Chris Burke speaks at 2010 International Siblings Conference...

....about the importance of his siblings including him in everything while growing up.

"When I was born, the doctors told my parents all the things I would never do," Burke said. "They, and my brother and sisters, tried even harder, and they passed that message on to me."

The former Life Goes On actor now sings in a folk band and acts as an ambassador with the National Down Syndrome Society.

The conference was for siblings of people with disabilities to come together to share resources and get support.

Changing attitudes toward Down syndrome in UK

More babies with Down syndrome "are being born than before prenatal screening became widespread, figures show " in the UK, according to this BBC article, in part due to changing attitudes. A survey of 1000 parents done for BBC Radio 4's documentary Born with Down's revealed that

A fifth said they had known somebody with Down's, a third cited religious or anti-abortion beliefs and 30% felt life had improved for people with Down's.

Most said they saw the future as better for children with Down syndrome.

They pointed to integrated education in particular and a greater acceptance of what it means to be different.

Babies Perfect and Imperfect

Babies Perfect and Imperfect is a piece in First Things written by Amy Julia Becker, a student in a theological seminary, who is the mother of a child with Down syndrome. Her daughter Penny was born over two years ago and the author writes of her own transformation in defining "healing" and the definition of inclusion.

She candidly admitted that she reviewed her own theological suppositions:

And I wondered—Was Down syndrome a product of cosmic disorder? What did it mean for Penny, extra chromosome and all, to be created in the image of God? Could Down syndrome have existed in the Garden of Eden? Would Penny have Down syndrome in heaven? In other words, was Down syndrome a part of God’s good creation, or was it evidence of creation gone awry?

She also discusses the writings of Yong and Reynolds:

when we conceive of healing simply as miraculous cures for abnormal states of being—blindness, deafness, cognitive delays—we miss the point. They do not see the transformation of every physical limitation as a guarantee, or even as necessary for fulfilling our human potential, and they construe healing in a holistic sense, as the inclusion of all people, regardless of bodily or mental function, in communion with God.

h/t NJCIM list serve

I would go further and suggest that the focus needs to be on the ways in which Christian communities still define those with disabilities as flawed and in need of healing, as opposed to seeing them as full members with many gifts to offer to others with their presence. Such a stance blocks a dialogue toward inclusion with its assumptions and misperceptions. In this sense, the community that excludes disabled members is, in and of itself, in need of a spiritual fix.

See also Amos Yong’s Theology and Down Syndrome, Thomas Reynolds’ Vulnerable Communion, and Hans Reinders’ Receiving the Gift of Friendship

October is Down Syndrome awareness month so get (it) down....

The 2nd annual 31 for 21 Challenge hosted over at Unringing the bell

Who can do it?
Anyone who is interested! You are all welcome to join the challenge!

When do I do it?
The goal is to blog everyday for the month of October. 31 days to raise awareness of Down syndrome (a.k.a. Trisomy 21). Get it? 31 for 21!

Go here for the rest of the rules:

This I Believe

A video of a film by a 13 year old of her brother with Down syndrome - is up over at Big Blueberry Eyes . Please take four minutes to go see it.

The r word on the big screen

Terri asks what the disability community can do about the movie Tropic Thunder. She writes that the movie

...bandies the R-word all over the place and describes the experience of having an intellectual disability as being “moronic, stupid, dumb and imbecilic.” This movie is geared toward teenage boys and has big-time actors. This characterization is buried in lots of crazy antics that teenage boys love. Do you think these young guys will pause and ask themselves, “Is this really an accurate portrayal of intellectual disability?” I don’t.
I think they will carry on the tradition of misjudgment and mistreatment of people with disabilities—including their peer, my daughter. Then she too can have stories to tell that will make you sick.
The movie Tropic Thunder... is scheduled to be released next week. A coalition of disability groups and self-advocates is meeting with Dreamworks studios today. I am very pleased by the response of our national organizations and I think they should be backed up by a nation full of local responses.

Go on over to her blog and read more.

Dave is making up cards that say Words Hit Like A Fist on the use of the word "retard":

Along with my agency, my executive director, I decided to do something. I sat down and crafted a business card. On one side it read: Words hit like a fist! On the other side it says:When you use words like “R#tard” or “R#tarded” it hurts people, I heard you and it hurt me. Many people with disabilities consider “R#tard” the most offensive word referring to disability. I agree. Bigots use negative terms for minorities. R#tard is the same, it’s hate speech used by bigots. Consider carefully your words in the future.Because…Words Hit, Hard As a Fist. So, JUST STOP IT.


What it's about is how people think - about disability. Dreamworks will be meeting with advocates today to discuss issues around the character of "Simple Jack" and the use of the word "retard". Represented groups include the National Down Syndrome Congress and the Special Olympics.

Patricia Bauer has posted some of the offensive language used in the movie in this post Never Go Full Retard and a clip of that scene containing the use of the word "retard" can be seen below.


She also reports this morning that a promo for the film has been pulled by the studio.

