UK Deaf Embryo Debate relating to recent bill in parliament

[R2D2]

The deaf people are more expensive because the hearing society made it so. The hearing parents demand hearing aids, CI and speech therapies. Someone said "it is a hearing world" and that is why this world is not conducive to the deaf people. Why is the social policy maker not working on that angle???? The proof is the Martha's Vineyard in the old days. The richest man at that time happened to be deaf. That island was really conducive to the deaf people there. No brainer!

However, this is a majority hearing society and will always be. Interpreters will always be needed simply because most hearing people don't know any deaf people or have any in their family. Not all of us want to or are able to live in a Marthas Vineyard enclave. Interpreters cost money to train up and provide to the deaf population. Deaf schools cost a lot more to run than standard mainstream schools. I don't find your argument that hearing people made it more expensive very convincing.

 

[R2D2]

Exactly! This is why I don't support implantation in children. The fact that their parents would be willing to risk EVERYTHING that comes with the fact that someone is sticking something -into their child-, a surgical procedure with all the risks of anesthesia, for a procedure they do not medically need.. is repulsive to me.

It is never a risk worth taking! If you're an adult and you want to drill holes anywhere in your body, by all means go ahead. But for the parent of a child who should be looking after their interests and doing everything possible to protect them from harm... that's just abuse, in my books.

One child dying from a procedure they are not old enough or capable of consenting to, nor in medical need of, isn't just a tragedy. It's murder.

It's a shame to read statements labelling parents who opt for a CI for their children as child abusers and murderers for what they feel is expanding the range of choices in life. I hope that not too many read this and are further put off from approaching the deaf community. You come across like you really hate them.

 

[R2D2]

In that case, I am sorry to say that the UK is on the way to eugenics and maybe even euthanasia, all just to save some pounds.

Sorry, but I don't agree that choosing not to transfer a 5 day embryo is the same as euthanasia. I do find that in many of your posts you make very extreme comparisons.

Also, a query - is a deliberate attempt to transfer only deaf embryos not euthanasia and/or eugenics in your view? What about the hearing embryos that are discarded in the process?

 

[Aleser]

is a deliberate attempt to transfer only deaf embryos not euthanasia and/or eugenics in your view? What about the hearing embryos that are discarded in the process?

Eugenics, as a practice, is the improvement of a breed (in this case, humans) by controlling reproduction. The law aims to erradicate deafness by reducing the amount of Deaf people who are born- essentially, the mask of 'responsible reproduction' to cover genocide.

If a Deaf couple decide to try and have a Deaf child, they are not attempting to undermine hearing people or prevent hearing people from reproducing- they just want a child who is like them, able to experience the same language and culture that they exist in.

If any couple decides to select a hearing child over a Deaf child, simply because they feel ill-equipt to have a Deaf child, that's just their personal choice (one I find tragic)

If a couple picks a hearing embyro over a Deaf embryo because the Law demands they do so, or because they do not want to bring more Deaf people into the world, that is eugenics.

 

[jillio]

Eugenics, as a practice, is the improvement of a breed (in this case, humans) by controlling reproduction. The law aims to erradicate deafness by reducing the amount of Deaf people who are born- essentially, the mask of 'responsible reproduction' to cover genocide.

If a Deaf couple decide to try and have a Deaf child, they are not attempting to undermine hearing people or prevent hearing people from reproducing- they just want a child who is like them, able to experience the same language and culture that they exist in.

If any couple decides to select a hearing child over a Deaf child, simply because they feel ill-equipt to have a Deaf child, that's just their personal choice (one I find tragic)

If a couple picks a hearing embyro over a Deaf embryo because the Law demands they do so, or because they do not want to bring more Deaf people into the world, that is eugenics.

Or, as it was termed by A.G. Bell, "the promotion of the well-born". better known as soft eugenics.

 

[R2D2]

Eugenics, as a practice, is the improvement of a breed (in this case, humans) by controlling reproduction. The law aims to erradicate deafness by reducing the amount of Deaf people who are born- essentially, the mask of 'responsible reproduction' to cover genocide.

