W e all are clients. Whether we seek the advice of a lawyer, visit our family doctor or rely on the considerable skills of the person who drives the bus we take to work in the morning, we are all service recipients.
Much has been made lately of the terminology we use to describe citizens who receive service from organizations in the field of developmental disabilities.
These last months have shown me it matters less what we call each other, and matters more what it means to have your entire life defined by the services you require…these months (and in many other instances) client-hood has been fatal.
On May 15th 2001, John entered into a Child Protective Service system in Canada. A system made of well intentioned, kind individuals, who care deeply about the welfare of Canada’s children, a system, none-the-less, unable to see past John’s label of Down syndrome. John became ill, with all the harbingers of a childhood flu that sends all of us parents scrambling to make arrangements to be away from work so we can be with our babies. The service delivery model saw John’s illness as a result of an opportunistic virus, which because he had Down syndrome his body had greater difficulty fighting. As John became sicker, they saw his lethargy as part of the physiology of Down syndrome. As he became weaker and sicker still, they saw his unresponsiveness as a result of delayed cognitive and speech development, in their opinion inherent in Down syndrome.
When John’s tiny two year old body got too sick to fight, the fatality inquest ruled that his death on August 15th 2003 was, in their words, “inevitable”.
Three month old Annie was admitted into a children’s hospital in Canada 24 hours before her death with acute respiratory distress. She was casually diagnosed with pneumonia. Because she was born with a genetic condition generally associated with a short life span, she was labeled as hopeless and not recognized as a unique child who did not possess the majority of the medical conditions of the syndrome. An effective “Do Not Resuscitate” order was placed in the records without the consent or the knowledge of her parents who never left her bedside. Annie’s family was denied the right to make treatment decisions whether they were to be palliative or surgical. The final private nurse silenced the alarms without telling Annie’s parents and left the room robbing her family of their vision of a faithful death for Annie, one where she would leave this earth in her Mothers arms, surrounded by the people who love her, in a way that would honor her short but profoundly important time with her family.
As I (against my better judgment-and against the advice of every parenting book I have pretended to read) allow my 4 year old to climb into bed with me in the darkest hour of the night. I think about John and about Annie, and I hold my son as close as I can against me. It has, indeed, been a long dark night. I offer up a tiny, but what I hope constitutes a starkly clear, meditation up to the universe.
Let us never forget how vulnerable we all are in systems that see but a tiny piece of who we are in the world.
What keeps us safe in the world are our connections to each other. And may we never stop working to develop these relationships with, and on behalf of our children. Waiting (with you), for the dawn.
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