Clause 14 – from the other side

21 02 2008

A lot of debate has been going on about Clause 14. An awful lot of debate about a deaf person’s right to choose to have a deaf or hearing child. Have your eyes glazed over yet? They won’t after reading this.

To summarise, Clause 14 says that people who have inherited conditions (disability, illness or serious medical condition) –

  • will NOT BE ALLOWED to be egg or sperm donors
  • CANNOT use embryos that have inherited conditions (leading to deaf or disabled babies)
  • What does this mean? It means that –

  • freedom of choice is limited (reminds you of Hitler, perhaps?)
  • it’s possible that less deaf and disabled babies will be born as a result (this smacks of eugenics)
  • but most chillingly, attitudes towards disability and deafness will change for the worse (dragging us back hundreds of years)
  • You can show your support to stop Clause 14 from becoming law by writing to your local MP. A copy of a letter you may want to use can be found HERE.

    But what people may have forgotten about is the other side to all of this.

    The human side.

    Just imagine if Clause 14 was made law. What about the person that is born disabled then? Just close your eyes for a second. You’re human with human emotions, and have the power to reason, just like everyone else. You happen to have a part of your body that doesn’t work. Let’s say, you have Down’s Syndrome. You know you have Down’s. Heck, that’s ok isn’t it? The problem is other people’s attitudes. Now, imagine ….. one day, you find out about Clause 14, and you suddenly realise, that perhaps your parents didn’t or don’t want you. Other people don’t want you around. Just because you have Down’s. When all along, you thought you were loved. Wouldn’t your world just cave in?

    Read Dave Hingsburger’s full story here.

    I remember having this horrible gnawing feeling of exclusion at school. I went to a hearing school. People would stare at me as if I had two heads. Just because they had been told I’m deaf. I clearly remember a group of first years walking past me in the corridor one day. I knew one of them, as her older sister was in my class. She had obviously told the rest of her class that I’m deaf, for they all turned and stood there staring at me as if I was a green alien beamed down from Mars. At meal times, no one would let me sit at their table, if there were few spaces left – the caterers regularly set a few tables less at the weekends as a lot of boarders went home, so you had to hunt for a place to sit. I had to beg to sit somewhere. Just because I couldn’t hear them and join in. At Physical Education, no one wanted me on their team and I was always the last one picked. Just because I couldn’t join in their banter. I had to put up with this kind of crap for five years. It scars you. It burns you to the core. I still deal with crap like this today, but thankfully I don’t have to live with the people concerned, I can walk away from them. They can’t.

    Now imagine …. if your parents and family felt like this. That you’re somehow ‘wrong’ and shouldn’t be here. Your fellow students. Your work colleagues. Your social contacts. Anyone you came into contact with.

    It doesn’t bear thinking about. It’s Hitler all over again. And this is why we must stop Clause 14.

    In my opinion, ‘disability’ is a politically incorrect term – wouldn’t a better one be ‘having different abilities’? And what’s ‘wrong’ with being different, anyway?

    Until you have experienced exclusion through no fault of your own and walked a mile in those shoes, you can’t imagine how horrible it is to be on the receiving end of it.

    Please write to your MP today and help to stop this crap.

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    4 responses

    22 02 2008
    Dianrez

    This is well said. Exclusion by disability can cascade to all people from a few legislators and their poor attitudes. It has happened with other groups: foreigners, people of color, smokers, people under the age of 21 or over 70, and any person that might be different from the majority. Once legislation is passed that limits the freedom of certain people, those people become socially targeted in more ways than one.

    22 02 2008
    MM

    NOT according to the SEE HEAR program is there any coercion to ban deaf genes being passed on via the IVF ! Indeed SEE HEAR claimed deaf people on IVF (None have been seen as yet), would NOT be prevented from having a deaf baby, so what is the fuss about, the fact they will suggest a ban on HEARING IVF patients having a deaf baby, how many would choose one anyway ? and haven’t potential parents the right to KNOW if an ‘issue’ (Be it deafness or any other issue), can be removed if they so wish ?

