HFEB Heads Humanity Towards a Black Hole???

this blog started out as a comment to Shane Feldman‘s blog posting and responses on DeafDC.com but my own comment went way to long so I’ve made it a blog entry here…

to me the case of the U.S. couple seeking out a sperm donor with a strong dominant gene for “deafness” is not the same thing as what the Deaf brits r facing with the HFEB. i do understand that the clause 14(4)(9) is a direct result of fear as a result of this case but they really r apple and oranges as far as genetic engineering and screening goes (see Stop Eugenics Now for more details)

the HFEB’s clause (as i understand it) will mandate that if any – deaf, Deaf, hard of hearing, hearing, bald, lesbian, heterosexual, over 40… ANY person needs IVF and the eggs and sperm that hook up invitro show a possibility of deafness – that one is to be TOSSED

it may even be interpreted to mean that a person who might have a strong likelihood of having a Deaf gene – not be allowed to use her/his egg/sperm

so as i understand this bill – it is not only designed to stop those “CRAZY” folks who might want to actively try to CREATE a Deaf baby from doing so but it will stop ANYONE who rolls the dice and ends up with any potential ABNORMALITY – TOSS, DO NOT INSERT, AND DO NOT PASS GO. INSTEAD GO BACK AND SCREEN UNTIL U GET THE NORMAL GAMETE / EMBRYO, CHOSEN ONE, DESIRABLE OFFSPRING


ive got issues with this because im just a wee bit suspicious of the medical industry and how they view “disabled,” “diseased,” and “abnormal” (deficit thinking often rules)

i had been offered an aminocentisis when pregnant with my son – “what for?” i asked. they said “oh just so u can make sure the baby is fine.” i was aware the procedure is normally used to screen for Down Syndrome for the explicit purpose of giving the woman the choice to abort the ASSUMEDLY unwanted child due to such a significant “defect”

i pressed onward – “what do you mean make sure the baby is fine.” “what if the baby is not fine? then what?”

shifting on her feet “well, then you have choices.”

“meaning what?” i asked

“well then you can make an informed decision”

“im not following u”

blank stare with a plea – dont make me say it in the eyes

“we are talking about abortion are we not?” i ask.

“yes, this is the choice” she replies

I say “no thank you”

end of discussion

pls know that while I would not choose an abortion for myself, i support the right to legalized abortions for women who desire one relating to their rights and their bodies

the reason why i share this example is because to me it exemplifies how quick the medical profession is at offering us “solutions” – using technology (prenatal) to do away with a fetus not because the woman can not bear the fetus emotionally, economically, or physically but because the fetus is “imperfect”

here i am not making light of the significance of Down Syndrome – i know with the developmental disability comes many other very significant health complications – one of which is heart problems and often leads to a very early death. I also realize this is heart breaking and devastating to the family

yet of all the families I know whom have a family member with DS – not one of them regrets it or wishes the child was never created

so for me the issue is not i oppose HFEB because im pro-life

it is rather i oppose it because who is to determine which life is worthy of being allowed to be created PRE – implanting. this decision is largely put into the hands of legislators and the medical profession – this takes the reproductive rights out of the hands of the individual / couple seeking a child

that choice is entirely different than someone actively trying to increase their chances of having a child with green eyes or a high IQ or a passion for music or a gene for being Deaf or to avoid a Deaf gene by selecting a sperm donor (via love and marriage or interviewing friends or looking through the sperm bank book). that is simply trying to increase ones chances that the baby will have the traits one admire and desire vs. actively combining and tossing until one hit the “right” composition

the latter is more brave new worldish

i myself would never actively seek out such an option but i can understand why some might