New to the blogroll: The Catholic Down Syndrome Society

I'm adding a blog to my blogroll which contains resources and information: The Catholic Down Syndrome Society.

I'd also like to point out the recent article by the blog's author, Leticia Velasquez, entitled Down Not Out, appearing in the National Catholic Register, which discusses, in part, the Prenatally and Postnatally Diagnosed Conditions Awareness Act.

Defeated in 2005, the bill was reintroduced in 2007 by Sens. Brownback, of Kansas, and [Ted] Kennedy, of Massachusetts. It would provide expectant parents up-to-date, scientifically sound information on the medical treatment available to individuals with Down syndrome, access to support groups for parents and a list of potential adoptive parents.

The bill is awaiting debate in the House, after which there is a good chance it will pass and be signed by President Bush.

via National Catholic Register

Changing perspectives on Down syndrome

The sibling of a girl with Down syndrome is working to change peoples' perspectives and provide more information to parents who discover the diagnosis in their child, a Catholic paper reports. Horrified by the 90% abortion rate statistic, Kristin Lanari decided to take action.

Lanari figured if there were more information and education available about “Down’s people,” doctors would be less inclined to recommend abortion and families would be less inclined to take that recommendation. With a grant from the Wisconsin Board for People with Developmental Disabilities, she is compiling reflections for a book of stories about having a sibling with Down syndrome. Lanari hopes the books can be distributed to clinics, hospitals and schools to help families who learn the condition exists in their baby.
via Catholic News Service

Oliver : a short film

Here's a short film about a young man with Down syndrome - who deals with his experience of being bullied in a creative way.



[visual description:In this short film entitled Oliver, a young man with Down syndrome is stopped by a bully on his way home from work. A coworker comes to his aid. That night, as he lays in bed, he replays the scene in a cartoon/comic strip montage, with himself as Superman. In the comic strip, he confronts the bully, takes away his cigarettes and tells him that smoking isn't good for him. He gets out of bed in the morning and you can see a Superman outfit underneath his work clothes.]

Wall Street Journal article on Harriet McBryde Johnson

entitled A Life Worth Living was forwarded to me this morning. You can find the article here., and here's an excerpt concerning culturally acceptable choices :

Yet, despite the lip service we pay to "accommodation" (and the genuine good that comes from legislation such as the Americans With Disabilities Act), we now find ourselves in a disturbing situation: As our scientific powers to eliminate disability grow, our acceptance of disability wanes.

To cite just one example, consider the rapid near-disappearance of people with Down Syndrome. ...This at a time when new developments in medicine have nearly doubled the average life span of people who have the condition to 49 from 25 years. As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a "democratic calculus of worth" regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

Michael's paintings...

Michael Jurogue Johnson is an artist who has Down Syndrome. He paints pictures of pets, houses, children and other wonderful things that you can see in the video below.

Parents choose plastic surgery for child with Down syndrome

The parents of a child with Down syndrome in the UK have "forced plastic surgery" on their child , according to this Fox News article.
Georgia Bussey underwent "radical and painful" cosmetic surgery three times by age 5 so she could "fit in" with her peers, the U.K.'s Daily Mail reported Sunday.

Parents of another girl with Down syndrome told the paper that they were also considering altering her appearance in the future so she could be more "accepted.”

Critics in the U.K. slammed the parents, with some even claiming the procedures were tantamount to child abuse. However, the parents hit back, saying that no one complained when "normal" children had their ears pinned back.

Uh, there's that word 'normal' again.

Well we could get into a debate about teenagers who have their noses done or kids who have their ears pinned back- but let's look at the real issue here. It was done to alter the child's appearance because she had Down syndrome, causing her pain with three surgeries - so she can 'fit in'?

This 'normal' and 'fitting in' discussion is what we need to focus on. How about practicing inclusion by celebrating our differences and diversity?

This BBC article on this story is quite interesting as well.

[Update: Thanks to a comment, I found a number of posts on this topic over at Patricia Bauer's blog which are of interest. In fact, to date, her blog contains 196 posts tagged on the topic of Down syndrome.]

[I saw a post the other day celebrating the beauty of children with Down syndrome and am saddened to discover I don't have the link, but if anyone else has it, please post it. Thanks.]

For parents with a poor prenatal diagnosis...

Be Not Afraid is an organization offering support and resources for those facing a poor prenatal diagnosis.

"Benotafraid.net is an online outreach to parents who have received a poor or difficult prenatal diagnosis. The family stories, articles, and links within this site are presented as a resource for those who may have been asked to choose between terminating a pregnancy or continuing on despite the diagnosis. The benotafraid.net families faced the same decision and chose not to terminate. By sharing our experiences, we hope to offer encouragement to those who may be afraid to continue on."

Their site includes articles, links to resources and stories from other parents.

Dr. Jerome LeJeune Society

.. a group for Catholic parents of children with Down syndrome.

