Monday, January 28, 2013

No Place Like Home

After I got married and before I had my first child, I worked in a life skills center for disabled adults.  This is Edgar, his was 62 at the time this photo was taken and yes, he has Down's Syndrome.  As an infant in the late 1930's, he was placed in an institution because his disability made him unsafe and put his siblings at risk.  

*note: please try and ignore my overly large pregnant-ness in the pic :)

I'm not sure I can comprehend, as a mother, sending my child off to an institution.  At least, that's my initial thought.  But if I am honest, and if I were Edgar's mother and the whole world was fear mongering about how dangerously unpredictable he would be and about how taxing it would be, how difficult, how alone I would be, I might have listened too.  During that era, with so little help and compassion in regards to disabilities or mental health challenges, was there really another option for Edgar's mother?  

Just to give you an idea, here is a Disability History Timeline for the world Edgar was born into:

Eugenics is a term that was coined by Sir Francis Galton in his book Essays in Eugenics. Americans embraced the eugenics movement by passing laws to prevent people with disabilities from moving to the U.S., marrying or having children. Eugenics laws led to the institutionalization and forced sterilization of disabled adults and children.

The Threat of the Feeble Minded (pamphlet) created a climate of hysteria allowing for massive human rights abuses of people with disabilities, including institutionalization and forced sterilization.

The Commonwealth of Virginia passed a state law that allowed for sterilization (without consent) of individuals found to be “feebleminded, insane, depressed, mentally handicapped, epileptic and other.” Alcoholics, criminals and drug addicts were also sterilized.

The Buck v. Bell Supreme Court decision ruled that forced sterilization of people with disabilities was not a violation of their constitutional rights. This decision removed all restraints for eugenicists. By the 1970s, over 60,000 disabled people were sterilized without their consent.

The U.S. Supreme Court upheld Commonwealth of Virginia eugenic laws as constitutional. Justice Oliver Wendell Holmes equated sterilization to vaccination. Nationally, twenty-seven states began wholesale sterilization of “undesirables.”

World War II began. Hitler ordered widespread mercy killing of the sick and disabled. The Nazi euthanasia program (code name Aktion T-4) was instituted to eliminate “life unworthy of life.”  I learned about this over the summer when my husband and I visited the Holocaust Museum in Washington D.C.  I stood and cried and cried, thinking of my sweet children and the hundreds of thousands like them that were euthanized and cremated under Hitlers rule.  

Please don't misunderstand, I am not judging Edgar's parents.  I am actually quite compassionate to their plight.  I have no doubt it was the most difficult thing they ever did.  And I would guess, his mother spent everyday of her life thinking of him, wondering how he was, what he must look like, if  he was ever violent, if what she did was right?  

This (institutionalization) is something that's been on my mind a lot recently as I've had to contemplate sending Bruncle to residential care for mental health treatment.   It's the last in a long line of resorts.  And every time I have thought about it, my mind goes to Edgar.

Edgar lived in that institution until some time in his mid-50's when a young couple adopted him.  They took him into their family as one of their own and they couldn't have been more than 35-40 years old when they did it.  It was under their care that Edgar came to be a client at the day center where I worked.  Every morning he would come in, pausing at the door, arms out-stretched, toothless ear-to-ear grin beaming and holler, "Honey. I'm home!"  He had a zest for life like unto any toddlers.  He loved to run and play and color and pop bubbles.  He relished his pb&j sandwiches everyday at lunch and he gave the very best hugs and kisses.  He was always so joyful and I'm sure that was a direct result of the love he received in his new home.  I never had the privilege of meeting that couple, Edgar's adoptive parents, but their love for Edgar inspires me to be a better mother.  It gives me hope and a clear understanding that the best place for any child, any individual is in a loving home, that safe environment where we are allowed to be gloriously imperfect and loved for it.  Not loved despite our imperfections; loved because of them.  It inspires me to create that place for my children and to keep them there as much as possible.  It gives me the strength I need to carry on.  To everyday keep loving Bruncle to the best of my ability and know that by doing that, I am doing the best thing, the right thing for him.  Even if at some point short-term residential treatment is necessary, love--like the kind Edgar's adoptive parents have for him-- keeps that option in its rightful place as a very last resort and will keep Bruncle's place at our table warm, waiting for his return.

On a side note: if you are interested in knowing more what life raising a special needs child in the 1950's would be like, check out Keeping Keller by Tracy Winegar.  It is seriously a great depiction of the challenges that face families of children with special needs.

1 comment:

Tracy said...

Thank you for including me in your insightful post. It was an honor!