HFEB is ending or prohibiting the potential of life due to it being “undesirable” because it is “abnormal”

the uproar over the lesbian couple is a telling tale because it shows us just how profoundly the majority culture views “deafness” as an affliction

when my students read about the “case” years ago they were more actively engaged in discussing if two women – i.e. Lesbians – should be making babies. The Deaf gene was not an issue for them – it was like duh – big deal. But two lesbians…wow hmmmm – that caused a stir. today they are far less unsettled by the knowledge that lesbians make babies and can be awesome moms but when the story first broke for many of them that was the surprising and questionable factor and not the Deaf angle at all (this is the “different center” padden and humphries wrote about in their “Deaf in America: Voices from a Culture”)

today they have more exposure to gay and lesbian rights and “what is normal”

unfortunately the majority culture still views Deaf people as something really tragic and unfortunately there are not many images in the media (film, tv, etc) to help normalize what it means to be Deaf

re: cost

the Nazis waged a very strong and successful campaign against the disabled with their Law for the Prevention of Hereditary Diseased Offsprings (one of the first laws Hitler signed into action in 1933) based on the costs “unfit” and “useless eaters” cause to society in terms of medical care and social services. Estimates of up to 350,000 disabled people were forcibly sterilized. If genetic screening had been available – u can bet their dream of an Aryan race would have been much more productive.

The danger with any government legislating who can and can not be allowed to be created is that the social darwinism spectrum leap from preventing unfit life to actively murdering living and breathing children and adults is not a terribly big one (6 millions Jews, millions of others (disabled, Jehovah witnesses, gays/lesbians, Romi, Catholics, communists, etc)

If the HFEB passes – it has implications for more than just the U.K and more than just Deaf people

it has serious implications for humanity

it means that the world may never see another Stephen Hawkings or Ella Mae Lentz or Chris Burke or the Mayes family etc

While Stephen Hawking has contributed infinitely to our understanding of the universe, matehmatics, and black holes, if ALS (Lou Gehrig’s Disease) is definitively linked to genetics, would any potential future individual with ALS be prohibited from being created under the British Human Fertilization and Embyrologoy Bill?

the argument of the COSTS / DEBT that disabled folks incur society is one that so saddens me. it is the argument the Nazis successfully used to lobby support for their sterlization campaign

it is more expensive to be a woman in this society, it is more expensive to be a black person in this society, it is more expensive to be a latino in this society

this is not an argument to do away with such individuals but rather an incentive to rectify any injustices and inequalities experienced by members of these groups

“We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.”

let us not allow the HFEB to head humanity towards a black hole

take a stand for that which is right, which is just, which is true by signing the STOP Eugenics Now press release / petition opposing clause (14)(4)(9) – link gives background information links and how to get your name added

let us U.S. Deaf culture folks show our support for our brothers and sisters (born and yet to be created) in the U.K.


patti durr

sorry to blog this and not vlog – camera still on the blinks


PEACE – By the Better Angels of Our Nature – Ethical blogging / vlogging

since the four agreement video is so dark ive decided to copy and paste a blog comment i left on another site and amend a bit here
PEACE – By the Better Angels of Our Nature – Ethical blogging / vlogging

Peace does not mean we say nothing or that we move on and ignore – it does mean that we examine and we question and we challenge and we LOVE

Peace does not mean the absence of tension but the presence of justice (loosely translated from MLK – im in a rush sorry)

seems alot of old baggage from various places is getting dumped into this picture of “should the DeafRead conference have a DISCUSSION on what type of aggregator it wants to be” – folks r feeling naturally defensive – “u gonna cut me cuz i disagree with u…” “who decides…” “censorship…” etc

really the question is valid – it is a question re: ethical behavior

DeafRead has created a virtual place – a community of interest

should it be a place to divide an already fragmented and disenfranchised community or should it be a place where folks can come together to share ideas and POV?

