YESTERDAY my neighbor and her young granddaughter stopped by our home to visit. My grandmother always used that term - "visit" - to describe in her soft drawl the Sunday act of coming to another's home. The granddaughter wandered about most of the afternoon commenting on all things that came to her notice. This precious child's name is Destiny. Ambivalence always arrives with her. I am the smaller for it, but I cannot help feeling jealous. Destiny has something my four year old child does not. While Destiny sprays out sentences like a three year old Gatling gun, my four year old son has never spoken a word.
WHEN SARAH PALIN accepted the nomination of her political party for Vice President of the United States, my wife’s cell phone rang. We live in the reddest part of a red state dense with a demographic common with that hue – Christian Evangelicals. The caller was a friend of my wife. True friendship requires give and take, and my wife tolerates her friend's political and religious evangelizing. Her friend felt called that night to tell us about Sarah Palin.
"She has a special needs child."
My wife and I had not watched the GOP convention. We made up our minds long ago about our Presidential choice, a choice my wife’s friend knew of and was not happy with. True to her faith, however, she has never stopped trying to dissuade us from what she considers to be our backsliding ways. She believed she had found her instrument in Govenor Palin.
"She understands disabilities and plans to do something about it. I thought you all would want to know"
We had not known before she called that Governor Palin had a six month old child with Downs, but my wife's friend did not find her desired instrument in Sarah Palin. Instead we wondered was why this disability would be used politically. Identity politics had always been something I understood at some level, but the depth of the point was driven home that night. Governor Palin is like us because she has special needs child. Right? No, I am afraid not so much.
The irony of my neighbor’s grandchild name never leaves me. Most parents, I think, look forward to changing their child's last diaper. It is a sort of a rite of passage. As my child nears his fifth birthday, my wife and I realize we may never accomplish such passage. We deal daily - many times with tears - with the probability he will never say our names. There are the good moments. His cackles rain down and brighten the room when our older two boys parade around entertaining him. It is like watching the essence of joy. It all is part of my ambivalence. Destiny. I have come to believe that his challenges are why my wife and I were placed on this earth.
Yet my son’s cognitive and physical problems are not the point. The use of identity politics is. By contrast, Rosemary Kennedy’s institutionalization was not well known publicly when her brother was elected President in November 1960. The darker view was, and remains, that Kennedy’s father, Joseph, Sr. suppressed Rosemary’s condition before his son’s election. This, of course, is at complete odds with the 1946 founding of the Joseph P. Kennedy, Jr. Foundation. That organization’s mission was, and remains, to improve the quality of life of those living with mental disabilities.
Kennedy's presidency was marked by innovative changes in caring and treatment of those with special needs. On Feburary 5, 1963, Kennedy delivered a special message to Congress advocating a new national approach to the care to mental illness and retardation. The message concluded with words that resonate forty three years later:
We as a Nation have long neglected the mentally ill and the mentally retarded. This neglect must end, if our nation is to live up to its own standards of compassion and dignity and achieve the maximum use of its manpower.
This tradition of neglect must be replaced by forceful and far-reaching programs carried out at all levels of government, by private individuals and by State and local agencies in every part of the Union.
We must act
- to bestow the full benefits of our society on those who suffer from mental disabilities;
- to prevent the occurrence of mental illness and mental retardation wherever and whenever possible;
- to provide for early diagnosis and continuous and comprehensive care, in the community, of those suffering from these disorders;
- to stimulate improvements in the level of care given the mentally disabled in our State and private institutions, and to reorient those programs to a community-centered approach;
- to reduce, over a number of years, and by hundreds of thousands, the persons confined to these institutions;
- to retain in and return to the community the mentally ill and mentally retarded, and there to restore and revitalize their lives through better health programs and strengthened educational and rehabilitation services; and
- to reinforce the will and capacity of our communities to meet these problems, in order that the communities, in turn, can reinforce the will and capacity of individuals and individual families.
We must promote - to the best of our ability and by all possible and appropriate means - the mental and physical health of all our citizens.
To achieve these important ends, I urge that the Congress favorably act upon the foregoing recommendations.
These words resulted in The Community Mental Health Act of 1963 ("CMHA"). The CMHA has not entirely succeededin its vision, but it was decisive legislation, ambitious in approach. We are on the threshold of a New Frontier, just as we were when Kennedy's words were written. In this unique way my son is Rosemary's child. We have an opportunity to answer the clarion call.
My wife and I are blessed. Blessed with a measure of financial security and health insurance to defray some of the enormous cost associated with the issues that confront our family. We empathize with those who do not. We wonder aloud to our conservative friends how those not as fortunate shoulder the suffocating burden. These are the real issues. Legislation that recognizes and eases these burdens on families must be the imperative.
We are the sum of our life experience. Once Sarah Palin lives the frustration, the heartbreak and the special love necessary to care for a mentally and physically disabled child she can sell me on the politics of identity. Call it naivete, but perhaps this experience, as it has with us, will shape her true destiny.