Tuesday, December 20, 2011

Got a wonderful Catholic mom in your life?

Encourage her this Christmas by giving her this inspiring, upbeat book by Dorothy Pilarski;
Motherhood Matters. 

See my review here. 
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Monday, December 19, 2011

Think twice about dropping your donation into that Salvation Army kettle!

As a social worker in the eighties, I worked extensively with the Salvation Army, so I had a positive image of their good works, and regularly donated to their kettle campaign each Christmas. This all changed this week when Anita Crane, a reporter for World Net Daily sent me the Salvation Army's policy on abortion. It has loopholes which are unacceptable, too many babies fall through.

"The Salvation Army believes in the sanctity of human life. Humankind was created in the image of God (Genesis 1:27). All people – without exception – are of value to him, holding a special place in his creation (Psalm 8:5), irrespective of age, gender, race, religion, health or social status, or their potential for achievement."
But it also states, "A serious commitment to the protection and care of the unborn calls us to a commitment to the prevention of unwanted pregnancy through means such as access to reliable birth control, safety in relationships, and societal respect of women."
Specifically, it says the Salvation Army "believes that termination [abortion] can occur only when carrying the pregnancy further seriously threatens the life of the mother; or reliable diagnostic procedures have identified a foetal abnormality considered incompatible with survival for more than a very brief post natal period."

My reaction is contained within the article, but here is the long version:
As a peer minister to women facing a pre-natal diagnosis of Down syndrome, I have heard the horror stories of what the doctors tell women in order to convince them to abort their child. They are told their child will do nothing to help himself, will only live to 10 years of age, will be miserable, will make their siblings miserable, will never be able to tie her shoes, read, graduate high school, and ruin her parents' marriage. This information is patently false.

The truth is marriages last longer when a couple has a child with Down syndrome,according to this Vanderbuilt University Study, and more are graduating high school and college every day, thanks to inclusive education. No one can say how long a child will live based on information gathered pre-natally or what their IQ will be, and Dr Brian Skotko has just published the results of a survey in the American Journal of Medical Genetics saying how happy families who have a member with Down syndrome are.

I shared this in my article for the National Catholic Register;
“We mailed surveys to families around the country, and 3,150 mothers, fathers, brothers, sisters and people with Down syndrome responded. Here is just a sample of what we found:
• 99% of people with Down syndrome said they were happy with their lives;
• 97% of people with Down syndrome liked who they are;
• 99% of parents said they love their child with Down syndrome;
• 5% of parents felt embarrassed by their child;
• 97% of brothers/sisters, ages 9-11, said they love their sibling.”
Now, some would interpret Down syndrome in the definition given by the Salvation Army policy statement as "a foetal abnormality considered incompatible with survival for more than a very brief post natal period."

Some babies with Down syndrome do not live long. Some live for decades, outliving their parents.

Take another 'abnormality' trisomy 18. Most babies with t18 don't live to birth, that is true, but there are exceptions. Tell that to Rick Santorum whose three year old Bella Maria is still with us, and Mary Kellett of Pre-natal Partners for Life whose son Peter was a blessing to his family and the world till his recent death at 6 and 1/2 years.
So, if Salvation Army says abortion is OK for babies with abnormalities, most women facing such a diagnosis will be told by their health care professional that that includes them.

It is beneath the dignity of a Christian organization to allow innocent unborn children to be killed. It is beneath the God-given dignity of the babies to be told their lives can be cut short because their mother was raped (the other exception) or they are not perfect enough. If God only gives them life while in their mother's womb, who are we to cut it even shorter?

It is the position of KIDS Keep Infants with Down Syndrome that possessing an abnormal prenatal diagnosis does NOT lower the God-given dignity of a baby. We believe that all human life is sacred from conception till natural death, and if, in the tragic circumstance that a baby is destined to live only the briefest of times, only within a mother's womb or a few brief moments or days afterward, that we must give that child the full span of life and not end her life by abortion.

There is always the possibility of an incorrect diagnosis, so we must always decide on the side of life, and trust God with the life of our beloved child.
The Salvation Army should re-consider their position on this critical issue, as it is not consistent with a pro-life stance.
Let them live, Salvation Army. Let the babies live.

