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Parliament: Deaf Embryo selection to be made illegal

The Human Fertilisation and Embryology Bill is currently passing through parliament, and currently in its second reading in the House of Lords. A bill is proposed law that passes through parliament, to be debated (and amended) before it becomes law. i.e. an Act of Parliament.

Clause 14

This week debate touched on Clause 14 which states:

(9) Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop—

(a) a serious physical or mental disability,
(b) a serious illness, or
(c) any other serious medical condition,

must not be preferred to those that are not known to have such an abnormality.

That means you aren't allowed to select a deaf embryo, and this has been confirmed as parliament's intention through the passage of this Bill (and could be used for statutory interpretation later).

House of Lords debate

Baroness Deech (Crossbench)

In the scientific field, the Bill confirms the wider use of pre-implantation genetic diagnosis. That is good. I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf will be prevented by Clause 14.

This prevents selection of an embryo if it is known to be born deaf. It does not prohibit selection on the basis that a child will be born hearing, and prefers it. Since genetic testing will be common place in the UK in future, you are hardly going to be able to leave things to nature and 'wait and see', if a child is born deaf or hearing.

Huge Implications on deaf fertilisation

This could have huge implications for families where there is a genetic trait of deafness. Say e.g. you have a deaf gene in your family, and for whatever reason needed assisted fertilisation in order to get pregnant. If the embryos developed were known be deaf, a female would not be allowed to be made pregnant by a deaf embryo, and a hearing embryo must always be picked. This could also mean that deaf people are prohibited from partaking in assistance with fertilisation (donation of eggs, sperm). Do you agree with this?

Parallels of past historical oppression

To me this starts to enter eugenics and what Alexander Graham Bell was advocating. A lesser form of sterlisation of deaf people, what was practiced in Nazi Germany, to prevent deaf pro-creation.

Who is objecting to this, or speaking on our behalf?

What the hell is anyone doing about this proposed legislation? If it is ignored, by summer 2008 this will on the statute books and will be law. Who exactly is protecting deaf interest here, and statements by politicians that we are not equal? All those deaf organisations who make millions "on behalf of us" are doing what exactly? Sound asleep in a coma? Too hearing controlled or damn scared to say anything, through fear of upsetting their funders, and other chartiable philanthropists? Deaf voice and protection of interests is where exactly?

Sources:
They Work for You
Hansard

Further Reading:
The Origins Of Nazi Genocide: From Euthanasia to the Final Solution, Henry Friedlander (Essay)
Crying Hands: Eugenics and Deaf People in Nazi Germany, Horst Biesold
Missing: Children of Germany's Deaf People
Alexander Graham Bell - Wikipedia

Comments (51)

What is really annoying about this, BBC Parliament is currently airing the House of Lords debate on this subject. However, there's no subtitles / access! How is Deaf life supposed to be protected if we cannot access the democratic process, and in turn have a say in this?

Yes, I had raised this issue about access to BBC Parliament by writing to the BBC and I got a reply - sadly my computer had crashed and all data has been lost. It was a crap reply but that not surprising. Funding was one of the issue - who is paying for it? etc

I approached Emma Nicholson MP abut this and she too did not seem to quite understand how Parliament was so good at throwing stones in their own glass houses preaching the DDA when they cannot practice it within that building.

What buggered me – pardon the pun! At the last UKCOD event - invitation went to all MP’s at the Portcullis house and this was a good chance for us as UKCOD members to see and raise issues with them. That was very disappointing - hardly any of them come along including my MP!
An MP a very nice lady indeed and probably the only bloody MP in that event! She was from up north. I was trying to discuss this matter with her and she was showing me her hearing aids (not wearing it! “saying I know I have my battle of wills to hear what goes on in the chambers etc” I was so embarrassed to feel - If she not wearing the bloody hearing aids can she understand me cos she is no signer! She was not quite with it when I was trying to explain our need for empowerment to see/hear/read the events on the BBC parliament channel and why was this not subtitled? Could she flag this matter up? I guess she doesn’t want to know.

Having spoken to most MP their egos comes first and one has to flatter and lick their back side and quite frankly I am not the typo for doing that...
It is sad that the House of Common and the House of Lord have still not been able to master good practice in making their premises universally accessible for sensory needs. It is unfortunate that all deaf organisations have not been campaigning to get this addressed.I mean all and I feel they should and not just leave it to us.

I once attended a debate at the House of Lord and ah! Bless, Jack Ashley having the speech to text all to himself – that could have been relayed to everyone on the plasma screen they have in the visitors chamber and this was not the case. He doesn’t seem to be a great advocate in making sure we have access to Parliament? Does he?

I saw a deaf visitor in the audience struggling to follow the debate and sadly I was sitting in the Lords and Earls box (known as the VIP’s) – don’t tell me how I managed to get in that box! where the speech to text operator was doing the work and I was watching it from there. Mark you me, the comment some Lords and Ladies were making was from the very dark ages and out of tune with today’s languages and the going on etc – sometime I just want to bawl out laughing. Serious really they are a better bet that the Common trash our MP dole out in todays meetings.

Information is knowledge and knowledge is power = deaf people are still not getting this and I wondered if hearies want that to control us.

This is unacceptable. As someone who is particularly keen to have Deaf children, I do not like the thought that the ignorant bigwigs in Government are dictating whether or not I should be allowed to have Deaf children if I decided to select a Deaf embryo.

If the Government can't even provide subtitles/BSL interpretation for their debates, then why should I bow to their perceived wisdom and expertise (!)?

thank u for alerting the international Deaf community to this issue

what is the action plan?

petition?

rally?

how can Deaf folks in U.S. or other nations be of support?

letter writing campaign from foreign Deaf folks?

peace

pdurr

The UN Convention on the Prevention and Punishment of the Crime of Genocide states:

Article 2

In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:

(a) Killing members of the group;
(b) Causing serious bodily or mental harm to members of the group;
(c) Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part;
(d) Imposing measures intended to prevent births within the group;
(e) Forcibly transferring children of the group to another group.

Does it apply, and would the UK parliament be guilty of genocide?

Sounds like genocide to me! Let me know how can help when action decided, it's discusting when will they wake up and realise we're now in 2007 and these old fashioned views/discrimination are NO LONGER ACCEPTABLE....