In historical practice, that involved mass sterilisations and even murder. However, this is not what would occur under this proposed bill. Deaf people are not being prevented from having children or having deaf babies naturally.

If a Deaf couple decide to try and have a Deaf child, they are not attempting to undermine hearing people or prevent hearing people from reproducing- they just want a child who is like them, able to experience the same language and culture that they exist in.

If any couple decides to select a hearing child over a Deaf child, simply because they feel ill-equipt to have a Deaf child, that's just their personal choice (one I find tragic)

My personal belief is that both sets of parents should accept what they are given naturally. I also don't see why one case is okay whereas the other is "tragic". That seems a double standard to me. Also, the deaf couple is not guaranteed a deaf baby even if they get the genes right in the embryo. With my condition, there is only a 20% chance of deafness even if you have the gene. There are also other characteristics that are associated with my condition that are more rare but serious, such as missing limbs and mental retardation(!). Is it right to risk that just to get a deaf baby? If the deaf couple doesn't get the deaf baby they want then is this disappointment going to show itself in their parenting?

I was also interested to know if Buffalo felt that both cases were euthanasia for the embryos that were discarded.

If a couple picks a hearing embyro over a Deaf embryo because the Law demands they do so, or because they do not want to bring more Deaf people into the world, that is eugenics.

In your first example of a couple being made to pick a hearing embryo over a deaf embryo by law, this is not what is occuring with the proposed UK bill.

In the second example where they don't want to bring more deaf people into the world - well there is a perception that there are difficulties with being deaf such as greater mental health issues, difficulties with unemployment, loneliness etc etc. So from that follows the belief that it would be cruel to bring more people into the world to experience all that, particularly if the deaf genes also carried the risk of other disabilities as well. It's not dissimilar to your concern that deaf children might suffer under anaesthetic under CI surgery hence your belief that it shouldn't be done.

 

[jillio]

In historical practice, that involved mass sterilisations and even murder. However, this is not what would occur under this proposed bill. Deaf people are not being prevented from having children or having deaf babies naturally.



My personal belief is that both sets of parents should accept what they are given naturally. I also don't see why one case is okay whereas the other is "tragic". That seems a double standard to me. Also, the deaf couple is not guaranteed a deaf baby even if they get the genes right in the embryo. With my condition, there is only a 20% chance of deafness even if you have the gene. There are also other characteristics that are associated with my condition that are more rare but serious, such as missing limbs and mental retardation(!). Is it right to risk that just to get a deaf baby? If the deaf couple doesn't get the deaf baby they want then is this disappointment going to show itself in their parenting?

I was also interested to know if Buffalo felt that both cases were euthanasia for the embryos that were discarded.



In your first example of a couple being made to pick a hearing embryo over a deaf embryo by law, this is not what is occuring with the proposed UK bill.

In the second example where they don't want to bring more deaf people into the world - well there is a perception that there are difficulties with being deaf such as greater mental health issues, difficulties with unemployment, loneliness etc etc. So from that follows the belief that it would be cruel to bring more people into the world to experience all that, particularly if the deaf genes also carried the risk of other disabilities as well. It's not dissimilar to your concern that deaf children might suffer under anaesthetic under CI surgery hence your belief that it shouldn't be done.

But, even with that justification, doesn't this bill create just another attempt to change the individual in an attempt to correct that which is socially created and a function of the system?

 

[shel90]

However, this is a majority hearing society and will always be. Interpreters will always be needed simply because most hearing people don't know any deaf people or have any in their family. Not all of us want to or are able to live in a Marthas Vineyard enclave. Interpreters cost money to train up and provide to the deaf population. Deaf schools cost a lot more to run than standard mainstream schools. I don't find your argument that hearing people made it more expensive very convincing.

So where are the morals? Is it because of money? I didnt know that money came before people. (This is not directed at you but at your statement)

 

[Angel]

It's a shame to read statements labelling parents who opt for a CI for their children as child abusers and murderers for what they feel is expanding the range of choices in life. I hope that not too many read this and are further put off from approaching the deaf community. You come across like you really hate them.