Support their moms if they feel that they can't do it alone, and give them hope for their child's future, if not here on earth, forever in eternity.
That is what we celebrate with the birth of the Christ Child, the birth of the giver of Eternal Life.

Send Salvation Army a message that you will not be donating until they revoke the loopholes in their abortion policy using this contact information:
Commissioner M. Christine MacMillan
The Salvation Army
International Social Justice Commission221 East 52nd Street
New York, NY 10022, USA
Phone: (212) 758-0763Email: IHQ-ISJC@salvationarmy.org

Read the entire article here.
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Tuesday, December 13, 2011

Watch my talk tomorrow live at Family Resource Council

Follow this link to the live webcast at 12 noon EST. Please pray for me as I discuss Down syndrome; Disaster or Divine Smile?

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Wednesday, December 7, 2011

Museum of Motherhood Talk on "Genetic Diversity"

The talk where I introduced my concept of "genetic diversity" to a conference on multicultural motherhood, given Monday at the Museum of Motherhood in Manhattan was well received. Attendees were very enthusiastic about the idea of a new paradigm of perfection, one not based on flawlessness, but on wholeness, of fulfilling one's purpose in life, as introduced by Amy Julia Becker at her keynote address for the Down Syndrome Conference at Princeton University.
You can see my chatty talk here. 

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Upcoming talk at the Family Research Council

If you are in the Washington DC area, and would like to increase your awareness of the gifts offered by those with Down syndrome, please consider registering for a talk that I will be giving with Mark Bradford, Executive Vice President of the National Catholic Bioethics Center.
 We will address the new pre-natal test, MaterniT21 which is now available to expectant mothers and how it has the potential to eliminate people with Down syndrome from our society. Mr Bradford works with the Jerome Lejeune Foundation which supports promising research projects around the world seeking to improve the learning and memory of those with Down syndrome. 
We will share our personal testimonies as parents of children with Down syndrome, and why there's never been a better time in history to have a child with Down syndrome. 

Click here to register for the free event, held at the Family Research Council. 

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Sunday, December 4, 2011

I will be speaking at the Museum of Motherhood in NYC tomorrow

Multicultural Motherhood
Day Conference
Dec. 5th 9-4:30
Museum Of Motherhood
401 East 84th St. NYC 10028
Admission $55 pre-event l $74 day of conference

9:00-9:10 Museum Tour
9:10-9:30 Joy Rose: MotherhoodFoundation@gmail.com - Multicultural Motherhood through a magnifying glass – Incorporating tolerance and traditions through family & community experiences. Joy is the Founder and Executive Director of Museum Of Motherhood. Opening remarks, museum tour and presentation on the mission and context of the Museum Of Motherhood located in New York City, USA. As a Christian, married to a Jew and practicing Buddhism in the home, Joy's direct experience blending family traditions recognizes the unifying force is our connection to our humanity. Understanding, accepting and celebrating our differences will lead us into the future. The Museum Of Motherhood is a sacred space for birthers and caregivers, managing information in a local, community and global context. She is President and Founder of Mamapalooza Inc., a company by women, promoting mothers for social, cultural and economic benefit. Inspired by her experiences as a wife and mother in the arts, Joy is dedicated to championing opportunities for Mom-Artists, Educators and Entrepreneurs.
9:30-9:50 taraneh.shirazian@mssm.edu - Global Motherhood Presents, Saving Mothers. Saving Mothers is a 501(c)3 organization dedicated to women's health, education and empowerment. Through public health initiatives, we aim to give women and their health care providers the tools they need to reduce maternal mortality and morbidity, 
10 Minute Open Discussion

