I will never forget seeing her lie there. She was such a happy, bubbly baby girl. She smiled and cooed in delight as anyone came near her grey metal crib.
Her name was Jody and they had placed her in the crib next to my bed on the ward because, as they said, we had so much in common, she and I.
So much in common…I cried inside. I had never seen another child like me. I watched her day and night as she cheerfully entertained herself with her hands, lying unnaturally, flat on her back already swaddled in physical restraints they thought were therapeutic. So much in common, she and I…I cried inside.
So much in common…I watched her parents come and visit---her father always firmly escorting her tearful mother away, down the corridor after each short visit of looking at, but never holding, Jody. Her father escorting her away…leaving Jody alone without her mother, without her father…I cried inside.
So much in common…the big, grown up people who were supposed to be so smart, talked of Jody needing the “special care” of other institutions and hospitals far from home, of how any loving parent or professional would do the same. It was 1960 and few people realized.
So much in common…they wondered if she could be intelligent enough to even learn enough for any quality of life…and they put her in the crib next to my bed because, as they said, we had so much in common, she and I.
I will never forget those few days with Jody near me, playing happily with her hands, trusting us all. I watched her day and night. I cried inside. I had never seen another child like me before. My heart broke. Until then, I thought that maybe I was such a horrible child that it had to happen to me…that maybe it was God’s will but that no one else could ever possibly be treated the way I was because no one else could ever possibly deserve it…then I saw Jody and she was such a happy, bubby baby girl. There was nothing terrible or ugly or horrible about her. Just her body did not work…and they assumed her mind did not either.
I watched her day and night. My heart broke…and my heart broke again, as I sat there silently watching her parents one day, sitting so close to me, so sad themselves, and yet still signing the papers…so much in common, she and I.
And now, years later, I still remember those few days better than I remember this morning’s breakfast. I look back and see myself so clearly, an eleven year old disabled, tiny, scrawny girl, all cheekbones and eyes, living in a world of fear and socially imposed
Jody—page 2 Candace Cole-McCrea
and self imposed isolation. I had withdrawn from the world of people the way a small animal withdraws from predators. I was silent, hidden, trying to shelter myself somewhere deeply away from others, deeply under my own skin, so deeply that I hoped not to feel the relentless psychic, physical and soul pain that always threatened to drown me. Maybe, if I could only withdraw deeply enough…even if I could not stop them from torturing my body and shattering my heart…maybe, at least I could stop them from reaching, torturing and wounding my soul. I wanted something of me that was mine, unhurt, pure…that no one could reach, control or destroy. I stayed hidden, even from myself. No tears, ever. No one ever got through-no one…until Jody.
Jody. I lay on my little grey metal framed bed and watched sweet, cheerful Jody and learned a truth about American cultural life—THEY WERE GOING TO DO IT AGAIN! Something in me changed that day that has never seen people the same way since. I realized that we, as humans, often do things just because we are taught to, told to, “know” we are right, or do not have or want any other ideas of what else to do. We have opened ourselves up to myths but are not willing to work together to find good life-respecting solutions for ourselves, for ALL other people, for ALL life on earth…not willing to incorporate what is good in the lives of people different from ourselves. It can be that we do not even think they are worthy of our efforts or receptivity. We discredit them on the basis of our own knowledge system or on the basis of official diagnosis as dangerous or stupid. I learned that Naziism is not just German-made.
THEY WERE GOING TO DO IT AGAIN! THOUGH JODY WOULD REMAIN PHYSICALLY ALIVE, THEY WERE GOING TO TAKE AWAY HER LIFE! Her parents were already questioning how it was that God could have given them such a child! I watched their pain, saw their tears, felt their grief and wanted to cry out to them, to professionals, to common people, to everyone:
WHAT IS SO HORRIBLE ABOUT HAVING A CHILD LIKE ME?
WHY IS A CHILD LIKE ME A CURSE TO BEAR?
WHY DOES MY BEING ALIVE MAKE YOU SO UNHAPPY?
ARE ONLY PERFECT WHITE BABIES HUMAN—TRULY PEOPLE?