I absolutely agree with you there, it is very sad to read that kind of statement. Cochlear implant is just another technology for deafness, and other deaf children who LOVES their implants because they can now talk and listening too, if they're happy with them, then I'm happy for them as well. I honestly hope that hearing parents will see that not all deaf people from the Deaf community are alike and don't think of it that way, I'm willing to open my arms and welcome anyone that comes to the Deaf community.

 

[R2D2]

So where are the morals? Is it because of money? I didnt know that money came before people. (This is not directed at you but at your statement)

Hi Shel,

Yes, in the UK, value for money is everything when it involves taxpayers' funds. Everything that implies some sort of burden on the state either in the short term or long term goes through this scrutiny. They look at cochlear implants and there is even debate as to whether infertile people should have access to IVF treatment, because it's argued to be a lifestyle thing rather than a lifethreatening disease even though infertile women experience severe emotional stress.

It's just a different cultural outlook. In some ways, I find the British system more moral than the US system because there is universal medical care for all in the areas that matter but in others ways I find it overbearing and not providing a lot of choices.

 

[R2D2]

But, even with that justification, doesn't this bill create just another attempt to change the individual in an attempt to correct that which is socially created and a function of the system?

Yes, that would be the view of most deaf people and those sympathetic such as yourself because we/you have seen what positive things we can achieve in our lives even when difficulties are experienced. However, when the majority think about being deaf, they think primarily of the physical difficulty above and over the socially constructed difficulty outweighing the positives. I was just making the point to Aleser that there is a range of subjective viewpoints about this and so an average hearing person would think that bringing more deaf people into the world over and above what would happen naturally is socially irresponsible.

 

[Buffalo]

Sorry, but I don't agree that choosing not to transfer a 5 day embryo is the same as euthanasia. I do find that in many of your posts you make very extreme comparisons.

Also, a query - is a deliberate attempt to transfer only deaf embryos not euthanasia and/or eugenics in your view? What about the hearing embryos that are discarded in the process?

You don't really understand me. I said "well on the way to eugenics and maybe euthanasia". You know the Chinese saying about a long journey start with a first step? This is a first step toward eugenics and maybe euthanasia just because they are obessed with the cost. They will allow hearing parents to screen out deaf embryos and that is understandable to me because hearing parents aren't really up to the task of raising a deaf child. However, when they are telling the deaf parents that they can't screen out all others except for those deaf embryos they really want, now that is overriding their desires. That is soft eugenics. It is not fair to make the deaf couple to live by different set of rules just because they're deaf. That is double standard. They are telling the deaf couples what to take even that is not what they want. Those deaf parents might not be up to raising a hearing child but they feel they can handle a deaf child....so why force a hearing child on them?

I can see the next step they will take to save further money.. by (I'm guessing in here) sterilizing all people with mental problems. Then later on, including all deaf people and blind people and even people in wheelchairs. Later on, it could graduate to euthanasia as keeping a person on life support can be very costly.... they could decide to save on money by pulling the plug. Maybe later on, they could give a patient a lethal amount of poison with the patient's permission. Later on, when not too many volunteer for it, they could drop the getting permission part (as in an Alzheimer's patient). It is all too easy to slide downhill once one starts on this path.

To answer your query, it is not what was screened out that is eugenics - it is overridding the parents' wishes that is eugenics.

 

[Buffalo]

However, this is a majority hearing society and will always be. Interpreters will always be needed simply because most hearing people don't know any deaf people or have any in their family. Not all of us want to or are able to live in a Marthas Vineyard enclave. Interpreters cost money to train up and provide to the deaf population. Deaf schools cost a lot more to run than standard mainstream schools. I don't find your argument that hearing people made it more expensive very convincing.

You didn't think it was convincing because you choose not to look at it like too many hearing people. I came across this link that spoke exactly what I felt. DeafDC Blog » Informed Decisions, Parents Know Best, and Other Mythical Creatures (III of III) Your eyes are closed..... so when are you opening them?

