Friday, March 02, 2018


Photo description: Black boarding set up with seven pieces of white paper displayed. "Mourn for the Dead And Fight for the Living" is written in read above the sheets of paper. The sheets of paper are fully covered by name."
Yesterday afternoon we went over to Newmarket's first vigil in honour of the International Day of Mourning for People With Disabilities Killed by their Care Providers. I'd never been to one before and was intent on making it there this year. It was a beautifully simple vigil with a brief introductory talk, two reading, but the focal point was the reading of nearly 1000 names.

I have always believed that the names of disabled people are important. People with disabilities have been buried in graveyards and marked with their file number. Their names might identify who they are and who they were related to, they were buried, nestled in their coffins next to shame. Names break through and state "This is who I am." Names challenge "And this is what you've done to me."

There were so many children. Babies. I winced when I heard their names, how could this be? How does this come to pass? How deeply are we feared and hated? It gave me some kind of comfort to know that they are not forgotten, those of us who never knew them, those of us who now will never meet them, hear their names. Once a year they are spoken of.

They say that you die two deaths. The first is the death of the body. The second death happens the last day your name is ever spoken. We could not stop the first death, but by God we can delay the second. Their names were spoken all over, wherever a vigil was held. Candles may have been burning during the ceremonies, but it was their names that lit the room.


clairesmum said...

sorrow....and deep cold anger at those who kill a person who relies on others for help in some way. none of us is completely autonomous.
Freud's contention that a child is aware of the parent's ability to kill him and the child's corresponding rage at being dependent, is one basis of 'neurosis' is not hypothetical. Alice Miller explores this more deeply in her writings.

Carers and parents share the responsibility for the survival and wellbeing of the lives in their care. Parents do kill. Carers do too. Our inability to acknowledge the primal drives in our species - love, death, safety - leads us to the world we inhabit today.

Our world does not put much value on anyone who is judged to be 'useless' or ' ugly."
"If you can't be decorative, at least be useful." Wonder if anyone else ever heard that, growing up?
Words hurt. Silence hurts. Truth heals.


Unknown said...

Thank you for your beautiful and meaningful posts.
When reading this blog for today, it is hurtful to know that many people with disabilities were killed by their own care providers. In my country, there is also the situation where many infants were killed because of their disabilities. It is a cruel act of every people who lives in this world has the right to live their own lives to the fullest regardless of their race, religion, disabilities...
As Easter Seals said, “The worst thing about disability is that people see it before they see you”. The social narrative should be challenged too as it somehow leads people to live the life according to its “power and regulations”. What if when it comes to the word “disability”, people think of it as a beautiful art instead? People with disabilities should receive more love and respect through advocacy and education.
An Ngo

Purpletta said...

Clairesmum, I am so sorry that such a thing was said to you as a little one. We have such a responsibility to our young people and that statement violates every tenet of our responsibility. I know you only through your comments on this blog but always you are kind and supportive, introspective, and commited to a positive collective future for all of us.

I had to look up a technical definition of decorative - defines decorative as the opposite of functional — and defines functional as “of or having a special...purpose.” So if someone suggests we are not decorative... Undoubtedly it is untrue as you are clearly a beautiful person - we see it through your words. But oh you so clearly embrace such a far more important bring love and healing to our world.

Thank you for sharing your true beauty here on this blog and in our world.

Ranvaig said...

I recommend the story "Mountains of Mourning" by Lois McMaster Bujold, which looks into the suspicious death of a baby with a defect.

Purpletta said...

Dave, This continues to be so powerful - the act of continuing to speak their names. Akin in some ways to the dedication of your blog - So very powerful.
Thank you...

Ettina said...

The idea of the 'two deaths' reminds me of Mexican beliefs about the afterlife. I will probably garble this, since it's not my culture, but from what I understand, Mexican culture says that the dead linger with us as long as we remember them, especially on Dia De Las Muertas. But if they are forgotten, then they fade.