they feel that food is bland to them;
The issues at hand are multiple -
1) a need to give respect to those whose senses are truncated - lacking a sense of sight, hearing, taste, touch, or smell - respect as members of society with full rights and access. Of course these people should have full rights and respect.
2) is lack of one or more of the five senses a disability equivalent to or as serious as perhaps a genetic deformity of heart valves or a gene causing cancer? We would most likely say no.
3) does anyone have the right to impose any genetic birth limitation or defect or difficulty or difference upon their prospective child? This is a serious matter, and depends in part on whether the genetic condition falls into the more serious life-threatening categories or is a less serious form such as a birthmark or baldness or crooked teeth.
4) is a lack of a sense, whether inborn or acquired, a disability at all? Of course it is. It is foolish to say otherwise.
But you see, one cannot expect all persons with that kind of condition to feel that they themselves have a “disability” when they live in a biased world that treats the disabled like pariahs and lesser individuals without equal value or rights to agency.
It isn’t necessarily possible to have a non-hearing person or non-sighted person make a fair decision about this sort of condition for another person.
The only reason we are talking about it at all is that people assume that as parents they have the power of God to create their children and mold or raise them any way they choose.
If we were asking this about introducing deafness or blindness to a hearing or sighted child by choice, nobody would question the fact that this would be a grave injustice, an abuse, and the cruel act of an unfeeling individual. Such acts are considered torture when practices upon prisoners.
I know that many deaf or blind persons declare that they are not “disabled”, but this is possibly a matter of semantics. Change the word and consider the results. Deafness isn’t lifethreatening unless you can’t hear the warning whistle of an oncoming train. Blindness isn’t lifethreatening unless you can’t see the oncoming car and step in front of it.
There ARE disadvantages, difficulties, and lacks associated with loss or absence of a sense; these conditions require accommodations and adjustment in order to function, most of which are only available in a wealthy and privileged society.
Many who had sight or hearing and lose that sense grieve the loss and are deeply wounded at the lack of this sense.
To wish this upon a child is monstrous.
To desire to offer any child the optimum chance at health and happiness is only just and compassionate.
To wish to give a child the fair option to not have a disability forced upon them without their ability to have consent is cruel.
I have persons of various “disabled” or difference in my family and friends; I myself have mobility impairment and asthma, both of which cause me great pain and at times produce a great hardship in my life. I survive, I adjust, I adapt. There is a large “community” (often a ghetto, more like) of others with similar conditions with whom I might find solidarity.
I would prefer to choose my associations based upon other interests, not on use of a cane or an inhaler.
that’s all I have to say.
Regarding Elliot Spitzer -
I think it’s entirely appropriate for the wife to be present when the husband confesses to the press - it’s an excellent time to serve him the subpoena.
I suggest a simple solution to genetic screening for deafness and stem cell discussions.
No more IVF or prenatal screening for abnormalities.
You get what you get if you can get it. Close the IVF clinics and stop looking for problems.
correction:
I meant to say:
“To desire to deny a child the optimum chance at health and happiness is only just and compassionate.
To wish to give a child the fair option to not have a disability forced upon them without their ability to have consent is cruel.”
Evi, Helen Keller was less than two years old when she became blind and deaf. That’s before the age you can even remember, so for all intents and purposes, she never knew sight and sound.
Hello All,
We here in the States currently have elected leaders who do not hear and refuse to see that which is directly before them. Thus, they are substantially more handicapped than any blind or deaf person. Sight and hearing are simply modes of communication. When they are lost, the individual does not lose the desire to, or the capability of communication. Of course, the mode of communication does and must change. It may not be easy to do; but overcoming these sensory handicaps is always much easier than helping those who suffer blindness or deafness through ignorance.
later,
g
Diversity is what makes us all unique. I guess you have to leave some desicions to the FREE WILL. If you start elminating kids based on there ablity to hear later i guess everyone would have similar looking kids.