 

[Buffalo]

It's a shame to read statements labelling parents who opt for a CI for their children as child abusers and murderers for what they feel is expanding the range of choices in life. I hope that not too many read this and are further put off from approaching the deaf community. You come across like you really hate them.

Are you saying that the parents want us to give them permission to implant their kids and deny them ASL???? Where is the safety net and the child can and will suffered when the CI failed its job? Also if the CI child has died of meningitis, the parents saying "I tried to give the child every possible choices" sounds so sickening to me.

I am put off by the parents who had their child implanted and veto the sign language. This tells me that the parents really hate deaf people and want nothing to do with the deaf community and in turn, deny that their child is deaf because the child now can 'hear'.

In historical practice, that involved mass sterilisations and even murder. However, this is not what would occur under this proposed bill. Deaf people are not being prevented from having children or having deaf babies naturally.

Not now, no but it can slide down to that level years later. See my post #32.

My personal belief is that both sets of parents should accept what they are given naturally.

Why then they are attempting to turn a deaf child into a hearing child via CI and oral training? This is shouting to the world that they aren't really accepting the deaf child.

In the second example where they don't want to bring more deaf people into the world - well there is a perception that there are difficulties with being deaf such as greater mental health issues, difficulties with unemployment, loneliness etc etc. So from that follows the belief that it would be cruel to bring more people into the world to experience all that, particularly if the deaf genes also carried the risk of other disabilities as well. It's not dissimilar to your concern that deaf children might suffer under anaesthetic under CI surgery hence your belief that it shouldn't be done.

They made the world hostile to the deaf population in the first place so they shouldn't pin their own blame onto the deaf population. They are still trying to pin their own blame on the deaf people anyway. You forgot that 90% of the deaf were born to hearing parents. If you don't want to bring any more deaf people into this world, you gotta sterilized all the hearing people. Yes, I am being silly but do you see my point? Why forbid the deaf couple a deaf baby thru IVF when there are all that deaf babies being born to the hearing population. That deaf baby is just a small percent of a drop in a bucket.

If a social policy maker's goal is to save some money, then why go for CI in deaf kids and then provide for interpreter/CART for the classes. Just drop CI and provide only interpreter/CART or better yet, set up a school for the deaf that practices Bi-Bi Method. To me, the CI path is far more expensive than ASL path. Where was the social policy maker when the time is right to set ASL in first year classes (hearing/deaf)? It was not done because the social policy maker is very biased against the deaf people. That is why I think the Martha Vineyard example should be repeated all over the world.

 

[R2D2]

You didn't think it was convincing because you choose not to look at it like too many hearing people. I came across this link that spoke exactly what I felt. DeafDC Blog » Informed Decisions, Parents Know Best, and Other Mythical Creatures (III of III) Your eyes are closed..... so when are you opening them?

So you in contrast are open minded? What I see is a deaf person with a very deaf centric perspective. Most people have a perspective that is centric to their situation. An open minded person is someone that is able to see and consider the different arguments from the perspective of a range of situations.

 

[R2D2]

You don't really understand me. I said "well on the way to eugenics and maybe euthanasia". You know the Chinese saying about a long journey start with a first step? This is a first step toward eugenics and maybe euthanasia just because they are obessed with the cost. They will allow hearing parents to screen out deaf embryos and that is understandable to me because hearing parents aren't really up to the task of raising a deaf child. However, when they are telling the deaf parents that they can't screen out all others except for those deaf embryos they really want, now that is overriding their desires. That is soft eugenics. It is not fair to make the deaf couple to live by different set of rules just because they're deaf. That is double standard. They are telling the deaf couples what to take even that is not what they want. Those deaf parents might not be up to raising a hearing child but they feel they can handle a deaf child....so why force a hearing child on them?

I can see the next step they will take to save further money.. by (I'm guessing in here) sterilizing all people with mental problems. Then later on, including all deaf people and blind people and even people in wheelchairs. Later on, it could graduate to euthanasia as keeping a person on life support can be very costly.... they could decide to save on money by pulling the plug. Maybe later on, they could give a patient a lethal amount of poison with the patient's permission. Later on, when not too many volunteer for it, they could drop the getting permission part (as in an Alzheimer's patient). It is all too easy to slide downhill once one starts on this path.