10-10:20 Rachel Ishofsky: rachel@jhafrica.org - Jewish Heart for Africa. Rachel Ishofsky is the Associate Executive Director of Jewish Heart for Africa, a non-profit organization that brings sustainable Israeli technologies to rural African villages. While studying art and literature at New York University, Rachel took some time to study and teach in West Africa, where she founded a small non-profit for street children. After graduating summa cum laude with a B.A. in individualized study, she decided not to get her PhD as planned, and traveled the world instead, before returning to her native New York and joining the Jewish Heart for Africa team. Rachel has worked with various non-profits promoting the arts, education, and human rights. She speaks Hebrew and Spanish, has taught English on three continents and has traveled to over 30 countries. Rachel will be speaking about the challenges facing rural African mothers, from the unavailability of healthcare and maternity services at night without electricity, to the problem of not having vaccines to give to their children, to walking for hours to provide water for their families. She will also be speaking about the solutions to these challenges to be found in sustainable technologies.
10 Minute Open Discussion & Bathroom Break
10:30-10:50 Clare Misquitta: editor@brightsideglobaltrade.com: Healthcare For Multicultural Moms. Where are the resources for Multicultural Moms? Many multicultural moms don't get the care they need because of health disparities relating to ethnicity and race that are often ignored. Clare will share with you the facts and show you where you can find healthcare resources in America and Globally . Learn about healthcare disparities and join the movement to spread the word and help other multicultural moms. This session is devoted to my mom who passed away in 2000 in search of cancer cure. Clare has worked with the Museum of Motherhood since 2009 and is proud to speak at the Multicultural Mom event. She is a healthcare writer and her primary goal is to inspire the business community to build a sustainable world. She has traveled, worked and spoken across the Globe and has helped many leading pharmaceutical companies to build free educative healthcare programs for patients and the healthcare community. Her multicultural expertise extends to the African American, Asian (Indian, Pakistani, Chinese, Filipino, Vietnamese, Malay, Laotian and Hmog), European and Canadian community.
10 Minute Open Discussion
11-11:20 Tanya Fields - Tanyadenisefields@gmail.com - the BLK ProjeK; Inspired by her experiences as a single working mother in a marginalized community Executive Director Tanya Fields created and founded the BLK ProjeK in 2009.Tanya used her experiences as an underserved, low income woman and mother to inform and enrich the work of several high profile local environmental organizations such Mothers on the Move, Sustainable South Bronx and Majora Carter Group. Tanya utilized her network, resources and knowledge to create the BLK Projek. The BLK ProjeK seeks to create economic development opportunities that address food justice, environmental justice and public and mental health issues. By empowering underserved women of color through political education, beautification of community spaces, urban farming and holistic health programming, by creating equal access to these enriching experiences for under-served women of color, we strengthen and empower our entire society.
10 Minute Open Discussion
11:30-11:50 Leticia Velasquez; marysjoys@yahoo.com - Adopting a New Paradigm of Cultural Diversity; How genetic diversity compliments cultural diversity. Leticia is the author of A Special Mother is Born an inspirational collection of stories from 34 parents of special needs children, and is a contributor to Encyclopedia of Catholic Social Thought, and the award-winning Stories for the Homeschool Heart. She writes three blogs: Catholic Media Review, Cause of Our Joy and the award-winning Causa Nostrae Laetitiae. She posts on Down syndrome for Ehealth and Wellsphere. She is a correspondent for the National Catholic Register, a contributor to MercatorNet, Mamazina, Catholic Online, and a columnist for Catholic Mom. In 2008 Leticia co-founded KIDS (Keep Infants with Down Syndrome) to raise awareness of the unique gifts of people with Down syndrome to society. She has appeared on EWTN, and Canadian Television program "The Arena", and on various radio shows including NPR, The Drew Mariani Show, The Day Gardner Show, and Health Matters. She, her husband, and their four daughters live in rural Connecticut. Book signing to follow.
12- 12:50 LUNCH BREAK – Sponsored by The Food Emporium, Upper East Side
1:00-1:40 Dr. Phyllis Chesler, Mothers On Trial; PChesler@phyllis-chesler.com - Phyllis Chesler is an Emerita Professor of Psychology and Women’s Studies at City University of New York. She is an author, psychotherapist and an expert courtroom witness, with classics like Women and Madness, Women's Inhumanity to Woman, the 25th anniversary edition of Mothers On Trial, and so many more. She has lectured and organized political, legal, religious and human rights campaigns in the United States and in Canada, Europe, the Middle East and the Far East. A popular guest on campuses and in national and international print, television, radio and online media, she has been an expert commentator on the major events of our time. She has lived in Kabul, Afghanistan, and in Jerusalem and Tel Aviv. She currently resides in Manhattan. Dr. Chesler is co-founder of the still ongoing Association for Women in Psychology (1969) and the National Women’s Health Network (1974), and is a charter member of the Women’s Forum (1973-74). She is a charter member of the Veteran Feminists of America, a founder and Board member of the International Committee for the Women of the Wall (1989), as well as an affiliated Professor with Haifa and Bar Ilan Universities.