i think how it has been functioning overall is fine but i do hope that at the upcoming conference it will have a DISCUSSION on the topic of having some special interest group threads for like minded folks (not group think – there is a difference) in such a place folks dont have to worry about trolls, personal attacks, etc – there will still be differences of opinion but hopefully there will be more postive ACTION and less REACTION and certainly far less DISTRACTIONS

these SIG groups could be for a variety of points of view

the sad things i have been seeing in DeafRead blog / vlogs COMMENTS SECTIONS do not tap into or reflect the great potential of what DeafRead could be – instead it is a war of he said / she said

when my family has a disagreement and conflict and emotions get really heated – we agree to take a couple of steps backward – calm down and breath and then ask if we can start over

wondering if it is time to just start over and anew – this is not the same as moving on or sweeping things under the carpet

it is clear that DeafRead is precious and important to all of us

it is clear that DeafRead is getting used and abused (and/or allowing itself to do so)

wondering if we try to start anew and ask ourselves – is my blog / vlog / or comment designed to mock, ridicule, or abuse a group of people – if so, i would ask u to find another place for such ill play

if any of our next blog / vlog / or comment is designed to assert a stand, opinion, share an experience or point of view – even if contrary to my own – i would welcome it if it can be done respectfully and fairly

right now there is ALOT of hitting below the belts

and a ton of urban legends seem to be emerging

i have never seen any blog / vlog that advocated for an ASL ONLY education for deaf kids

i have never seen any blog / vlog that advocated for the exclusion of Deaf people who were oral or use CI from the Deaf community or DeafRead

i have seen comments by bloggers / vloggers that are inflamatory, mocking and mean

i have seen some people sign CI in a way that is disrespectful and labels the person instead of the device or the CI industry or the specialists

i have seen some people make derogatory and offensive remarks about Deaf culture and ASL

i think what some folks are calling for from DeafRead is “to gives to bigotry no sanction, to persecution no assistance” (G. Washington)

what we now seem to have emerging on DeafRead is an UNcivil war so i will close with a quote from Abraham Lincoln closing his first inaugural address and the onset of the Civil war

“I am loath to close. We are not enemies, but friends. We must not be enemies. Though passion may have strained it must not break our bonds of affection. The mystic chords of memory, stretching from every battlefield and patriot grave to every living heart and hearthstone all over this broad land, will yet swell the chorus of the Union, when again touched, as surely they will be, by the better angels of our nature.”

let us remember the better angels of our nature and type / sign carefully

forgive the above postings for typos and any incoherence – im in a huge rush

i wish u all a very very very happy new year

be well

much love and peace

patti durr

Four Agreements

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In seeing some of the mudslinging, flaming, name calling, finger pointing, misunderstanding, and distortions being tossed around in various b/vlogs – i thought i would revisit one of my favorite short books
The Four Agreements: A Practical Guide to Personal Freedom (A Toltec Wisdom Book) by Don Miguel Ruiz
Four Agreements of:
Be Impeccable with Your Word
Don’t Take Things Personally
Don’t Make Assumptions
and Always Do Your Best

also discusses the notion of mitote (the fog of our mind) and the importance of being selective of what we put into our minds
futhermore the difference between action and reaction is discussed as well as the importance of having compassion when asserting our passion



Artistic Expressions re: Eugenics

hi all

just saw this awesome artwork re: the UK Stop Eugenics campaign

“Who’s Playing God” (artist unknown) http://stopeugenics.org/2007/12/18/whos-playing-god/#comment-80

another one got added today(dec 19):
“deaf future under 14(4)(9)” artist unknown http://stopeugenics.org/2007/12/19/deaf-future-under-1449/
to see some earlier works by Susan Dupor on the subject of eugenics go to:
“F-I-X, the New Eugenics” by Susan Dupor 2000 (U.S.) http://www.geocities.com/duporart/gallery/more/fix.html
and “Eugenics” by Susan Dupor 1999 (U.S.)

id love to insert the images into this posting so u dont have to click and roam but due to needing the artists permission to import etc the links will need to suffice – definitely worth the clicks

What are your thoughts on these works? what do they communicate to u? do u know of other such works examining eugenics and Deaf people?