While i agree that this is a terrible eugenics programme being put into place, the assertion that the definition of genocide is met would be predicated on deafness as an ethnicity (it's clearly not a nationality or race, and claiming it to be a religion entres a sticky area). I'm not confident that such an assertion would be accepted by any tribunal, although I could be mistaken.

As such, I feel that the better approach would be to avoid making the specious claim of 'genocide', which will most likely be dismissed as invalid (thus weakening any further case against it), and instead call it the heinous eugenics programme that it is, and attempt to have it halted on that basis.

If I am mistaken, and deafness has been classified as an ethnicity in its own right, then by all means, it meets the other characteristics of the definition of genocide.

As I am studying in Denmark, and this news just came to my attention the EUD Director. I was really appalled by this Embryo Bill. I totally agree with you all that no one is doing anything, we are asking the EUD for help! whereas we, British Deaf people must do something not to rely on others, deaf organisations as obviously Deaf associations are not strong enough to do something now. (The BDA is probably not going to do anything)

The proposal of the Bill is the first step, if this is passed then what is the next step they will propose? compulsory genetic testing on every pregnancy, eliminating all disabilities including DEAF!

Do you want this? NO! Act Now before this get too late.
Rally together and support for our future generations

Also as according the definition of Genocide, there is loophole which that the Embryos Bill can bypass it as technically the embryos is not alive (before fertilisation) so therefore it is not preventing of births, as it is not living.Preventing birth is more of physical and during the living stage.
What do you think? I hope I am wrong for the sake of future deaf unborn babies who are not given the chance to LIFE!

Interesting read and protests by our fellow deafies. With what I am going to say is going to embroil myself into controversy.

Unfortunately to say, I agree to the current bill being submitted in the UK parliament. Before anyone gets cranky and disperse this as utter rubbish, they should look at my reasoning.

Come to the fact that people with disabilities are such a burdensome bunch. In no respect I am saying they are a loathsome bunch but burdensome. They (disabled people) cost money, more so than able-bodied people, and impose unwanted responsibilities/stress on the able-bodied people by means of extra taxing, which in turn, is an invasion of their liberty. ‘Extra taxing’? By this I mean, interpreter access, DLA, redistributing their tax monies to disability organisations or needs, wheelchair access, blind access and so on.

Forget being deaf for once and think about being blind. Currently, there are blind people in this world who are genetically blind and have the potential to pass their blind genes onto their children. Admittedly and undeniably, in the deaf world, being blind is somewhat worse than being deaf. Anyway, being blind costs money, impose unwanted responsibilities/stress on the able-bodied people by means of extra tax, which in turn (again, same as above paragraph), an invasion of their liberty.

To top it off, disabled people’s liberty to pursue life are restricted. By this I mean, when comparing to an able-bodied person, an able-bodied person has unlimited potential and opportunities in life. A disabled person has limited potential and has restricted opportunities in life, despite the fact, that many fellow deafies deny this very matter. For instance, Francis Murphy, Chair of BDA, argues deaf people have good education, hold down good jobs and so on. But concludes, ‘One scholar likens this difference to having to choose between two buffet tables – one with 20 items and one with 23 items, rather than being a vegetarian at a buffet table laden with meat.’ This statement implies the choices a person has at the table and no choice. I conclude, disabled people do have choice/s in life, but disabled people do not have the same ‘unlimited potential and opportunities’ of that as their able-bodied counterparts.

Obviously, people with disabilities are here for a reason. What would be the reason? Only one valid reason that I can think of is to balance society by means of giving them something to do, create ideas and improvements in the medical and technology field. Without us, society would be progressing slower than usual.

Anyhow, years ago, I once engaged in an argument with my aunt and she could not understand why I want deaf children myself. But, she did made a valid point by stating, “I am being cruel for allowing a deaf child after myself by making the child experience the hardship I have endured”. I had no answer to her statement and I did not ‘morally care’ about her statement. When I look back at our argument, it seems obviously, my aunt won that debate, hands down, with that statement of hers.

I would approve the bill providing that embryo testing is fairly and scientifically proven rather than on the basis of assumption and perception. Like DNA testing, if there is 99% likeliness that the person did the crime, then it would be enough to place that person at the scene of crime. So, I want this type of scientific analysis to ensure that no deaf parents are wrongfully deprived of having a child. If the medical or science industry does not have this scientific technology, then the whole idea of passing the bill would be unreasonable and possibly unconstitutional.

In conclusion, it is better to give every embryo the ultimate chance at life that is unlimited potential and opportunities. It is no good and quite cruel to knowingly allow a disabled embryo to be born and experience the hardship that we all have endured and continue to endure in society. Further to this, it would be unreasonable of us to limit the opportunities in the disabled child’s life. So, embryos shall be given the ultimate chance at life and if anybody becomes disabled later in life, then that’s life. Therefore, I would approve of the bill, if and only if, the medical and science industry has the scientific technology similarly as that as DNA testing; otherwise, I protest the whole idea and it should be abolished until then.

Anyway, that’s my opinion and 2c worth.

I am very disappointed in Great Britain for its complete ignorance. An advanced country with indirect oppressive approach toward a group of people. It is definitely called genocide.

In fact, Deaf people are not medical dependents at all. They use different language such as BSL. Hearing and Deaf people use interpreting services. If British government and its health services attempt to remove deaf embryos, they will be charged for being genocide criminals that is no difference from awful crimes being done in Bonsia, Nazi Germany, and many other countries according to UN.

If it happens, I ll hold Great Britain accountability and I will make sure that Great Britain will not get away with murder!

Deafchip

First, I would like to let you know that this is a International Issue for Deaf people because this is very dangerous and it will lead to "LINGUISTICS GENOCIDE". After I read all of the messages, I am disappointed that the DEAF PHILOSPHER agreed because she said her aunt won the arguement. Well, first of all we are Deaf people who are able to do anything like hearing who are able. We didn't LABEL ourselves as a disabiltity but label ourselves DEAF. The society all over the world has CREATED BARRIERS against DEAF people and who are these people in the society? The society who CREATED barriers and DIS-ACCESSABILITY against Deaf people are these HEARING PEOPLE who doesn't respect deaf minority. We are linguistic minority because we have our own sign languages all over the world and also we have our own Deaf Cultures, Deaf Values, Deaf Traditions, Deaf Histories all over the WORLD! WE DEAF PEOPLE ARE HUMAN AND WE HAVE EVERY SAME RIGHTS AS HEARING PEOPLE. TREAT US EQUAL AND MAKE THIS WORLD ACCESSABILITY FOR DEAF PEOPLE.

