On March 20, the Permanent Observer Mission of the Holy See to the UN held a side event during the Commission on the Status of Women entitled “No Room in Rural Villages, Cities or Homes for the Disabled? Are Boys and Girls with Down Syndrome Being Left Behind?” in collaboration the Center for Family and Human Rights, the Pujols Family Foundation, the Jerome Lejeune Foundation, and the newly released film “Summer in the Forest.” The event was held in light of World Down Syndrome Day, which the UN General Assembly in 2011 decreed to be celebrated March 21, or 3-21 in numerals, for its scientific name Trisomy-21.
Archbishop Auza, Permanent Observer of the Holy See Mission to the UN, said that most boys and girls with down syndrome experience lethal discrimination before they take their first breath through disability-selective abortion after parents receive genetic testing.
“At the United Nations there is much sincere talk and passionate action to fight against any form of discrimination,” Archbishop Auza said, noting the UN Convention on the Rights of Persons with Disabilities, adopted in 2006 which aims to “promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities,” including “those who have long-term physical, mental, intellectual or sensory impairments,” and to “promote respect for their inherent dignity.”
But, he added, “Many members of the international community stand on the sidelines as the vast majority of those diagnosed with Trisomy-21 have their lives ended before they’re even born,” he said, “Rather than stop it, some in the international community are abetting it,” pointing to a recent instance in which a member of the UN Human Rights Committee promoted abortion for children with Down Syndrome to “avoid the handicap.”
While raising any child, including a child with Down Syndrome can be challenging, researched published in the American Journal of Medical Genetics by Harvard University Researchers shows that 99 percent of people with Down Syndrome are happy with their lives, 97 percent said that their outlook on life was more positive because of their child, and 94 percent of siblings said they were proud to have a brother or sister with Down Syndrome.
“Down Children and their families are simply among the happiest groups of people alive — and the world is happier because of them,” he said.
Dr. Mary O’Callaghan, Developmental Psychologist at the University of Notre Dame and a mother to a boy with Down Syndrome, said that laws that explicitly allow for abortion on grounds of impairment violate the International Convention of Rights of Persons with Disabilities.
“The extent of disability selective abortion worldwide is so vast. Disability selective abortion as a rights violation must be taken seriously,” she said, pointing to the many countries such as Iceland and Denmark whose abortion rate for children with Down Syndrome is virtually 100 percent, with many of these States' providing funding for parents to receive pre-natal screenings.
Deidre Pujols, vice president of the Pujols Family Foundation, wife of Los Angeles Angels player Albert Pujols, and mother of Bella Pujols, her 20-year-old daughter with Down Syndrome, spoke out against the genetic testing that discriminates against children like her daughter, and leads to judging a person’s value based on his or her mental and physical condition.
“Populations of people who are profiled before their first breath,” she said. “Instead of using science to better the health and well-being of individuals with Down Syndrome, some have instead have used science to detect the condition in an unborn child and end his or her life.”
Some panelists testified that a Down Syndrome diagnosis does not deter individuals from pursuing their goals and impacting their communities.
Minnesota-born Mikayla Holmgren, 23, recently made headlines as the first person with the Down Syndrome to compete in a Miss USA Pageant, and won the Spirit of Miss USA Award.
“I did not win the crown, but I won so much more,” she said. “I was able to show the world that people with Down Syndrome have beauty that starts from the inside out.”
Holmgren, who now attends her parents’ alma mater, Bethel University, uses her platform as a “voice for those who cannot speak.”
“There are countries that would like to get rid of people like me. That makes me sad,” she said.
Like any typical fourteen-year-old, Chloe Kondrich enjoys playing sports, watching Youtube videos on her iPad, and attending school dances at her high school. But unlike her peers, she has also won an Emmy Award, appeared in multiple billboards in Times Square, met President Donald Trump, and is the namesake of a Pennsylvania law that requires doctors to provide women whose children receive a Down Syndrome diagnosis in utero with supportive information on how to best care for their child, rather than merely advise them to undergo abortion. Chloe has Down Syndrome, but her extra chromosome has, in many ways, contributed to her extraordinary life.
Her father, Kurt Kondrich, retired from as a police officer to become an advocate for children with Down Syndrome and is currently working, with his wife Margie Kondrich, to pass another Pennsylvania bill that will ban discrimination of children with Down Syndrome through abortion.
“As a police officer, I thought here’s a group of people who I’ll never have to arrest, but I learned they’re being killed systematically,” Kondrich said. “I thought, ‘Not on my watch.’” He was appalled, he said, to see more legal protection for unborn turtle eggs, than unborn children with disabilities.
“Now I like animals, but I don’t think we should criminalize killing animals but legalize killing children,” he said.
Dr. Patricia White Flatley, who specializes in the biomedical research of Down Syndrome and is a mother to a son with the condition, said that scientific research has not only “enabled individuals with Down Syndrome to live longer, fuller lives and to participate more fully in their schools, communities and in the workplace,” but has also led to important findings for the health of the general public.
In addition to the cognitive, speech and learning impairments associated with the disorder, those with Down Syndrome are more likely to have heart abnormalities, autoimmune disorders, and leukemia than the general public, but less likely to have cardiovascular disease, strokes, and certain tumors like breast cancer. The presence of extra genetic material on the additional 21st chromosome could be the key, and the research, which has now caught the attention and funding of pharmaceutical companies, has led to clinical trials that can yield better health for people with many of the related diseases.
“This is truly a new era for Down Syndrome,” Dr. White said.
Randall Wright, producer of the new film Summer in the Forest, uses storytelling to highlight the dignity and joy of people living with Down Syndrome.
“It’s made with very high production values,” he said. “I wanted to film them with the same intention and respect that would be given to a celebrity.”
To watch the event in its entirety, click here.
To read Archbishop Auza’s full remarks, click here.