    There’s deaf rights and there is of course hearing ones too. Deaf people have already circumvented this in America by deliberately seeking out deaf sperm providers, that won’t change, but it did trigger the current suggested legislation. IVF is a state provision in many cases in the UK, as such they are then liable in law if things go wrong, or, a decision is made that a parent will have to pay for. If a hearing parent doesn’t want a deaf child, surely, if the means are available to identify this aspect, then the right is theirs ?

    As the NHS would be sued by a parent and the IVF is free, it seems more a case the NHS is covering the legal aspect in case a hearing parents uses them for giving them a deaf child they don’t want, or don’t want to be responsible for. Deaf IVF patients are unaffected. Those who PAY for IVF will want a child with as few issues as possible, and they won’t via patient confidentiality tellus anything. IN America this has been done for YEARS, here too, the fuss is about somethingthat has been the norm for along time. Before it was plain abortion, now, the removal of the gene.

    23 02 2008
    Smarty

    MM – deaf couples will still be able to have deaf babies through IVF but they won’t be able to CHOOSE to have one. Whether they should have that right or not, is what we are debating right now.

    There is still an element of ‘abortion’ when using IVF treatment this way – we are not removing genes as you put it but instead discarding embryos that are considered ‘faulty’ before implanting them into the mother.

    23 02 2008
    MM

    IVF screening has ALWAYS taken place, only the fittest sperm and eggs survive. As the deaf will NOT be deprived of a deaf baby then their choice is unaffected, the campaign is waged via deliberate DIS-information from hard core deaf activists.

    Not every deaf person carries a deaf gene, indeed most comes via hearing, hence the ‘faulty’ label, what are ears for ? even deaf have them ! 9 out of 10 parents of deaf are hearing. It is NOT about deaf parents choice, but about hearing parents choices, and they are saying nothing, I would speculate personally 9 out of 10 would not prefer a deaf child, I may be wrong. WHY they so choose is conventional with the deaf, but they don’t really KNOW. I think it is basically you want the least issues to face your child as possible, you want the best outcome for them, and whether it is deafness, blindness, MS, mental illness, or cancers, you don’t want these in your child IF a choice exists you can prevent that, why would you ? To toe some cultural line ?

    If you KEEP deaf genes, and they start removing others, then it is saying deafness is better than other disablements and worth preserving. It’s a minefield. By putting down legislation it takes the dilemma away, governments are to lead not follow. It’s deaf genes today, tomorrow MS or cancer…. No-one would complain if the cancer gene is removed, or aspects that render people confined to wheelchairs or bedridden, deaf can be these too !

    It’s up to those potential parents, the deaf community is not responsible, nor has any rights in the issue. It may be inescapable the image is better hearing than deaf, as it is via better deaf than blind, we read on other sites ! both may undermine the deaf/disability communal confidence, but this is about future generations not ours now. Disability groups so far have said nothing at all in opposition.

    Once the ID genie was out of the bottle the end result was inevitable, all manner of issues will now be looked for an ID’d and put on the ‘hit list’, for some this will be a boon, for others appear negative, we are as we are because there was no choice in the matter for our parents or for us. Even NOW if some deaf had a ‘choice’ to really hear, a lot would take up that option.

    Ask any family e.g. that has members with incurable diseases, if they could erase/repair the genes that cause that… Gene therapy is all about ID at present, ‘repair’ is a long way off, so the ‘choice’ is basic, you remove it or leave it. Repair also means removal in some cases. Are parents to get no choice in saying they want a hearing baby ? In America, they already choose what they have, as do Asians who have been selecting male children because that is their traditions, putting females on the hit list.

    Designer kids are here already. Americans are the greatest hypocrits in this debate. Do as we say, not do as we already DO. You can’t stop what is happening, any more than preventing the sun going down or the tide coming in.

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