LONG LIVE DEAF CULTURES AND INTERNATIONAL SIGN LANGUAGES

I am seeing the history being repeated here...Hilter ordered the sterilisation on Deaf people in 1930s before the start of Holocaust.

What we can do in UK? Is there any action being taken at the present? If there is any information out there please let us know so we can show our opposition to the passing of such a bill!

I GETTING LEARN FROM YOUR SIGN LANGAUGE FROM VEIDO AND I NOTICE LOTS OF DIFFERENT SIGN LANGAUGE AND I AM CATCH SOME OF SIGN LANGAUGE TRY TO UNDERSTAND TO YOU AND I READ INFORMATION AND I SUGGEST YOUR COUNTRIES NEED TO FIGHTS FOR DEAF RIGHTS AND FIND LIKE ADA LAWS TO STAND BE STRONG AND PAST OF LAW IS OLD AND EVERYONE NEED TO CHANGE THE NEW LAWS. DONT GIVE UP FIGHTS FOR IT YOUR RIGHTS LIKE OUR USA MADE NEW LAWS AND ADJUSTMENT DEAF LAWS LIKE ADA RIGHTS LAWS I WONDER ABOUT SAME AS YOUR NEED CHANGE NEW LAWS. I WISH I WOULD BE THERE FOR YOU AS BEING DEAF NAVY USA NO MATTER WHO AM I BEING HUMAN BUT YOUR SIGN LANGAUGE IS LOTS OF DIFFERENT SO FEED BACK ME MORE WITH CLOSED CAPTIONS BSLAND ASL SO I CAN GET KNOW MORE ABOUT YOUR COUNTRIES. SO I WOULD LOVE HELP YOUR COUNTRIES SAID HEY I AM USA HOW CAN I HELP YOU.

Deafphilosopher, we are people, we are human beings. We are not entertainment fodder, nor are we sounding boards for the fears of the hearing hordes. We are not issues to be pondered on, pitied, or fed crumbs from the banquet of life.

If we are burdensome, then lay the blame of burden at the feet of the society that refuses to deal with us as equal citizens. Lay the blame at the feet of a society that defines human beings as an economic unit. Lay the blame at a society that measures growth in consumption and material terms. Lay the blame at a society that has for years, pondered, wondered and arrived at the same stupid conclusion, "Duh!"

Nicely said, Tony N.

One thing Deaf Philosopher has forgotten in his damning conclusion that Deaf people who wish to have Deaf children are selfish for "allowing a deaf child ... experience the hardship [we] have endured”, is the fact that the deaf child will benefit from having parents who know and understand the barriers that Deaf people face in everyday life, insofar that they will be able to a) bring the child up with the confidence to deal with such obstacles; b) ensure the child is educated as appropriate; c) shield the child from discrimination, and fight their corner when it occurs; and d) ensure that the child is never left out of family conversations, to name but a few examples.

A Deaf child of Deaf parents will be given a start in life equal to, rather than inferior to, a hearing child of hearing parents.

A final point: let's get things into perspective here. What "hardship" have you endured as a result of being Deaf? Starvation? Poverty? Living in the streets? A life of violence and abuse? Personally, I think the "hardship" you are referring to is simply getting pissed off at the lack of access available for Deaf people. That's hardly a "hardship"; just something to expend our energies on and to have a moan about.

I for one wouldn't change a thing. Being Deaf is a pain sometimes, yes, but it is now such an integral part of my identity, I wouldn't want to give it up.

I don't particularly consider myself a part of any deaf community, besides the circle of friends I have from Mary Hare. This issue, however, and the response to it, both intrigue and irritate me enough (in equal measures) to qualify a response. I'll be thinking along the same lines as Deaf Philosopher.

First, I'd like to address some of the worse comments posted here so far.

deafchipmunk: "If it happens, I'll hold Great Britain accountability and I will make sure that Great Britain will not get away with murder!"

Murder is the ending of a life. Preventing children from being born is not murder. It's just the pre-emptive control of population. Eugenics, I suppose, although I'll question that later.

Tony Nicholas: "If we are burdensome, then lay the blame of burden at the feet of the society that refuses to deal with us as equal citizens."

I hardly think that should you form a subculture - I am of course referring to 'deafies' - you should be entirely subsistent. I'm all for cultural harmony. However, expecting a system to support you when you willingly alienate yourselves is a bit rich. Call yourself a victim and everyone will treat you as one - any mentality is self-perpetuating. Paranoia and self-vicimisation begets paranoia and self-victimisation.

Passing the buck to those that you perceive as discriminatory towards you seems to me to be an excuse to be indignant. In fact, it appears to be you that is discriminating towards those that you seem to think are prejudiced towards you (more of which in a moment). I have been discussing this topic with a friend who shares my point of view (and who, by the way, is not deaf) and he puts it this way:

"They are perverting Marxist views to suit their minorities discriminatory view of society."

Indeed, every minority has done that at one point or another. Historically, perceived prejudice has been observed to exist. See just about any representation of a black man in American cinema up until the 60s, and some after that too, not even including minstrel performers. Perhaps it would not have been obvious then, terms such as 'nigger' being the parlance of the times, but in retrospect are jarring and occasionally seriously questionable. The point is, it was a very real issue, and to this day still is in some areas of the world.

These areas, we can fairly guess, are generally populated by xenophobic, insular communities. By preventing the views of other cultures from occupying any of its members' thoughts - whether this is a subservience or subscription to a prevalent local ideology, or a physical barrier - their own beliefs are more deeply ingrained into their culture due to the lack of opposition. I won't discuss this in depth as that is a considerable tangent. Regardless, you can see the comparison I am about to make: that the deaf community, also, could be seen as a xenophobic, insular community.

(Be aware that I am not condemning it. I am merely presenting an alternative view. My mind isn't entirely made up on the issue of eugenics, which I will be discussing next.)

With a community comes, obviously, a sense of identity and a recognition of the people that share it. Interpersonally, this is a great thing. All communities are made up of smaller communities, and those of smaller communities, right down to the individual's circle of friends. However, the concept of globalisation (a process already in motion) is at odds with the pursuit of identity. Now the trait binding the deaf community - I suppose a general identity - is deafness (to varying degrees, but deafness nonetheless).