These deaf people are stating they are just letting nature run its course - but they’re using in-vitro to give them the children that nature wouldn’t. Sound a little contradictory?
Passing laws for the destruction of deaf (etc.) embryos would not happen for moral reasons, by the way. Every deaf/blind/etc. person needs assistance at some point - generally more assistance than a “normal” person. Who pays for it? Governments suggesting such laws are obviously looking for ways to cut costs!
A person with a severe mental disability can be a great problem to their surrounding. Blindness and deafness can be of a lesser problem in a society that cares for every individual according to their needs. There are many blind people who proved great geniuses, especially in the world of are, especially music. Blind and deaf people can adapt to life well. They should be seen as people lacking one of the physical senses but people with sense. They have thee right to exist and not to be aborted when spotted to be so in their mothers’ wombs.
Deaf or blindness is for me a disability. Those who pretend it is not, imply that, as a society, we should not make any efforts to ease the live of those who are deaf or blind. Therefore, we should not have taxes used for that purpose in any of our public services. Is it what those guys really mean? I am convince that screening should be mandatory in case of IVF.
Cheers,
Eric (Netherlands)
While deafness or blindness are disabilities, trying to legislate against them is a slippery slope that could lead to Nazi-style eugenics. I’m very nearsighted — would embryonic screening be used to try to eliminate that from the population of the future?
If any such screening is done, the decision as to whether or not to implant the embryo should be left to the parents.
Surely the question isn’t whether we would choose deafness for our children, but whether if that eventuality could arise what should our response be. A perfect world is not one where the deaf are excluded or rejected, but one where they are accepted, understood and loved - regardless of how they came into this world or what their struggle is.
Robert and Lupe, Nausori Fiji
I’m blind myself. if a child is born blind or with any other disability we should accept it. God creates us which ever way He wants. we must not interfere in athat. there should always be disabled people in the world. thats ho God watns it to be, otherwise it would not be so.
Vienna, Austria
Hello All,
For those who believe in preventing blind or deaf children from being borne-you’re in good company- Hilter would have agreed with you.
later,
g
I think it’s one thing to attempt to prevent children from having genetic diseases, but legislating that decision crosses a line; especially when it’s for issues such as blindness. Legislating this choice in effect labels blindness as undesirable part of society. Do we want to actively practice eugenics in our efforts to reproduce?
It is a bit sad that a large portion of our world has gone from looking at a child as a blessing, no matter what, to looking at children as something we deserve and need to perfect. I am pregnant with my second child at 38. I have been asked to do screenings for disabilities. Blindness and deafness, while definately a disability, is not un-manageable. The only thing that might make my husband and I fearful is on that would cause our child physical pain. People need to remember that children are supposed to be a blessing.
I think it is important to also recognize who it is that is insisting that a physical disability is some kind of “diversity” to help maintain or create a “diverse” culture.
If you are already disabled yourself, perhaps you imagine that wanting to spare an unborn child being similarly disabled is some sort of judgment upon your own right to existence. This is a difficult philosophical conundrum.
I think if the genetic condition were that of cleft palate, or large bulbous growth covering half the face, or a missing limb, or uncontrollable obesity or giantism, or forms of dwarfism that entail serious mobility or respiratory or other impairments, perhaps this kind of “diversity” might be perceived from another perspective.
I think it is hubris in the extreme to insist, for the sake of political correctness or some assumed enlightened sensibility of tolerance, that people with a genetic condition that is generally seen as a disability or limitation be “permitted to be born”. This is the wrong attitude, the wrong approach.
If you could push a button at the moment of conception to choose for your future child a life with all their limbs, senses, and overall good health and wholeness, would you do so? Or would you choose rather to spin the wheel of fortune and let the chips fall where they may?
We are talking about genetic conditions that limit one’s access to or options in one’s life; just because you think it is socially “nice” to keep a “diverse” society that includes all kinds of people does NOT give you the right to gamble with the health or ability of an unborn child.
