Here are the testimonies given at the virtual hearing for H.2409 to defend Down Syndrome babies on June 7th, 2021.
Testimony in Support of H. 2409: An Act Related to Victims of Down Syndrome
In his “Letter from a Birmingham Jail,” Martin Luther King, Jr. said that we are, “...tied in a single garment of destiny. Whatever affects one directly affects all indirectly.”
Massachusetts eliminates approximately half of all Down syndrome people, by abortion, upon a prenatal diagnosis. Removing them has severely frayed our “garment of destiny,” affecting each of us.
In the last 50 years, we’ve made undeniable progress in the fair treatment toward individuals with physical and mental challenges. Consider various legal requirements: Early childhood intervention to address developmental delays; accessibility standards in our buildings; workplace accommodations; web design protocol for the visually or hearing impaired (Exhibit A on that: an accessibility page on your State House website).
Did laws behind each of these advances require sacrifices of time and money? Yes. Have they been worth it? Of course. And we are a more just society because of them. As Dr. King also wrote, “Any law that uplifts human personality is just. Any law that degrades human personality is unjust.”
State law currently permits prejudice, via eugenic abortion, against people with Down Syndrome. The law degrades human personality and therefore is unjust. Committee members, I ask you to support H.2409. Your “yay” vote will protect a person believed to have Down syndrome. A “nay” vote? A vote for continued discrimination.
A 2016 Planned Parenthood fact sheet supports this assertion. In reference to “flaws” of founder Margaret Sanger: it reads “she extended opinions that clearly expressed ableism and exclusion . . .The history of ableism in America is an issue we must all address — including at Planned Parenthood. It is important that we understand our collective history and the legacy it leaves on those still impacted by an unjust system . . .the way to move forward is to address ableism – outside or inside our organization."
Committee members, let’s think about your hypothetical “nay” vote on this bill. The result? A faulty step onto a slippery slope toward widespread, culturally-acceptable subjective discrimination against -- well, everyting. Just consider what further discrimination we might soon allow, when advances in genetic testing reveal the likelihood of:
At Boston’s Holocaust Memorial, an inscription asks visitors to "know that wherever prejudice, discrimination and victimization are tolerated, evil like the Holocaust can happen again." My friends, thank you for listening and for your action to put an end to the evil before us: the unquestionable discrimination against those with Down syndrome.
Honorable Chair and members of the Committee
I am a retired nurse practitioner and volunteer at a crisis pregnancy center in Worcester. My work consists of counseling women in a crisis pregnancy about their options. They are three: carry their baby to term, place their baby for adoption or abort their baby.
It is through this work that I have become familiar with the pressure placed upon women to abort their baby when that baby is diagnosed in utero with Downs syndrome.
In Massachusetts, 49% of women carrying a baby with Down’s syndrome choose to abort their baby, a very sad fact indeed. Sadder yet, however, is that women coming to our agency frequently think abortion is actually their only option. Women who want to keep their baby with Downs syndrome, regardless of whatever physical or intellectual disability their baby may grow up with, consistently relay stories of being unduly pressured to abort the baby. The recommendation may come from their provider only once or on every subsequent visit. Alternately, there may be several different health care providers urging a woman to seek abortion as her best option. In a few instances, women have described having to “fight” for their child’s life. Women and parents-to-be come to us seeking education and support because they are not finding it where they would most likely expect to receive it – from their obstetrician or midwife. In the medical community, there is oftentimes a bias against babies, who are less than perfect, being born. There is not an honest and fair presentation of options being offered to many parents.
H.2409 seeks to stem the tide of discrimination against unborn children diagnosed with Down syndrome It does not ban any abortion. It merely prohibits an abortion provider, who knows a pregnant woman is seeking an abortion based solely on a prenatal diagnosis of Down syndrome, from performing the abortion. She is free to seek an abortion from another provider. And we know that access to abortion is not an issue for almost all women living in Massachusetts.
A diagnosis of Down’s syndrome should not be an automatic death sentence for a baby, nor a lifetime of regret for a woman who had an abortion thinking it was her only choice. As you have heard and will hear, persons with Down’s Syndrome can go on to lead normal productive, and fulfilling lives, while at the same time enriching the lives of those around them.
I urge you to support the passage of H.2409, An Act Relative to Unborn Victims of Down Syndrome. Thank You.