Many deaf people I know, consequently, see their deafness as a part of their identity. So, when they are unable to access a media (or even a medium) due to their deafness, they may see it as a personal affront. "Why isn't this show subtitled?" for instance. Well, look at it from the other side of the coin. You are a minority, a particularly vocal one, demanding preferential treatment in order to make what may be accessible to everyone else accessible to you. I agree, by the way, that this is necessary, as I don't believe anyone, disregarding their background, personality or disability, should be left behind. Nevertheless, you have to remember that you are only one community in a vast network. When you are not being handled with care by the whole, the best response is never to immediately start shouting "DISCRIMINATION", as a few of you have already done in these comments. Instead, think about how you can be heard presenting a coherent response. (I suppose shouting "DISCRIMINATION" is a fast-track to the attention of governing authority these days, with the Rainbow Sheep culture that those in charge have cultivated as a transparently blunt attempt to not tread on any toes. It's pretty cheap though.)

Back to the point, and to quickly recap, the deaf community's identity revolves around its members' deafness. When this identity is challenged, this challenge is (as I have said, fairly) risen to, as in any (sub)culture. However, to accuse every other community that surrounds yours of discrimination is short-sighted and often simply wrong. As I have already discussed, paranoia begets paranoia. This is where my earlier comparison of the deaf community to a xenophobic, insular community gains a little more ground as a possibility - especially as, being deaf, many members of the community are naturally insular, preferring the company of those that are also deaf to those that aren't. (Before someone erupts, I am fully aware that this is a vastly sweeping assumption. It is one, however, that I believe to be reasonably accurate. I am entirely willing to accept disagreement from other parties in response to this post.)

Your shared identity, which as a collective you are fixated on, is also the physical trait that makes it difficult for you to communicate with other collectives. (Another sweeping assumption; disagree freely.) Consequently, it seems, what may be perceived as discrimination - perceived being the key word here - may well not be, but is seen so as it is felt to be a personal matter as well as, or even instead of, a societal one. This is entirely my own observation from seven years in Mary Hare and minor involvement in other deaf activities, and this is an issue I have given a lot of thought to (and one of the reasons I tend to reject the deaf community). If you disagree, I'd like for your response to concern the deaf community as a whole, in the same manner as I have been discussing it. That being said, let's please not let the focal point of this post become lost.

Now to get to the point of the overall arc of my thoughts. Back to the idea of 'eugenics'. Here, it is much more difficult to make assumptions. However, we'll consider the implications of 'deaf embryo selection being made illegal' (to bastardise the post title).

Based on what I said above, the possible desire to perpetuate a community you love is an entirely reasonable one. I do think, however, that the personal aspect of the issue is far more important. It is also important to realise the implications of your choices.

Let's say a deaf same-sex couple wants to have a deaf child. (I'm sure there's already been a case of this, with a deaf lesbian couple. You'll know more about it than I do, though.) Assume this deaf couple could quite easily have a hearing child also. What are the motives for the child being deaf? I suppose one could be to create a bond between the parents and the child. Personally, I find this distasteful, but more on that in a minute. Let's first conbsider the implications of choosing for the child to be deaf.

One is that the child may never hear. They will then, without any choice, be forced to be a part of the deaf community. They may embrace the deaf community and maybe it'll all turn up roses, but that would hardly render my suggestion moot: that by choosing how you want your child to be, you are depriving them of choices. If the couple were to have a hearing child, the child would then have the choice of embracing the deaf community as they matured, as well as other communities outside of it.

Additionally, forcing deafness on the child could well lead to resentment later in life as they begin to understand what the couple had forced on him/her, regardless of their intentions. The child may have never known what it is like to hear, but that wouldn't necessarily stop such resentment building.

Rob Wilks: "A Deaf child of Deaf parents will be given a start in life equal to, rather than inferior to, a hearing child of hearing parents."

The way I see it, choosing how you want your child to be is akin to 'playing God'. Whatever trait you are controlling, you are effectively controlling your child's entire life. Consequently, I have to question anyone that wants to pick any trait for their child, because ultimately, whatever you want for your child, you are taking choices away from them and giving yourself more. It is an entirely self-serving practise and one I consider abhorrent. If this Parliament ruling is an infringement on your personal choice, your personal choice is an infringement on your child's freedom. (An exception applies for couples that genuinely cannot have children without fertility treatment or medical assistance. This is a much more complicated grey area, one I won't visit right now.)

Now far be it from me to suggest that your collective complaints about this possible ruling are hypocritical. I too strongly oppose the ruling as it is a total infringement on human rights. However, this is more than just a community issue. You are only one of many communities that may be affected by this. To call this 'eugenics', I feel, is overly self-interested. I will freely admit that I was skeptical of the issue before I started writing this post, so that may well be a factor that has swayed my opinion. However, if I may revisit a point I suggested earlier in this post: call yourself a victim, and everyone will treat you as one. A little more objectivity will go a long way to preventing this ruling being passed.

As far as I am concerned, Ruth Deech has previous. Her day job is as the Independent Adjudicator for Higher Education. My son had to ask them for a judgement on the way the University of Liverpool had treated him while he was suffering from an agressive cholesteatoma. Dame Ruth agreed with the University that it had met its duties under the Disability Discrimination Act to make reasonable adjustments by putting up posters! Dame Ruth also said, if memory serves, that many student complaints came about because parents believed that "Abigail was such a clever little girl". It is hard to imagine that many of us would live up to the levels of achievement and usefulness that some people would like to set as minimum criteria for membership of society. Perhaps, to them, only lawyers and membership of the House of Lords, qualifies. Oh, dread the world.

I've done some more reading up on the subject today and I'd like to retract the following from my previous post:

"I too strongly oppose the ruling as it is a total infringement on human rights."

May I point out that, apart from Clause 14, the sources given are incidental? The quote from Baroness Deech appears to be a throwaway suggestion. Also, in Clause 14 specifically, no definitions are given for a "serious" disability or illness. I've read on the deaf4life forum, posted by Philippa (who has given her input here also), the following:

"Now the UK parliament is putting a Bill through to propose to remove disability genes in embryos, Disability genes unfortunately includes Deaf gene (Connexion 26 gene)"

[From http://www.deaf4life.co.uk/forum/index.php?showtopic=10273]

While this sounds initially concerning, she does not provide anything to back up the relationship between this clause and the disability gene specified. If such evidence is presented, there still remains the vague definition in the clause. Is deafness classed as a "serious" disability? If so, what parliamentary documentation classes it as such?

