I need your help.
Colleen, a frequent visitor who comments regularly, left a comment the other day that I'd like to pull out for your notice, it gave me an idea:
I want to tell you about something that happened to me at church ... I was sitting behind a young man who just from his haircut and the slope of his shoulders and the way his glasses slid down his nose made me think very much of my brother, Gerry, who passed away a couple of years ago. Gerry had Down Syndrome and lived most of his life in institutions. In my particular brand of Christianity we pray for "the repose of the soul" of deceased loved ones, which I often do for Gerry and so do the rest of my family. A huge wave of grief washed over me - who prays for the souls of those thousands of people who died unknown and unloved in the institutions - who prays in gratitude for their lives? Starting now, I will.
I remember the first time I walked through an institution graveyard. Weeds had overtaken most of the graves and I had to pull away dead leaves and brittle branches just to see the names that were there. It seemed to me, even then, to be tremendously sad. It was like those who lived neglected lives were now resting in forgotten graves. On most of the markers there were simply names and dates. No kinship mentioned. No earthly ties acknowledged. Just the date that began the life and the date that life ended. As if the time in between held no story to tell.
Times have changed, I know. Many people with disabilities who have experienced community also experienced being valued. Being loved. I am told of their passing by others who's voices break under the weight of sadness. Eyes fill with tears and fall onto chests and echo the broken heart. I see it. I feel it. Mourning a long time coming, has come.
But not for all. Many people with disabilities, in Canada and around the world, still live lives locked away. Still live captive for the crime of difference. Still wait for freedom. I remember being with a woman with Down Syndrome, an activist, at a conference. She listened to a presentation on life in an institution. She had never experienced anything like it - being loved and adored by her parents. She knew of 'the land of the long corridor' and spoke with horror at the very idea. At one point in the presentation she got up and fled, hand to face, weeping. I followed her out into the hallway. She was crying because for the first time she learned that some never left the institution. That some died there. In her mind she thought that all got out, that all got to experience freedom. She broke down and simply wept. Of her, others spoke, later saying that maybe she was too sensitive to be in an advocacy role. I said, and still believe, maybe none of us are sensitive enough.
I am taken with Colleen's pledge. I wonder if we here, in this little community, can start something that might grow. I propose the 'International Day for Mourning And Memory of the Lives of People With Disabilities'. The day would be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember.
To me, remembrance has always been an important part of what I do and how I live. I have always, for example, marked January 23rd in my calender as a day to remember. Let me tell you why. Sandra Jensen was a woman with Down Syndrome who was denied a heart transplant because of her disability. It seems that people thought that a perfectly good heart should go to a perfectly good person - and though Sandra lived a life of quality and contribution, she was not considered. In fact, a transplant had never been given to someone with an intellectual disability. They didn't know who they were dealing with.
Sandra was an advocate and she began. She fought against prejudice. She fought against stereotype. She fought against hatred. Her message was one of hope and power. She wanted her life to be valued. She wanted everyone to know that she loved living and the she rejected any notion of 'better off dead'. She stood for all people with disabilities. She stood for all to be valued. She fought and she fought hard. And she won. On January 23rd, 1996, she got her heart. I would reckon that the day she received her heart, so did the medical system. Her fight changed laws. Her fight affected the lives of people with disabilities right up here in Canada and around the world. So, I mark that day.
I've always done this privately. I've never written about it. Spoken about it. Ever. It was just me. This year, I'd like you to join me. I'd like 2012 to begin the first of a yearly event, the 'International Day of Mourning and Memory of the Lives of Disabled People.' I know that this is soon and that there is no notice. But in days of instant communication - who needs time?
I ask you to join me. I ask you to get the word out. Facebook. Twitter. Use social media. Contact friends and family. I know that this blog has a large readership. People with Disabilities use your connections. Agency directors, supervisors and staff, arrange something in your agency. College professors have your students come up with an idea for marking the day. Just make it happen. After the 23rd maybe we can arrange something more organized next year. But for now ...
January 23, 2012 the first annual 'INTERNATIONAL DAY OF MOURNING AND MEMORY OF THE LIVES OF PEOPLE WITH DISABILITIES