It is one thing to choose to keep a child who is already conceived regardless of a “disability” that you and your doctor think is relatively minor. It is quite another thing to choose such a child or refuse to rule such a disability out for a child.
If you were eight feet tall and still growing, a person with giantism, and you decided that you like having this condition even though it puts you at a disadvantage socially and makes access in the world very difficult or painful, do you have the right to impose this condition upon an unborn child? Technically medical interventions exist to make it less onerous or dangerous to have this sort of genetic condition, but that is not the point. Is it FAIR to impose it on anyone without their full knowledge and consent?
They are discovering genetic causes for many conditions that have troubled people for ages; obesity is next in line. Nobody would question that obesity, left untreated, could result in great disability, reduction of access in the world, and a distinct level of discrimination by the general public who ignorantly believe that it is the result of laziness or gluttony or some other slack attitude on the part of the obese person.
If you had the ability to rule out genetic causes of obesity in your prospective child, would you make that choice, or would you demand that your child have to take her/his chances and cope with this kind of disability and cruel social rejection and limitation?
Many children are born with terrible birthmarks that disfigure their faces, and even if the birthmark isn’t life threatening there is always the feeling of being different from others, being an outcast, having others withdraw from you or fear you, and not being selected as a spouse because of (reasonable) concern that your children would be likewise afflicted.
Is deafness not an affliction, just because there is sign language and a “deaf culture”? I say it is; in a hearing world there is a strong value and benefit and advantage in hearing, even if it is only the virtue of pleasure in the beauty of sounds. As with the sense of taste, one can survive without it and create a “culture” of others with similar limitation or “difference”, but that does not change the fact that it is a disability of sorts that puts one at a disadvantage in a world of hearing people.
You may pride yourself on being an independent deaf or blind person who can manage life very well and who does not miss what you never had in the first place. But that does not mean that you possess a full set of faculties or abilities compared to those who are hearing or sighted. If all other factors are equal, blindness or deafness are disadvantages in life.
I once had a therapist who was blind from birth; I am sighted, and live in a culture in which the majority of people are sighted, in which sight is valued, and in which the concept of value and worth in itself is often closely associated with the way something or someone “looks”, right or wrong.
My therapist, compassionate though she was, could not comprehend my anxiety and sense of discomfort associated with being stared at or judged unattractive by others due to my appearance and physical disability. She didn’t accept that this was a valid cause for me to feel unhappy or uncomfortable, she didn’t “see” how I had anything to be upset about.
This lack of her ability to relate to my experience, her inability to give me adequate counsel or moral support or validation due to being unable to empathize with my situation or experience, caused me to ultimately terminate our association, sadly.
If she had at any time been sighted or somehow learned to comprehend the nature of sight and the way a sighted and visually-oriented culture works, perhaps she might have been better able to empathize with my situation and offered me more support rather than mildly disregard and discount my feelings as unreasonable.
In her zeal to overcome her own difference, her blindness in a sighted world, she had developed an attitude of extreme optimism that posited that anyone can be happy, that no one can make another unhappy, that one can choose whether to feel insulted, offended, intimidated, or snubbed or not. She never had to experience being stared at, as she could not be sure if anyone was in fact staring at her. She lacked the capacity to feel oppressed by the visual judgment of others.
She imposed upon me an assumption that I should be likewise able to ignore (be unaware of) the cruel gaze of others, to just act as if it hadn’t happened. That is like asking a person with a sense of smell to ignore the stench of a skunk right under their nose all day long. It is ridiculous, to say the least.
Feeling judged as inadequate or worse by others was part of my daily life, because I am an obese person with arthritis and I walk with a cane. In the world where I live this draws looks from others. Unfortunately in a youth-oriented world, as on the college campus where I attend, my appearance and difference causes others to avoid me, to withdraw, and even to openly reject or deride and mock me. I go through this experience daily, every time I leave the house. Even if I don’t leave the house, I am witness to these hostile attitudes to those with differences such as mine through the media.