Some of the views I've read online concerning this issue appear to be painfully limited, based on the lack of information I have. At the moment, the entire issue appears to revolve around a few statements and an assumption that deafness is a "serious" disability, none of which appear to be justified.

I am entirely prepared to be proven wrong as I may simply be missing valuable data. If this is the case, please do so. Otherwise, referring to my previous comment, on what basis do you oppose this bill? A reactionary mob mentality, a rise up to 'discrimination'?

Aneurin, just for clarify, refer back to the BDA letter...it is not the entire Bill that is being opposed at this stage (though some might do so) but that part of clause 14; i.e. section 4, number 9....which specifically states that the non-disabled embryo MUST be preferred (i.e. chosen) over the disabled one...it would become enshrined in law....we know embryo's can be tested for the connexin26 deaf gene already in the UK if couples so wish. The very fact that Deech uses the example of Deaf parents choosing deaf babies, and the explanatory notes (specifically no. 109) to the Bill that also make explicit reference to Deaf couples who might want a Deaf baby makes it quite clear that they have in mind deafness as a 'serious disability', even though it might not be explicit in that clause. It would make sense at this stage to simply request clarity but Deech herself has already provided it, and it can be used as a reference for lawyers, medical people, etc, in future.
Steve

This kind of ethical argument has been brewing for ages. Its only when a law is put forth when we realise the dire implications are right in front of us.
I am a NZer gallivating in London. The following information may be useful...

There are various stages where countries have adopted Genetic diagnosis for Pre-Implantation of embryos, each more restrictive than the former.

Professional Guidelines via a Voluntary Peer Review Process is in place for countries such as the USA, Australia and India.

Facilitative Legislation with delegation to a statutory body- in effect for the UK, Australia, Canada and New Zealand.

Restrictive Legislation- with Comprehensive legislation is nailed down in France, Slovenia and the Netherlands

Prohibitive legislation- banning procedures are in place for countries such as Italy, Germany, Austria, Switzerland and Ireland.

As far as I am aware, in New Zealand the prohibited activities are selecting on the basis of sex. E.g. if there is a disorder linked to the sex of the child then doctors can decide to abort if this affects the embryo. But for other circumstances its decided on a case by case basis. This is our best bet, manilpulating the law to allow it to happen on a case by case basis...but then again, it needs to be stronger than this.

In NZ, interim guidelines are being developed that would give doctors not parents the power to make this decision. This is abhorrable. However, the draft guidelines will not allow abortion if such a method would:

“Alter the genetic constitution of the embryo.” Eg change a Deaf embryo to a hearing embryo. This method has not been mastered yet, but technically it is so when one picks a healthy embryo over a one that is 'tainted' with the Deaf gene!!

The guidelines also say that one cannot manilpulate the embryo when parent has a genetic impairment and on the basis of social selection eg parents want a blond child. Additionally. the guidelines prohibit the selection of an embryo with a genetic impairment seen in a parent. E.g. when a Deaf parent wants a Deaf child.

More research needs to be done into the bill itself and its ethical arguments. A bill such as this certainly will have an ethical commission to weigh up the pros and cons of the proposed measures. It is essential that we make allies with the people involved in these parties even if we are worlds apart in our viewpoints....

From what i read in the bill, it said that the embryo is preferred that has no known abnormality? If i read that right, then there is a choice over embryo, and preferred would mean that if there were no embryo without the abnormalities this would be used?? im genuinelly asking?
before i start, my spelling is crap, as im dyslexic, so i can handle disagrement of my views and am open to discussion , but dont pull me up on my spelling as i dont give a fiddlers!
I think this is a case of the deaf community closing ranks and moving the goalpost of what is being discussed.
i agree this is a subject that has to be closely monitored, but totally disagree that its a deaf issue, it encompasses many areas. starting with when is life? is it sperm? embryo?conception? when baby can survive outside womb?
eugenics is a strong word,and i dont think that screaming this and discrimination will help at all, in fact the oposite, if people take to strong a stance their is no path for discussion. eugenics was based more on ethnicity and class in its infancy, also one of the last places to use it was in fact america.forced sterilisation amongs imigrants and poorer cut off white communities. wich was viewed as the most common demographic for lower lower i q's and disabilities, whats really frightening is the fact forced sterilization was used right up until the 50 s.
also as a hearing person that has been discriminated against, becouse i am hearing, ie, i could'nt go to a deaf community b.b.q because i was hearing. how can the deaf community say it wants to be equal, when it is in fact sometimes is very elitist! not wanting to intergrate but prefering its own community and no one from outside that community coming in?
i have many freinds who are deaf and liberal ,but i know a good few bigots that are deaf also, towards hearing, gays, etnicity, sex and other dissabilities.
also if being deaf is a culture not a disability? why so many of the community claiming disability benifits?
and if deaf people protecting the rights of all disabled, why havnt they give a shit for years about learning disabled and physically disabled people having children taken off them f? where was the protection of human rights in the 80 and 90 s when families were being ripped apart? yet as soon as the word deaf is used its goes into overdrive
and if as you say nature should take its course why can a deaf couple enginere a baby to be deaf and the rest of society cant do the reverse?
society coul never erradicate the deaf community anyway! unless they could eradicate all accidents and all illnesses witch can coase deafness!
so daft argument!

Oh definitely - this seriously need to be debated to the very end. The wordings in Clause 14 do touch on the sphere of eugenics, which is loosely defined as seeking betterment of the human race. Implications are not just confined to the Deaf people as it is a massive one. I read somewhere that this is now termed as techno-eugenics and it is less brutal method compared to eugenics in the past couple of hundreds of years or so. But it is still eugenics and need to be stopped or heavily regulated/controlled.

One commenter, deafchipmunk, described this as murder, much to the disdain of Aneurin. People do have views that any interference or prevention in the "potential of life" is abortion, which can also equates as murder. I am undecided what my view are with abortion and ethical issues that comes with it, although I do respect Deafchipmunk's own moral values.