"The goals of the group are:

1. To provide support for parents of children with Down syndrome with the help of their Catholic faith, including a beautiful prayer which Dr Lejeune's daughter, Anouk Lejeune Meyer will send us.
2. To raise society's awareness of what beautiful children they are to lower the 90% abortion rate
3. To raise funds to support ongoing research to treat and to cure Down syndrome, like Fondacion Lejeune
4. To support Dr. Lejeune's cause for sainthood, by raising awareness of his contributions to the science of genetics, to the pro-life movement, and to raising the dignity of individuals with Down syndrome." via their site

Their site also includes links to blogs by Catholic parents. Click above to visit it.




hat tip to Long Island Catholic

Botched abortion raises eugenics issue in Italy

"Rome - A botched abortion in which a healthy twin foetus was terminated instead of its sibling with Down syndrome has reignited the abortion debate in Italy and raised allegations of eugenics.

....
"What happened in this hospital was not a medical abortion but an abortion done for the purposes of eugenics," she said, referring to the belief that the human species can be improved through selective reproduction.

The abortion was performed on a 38-year-old woman in Milan in June, but news of its outcome has only recently become public. Doctors blamed the mistake on movement of the foetuses between the examination and the abortion."

Via The Curt Jester

Parenting and Disability - a father's view

Julian Regehr, whose daughter has Down Syndrome, shares his experiences and thoughts in the article linked to above. It's part of his website that contains helpful links and information for other parents of children with disabilities.

He writes :

"In my own journey I am coming to the point where I make an extra effort not to match my child's growth against that of other children. If she can't sit up today and can sit up tomorrow, that is a huge achievement. Whether or not her peers have been sitting up for months is irrelevant. I need to learn not to measure her against a standard that is designed to highlight her short comings. As she grows I will have to continue to make that effort. Why should I push her to be involved in soccer if she doesn't like soccer. If she wants to work as a dishwasher at a restaurant why should I push her to become a secretary. If she wants to be a secretary why should I hope for her to become a business woman. If she wants to be a business woman, why hope for a presidency. When I do these things, it is most often because I am unwilling to let her measure herself against her own standard. I am succumbing to the standard of a society which prizes certain achievements over others. I am succumbing to a society which talks about acceptance and inclusion but requires that acceptance and inclusion happen on their terms, using their points of reference."

This article is worth a read - for everyone, whether you are parenting a disabled child or not.

Peter Singer's views have him ejected as speaker

"Every so many years some of the world's most eminent scholars and religious and political leaders meet in the Polish city of Gniezno to discuss matters pertaining to Europe, especially the uniquely European view of spirituality and the nature and dignity of man.
The Gniezno Congress--which traces its roots back to the year 1,000 when Otto III arrived at the tomb of bishop martyr St. Adalbert in the city of Gniezno--is regularly attended by numerous presidents of European Countries, and, in 1997, was attended by the Holy Father John Paul II during his landmark visit to Poland.
...
Peter Singer is the notoriously radical philosopher and bioethicist, whose approach to ethics includes advocating as morally acceptable sexual intercourse with animals, the killing of "undesirable" or disabled newborn infants and eugenic euthanasia and abortion.
However, earlier this year a number of Christian groups found out that the Congress had invited Singer and began complaining to organizers. A LifeSiteNews.com source close to the scene indicated that parents of Downs Syndrome children were prepared to protest the Congress if Singer did in fact end up attending. In the end, however, Congress officials decided to cancel Singer's invitation due to the controversy, and the activist's name was removed from Congress literature."

via LifeSite News

Prenatal testing prompts Down syndrome parents to advocate

"Convinced that more couples would choose to continue their pregnancies if they better appreciated what it meant to raise a child with Down syndrome, a growing group of parents are seeking to insert their own positive perspectives into a decision often dominated by daunting medical statistics and doctors who feel obligated to describe the difficulties of life with a disabled child.

They are pressing obstetricians to send them couples who have been given a prenatal diagnosis and inviting prospective parents into their homes to meet their children. In Massachusetts, for example, volunteers in a “first call” network linking veteran parents to new ones are now offering support to couples deciding whether to continue a pregnancy.

The parent evangelists are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them. But as prenatal tests become available for a range of other perceived genetic imperfections, they may also be heralding a broader cultural skirmish over where to draw the line between preventing disability and accepting human diversity.

“We want people who make this decision to know our kids,” said Lucy Talbot, the president of a support group here who prevailed on the hospital to give Sarah and two teenage friends an audience. “We want them to talk to us.”

Via NY Times

Click above to read the entire article.

"Disability is a Natural Part of Life"

Over at Monastic Musings, Sr. Edith writes a post about prenatal testing and Down syndrome, bringing out the point that disability is part of life. Definitely worth a read - click above.

Down Sydrome Ireland seeks protection for disabled under law

"It is helping to collect a petition of a million signatures calling for the full inclusion of every European citizen with disabilities.

Spokesperson Pat Clarke says that at the moment, many disabled Eastern Europeans are abandoned in institutions from a young age."

Via Belfast Telegraph