My blind therapist was wholly ignorant of this entire experience, of my justifiable reason for often feeling depressed or for having social anxiety and problems with self-esteem. In her opinion, I ought to be perfectly content to remain just as I am, to be able to not only ignore the verbal and non-verbal attacks of others but to not even notice them.
It was as if I were to blame for my own feelings of persecution when others were in fact persecuting me on a culture-wide level. She just could not “see” these realities, had never seen the magazine pictures or television programs or billboards, had never had to go through the torment of being unable to wear comfortable clothes, feeling unattractive. The whole notion of attractiveness or of visual beauty or a balanced image or form was alien to her. Everything and everyone “looked” the same to her, she didn’t get it at all.
I respect her right to her own perspective, so to speak, as far as it applies to her and her own life. But here she is, in the role of a counselor, giving “therapeutic advice” and “comfort” to others, yet she has a large gap in her knowledge, in her skill set. Her ability to be a therapist is 100% for another blind person, perhaps. But not for a sighted person like me.
I like her, I respect her achievements, I validate her right to live her life and have full access in the world to the degree it is possible. I don’t think it is fair that she was able to get to the advanced position in her career without any comprehension of what a sighted person’s experience or psychology might be like, as compared to her own blind experience of life.
My blind therapist did not believe she was disabled, per se, and refused to permit her physical/sense based difference from inhibiting her from taking on any challenge. But she was not only physically blind, she was intellectually blind and unable to emotionally sympathize with a problem that didn’t apply to her. She was unfit to offer therapy in my case, and could not see it, however often I pointed it out. I complained to her about her lack of compassion or empathy, and she brushed it off.
You can say what you want, but even if you don’t think your physical condition or difference is a disability, it still might be in terms of how you can or cannot interact with others, or achieve other important social or professional goals. Maybe you can make a living, cook your supper, walk down the street. But you can’t tell the difference between a person who is happy or unhappy just by wishful thinking, to be helpful to them you have to have more sensibility of their experience and empathize with them.
From my perception of the interview, the deaf person representing his views was saying he would choose a deaf child… how is that any better than choosing NOT to have a deaf child? I am completely against anyone having the right to choose to have a disabled child. If you don’t want to modify your child at all by selecting or not, that is completely fine by me. But no one should be able to choose to take away someone else’s ability to see or hear or whatever.
Toward the end of WHYS it seemed that the general consensious was to leave this all to parents, and i believe that is right. It is becuase of the governments involvement in the case that this issue is getting so much press.
Personally if my parents hadknown I would have been blind then the world would have been robed of what I have to offer, and the same could be said for any of us who post here today
There seems to be a conflation of the questions of deafness or blindless as a disability vs. destroying embryos because they would result in deaf or blind children.
Under certain circumstances, being deaf or blind disables a person from carrying on activities a person not deaf or blind could perform. When you think of disabled, if you limit it to that meaning, the stigma ought to detach, but I suppose it doesn’t, or the conversation wouldn’t be going on.
To make it personal, being 5′1.75′ tall disables me from playing professional basketball. There is much else I can and do in life, but not professional basketball. Would that disability was no more freighted than that as a descriptor, eh?
It is certainly true that deaf,dumb, blind people to name just a few, acquire certain powers of comprehension which able people do not have to the same level of acuteness. However, to deny that being any of these conditions is disabled is wrong because it would demotivate the search for cures to these conditions so that those affected by them could have the choice of being cured or not. That search is already appallingly under-resourced to a level which shames humanity. In my opinion, all disabled people are heroic. They confront problems every day which would break an able person yet they summon up powers that enable them to get by in many cases.They probably do not think themselves heroic and that is understandable. They still do not get the services, consideration or resources that they more than deserve. As for screening of embryos, that should be the choice of the parents and especially the women and should not be the result of any pseudo-medical diktat however cleverly disguised.
