Sometimes I think I like to torture myself with troubling thoughts.  Why?  I have no idea.  I worry about things I can’t change.  I dwell on the past.  I burden myself with research that causes heartache.  Today, I blame a dear friend for my latest trip to humanity’s darkest hour.  Of course, my quest for knowledge (and later sorrow) was not her fault.  She was merely sharing her latest global-trekking adventure with me over dinner.  I listened and asked questions. She painted a picture of horror, evil, pain, and hatred—the closest mankind has been to Hell, in my humble opinion.  Her destination?  Auschwitz, an extermination camp under Hitler’s powerful regime.

In honor of World Down Syndrome Day (3-21– Get it? Trisomy 21), I decided to take a look at how far we have come.  Don’t get me wrong; we still have a long way to go!  We sometimes get complacent in our advocacy. We shouldn’t for those we have lost, for those who didn’t have a chance.

Why should we look to the past?  The Disability Rights Advocates (DRA) state:

“History matters.  Remembrance of the mass barbarism of the Holocaust for people with disabilities is critical to a current understanding of both (a) why and how people with disabilities continue to be marginalized and (b) the attitudes and moral failures that allowed the Holocaust to happen” (2001).

I was drawn to write this based on three faces etched into my memory.  One of those faces will continue to haunt me.  I stumbled across the young man in researching after my conversation with my friend.  He, most assuredly, did not survive the disgusting, inhumane, and barbaric acts of World War II.  The other is the face of Anne De Gaulle.  She did live through World War II in France. The last face is that of my great-uncle pictured below.  He led a very different life in the United States during this time period.

Hitler exploited and murdered those with disabilities in his efforts to create the “perfect race.”  Those with disabilities were considered “degenerates” and “useless eaters.”  “Life not worthy of life” was coined to describe this special population (DRA, 2001). He quickly went to work with a sterilization process to ensure those with all types of disabilities (not just intellectual disabilities) could not reproduce.  The next phase was mass extermination through the Aktion T-4 program. Sadly, many families willingly participated in this program and handed over family members with disabilities because of the Hitler’s infamous propaganda that encouraged not burdening the nation.  Some felt this to be humane and logical.

Physicians were asked to complete questionnaires on patients in long-term hospitals, sanitariums and asylums to determine if patients were “worthy of life” (DRA, 2001).  And, morale in the killing centers was to be kept high through frequent parties and ceremonies. In 1933, the government formally authorized the killing of babies with any deformities, paralysis, deafness, blindness, and Down syndrome (2001).  Babies who received a “+” were marked for extermination.  Parents who did not want to participate in the program were told their babies were being taken to a special care facility.  Experiments and eventual death were destined; however, parents were told the babies died of pneumonia and other “natural” ailments. Soon, the killing progressed to anyone with a disability.  Hence, the image of the young man burned into my memory.  The face haunts me–the face of a young man with Down syndrome who looks eerily familiar.

Meanwhile, a leader was rising to power in France; the leader was known as “Papa” to a little girl with Down syndrome.  Anne de Gaulle’s father, better known as Charles de Gaulle, was often considered impossible, arrogant, and unreasonable.  However, in a time when Hitler was exterminating those with disabilities, de Gaulle and his wife insisted on raising Anne at home.  His other children were not to treat her differently.  Prior to the outbreak of WWII, de Gaulle would take private strolls with his daughter and order gates to be closed to ensure people would not stare at her.  In addition, he would order a car to drive him 85 miles at night so that he could rock Anne to sleep.  He referred to Anne as “My joy…she helped me overcome the failures in all men, and to look beyond them.”  With the exception of saying “Papa,” Anne was nonverbal. When she died at age 20, Charles de Gaulle stood with his wife at his daughter’s grave and said, “Maintenant, elle est comme les autres” translated “Now, she’s like all the others” (McClarey, 2009). In a time of such hatred and animosity, Anne serves as the glimmer of hope, love, and acceptance.

Finally, we come to the third face—my Uncle Bobby.  Bobby was born at the height of World War II and would have most assuredly received “+” on his questionnaire had he been born at the same time in Germany.  Born to a rural, poor family, physicians never diagnosed Bobby as being “retarded” or “a Mongoloid” (terms used during the period).  He was merely “different.”  Institutions were to provide a higher level of care, to teach, and to lessen the financial burden on the family.  Nevertheless, Bobby remained at home with nine siblings. His older sister moved to New York City and learned about Down syndrome.  She wrote her mother to tell her what was “wrong” with Bobby.  Bobby was kept at home.  However, I am told he would recite every sermon he heard on Sunday morning and knew most of the common church hymns.  I wish I could have introduced him to Caden.

Three faces—three different outcomes from the same time period.

As we celebrate World Down Syndrome day, I ask, “How far have we come?”

Some doctors still present a “doom and gloom” picture of Down syndrome.  But, WOW!  Look at how outspoken people are about how their children have enriched their lives!  Germany has support groups, offers educational opportunities, and therapy programs.  Ireland, who does not allow abortions, openly accepts children with Down syndrome. While we may argue the flaws in each, the United States grants free and appropriate education, maintains the Americans with Disability Act, and discourages discrimination. The list goes on and on.

We still have countries that have not advanced.  For example, Denmark is hoping to become a Down syndrome free society (http://www.scancomark.se/Competitiveness/Plans-on-the-way-to-make-Denmark-a-Down-syndrome-free-perfect-society.html). A few years ago I visited a Down syndrome center in the Bahamas and listened to parents who said their children were kicked out of schools or were moved to other schools on other islands.  Why?  The schools were tired of dealing with special services and extra assistance needed.  Many were being forced to home school.

As we advocate on this World Down Syndrome Day and progress into the future, let us not forget those who suffered and died (or continue to suffer and die) because of how they look or act. Today, let us strive for equality, compassion, acceptance, and peace. And, remember the words of William Faulkner, “Never be afraid to raise your voice for honesty and truth, and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.”  History would have been rewritten, if people had taken a stand against one little man with a loud voice—one man who had a voice loud enough to cause so much death and destruction.

References:

Disability Rights Advocates. (2001) Forgotten Crimes: The Holocaust and People with Disabilities. Oakland, California: DRA.

McClarey, D. (2009). Anne de Gaulle. Retreived from http://the-american-catholic.com/2009/10/28/anne-de-gaulle