I baulked when Aneurin implored that a deaf child may never hear and will have less choices compared to hearing child. Who is to say that the hearing child will have a richer life than a deaf child in a deaf family? Can you guarantee that? From what I have seen, deaf children from deaf families are just as confidence and successful with their lives, in their own terms, compared to the others. There are plenty of hearing childrens from hearing families who have limited choices or crappy futures and, what more, disability has nothing to do with it. It is shaky ground to narrow it down to being Deaf that will have detrimental effect on the quality of life when there are other factors to consider, such as economics, geography, family dynamics, privileged background etc etc coming to fore.

FYI, I am one of them (ex-Mary Hare) and some of my good friends are too from there. However, I used to think like you and I think I know where you are coming from. I feel it is quite cavalier to imply the deaf community, or any community whereas you are not an authority on, as xenophobic and insular. It is a broad sweeping statement but it is the one you ought to steer clear of, unless you have been involved for many years before you can draw judgement. What are you basing your judgement on? Deaf community is diverse, not unlike other communities, and xenophobia and insularity do show up in some quarters but not like what you like to imply, which is unfair.

By the way, the "Rainbow Sheep" is an urban myth.

After pondering over the amending Bill, I sensed it would be discriminating not to allow people with hereditary condition to have a child. In other words, the government can not deprive people from having children when they have hereditary condition. Therefore, it would be highly recommendable to add another clause that specifies about manipulating chromosomes to enable parent/s with hereditary condition to have children. Further, it would be the government’s responsibility to foot the bill because after all, they are the ones who are dictating the rules. If they do not foot the bill, then under the Rights of Persons with Disabilities, there is no stopping of the couple with hereditary condition to have a child. Of course, adopting a child is another way of countering the issue, but the majority of people prefer to have their own biological child, which is understandable.

This way, the situation is more balanced and I stand by my previous post despite people disagreeing with my opinion.

On another serious note, it would be better to argue for this recommendation to be included in the current amendments, in case if the deaf community’s plight for those clauses to be omitted - fails. Remember, the ministers of parliament are doing it on grounds of wide ranges of ‘abnormal chromosomes’ and they really want to give children the ultimate chance at life and to eliminate carriers of hereditary condition. It is unfortunate that deaf people with hereditary condition is and will be classified under those clauses and despite our plights that there is nothing wrong with being deaf, except for accessibility problems. There is not much more we can do when they pass the Bill on grounds of solving other serious disabilities or abnormalities and giving each child the ultimate chance at life. So, UK deafies, take up this recommendation if you can. Once the Bill has been approved with the recommendation, you can continue to protest if you feel it’s morally wrong – still.

The other solution but I do not recommend it, is to have a clause exempting deafness from those clauses. I seriously doubt the parliament will take on this recommendation because it goes back to my earlier post where I have argued that a child should have the ultimate chance at life.

If scientific technology can not manipulate chromosomes effectively, then those particular clauses should be put on hold until they can 100% successfully treat them. And this applies for everyone with hereditary condition because no one should be deprived of producing children when medical scientists can not manipulate chromosomes successfully. People with hereditary conditions (providing they are disabled) are protected under Article 23:1, B&C of the Rights of Persons with Disabilities and UK has signed it on 30th March 2007. But…for those who are not disabled, it seems, there is a loophole in the UN Declaration on Human Rights and the Rights of Persons with Disabilities does not apply to them (i.e. interpreters who carries hereditary deafness). Further, I do not know how that particular treaty (people with disabilities) would impact UK because Australia has signed just about every UN treaties and none of them are legally binding here! (Yeah I know pathetic)

Lastly, from my quick research on ‘manipulating chromosomes’ through the search engine, it seems the concept is in its early development and apparently, these clauses will have to be put on hold or omitted altogether! Hopefully, omitted altogether because I can not bear the thought of all the experimentation that medical scientists go through, but a high portion of people know they will do experimentation regardless.

This is all I can be of assistance for now and good luck.

People, go and watch the film GATTACA details here: http://en.wikipedia.org/wiki/Gattaca...... the theme is about this very issue. That's all I'm saying.

Tony B stated: ‘Who is to say that the hearing child will have a richer life than a deaf child in a deaf family? Can you guarantee that?’…‘there are plenty of hearing children from hearing families who have limited choices or crappy future and disability has nothing to do with it’.

Deaf people do have or face restrictions in life more so than their hearing counterparts. Let us look at the job sector, there are numerous of positions that deaf people are not allowed to do and others where they can not do it on grounds of their deafness. Examples of what jobs deaf people can not do; Army, Navy, Air force, Police Force, Fire Brigade, and so on. Despite the world’s advance in technology, deaf and disabled people are still restricted from performing certain jobs. Eventually, the deaf and disabled accept the restrictions in career choice when they come to realisation there is nothing they can do about those careers out of their reach.

Hearing people with crappy future and limited choice – chose – to be what they are. They, nevertheless, have unlimited potential and it is up to them to do something about it, compared with deaf people, there are limitations in the choices deaf people make. No matter how hard a deaf person tries, his effort can be in vain at times and it becomes a wasted effort but when a hearing person tries, it could be a wasted effort for some, which means the kind career they want weren’t meant to be for them. And for the remainder, they succeed at what they do. So, there you have it…the guarantee you were demanding and a hearing able-bodied child, in their own free will and determination, they have a richer life by means of freer choices than those who are deaf or disabled.

i may of come across a litttle wrong, i dont mean to come across that all deaf peopleare bigoted, as i really dont believe that at all, just that the deaf community is as bigoted as the rest of society no more no less,
i do have some experiance, my brother being excluded from both communities most of his life, hard of hearing and went to deaf school then mainstream, iv seen him being took the piss out of from both communities solely becouse of his hearing, i would say most of my younger life was relaying things to him, mostly in other areas where it was hard for him to lip read becouse of accents. iv learnt to sign up to level 3, i must admit im not very good and understand this so always ask people to slow down, but most people do becoase they know im a bit crap.my two year old can sign to her babysitter who is deaf and my ten month old just has a understanding with them.
i just think that the world is hard enough for anyone to purposely make some one deaf. i dont believe there should be barriers, and there should be no discrimination towards the deaf, but no other group either,
i also agree it is the parenting of most children that has the most effect on a child and i agree that some hearing children dont have a chance, i live on a council estate and beleive me i see some things and before anyone says anything im born and bread council estate and proud of it.