To answer your query, it is not what was screened out that is eugenics - it is overridding the parents' wishes that is eugenics.

Okay thanks for answering my question. I was not deliberately trying to misunderstand you but wasn't sure where you were coming from - whether you were approaching it from a pro life perspective or deaf right to choose. It sounds like you have real fears that eventually, all deaf people will be euthanased.

 

[R2D2]

Are you saying that the parents want us to give them permission to implant their kids and deny them ASL???? Where is the safety net and the child can and will suffered when the CI failed its job?

No, I'm not saying that parents want you to give your permission. I'm saying that calling them "child abusers" and "murderers" is not helping their children nor does it help the deaf community. You also make it sound like the children are dying of meningitis in droves but actually it's relatively rare (although very publicised) and it's preventable. I can understand anger at a parent who doesn't vaccinate though.

Now, since you brought up meningitis what you do you think about the fact that meningitis incidence is at least 4 times more common with deaf children even without CIs compared to hearing children? Wouldn't this be a potential additional risky problem for children with those affected etiologies who are deliberately conceived as deaf through IVF? How do you feel about that?

I am put off by the parents who had their child implanted and veto the sign language. This tells me that the parents really hate deaf people and want nothing to do with the deaf community and in turn, deny that their child is deaf because the child now can 'hear'.

Why then they are attempting to turn a deaf child into a hearing child via CI and oral training? This is shouting to the world that they aren't really accepting the deaf child.

Well I think we are becoming a bit off topic here and we seem to have returned to a certain focus on the CI.

Why forbid the deaf couple a deaf baby thru IVF when there are all that deaf babies being born to the hearing population. That deaf baby is just a small percent of a drop in a bucket.

Well you've raised an interesting question here. How many deaf couples would actually use IVF procedures to deliberately have a deaf baby? I wonder if there has been several cases which then prompted the bill. I think this is a good point.

If a social policy maker's goal is to save some money, then why go for CI in deaf kids and then provide for interpreter/CART for the classes. Just drop CI and provide only interpreter/CART or better yet, set up a school for the deaf that practices Bi-Bi Method. To me, the CI path is far more expensive than ASL path.

I think it's pretty much accepted that the CI path is "cheaper" than the ASL path since most deaf children with CIs are mainstreamed, sometimes with little support. Anyway, the policy makers are comparing the cost of a deaf child (either ASL or oral) versus a hearing child that might have been born naturally. I seem to remember from reading a study somewhere that this extra cost is something in the area of an extra $1million dollars per child. But then if only 1 or 2 children are conceived this way through IVF then it's just a drop in a bucket as you say.

 

[Buffalo]

So you in contrast are open minded? What I see is a deaf person with a very deaf centric perspective. Most people have a perspective that is centric to their situation. An open minded person is someone that is able to see and consider the different arguments from the perspective of a range of situations.

Oh yes, I am very open minded. When I was twelve years old, I realized that I need to improve my speech because I will always be in the minority. I know that English is very vital. However, most hearing people have a very hearing centric perspective and they think they have the right to impose that on the deaf community. No way, they don't have that right. It is hard for me to look up to those kind of people. I tend to look down those kind of people. I guess the reason why I don't want CI is because I would feel that getting CI is like going down to their level. Yes, down to their level because I find them so immature and close-minded. Not all hearing people are like that - just that I wish there are more of those open-minded hearing people than there are.

I just came across this article: 'I hoped our baby would be deaf' | Society | The Guardian and I totally agree with Paula Garfield's comment "But these doctors, and many other people, generally know so little about the deaf community, culture and language, yet they assume they know what is right for us. They have a perception that deafness is a physical failing that needs to be corrected. For us, it's just a different and equally valid way of being".

That couple got a letter from the medical professionals saying that their deaf daughter is in an optimal home enviroment but they changed their tune when they learn that the couple doesn't want a hearing aid for their child. See what I mean about hearing people being so close-minded.