the artwork “Crying Hands” by David Bloch is now seen as the iconic imagery of eugenics and Deaf people due to it gracing the cover of Horst Biesold’s book of the same title. My recollection of David Bloch explaining this wood block print was that it was to represent the Deaf person’s experience during the Holocaust generally and not so much genetic practices specifically. All the same it is a very powerful image and fits well with Biesold’s examination of the social darwinism continuum

re: the “deficit thinking” debate / dialogue – remember to breath and come from love – the reminder applies to meself as well

many good points are being shared so weed out the stuff that is just flames and trolls stomping through the WWW mudslinging and keep ur eyes on the prize – such as hmmmmmm IVF clinics in the U.S. and U.K. denying disabled folks the right to pass on their own genes – an extreme form of deficit thinking to say the least


Apathy vs. Activism

Short stop animation film (>1 min) using Russian dolls to examine the possible core root of apathy and how to start over to rebuild ourselves from apathetic beings to peaceful activists

Previously i had vlogged about Love vs. Fear and had a short blog post about apathy

I have discussed the topic of being neutral and/or apathy within the Deaf community with many great souls. Most seem to attribute it to “learned helplessness” via many oppressive mechanisms (black listing, fear of being labeled a trouble maker, Deaf community so small, etc)

This short film is just a quick attempt to give visual representation to the conceptualization of apathy. I have encouraged many of my friends who have brilliant ASL to make a vlog with their very sophisticated analysis of apathy within the Deaf community. fingers crossed they will do so soon

to see a few favorites:
Joey Baer’s What would you do?Staying Neutral
David Eberwein’s Deaf POWER Militants: Top Five Myths
Ella Mae Lentz’s In and Out and Moving On

Im sure im missing many others – pls add in comment section and ill go back and amend this posting

My apologies to any professional stop animator – this short film is a quick and fast attempt using my imac camera and imovie – a real camcorder and better lighting would have ensured a much better film but in a hurry – biggest sorry


patti durr

Are My Genes No Good?

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Short video describing an anti-D/deaf attitude I encountered from a nurse after my son was born

Have you had similar experiences with the medical profession???

Part III – To Be or Not to Be – From Euthanasia to Genocide

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This last video examining Eugenics as it pertains to Deaf people will cover forced abortions and euthanasia. It explains how the Nazis shifted their secret T4 program away from disabled people after public outcry and applied it to Jewish people in concentration camps. Resulting in the murder of over six million Jews – of which it is unknown how many were Deaf or Hard of Hearing (Yad Vashem – Israel Holocaust center says 6,000, Dr. Simon Carmel has estimated 20,000). The website http://www.rit.edu/deafww2 has several testimonies of Deaf Jewish survivors to be viewed – click VIDEOS (collections from NTID, Shoah Foundation, Deaf Mosaic, and summaries from Yale Fortunoff’s collection), also see Deaf Europeans section for information, testimonies and powerpoint on Eugenics and articles on individual Survivors
Discusses briefly how the Nazis not only tried to prevent life they felt unworthy of their nation but also tried to promote life from the purest and best Aryan stock via their Lebensborn program and various progaganda

Invaluable resources on this topic:
also covers Deaf Nazi



awesome guide on Deaf people and WWII listing books, articles, videos, etc prepared by Joan Naturale, Deaf librarian at RIT http://wally.rit.edu/pubs/guides/deafwartestimonies.htm

http://www.rit.edu/deafww2 growing website covering Deaf people and WWII – for focus on eugenics and Deaf Jewish people click Deaf Europeans

U.S. Holocaust Museum – Nazi Persecution of the Disabled: Murder of “The Unfit”

http://www.grumpyoldeafies.com/ for discussion and position response on the UK bill before parliament re: selective breeding

Current euthanasia done to disabled and terminal Dutch infants

sorry for the volume of postings i have put up – needed to get this stuff all done and out before my break finishes – back to work tmw so things will slow down here big time in terms of my blogging / vlogging but will look forward to any comments or insights u all wanna share

be well and if u live where there is snow – go out and play. if u dont – still go out and play! smile



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