3:30-4:00 Elizabeth Mangum-Sarach, Director of Birthfocus: Birthfocus@gmail.com, presenting on Nomadic Motherhood (Short Film). Elizabeth Mangum-Sarach is the Director of BirthFocus, LLC, a Licensed Clinical Social Worker, a Lamaze Certified Childbirth Educator, a Birth Doula Trainer through Dona International, a Labor Support Doula, and, in September 2011, she will be certified as New York City's first Fear to Freedom Facilitator! She has worked as a DONA certified labor support doula since 2004. She is the former Director of Maternal Health and Parenting Services at Inwood House, a non-profit that offers services to pregnant and parenting teens, and is responsible for developing their doula and childbirth education programs. She is an approved DONA International Birth Doula Trainer and offers trainings in NYC and internationally.

White Ribbon Alliance - (Short Film)

Conference Co-Coordinator Janae Seignious- Shields: JShields@goodwillny.org - Janae has a Bachelor of Arts with a Major in U.S. history from the State University of New York at Oswego and a Master’s of Social Work from Monmouth University with a concentration in International and Community Development. She is a Class III Green for All Fellow. In 2011, Janae completed the NYC Department of Youth and Community Development Family Development Credential for leaders. Since 2006 she has been working at Goodwill Industries in the Workforce Development Division. Janae co-wrote the proposal that secured funding to start a program to help single mothers become self reliant and empowered. Currently, she facilitates a monthly support group for single mothers. She continues to secure funding and donations to support programming for single mothers at Goodwill. She serves on committees that evaluate Welfare to Work Programs. She is a certified Occupational Safety and Health 10 and 30 hour General Industry Trainer. She also teaches the Roots of Success Environmental Literacy Curriculum to people on and applying for public assistance to introduce them to green career opportunities and environmental justice issues facing people in their communities. She develops training programs and strategic plans to continuously improve quality and efficiency of Goodwill’s Workforce Development programs. She also sits on the Advisory Board for Samuel Gomper’s Career and Technical Education High School in the Bronx, NY. Janae has a commitment to developing programs and services to help strengthen families and address issues of urban poverty, workforce development and environmental justice.
Visit The Museum; 401 East 84th St. (1st Ave.) NYC
Join Our Capital Campaign. DONATE

Joy Rose, Executive Director
Motherhood Foundation Inc. (MFI)

Conference Line 641.715.3200

Access: 720965#

Honoring the Legacy of Mothers In Perpetuity

We are the first and only facility of its kind. The Museum Of Motherhood serves as a valuable resource for everyone including those who wish to honor mother-work and those who wish to study the cultural family, from lay-people, to school children to serious scholars. As an organization devoted to educating the world about the contributions of mothers both historically and in contemporary culture, we intend to fill a longstanding void by focusing on the many roles of mothers throughout history with our physical and virtual library, exhibit facility, traveling productions, and resource center. We honor the many unsung heroes as well as the famous and great and share the remarkable stories of how birthers & caregivers cope, inspire and prevail. There are all types of mothers here: stepmothers, adoptive mothers, activist mothers, mother artists, single mothers, divorced mothers and mothers who successfully navigated married life. The Museum of Motherhood is the house that is home to their legacy.

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Friday, December 2, 2011

World AIDS Day and Down syndrome; where is the cure?

One of my pet peeves was brought to mind by World AIDS Day. Not that I oppose finding a cure for HIV. 
I was a social worker when AIDS emerged in the eighties. I helped a young man with HIV who was kicked out of the loft in Greenwich Village which he had shared with his lover, and was now living miles from a payphone in the country where he slowly died of AIDS.No one was with him.  He covered his mouth in my office, and treated himself as a pariah, asking me to touch the doorknobs for him, since no one knew how AIDS was transmitted. My heart broke with compassion for him, abandoned to die alone. There was very little I could do besides make him comfortable and keep him company in 1985. 
In a little over three decades, we discovered AIDS existed, raised money for research, and found treatments. Now its effectively cured, if only we would admit that it is spread by immoral sexual activity, we could have it under control. I am happy for those who are benefiting. Too bad that young man is not among them. 