I recalled someone complained about deaf people and how insular they are. I would have to disagree with that person. I found hearing people to be very insular... if they aren't, then why did I have a hard time find a professional job. (I have a degree for that.) I once worked as a cashier in a food store long long time ago. Once people decided to use the other lane instead of mine. That line was very long and nobody came up to my lane. That was very very low of those hearing people. I prevailed and continue working for a year in that position. Excuse me for having a very dim view of hearing people (except for CODA and those who are very willing to learn sign language) in general but I do have a big big good reason for that.

 

[Buffalo]

Okay thanks for answering my question. I was not deliberately trying to misunderstand you but wasn't sure where you were coming from - whether you were approaching it from a pro life perspective or deaf right to choose. It sounds like you have real fears that eventually, all deaf people will be euthanased.

So you admitted that the idea of all deaf people (including you) will be euthanased is very possible? That included senior people who lost some or all of the hearing??

 

[Buffalo]

No, I'm not saying that parents want you to give your permission. I'm saying that calling them "child abusers" and "murderers" is not helping their children nor does it help the deaf community. You also make it sound like the children are dying of meningitis in droves but actually it's relatively rare (although very publicised) and it's preventable. I can understand anger at a parent who doesn't vaccinate though.

Now, since you brought up meningitis what you do you think about the fact that meningitis incidence is at least 4 times more common with deaf children even without CIs compared to hearing children? Wouldn't this be a potential additional risky problem for children with those affected etiologies who are deliberately conceived as deaf through IVF? How do you feel about that?



Well I think we are becoming a bit off topic here and we seem to have returned to a certain focus on the CI.




Well you've raised an interesting question here. How many deaf couples would actually use IVF procedures to deliberately have a deaf baby? I wonder if there has been several cases which then prompted the bill. I think this is a good point.



I think it's pretty much accepted that the CI path is "cheaper" than the ASL path since most deaf children with CIs are mainstreamed, sometimes with little support. Anyway, the policy makers are comparing the cost of a deaf child (either ASL or oral) versus a hearing child that might have been born naturally. I seem to remember from reading a study somewhere that this extra cost is something in the area of an extra $1million dollars per child. But then if only 1 or 2 children are conceived this way through IVF then it's just a drop in a bucket as you say.

Where did I say that sounds like I think the CI kids died in droves?? All I said is one death because of CI is too much. Meningitis is preventable??? I doubt that, especially after reading this: Meningitis quotes

Meningitis is more common in the deaf children??? I haven't seen a report where it clearly separated the hearing kids who became deaf due to meningitis and deaf kids who got meningitis after getting CI from all other deaf people. I suspect they lumped those two groups with all other deaf people. All I see about "meningitis is more common in deaf children" are the deaf kids with CI for example: Meningitis Risk With Cochlear Implants Just maybe they are padding it to make deaf people look bad and high-risk for any sickness so they have the 'ammunition' to prevent the deaf people from using IVF to get deaf babies or maybe even sterilization. I only know two persons who lost their hearing due to meningitis and one deaf possibly had meningitis (as far as I know she didn't end up in a hospital).

Not all deaf would use IVF to get a deaf baby. They could be like you as in what you had done - no PGD on the eggs. Have you thought of that?

CI cheaper than ASL path??? Let us see...

CI path:
The cost of implant
The cost it take to implant it.
The cost of reimplant if the first one fails
The cost of hospitalization due to meningitis
The cost of batteries and cord
Speech therapy - lots of it

ASL path (as long as parents doesn't force the child to wear HA):
Speech therapy if use hearing aid(s)
Batteries if use hearing aid(s)
Earmold(s) if use hearing aid(s)
School expense (for government) can be cut down if school is day school instead of resident school. Bi-Bi method should be used in those schools.

Looks like the ASL path is alot cheaper if the parents didn't forced the HAs on their kids and the public is very accepting of the deaf population (I am talking about hirings and promotions). Right now, parents do put HAs or CIs on their deaf kids and the public are not that accepting of the deaf population. I know that ASL path is far cheaper in the right condition. They created all that expenses and how dare they blame us for this.