Massachusetts State Capitol Testimony Down syndrome Law
In May 2003 my beautiful daughter Chloe was born. Shortly after her birth, she was diagnosed with Down syndrome. During my wife’s pregnancy we were advised that we were at high risk for having a child with Down syndrome due to my wife’s age of 40 at the time. We were offered prenatal Down syndrome tests, which we refused, and we loved and treasured our Chloe from the moment of conception.
When Chloe was born, I was serving as a Pittsburgh police officer, and my mission always was to defend and protect, especially the most vulnerable among us. I served 20 years as a Police Officer. When I asked medical professionals what we could do after the tests I was told we could make a decision whether we wanted to keep our daughter or not which shocked me as a cop. If someone came into the hospital trying to hurt others I would do everything I could to stop them but medical professionals were telling me I could terminate my daughter in the hospital if I did not like her test results.
After Chloe’s birth I began speaking to families who had the prenatal Down syndrome tests, and I was shocked to learn that every family I communicated with was advised to terminate the pregnancy once the Down syndrome diagnosis was given. Many were told the child would be a “burden” on their family and unable to function in society. This deeply disturbed me as I watched my daughter grow and become an amazing young lady with many ABILITIES. As a police officer I always sought the facts, and I decided to leave my law enforcement career to advocate for children like Chloe and make sure society was aware of the truth about these awesome individuals.
Chloe and I began making regular trips to the Pennsylvania Capitol to show policymakers how people with Down syndrome can be fully included in schools and communities with the right services. We encouraged bipartisan legislators to invest in these supports so people with Down syndrome could have a great life.
I shared videos of Chloe reading at age three and told of all the other incredible outreach and activities she was involved with – she reads better than most cops I worked with. Chloe plays baseball and volleyball, loves to golf, attends high school, goes to dances, enjoys church, is manager on two basketball teams, has many friends, likes to go out to eat, adores her brother, Nolan; and has received several awards for her advocacy. She is even on and in a book “Brilliant Souls” about the gift of Down syndrome, and the book is all over the world – I will send you a signed copy if you like!
Chloe has been invited to the United Nations twice (due to an extremely high termination rate in Iceland for prenatal Down syndrome diagnoses), appears in many media articles and in a book, has met the president and vice president at the White House, had her picture with the Vice President hanging on the West Wing Wall of the White House and has had her picture appear on the big screen in Times Square five times. She also is featured in a global video about Down syndrome that has reached millions in several languages.
In addition, she has advocated for state legislation (Chloe’s Law) which gives factual, supportive information following a Down syndrome diagnosis. Chloe LOVES life! Does this sound like a person who is a “burden” and unable to function in society?
In our great nation it is illegal with severe penalties and fines to harm or destroy an eagle or turtle egg because they are endangered species that could easily become extinct if not defended and protected. What is an eagle or turtle egg - An unborn species? Prenatal individuals with Down syndrome represent an unborn species of people who are being systematically eliminated from the earth and are currently endangered in many countries – in Iceland they are extinct the past 7+ years. Don’t these people deserve the same protection as endangered animals? In 1973 we criminalized killing our most vulnerable animal species prenatally and postnatally with the Endangered Species Act, and in 1973 we legalized killing our most vulnerable human species with the legalization of abortion. Isn’t it time to defend all our most endangered and vulnerable species?
In 2015 Pennsylvania Gov. Tom Wolf announced a moratorium on all executions in my state because of concerns about the death penalty system. I agree that we must be 100 percent sure a person is guilty of a crime prior to punishment being administered. Innocent children diagnosed prenatally with Down syndrome are receiving a death sentence when they are identified, targeted and terminated for not meeting the misguided cultural mandate for unattainable perfection. Isn’t this an absolute miscarriage of justice and the ultimate form of a hate crime?
For people who believe in tolerance, inclusion, diversity and acceptance, this prenatal genocide represents the most extreme form of prejudice, profiling, bias, intolerance, bigotry, exclusion and hate. In my 20-year law enforcement career, I never recall seeing or reading about a person with Down syndrome committing an act of violence, malice, hatred or evil. Chloe doesn’t care what your political party is, where you live, how much money you have, what you drive, what your title is, what color your hair is, how tall you are, what you look like and anything else our lost culture is obsessed with. Isn’t this unconditional love, genuine kindness, real acceptance and pure joy exactly what our world needs right now?