In response to Tony B:

"I feel it is quite cavalier to imply the deaf community, or any community whereas you are not an authority on, as xenophobic and insular. It is a broad sweeping statement but it is the one you ought to steer clear of, unless you have been involved for many years before you can draw judgement. What are you basing your judgement on?"

I base my judgement on the outspoken but seemingly - certainly in my view - ill-researched views expressed by quite a few deaf people here and elsewhere, and on the self-victimising attitude they express towards the bill. To me, at least, it appears that it's seen as a 'crusade' of some sort, a rallying against the oppressors. This is the response of an insular community.

I won't backtrack on what I wrote before. I do accept your differing viewpoint on the deaf community, and also accept that, as I have stated elsewhere, my opinion of the community may be limited by the experience I have of it - a fair comment. I still however maintain my view that this is very likely less of an issue than it is being claimed to be, and though I do not intrinsically support the bill, it is certainly not eugenical as has been claimed by others.

As for the "Rainbow Sheep", I was more referring to the nanny state than the myth itself. ;)

That is the flip side of the coin - term it as self-victimisation or us as bleating and whining away as you may. Some will perceive this as fighting for their liberty in a free society. When people feel oppressed, they will react like a springcoil and ensure they don't lose their liberty and when they do, someone is bound to perceive them as self-victimising themselves. It is a win/lose situation, the rough with the smooth. The nature of reactions so far have been a good mixture.

I have to agree on the nanny state thing. My position on that is it's good to show respect and sensitivity to other cultures and/or differences but there are some half-baked ideas out there.

Tony B: "That is the flip side of the coin - term it as self-victimisation or us as bleating and whining away as you may. Some will perceive this as fighting for their liberty in a free society. When people feel oppressed, they will react like a springcoil and ensure they don't lose their liberty and when they do, someone is bound to perceive them as self-victimising themselves."

Fair enough. I'll refrain from making any further comments on this topic, and focus on the bill.

After reading the comments, it seems to me that people are focused on the bill itself. The reason why I am against the bill because if it is being passed then it will pave the path for further bills that will threaten the future of deaf community here in the UK and on international level.

Let us imagine 50 years from now when the bill is in the full effect, the members of deaf community will be much smaller due to the bill. It will make the government/parliament easier to squash the deaf community or place more severe restrictions on deaf people and children. The worst scenario could be the deaf gene will be considered permissible to be removed which will lead to flexibility on the guidelines or restrictions on genetic researching or genetic selection for people who desire to have the perfect baby.

And if UK allows this bill to pass then other countries will follow UK's example to attempt and bring the bill to be passed!

The future of deaf community is at the danger of losing its place in the world!

I am horrified at learning about this information. People who are Deaf do not need to be "fixed". They are people just like everyone else. Are we trying to wipe out a culture? I certainly hope not. We need to spread the word about this because this goes against everything that we have been taught. To love one another no matter what a person looks like, or difficulties they may have. Would you want someone telling you you could not have a baby because they are hearing???? What is our world coming to? This is awful!!!!

To be honest, i don't see that anyone is doing anything to stand up for the Deaf view and this really annoys me.

One thing to say is that even if you iradicated the deaf gene, you can not actually erdicate deafness as such because deaf genes only account for abotu 50% of deafness. I knwo this doesn't cover the Deaf community in terms of would it die out etc but that is one thing to know.

Do i agree with the bill, no. not one bit. I'm not happy about it and although i'm not sure it could be classed as genocide, it comes pretty close for me.

Marching and trampling through the streets of London will be difficult to pull off. The BSL marches took tremendous amount of efforts and it seemed it had taken it toll on people who organised it. It seemed Deaf people want to be "heard" and express their concerns about this bills and the lack of legal rights in linguistic terms. Perhaps a sustained ripple effect is the way to go these days - just like how blogs gain notice and credibility. Start small, cultivate it and it will grows. Maybe we all start off by protesting at our local hospitals's maternity departments as the starting point. Perhaps that will get the appetite and the will going again.....

really, what is wrong with this world nowadays? we all are now capable of deciding the fate of our future children. all the embryos bullshit, what happened to the days where children were naturally born? we did this to ourselves. we created technology and, ironically, now the technology has manipulated our minds and created a chaos. if you really want the clause 14 to happen, then i have the assurance that we all will quickly become insensitive. because of this little and this that, the world is at war. hit yourselves with a brick, and look at us, especially the ones who came up with the bill!

re: somebody

I forgot who said this quote;

"the worst enemy of human beings are ourselves"

it is fitting to put this quote since we may be bringing our downfall through our efforts to create a better world but at what price? humans?

just my 2c

Eugenics is a very dangerous road to go down, it has been proved in the past, that such powers over people's lives had lead to abuse of authority, no one has the right to play God with people's lives, it has happened in Nazi Germany, most shockingly it occured in Sweden and Finland until the 1969 (Sweden) 1974 (Finland), I watched a film at Wolverhampton film festival 2007, about Deaf Finns being unable to marry unless they are strerilised, the Priests will not marry Deaf couples without a Doctor certificate confirming sterilisation, many were sterilised without their knowledge in Hospitals for minor and routine operations, I was genuinely shocked that a Civilised Nation would abuse its own Citizens like that.

Whatever the reasons behind this, Disablity is not a handicap in its own right, it is Society that creates that Handicap, many a brilliant minds and talents can be lost by aborting and destroying Deaf or Disabled Embryos, we would never have the likes of Charles Hawkings ( Cerebral Palsey) Scientist, Actor Lou Ferigno (Deaf) Incredible Hulk, Evelynn Glenne (Deaf) Purcussionist, Steve Wonder (Blind) Musician, Marleen Matlin (Deaf) US Actress, David Blunkett (Blind) MP, even Miss Great Britian is Deaf in one ear, many famous Hearing/Disabled People, actors and scientist had to deal with disablities of one kind or another, Diabetes, Blindness, Hearing Loss, Learning Diffculties, if they were destroyed before they were born, the World is the poorer for it.

also where do you stop once you start down that road, what if you are the wrong colour, Religion,Sex, this is already happening in India and China where female babies are destroyed in preference for males, for Cultural reasons, that is morally wrong, so is this proposed Legislation.