WHY CAN’T JODY AND I BE PEOPLE TOO?
WHY IS IT YOU CONDEMN ANYONE YOU DO NOT LIKE?
WHY DO YOU OFTEN LIKE EVEN MEAN PEOPLE BUT YOU WILL NOT EVEN LOOK AT US?
DO YOU REALLY THINK THAT GOD HAS PUNISHED YOU AND US?
Jody—Page 3 Candace Cole-McCrea
WHY ARE OUR LIVES SEEN AS WORSE THAN DEATH…WHY DO YOU THINK WE ARE BETTER OFF DEAD?
WHY WOULD YOU EVEN THINK THAT YOU ARE GOOD AND FULL OF TRUTH WHEN YOU USE YOUR HEARTS AND MINDS TO DEGRADE OTHERS?
I wanted to know but I did not ask. I never asked. I rarely spoke. I had learned. They didn’t know so very much, these people who thought they did, and they could not answer me. They did not know. They just were sure they did know. They would be angry if I asked. I had learned. Do not ask!
But Jody changed my life. I vowed that morning at age eleven that I would grow up and speak…I vowed that early morning when I first awakened and saw Jody’s crib empty. They had taken her away to a new facility while I slept. I cried inside and, for the first time in so, so many years, I cried outside and while I cried, outside, I SCREAMED on the inside. Alone, not calling attention to myself so as not to bother or upset anyone, I screamed inside:
THIS HAS TO STOP…SOMEONE HAS TO STOP THEM. SOMEONE HAS TO TELL THEM…SOMEONE HAS TO TELL THEM THAT THERE ARE REAL PEOPLE INSIDE OF BROKEN BODIES…INSIDE OF BROKEN MINDS…INSIDE OF BROKEN HEARTS…INSIDE OF BROKEN SOULS…THERE ARE REAL PEOPLE INSIDE…GOD MADE US TOO…WE ARE HIS CHILDREN TOO…
SOMEONE HAS TO TELL THEM…THAT IT IS NEVER SMART OR RIGHT OR INTELLIGENT TO SAY OR DO WHAT HARMS OR DEHUMANIZES ANOTHER…THIS IS NEVER WISDOM OR TRUTH, NEITHER SCIENTIFIC NOR SPIRITUALLY. THIS HAS TO STOP. WE NEED TO LOVE AND SUPPORT EACH OTHER. THIS HAS TO STOP…ALL OVER THE WORLD, CONDEMNATION BY WHATEVER “HOLIER THAN THOU” NAME IT IS CALLED, IT HAS TO STOP.
For the first time in my life, I truly prayed, from my heart, from the center of my being, for myself and for humanity. “Dear God, whoever you are, please help me not to hate them or hold it against them ever, no matter what. Help me to grow strong, to show another way, to forgive, as I have heard someone said once before, ‘They know not what they do.’”
Years and years and years have gone by. As I approach age 60, I realize there has never been a day when I have not thought of Jody and held her in my heart. And as I have lived within this gift of time-life, I have wondered so about Jody…
Did they rape you too, Jody?
Jody—page 4 Candace Cole-McCrea
Beat you with belts?
Encase you in plaster?
Treat you like you were too stupid to understand? To love?
Yell at you if you cried?
Did they hate looking at you and did it show in their faces when they did?
Did they light candles and say prayers hoping you would change and become
Did they leave you in body excretions with bed bugs and bed sores and say they
Were giving you their best care?
Did they try to make you pretend with them that all this was right and that it was
Did you live to grow up?
Did you ever get free of walls, restraints, pain and fear?
Do you have memories of your parents beyond that they left you there?
Did you ever go to school and get treated like a real person there?
Did you ever find people who did not look at you in disgust or shame?
Did you ever find people who did not think that the way you thought or felt was
inferior because they thought differently?
Did you ever meet people who did not perceive you as an inferior form of life?
Did you ever get to eat what you wanted, to wear what you chose, to go where
you chose, to say as you will without anyone getting upset at you?
Did they ever let you grow up and treat you like you were grown up?
Did you ever get to live long enough to know the wonders and beauty of aging?