 In 1958 Dr Jerome Lejeune discovered trisomy 21, the cause of Down syndrome.  We should have rejoiced that a cure was now possible, and as with AIDS, banded together to raise funds. However, rather than joining him in his efforts to find a cure, which Dr Lejeune described as "taking less effort than sending a man to the moon" (which, by the way was done since T21 was discovered) the March of Dimes spent its millions developing a search-and-destroy methods of prenatal diagnosis, using Dr Lejeune's discovery to find unborn babies with Down syndrome. This led to an abortion rate of 92% for such babies. Some cure. Dr Lejeune watched this happen and dedicated his life to finding a cure, he said, 'I see only one way left to save them, and that is to cure them. The task is immense--but so is Hope."

Did we kill AIDS patients as a means to a cure?  
Or cancer patients?

 Dr Lejeune said, "Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient's side, always."

Why was pre-natal diagnosis and abortion for nearly 50 years considered the end of the Down syndrome story? Sure, its a complicated disease, but so is HIV. I have to think that AIDS patients being movie stars like Rock Hudson had a lot to do with the dedication and  speed with which we found a cure. There are 2.7 million afflicted with HIV in the USA and nearly half a million who have trisomy 21, or 20% of that number. That is still a significant population, yet there were no huge TV specials, no ribbon on the White House, or until recently, no big Hollywood celebrities sponsoring efforts to raise money for Down syndrome research. Instead, researchers like Dr Alberto Costa have to give of their own money to search for a cure for his daughter's Down syndrome.
Like Dr Costa, I have a daughter with Down syndrome. She is no Hollywood celebrity, but don't try to tell her that. Her smile and her can-do attitude brighten her elementary school.  I volunteer full time to raise awareness of the inequity with which people with trisomy 21 are treated. No, not in education, thanks to the Americans with Disabilities Act, she can go to typical school right through college. But in research. 

And in the way it is considered standard medical practice that a woman expecting a child with Down syndrome gets no more than a phone number for an abortion clinic instead of information about how good life is for those with Down syndrome. Thanks to Dr Brian Skotko, whose new survey in the American Journal of Medical Genetics, brings out the fact that 99% of families are happy with their child with Down syndrome, and that the people with T21 are just as pleased with their liives. This is not what expectant women have been hearing. My friends have been told they were selfish for wanting to give birth to their child with Down syndrome, bringing misery upon themselves and their families. Its simply not true. And I am working through KIDS (Keep Infants with Down Syndrome) to change how the diagnosis is treated, especially since with the new diagnostic test, MaterniT21, the diagnosis will be offered more widely and earlier. Doctors will have results at 12 weeks instead of 22, giving women plenty of time to educate themselves about what life is really going to be like for their child with Down syndrome before making a decision to abort. 

I want people like Christina to find the compassion, resources,  and acceptance which is now offered to AIDS patients. Why shouldn't she be treated with equal dignity?
Things are changing. Three years ago, the National Institute of Health formulated a research plan to find a cure for the cognitive delays of Down syndrome, and is now forming a consortium of parents and researchers. The legacy of Dr Lejeune lives on in newly formed Lejeune USA which had a major meeting at the Neuroscience Convention last month in DC (more about that meeting in future posts). UC San Diego Down syndrome researcher Dr William Mobley said, "if you told me a decade ago, I would be discussing clinical trials for a drug to treat Down syndrome cognitive delays, with four laboratories, I would not have believed it". 
  I was heartened by the star-studded fundraiser "Be Beautiful, Be Yourself" offered by the Linda Crnic Institute for Down Syndrome in Washington last month at $500 a plate. Gladys Knight was there and so was my Congressman. We don't want people with Down syndrome to go away, but there is bright promise that within a decade, the significant delays in memory and learning which my daughter endures, may be, like AIDS, on the way to the dustbin of history.

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