Having only my own experience of “disability” with one of my children,i feel i must add that even though i knew since birth that my baby was going to need more help or “special needs” it took me three years to actually admit if u like,that he DID infact have a disability!And when that day came,even though he’d had the help for three years,it was like a new life..i was heartbroken.I dont know for sure why i didnt acknowledge it sooner..i KNEW deep down he was..i guess i just hoped that he would be “fixable”.
Now,i have thought about this all night..if he had been via IVF..would i have changed him?I dont know is the truth.When pregnant with him i opted not to have the tests for abnormalities,yet i did with my eldest..i didnt have the downs test either.My partner and i made a decision that this baby would be loved NO MATTER what “what’s meant for me wont go by me” i thought.The thing is,what he has isnt a birth defect,its not genetic,it was actually as a result of a very traumatic delivery with horrific circumstances.If you asked me would i change that..there is no question!If i was asked if i considered being deaf or blind was a disabling condition i would have to say yes of course it is!I cant imagine life without either my eyes or ears and the thought of my kids without is worse!
I have great admiration for people that have these conditions either from birth or at another point in their lives..but as much as they show amazing independance and get on with life,i feel sure if they were given the choice they would have their sight or hearing ability restored..even if just through curiosity,though i believe this would be quite a scary experience for those that have had the condition from birth..the unkown can be quite intimidating!
I DO feel where the parents are coming form to an extent..they have led as good a life as anyone in their opinion..and thats great!But if having IVF,there is some degree of problem concieving..why wouldnt u want..not the “perfect specimen”..but as close to it a possible?I have a disabled child..it would break my heart if either of my kids went through the same thing when they are older.I wouldnt be ashamed if they said that same thing..i would understand fully!But if they did,i know they would love and care just as much for theirs as i have for mine.
Whatever happens,i do wish them,when the times comes,the very best of luck and hope that their little one is healthy,loved and happy.
Hi Ros,
From Scott in Las Vegas
Topic: Is being deaf or blind a disability?
The interview on the Today Programme was interesting. It seemed to me that the father in the interview was arguing that he should be able to select a deaf embryo as a positive choice. What about politically insistent parents who don’t want to screen out ALS embryos or embryos with a predisposition to quadriplegia? Should their mere insistence that a condition is not disabling count? As a social worker, I meet many people who have lost their sight or hearing. I’ve not encountered any of them that thought the condition was less than disabling. For those who are born deaf or sightless, I suppose the condition is simply what it is. I don’t view people with these conditions as lesser human beings. However, being politically militant about the “right” to be blind or deaf just seems to be a totally fringe argument.
One point:
Don’t forget that the milennia that mankind has spent dealing with adversity can be wiped out along with the
eradication of disability, but then what do we do if nature decides to reintroduce them, be it in the near future, or hundreds of
years from now?
I’m 22, I study history and english at the university of vienna and im blind.
yes, of course blidness is a disability. but, so what? I feel ok about it. I may not be able to see things, but the Light of God is with me.
we should admit that being blind is a disability, but what does it matter? we are not poor. we merely perceive the world somewhat differently.
Is it at all ironic that we are debating deafness on the radio?
To people who say that blindness is not a disability, should blind people be allowed to drive? While hearing is not as vital is sight, and deaf people are allowed to drive, my parents knew a deaf person who was killed in an auto accident because she couldn’t hear the honking horn of a truck that apparently malfunctioned and ran a red light, whereas a person with hearing likely would have heard it and reacted, whereas she didn’t have a chance because she didn’t realize it was happening.
I agree that these people aren’t talking about creating a disabled child, as it already is, I have heard some people actually seeking out to engineer children with the same disabilities as their parents.
