Deaf Mom
Deaf Mom
Chicagoland
Female
Married

My Future Deaf and Hard of Hearing Grandchildren--You Want To Take That Away?

Posted: 12/26/2007 at 07:16 PM

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Veralidaine here on Disaboom sent me a link to her blog, Stir This, where she discusses an issue that's causing an uproar in England: Designer Deaf Children.

 

There's currently a bill that is passing through the House of Lords that will effectively take away a parent's right to implant an embryo that has been screened and found to be carrying genes that will lead to or produce a child with a disability.  In other words, couples will only be allowed to implant "healthy" embryos.  According to the Times Online:

 

"A clause in the Human Tissue and Embryos Bill, which is passing through the House of Lords, would make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist."

 

This issue hits home for me, because my own daughter has nearly a hundred percent chance of having a child who is deaf or hard of hearing.   More about my family's genetics can be found here:  Unraveling the Genetic Pattern in my Family.   Imagine if my daughter had to see an IVF doctor, only to discover that no one will allow her to use her own eggs because of the guarantee of having a deaf or hard of hearing child.  A bill like this would put my daughter in a situation of having to choose another women's eggs or adoption.  

 

Mishka Zena ponders the genetic rights of deaf and hard of hearing people and the Americans with Disabilities Act on her blog: Refusal of IVF Deaf Embryos a Violation of the ADA?

 

I'm not comfortable with the idea of a government entity or a doctor deciding whether or not my daughter has the right to bring deaf or hard of hearing children into this world, and that's essentially what this bill attempts to do-- determine who gets to be implanted and who doesn't.

 

I'm going to end this here with the same ending I've used on my blog:

 

"In the end, it comes down to attitude. I happen to think that this world is much more interesting because my deaf and hard of hearing kids are in it. I like hanging around people who feel the same way. I avoid toxic people who think that my family, my kids are less human because our genes are a little skewed.



And I look forward to embracing my deaf, hard of hearing and hearing grandchildren someday."

 

 

 

 

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  • Debbie wrote on Dec 27, 2007 at 8:40 AM

    hi deafmom, i can't believe that someone would think someone is less human because of a dissability. unreal huh? you will have your beautiful grandkids someday either way hearing or deaf they will be the loves of your life and i hope you have alot of them! happy new year:) xoxo

    p.s.how old is your oldest? how long do you have to wait? :)

  • Veralidaine wrote on Dec 27, 2007 at 9:23 AM

    I'm glad you blogged about this... it is just unreal that not only do they want to legalize the 'designer babies' thing (but for healthy babies only) but they want to make it mandatory. Wonder what would have happened if they screened Stephen Hawking pre-birth and decided not to implant that embryo?

  • Deaf Mom wrote on Dec 27, 2007 at 10:03 AM

    Debbie,

    I'm definitely looking forward to grandchildren but I sure hope they don't come anytime soon-- the oldest is a freshman in high school!  :)

  • Deaf Mom wrote on Dec 27, 2007 at 10:05 AM

    Daine,

    Thanks for giving me the links on this!

  • PhilosopherCrip wrote on Dec 27, 2007 at 6:01 PM

    So much I could respond to here.  Firstly, let me say that this is also a very big deal for people with dwarfism.  I don't have the links handy to the articles, but there was a study published earlier this year where a huge percentage (I want to say 60 of 63) of American IVF clinics responded to a Johns Hopkins survey saying that they would refuse to implant an embryo with a disability if asked (specifically citing deafness and dwarfism).  There was quite a bit of media fallout in the New York Times, MSNBC, and many other reputable sources.  

    Recently, Little People of America put forth a position statement that I helped draft pointing out that clinics or doctors are only envisioning a mass of crips going out and trying to purposely reproduce kids that share their traits, when a more realistic scenario would be of a person who needs to use IVF and just HAPPENS to have a disability.  In effect, such a refusal would amount to discrimination about who gets to use IVF.  The "horror story" scenario has more sex appeal and gets more media attention, but it is not a good foundation for public policy.

  • PhilosopherCrip wrote on Dec 27, 2007 at 6:06 PM

    One more thing, this sentence toward the end of your post popped out at me: "I avoid toxic people who think that my family, my kids are less human because our genes are a little skewed."  

    I don't like thinking of anyone's genes as being skewed.  Certainly people have DIFFERENCES in their genetic make-up, but I find it is usually society's attitudes and standards that make some of those differences disabling.  It's not necessarily the genes that are skewed, but social norms and the associated stigmas.

  • Deaf Mom wrote on Dec 27, 2007 at 9:44 PM

    PhilospherCrip-- I meant that sentence in a sarcastic way-- hard to get that across.  I think my genes are just fine.  :)