I am taking time to speak to you today to urge you to pass H. 2409, which will place a moratorium on Down syndrome prenatal terminations and restore an inclusive culture of life where people “Embrace, don’t erase” Down syndrome. As prenatal testing rapidly advances, we should all be asking, who will be next to receive a prenatal death sentence? What if in the near future there is a prenatal test for Autism, Depression, baldness, ADHD, OCD, red hair, shortness, anxiety, and the list goes on and on.
If we were living in America in 1860 we would hopefully be working nonstop to end the institution of slavery in this country and many would have told us that was not possible. I am asking you to please join together in making history in Massachusetts and restoring a culture of LIFE that welcomes, accepts and EMBRACES all people like my beautiful daughter Chloe. “EMBRACE don’t erase” Down syndrome.
THANK YOU for allowing me to speak here today, and I wish you, your families and wonderful citizens all of God’s Blessings and Goodness.
Kurt A. Kondrich M.Ed
Good morning/afternoon Madam Chairs and committee members.
I am Patricia Stewart, Executive Director of Mass. Citizens for Life, and I support H.2409.
The National Association for Down syndrome advises that “the most important fact to know about individuals with Down syndrome is that they are more like others than they are different.”. Importantly, a Down syndrome diagnosis is not a death sentence. A child born with Down syndrome has an 88% chance of reaching the age of 20. Many go on to live into their 60’s and 70’s.
Despite developmental delays, individuals with Down syndrome and the proper medical assistance, achieve success: many elementary-age students attend regular schools; high school students graduate with degrees and go on to post-graduate studies. Many adults with Down syndrome keep a job. Some even become celebrities.
During 2013-2014 (the most recent reporting period), Down syndrome was the most common birth defect in Massachusetts. Despite encouraging facts for a life of promise, the incidence of abortion in Massachusetts, based exclusively on a prenatal diagnosis of Down syndrome, is an alarmingly high 49%. By comparison, the next most prevalent birth defect in that time period was cardiovascular with an abortion rate of less than 1% (.087%). These figures indicate how far we have come on a morally troubling path toward a society that decides what type of life is worthy of existence. Down syndrome has been called the “canary in the coal mine” for selective reproduction. H. 2409 aims to redirect our path.
Bioethicist Rosemarie Garland-Thomson of Emory University coined the phrase, “velvet eugenics,” referring to the commercialization of reproductive services. “Velvet” connotes the subtle manner in which the eradication of disabilities is promoted. The skyrocketing rate of abortion for a prenatal Down syndrome diagnosis raises the specter of eugenic practices of the past, which modern American society resoundingly rejects. Unless it is stopped, this Massachusetts version of “velvet eugenics” will eradicate generations of children with Down syndrome, until there are none.
H.2409 will curtail discrimination against unborn children with Down syndrome. It does not ban any abortion. It prohibits an abortion provider, who knows a pregnant woman is seeking an abortion based solely on a prenatal diagnosis of Down syndrome, from performing the abortion. The woman is free to seek an abortion from another provider, who is ignorant of such fact.
Abortion access in Massachusetts is available and convenient: according to the Guttmacher Institute, 87% of women live in counties with abortion clinics, and 59% live within 15 miles of an abortion provider.
None among us is perfect, but we all have the innate ability to contribute to the fabric of society, just by being alive. H.2409 will preserve the life of people with Down syndrome and secure their potential to further enrich Massachusetts’ life and culture.
For the foregoing reasons, I ask that you give H. 2409 a favorable report.
Thank you for the opportunity to comment.
As a Family Physician of more than 35 years, the majority of which has been in the Commonwealth, I have had occasion to care for many individuals with Down syndrome. I speak in support of H.2409 which would protect these people from genetic discrimination.
Down Syndrome is associated with developmental delays and other birth defects. Nevertheless, almost 90% live beyond age 20 and many live into their 60s and 70s. They are generally very happy and affectionate people who lead fulfilling lives but half of them are killed before birth in Massachusetts.
The people with Down syndrome who I have cared for are among the most lovable and innocent individuals that I have known. We can learn a lot from them. A study from 2011 in the American Journal of Medical Genetics found that 99% of people with Down syndrome are happy with their lives. 99% of parents said that they love their child with Down syndrome and 97% of brothers and sisters ages 9-11 said they loved their sibling.
As human beings; as a society; we must seriously reflect on what kind of people we are if we allow people to be destroyed simply because of a genetic handicap. We also need to ask ourselves who has the greater defect; a person with an extra chromosome or the person who believes that such individual should be allowed to be killed.
Mark J Rollo, MD