Whatever the PC term for midgets these days is, I’ve heard discussions in the news about them deliberately trying to have midget children. I’ve heard of blind parents deliberately wanting blind children. I think that would be child abuse.
Steve
USA
Its unfortunate that even today one can be discriminated by being disable. I have two cousins who are deaf,they can neither speak nor hear,but this is not a reason for discrimination. We should expect uniquenes in creation and there is need to accept it. In general,the blind and deaf should be equally treated.
Elasto in Kenya
My niece is deaf, and while she has some challenges growing up, I would not consider her disabled. She is very able in her own way. Besides, who doesn’t have challenges while growing up, or as an adult? I see no reason to dispose of an embryo with a deafness gene.
However, I do think these are very difficult issues. What decision should we make if the embryo was profoundly retarded, or have cerebral palsey, etc? I guess it should all come down to how much the child might suffer, or how much his or her quality of life might be affected. But who is to determine the acceptable level of suffering?
Cary in Dallas, USA
Freedom is erased by a thousand cuts, each one representing a legitimate concern. It is foolish to think we should allow blindness and deafness if we could eradicate such impediments. But where do we stop? Where do we stop screening to avoid the pursuit of a Master Race? In the African American community, shades of blackness are an issue; Are you really black if your skin is cafe au lait? In the days of Eugenics, shades of white were in question; olive skinned
Irish and Italians weren’t quite white enough, at least in America.
Do we screen for pigment? Where do we stop? Just looking at our physical world, where property values are so high and neutral colors predominate as everyone tries to protect their property values, one can imagine a world without physical defect, a land of pretty people, all very similar in appearance, but would that world be at all interesting? And if we can screen for physical disability, what about behavior? Of course we would want well behaved people, naturally docile, pleasant, agreeable. What would that do for our liberty? Our wages? Our lives?
Paul in San Francisco, USA
Deaf or blindness is for me a disability. Those who pretend it is not, imply that, as a society, we should not make any efforts to ease the live of those who are deaf or blind. Therefore, we should not have taxes used for that purpose in any of our public services. Is it what those guys really mean? I am convince that screening should be mandatory in case of IVF.
Eric in Netherlands
I realize that I am commenting on a subject that has long past.
And, I realize that no one will see it unless the search for my name.
But, I found it interested and decided to weigh in, anyway: just in case, someone like me has searched for such back issues to read because they are interested in the subject.
@Viola,
I don’t consider the people in your example “noble.”
Of course, blindness and deafness is a disability.
But, I think that we are blurring two issues.
Yes, it is a disability.
But, is the quality of life such that you would rather not have children, than to have a disabled one?
And, should you choose between disables and nondisabled?
I think:
1. our lives as disabled people are certainly a bit different than our able-bodied counterparts. There are acommodations that should be made and there are still things that we have a hard time performing.
But, my life is a happy one. I don’t see my disability as this horrid thing that always inhibits me. My eye condition is not passed through genes, but if it was, I would not hesitate to have children. This is because, I believe that despite my disability, I have a good life and so could my child. I am not damning them to a world of darkness and isolation. And, when they do feel isolated, it is usually due to the ignorance and fear of others.
2. I would never even check to see which embryos were blind and which were not. That is not important to me. Yes, I do know blind people who choose not to have children because they are afraid of passing their blindness to the child. I think that this says something about the way they view their life. They see blindness, not only as a disability, but as a horrible stain on their existance. Come on, not having children because you are afraid that they might be disabled in some kind of way is not “selfless,” it is “selfish.” It is actually saying: “I can’t handle my child being imperfect.”
The predilection for a perfect child: choosing genes like we select the condiments on our burger is just strange, in itself.
this couple is not refusing an operation for their deaf child.
They are saying that it really does not matter if their child is deaf or not.
they, of all people, can teach their child to prosper despite their disability.
And, they should have the right to do so.
@Evi,
I would help my child adapt.
No, I would not even screen for it, so I would not know until after birth.