Jody—page 5 Candace Cole-McCrea
Were you ever loved?
Did you ever get free of walls, restraints, pain and fear?
I DID, JODY.
AND I HAVE KEPT MY PROMISE.
JODY, I GOT TO BE FREE.
I NEVER EXPECTED IT, BUT, JODY, CAN YOU IMAGINE…DID YOU EVER GET TO KNOW WHAT IS OUT HERE IN THE BEYOND…
I DID, JODY.
HERE IS WHAT THE WORLD TRULY IS…HERE IS WHAT I HAVE FINALLY BEEN ALLOWED TO LIVE…HERE IS WHAT GOD TRULY MADE FOR US ALL…THIS IS THE WORLD HE GAVE US BECAUSE HE LOVES US SO…HERE IS WHAT HE GAVE US…
Jody, do you hear me?
I got to see
Balloons and flowers and sunsets and goldfish and dirt and tadpoles and oceans and mountains and sidewalks and movies and butterflies and airplanes and grocery stores and hurricanes and kite tails and leaves falling.
I got to hear
Trumpets and whispers and parakeets and car engines and music boxes and children playing and sparrows eating and vacuum cleaners humming and neighbors talking and choirs singing and families laughing and raccoons calling and drums beating and motor boats racing and teachers offering and swing sets rusting and winter winds loving.
Jody—page 6 Candace Cole-McCrea
I got to do
House cleaning and piano playing and flower gardening and snow balling and tub bathing and husband loving and belly laughing and heart crying and flirt playing and school learning and and pencil drawing and poetry writing and Sunday sharing and laundry washing and holiday cooking and child adopting and friend talking and bill paying and money earning and children launching and home living.
I got to feel
Walking and back rubs and snow burns and summer sun and morning showers and shampoo and toothbrushes and kitty cats and exhaustion and icy chills and overworked and flu aching and lonely-angry, and grief stricken and happy hugging and friendship sharing and joy and love and forgiveness and goodness and Grace. I got to feel one son being born, Jody and adopt and help save the life of another…and I have known my husband’s love…can you imagine Jody, can you imagine?
And then, Jody
As if that were not enough…
I was finally allowed to think, Jody.
They finally let me think…
And no one punishes me or criticizes me or belittles me for it or treats me like I have offended them with my thinking…or with my knowing…
Can you imagine, Jody?
Did you ever get to know
How it is to finally be
Free to think and say what you think and have learned…and to be respected for it, even if what you say is different than what everyone else in the room thinks or wants to hear?
Free to think and to speak with no one trying to take that away, criticize it, medicate it away or change it into what they want you to think….
Freedom to think and to speak as long as I am respectful…Freedom to have my own experience, my life, my work, my home, my self…treated with respect…Freedom to live…
But even more important, to have been given the Grace, the life in which to learn, to remember, with every breath, with every difficult step or wheelchair turn…to always hold in my heart the truth of the past…but always also…the truth of the present, the truth of the future, everywhere, in all nations, nooks and crannies of Earth…
Jody—page 7 Candace Cole-McCrea
That ALL people…
The bent, the broken, the mindless, the soul hurt, the black, the brown, the white, the red, the man, the woman, the child, the aged, the addicted, the unborn, the educated, the ignorant, the right, the wrong, the violent, the gentle, the believer, the unbeliever, the rich, the poor, the authority, the client, the scholar, the unlearned, the boss, the worker, the troubled, the grief stricken, the fearful, the courageous, the resilient,…
“So Much in Common”.
Post Script: Thank you, Jody, and to all other “Jodys” out there, to include my niece, Jayln, who struggles with such dignity with Fredrick’s Ataxia. You have each been a great teacher. Thank you for giving me and so many others a reason to believe in self determination and to help each other find our own humanness. And thank you to my sister, Jacqueline, who has always seen her daughter as a whole human being and dedicated her life to giving her the greatest quality of life that she is able to give. And thank you to my aunt, Norma Knott, for teaching me what true nursing and professional care really should be.
I close realizing that Jody is most likely buried in an unmarked institutional grave somewhere and so I offer this as her legacy, as her tombstone of life-recognition.