my brother going on the march, and although im proud he standing up for what he believes in , i hope to god the march doesnt work!
also how exactly does the desf community want the bill changed?
what are the actual figures for the amount of people genetically deaf?
how can you murder something that does,nt physically exsist as life?
and who is the absolute idiot that compared deaf genes to downs genes?. ok im not deaf and i dont know how hard it could be, but please dont compare it to what the families and people with downs go through!
gosh cant believe how riled this has got me
avril

I'm hearing but learning BSL and interested in Deaf issues. I've been reading about this bill and am certainly in sympathy with many of the Deaf view points - but there's one thing that's confusing me. The clause states that embryos with an abnormality are not to be PREFERRED TO those that do not have an abnormality, which suggests to me that there must be a choice to be made between deaf or hearing embryos, but the letter from the BDA and many other comments suggest that it would inhibit the selection of any deaf embryo, even if the only embryos to choose from are deaf (i.e. they're all deaf, there are no hearing ones to choose from). This seems to me to misinterpret what the clause actually says, or am I missing something? Sorry if this is ignorant of me! I would value your opinions.

Very interested in comment on this issue. Is there someone with an activist history who is hearing, ie can use a telephone, to discuss the issue for my Canadian disability radio show, "disRespect", which is an hour in length and airs Thursdays streaming live at http://cfmu.mcmaster.ca (podcast on www.radio4all.net).

We're campus and community radio, and while fully physically accessible, need to know how to accommodate someone who is deaf, as there are facilities on campus, we've just never done it before.

Your interview would be relatively empathetic and thirty to forty minutes in length, at our expense.

Geoff Langhorne

I've read around this issue as much as I can over the last couple of weeks and it is of course an extremely emotive and contentious one. But what I think people lost sight of is the fact that this would happen only if the parents chose to have their embryos screened - if they chose not to have their embryos screened then it is the luck of the draw whether or not a hearing or deaf couple who chose to have IVF have a deaf or hearing child. Please take note that I am NOT saying that I advocate this bill.

So for Anonymous to say that "50 years from now when the bill is in the full effect, the members of deaf community will be much smaller" is a little ludicrous. Remember that IVF births only account for 1% of all births in the UK, so I can't see how this would seriously lessen the number of deaf individuals in the UK.

Personally I am hearing I must admit that I cannot understand why a parent would want nothing short of everything for their child, including the ability to hear. However that has more to do with my views on parents being able to or actively wanting to choose specific characteristics for their child, and less to do with this actual bill. The bill leaves me feeling very uneasy indeed, but the thought of any couple wanting to 'design' their baby leaves me feeling positively sick - and that goes for everything, be it eye colour, height or deafness.

Deaf people aren't "forced" to have cochlear implants either, but we all know the reality of what really happens. There's so much money in the medical agenda it goes for the hard sell, and lets screen out. To state that there is no obligation, totally ignores history and is rather ignorant.

I must say I'm rather resentful of being called ignorant. I'm merely stating the facts as I've read them, and as I pointed out in my post I'm not advocating this bill. If you have views about what I've written then of course you're free to air them, and I can actually see where you are coming from, with the possible pressure that might be put on couples to have screening. But throwing accusations of ignorance around doesn't contribute in any helpful way to a healthy discussion.

You are misreading the Bill.

It does not prevent the selection of a deaf embryo either (a) where all the available embryos are deaf, or (b) at random.

this isn't right you shouldn't be allowed to take away a childs hearing just because you want to, what benefit is this to the child. embryo selection is used to better ones life not take make it worse. if the child wants to be deaf by all means let him shove a Q-tip deep into his ear.

@dj - please can you tell me who is advocating "you shouldn't be allowed to take away a childs hearing just because you want to".

I'm not.

please correct me if i'm wrong, but this is about people wanting to use embryo selection to make their children deaf.

Make their children deaf? The embryo is *already* deaf.

And this clause is about hearing selection, to pick hearing embryos only. There's no choice towards *already* deaf embryos since the law requires these to be discarded (where hearing embryos exist).

Note: hearing status is decided at conception, not manufactured by humans.

so this is about them discarding the deaf embry instead of keeping them?

In response to Alison's post of 25 Nov 07--
This law, like most eugenic legislation, obviously falls under Article 2, Section (d) of the UN Convention on the Prevention and Punishment of the Crime of Genocide. However, Article 2 defines the acts listed therein as genocide only if committed against "a national, ethnical, racial or religious group". In short, it doesn't count as genocide when they target 5th Worlders (Deaf, Disabled, or anyone else subject to social exclusion, political oppression or economic exploitation because of an actual or perceived congenital biological anomaly).

I feel this is the single most important issue facing those of us in the 5th World. If we want true equality in the societies that we live in, if we want real, meaningful civil rights legislation in our respective countries, if want to be respected as members of the human family, we need to organise on a global scale and lobby the UN to include us as a protected group under the Convention on Genocide. Until we are specifically protected from genocide under international law, all existing national disability legislation is meaningless. Until our oppression, exploitation and elimination are recognised and punished as crimes against humanity, all the rights our governments promise us only exist on paper.

If we are willing to fight for the right to bring children like ourselves into the world, shouldn't we be willing to fight for a world worth bringing them into?

In response to Alison's post of 25 Nov 07--
This law, like most eugenic legislation, obviously falls under Article 2, Section (d) of the UN Convention on the Prevention and Punishment of the Crime of Genocide. However, Article 2 defines the acts listed therein as genocide only if committed against "a national, ethnical, racial or religious group". In short, it doesn't count as genocide when they target 5th Worlders (Deaf, Disabled, or anyone else subject to social exclusion, political oppression or economic exploitation because of an actual or perceived congenital biological anomaly).

I feel this is the single most important issue facing those of us in the 5th World. If we want true equality in the societies that we live in, if we want real, meaningful civil rights legislation in our respective countries, if want to be respected as members of the human family, we need to organise on a global scale and lobby the UN to include us as a protected group under the Convention on Genocide. Until we are specifically protected from genocide under international law, all existing national disability legislation is meaningless. Until our oppression, exploitation and elimination are recognised and punished as crimes against humanity, all the rights our governments promise us only exist on paper.

If we are willing to fight for the right to bring children like ourselves into the world, shouldn't we be willing to fight for a world worth bringing them into?

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