Wednesday, March 08, 2006

"I have a family, too!"

This short reflective article by Michael Owen at Ragged Edge Online brought home the power of family to me today. Family is just what so many generations of people with mental retardation missed out on. Many a sleepless night has found me tossing and turning and seeing pictures in my head of people who look a lot like one of the people in my own house, pacing the floor of a state hospital somewhere, with nothing to do and no one to love.

A few years ago there was a wonderful series of articles about an artist in Sacramento, a 76 year old woman named Irene Pinole. The first article was simply a story of her life, a life without family. She had been removed to a state institution at age 11, when some neighbors in her small town objected to her presence among them. Her younger siblings were told Irene had died in the institution, and were never able to find out any more specific information. Amazingly, her surviving family found her after reading the article.

65 years after their total separation, her sister came to see her. "Thank you for coming to see me", Irene said to her sister. No anger. No recriminations. No self-pity. Just love. Just happiness.

I think about these things a lot, when I try to understand this intense fear of Down syndrome that makes so many doctors counsel so many women to have prenatal tests. That makes it such a public health impetus to weed out these lives, the overwhelming majority of which are benign presences among us.

I sent a letter to the Sacramento Bee writer back when the articles appeared, and I saved it because...well, because this particular story about this particular life seems so illustrative to me: of the eugenics movement, of the waste of human potential implicit in institutionalization, of the false fear of people with mental retardation. But also because it illustrates the power of love.

Dear Ms. Hubert:

Your articles about Irene and her reunion with her sister were forwarded to me by a friend, all the way out here in Virginia Beach. Yes, both of us have children with Down syndrome. Their story will touch the heart of any ordinary human being. But it is especially, achingly touching to this mother's heart. In fact, I have been crying for several hours, it has come so close to breaking my heart.

I guess I am crying for many reasons. I am so happy that Irene's sister stepped forward, once she knew where Irene was. I am so thrilled for Irene. I am so thankful she had some loving caregivers over the years, who watched out for her. I am so sad, so overwhelmed with sadness, to see her small world, her few possessions, the little accumulated mementoes of three quarters of a century of American life, all in one small room in a shared house. Oh, I am just sad, for so many lost children, so many families who lost their babies to the state, and most simply, for the babies who lost their families.

I also have a little short person with Down syndrome in my house. Her name is Emily. She is fourteen. She is also four feet six, a very short person, even for someone with 47 chromosomes. Our life is not a fairy tale. She has many challenges, and certainly, her mom has many challenges to meet those Emily brings to our family.

But I look around her room, in her house, which she shares with two sisters and a dad and mom, and about 50 Barbies, and her ever-present CD player with the Kids Bop CDs, and the DVD player downstairs and I think...of Irene. Emily and Irene, and the difference that 75 years in society can bring. And I am not, of course, really talking about the material things; I know you understand that. I am talking about the evidence of ordinary American teenage life.

I don't have a way of getting in touch with Irene's sister or the rest of her family, and actually, would not like to intrude on them. But, if you have a way to be in touch with Olga Johnson, and think she would like to see this letter, I would appreciate your sending it to her. It is not always easy to know what to do or how to act, when newly confronted with a person with mental retardation, and I say this with the utmost respect for my daughter and others. It is the simple truth. But oh! they have so much love to share, they are so brimming with love of the highest nature. Love that expects nothing, and accepts a great deal. Love that surpasses understanding. Joy in simple human companionship that is very hard to find elsewhere.

I hope Olga and Irene can come to have some of that joy, delayed as it may be. Ms. Johnson, from Emily's mom, a handclasp across the miles. Good wishes to you both.


P.S.: It appears that Irene is still painting and displaying her work at the Short Center South. Kudos, Irene.



Anonymous Moof said...

Beautiful post! Thank you!

11:01 PM  
Blogger Keith, RN said...

You are such a heart-centered advocate of those in need of advocacy and champions. I also wonder about all of those lost lives in institutions. A sad period in history, to be sure, adnone that continues on other levels of our society--and other societies as well.

Thanks for your consistently thoughtful entries!

10:15 AM  
Blogger Peggy Lou Morgan said...

Mary, this is absolutely beautiful.

The power of family is so overlooked and so vital.

For too long people with disabilities were hidden away from the world and their own families. Not only has that been a loss for the person and their family but for society as well. I believe that is why there is so much difficulty on the part of society and even the medical profession in relating to persons who experience disabilities now. They haven't dealt with disabilities because they have been locked away.

10:11 AM  

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