Disability Day of Mourning: The Loss of Innocence

A few weeks back I asked H if he would like to attend the ASAN Vancouver Disability Day of Mourning Vigil with me on March 1st, at the Woodlands Memorial Gardens in New Westminster, BC.

He asked what the vigil was for – and then as I explained that it was to honour the memory of people with disabilities that had been killed by their families and caregivers – his intake of breath was audible…

There was a pause…

When he caught back enough air to speak again, he asked in disbelief, “How could people do that… to… their… own… kids… and… family? Family should be SAFE!!”

I responded, hoping like I do at times, that the right words would somehow drop from the sky, “You are right, family should be safe. But you need to understand that some people have families that are not safe, and some people think that the lives of disabled people are not worth living. It is also important to know that this is not okay, and so we are working to change the way people think about disability and disabled people. This is a hard thing to think about and to know about. I am inviting you to come, but you do not have to  – it is up to you.”

H took another long breath in, and then said with finality, “I want to go…”

Over the last few weeks I have been thinking back to when H visited The Woodlands Memorial Gardens, in the spring of 2012 with my mother and me.

Woodlands, constructed in 1878 and finally closed in 1996, was an institution, an ‘asylum for those with developmental disabilities and the mentally ill’ and then later a residential school. It was a place of incarceration, exclusion, dehumanization, and the existence of this institution and the attitudes that went with it, denied those with developmental disabilities the right to be valued for who they were and to included in their families and communities.

I wrote about that then (Ghosts of the Asylum in Spring: A look back at exclusion and abuse). It was just before H attended his first conference with me… and I see it still as a conversation of origin for his advocacy, activism, and sense of social justice:

“This past Sunday, my Mom, H, and I walked through the memorial gardens there. We read the signs – telling about the injustices and atrocities that occurred. A touch of spring accompanied us briefly on our deeply moving trek. The sun came out and stole away a bit of the chill, and the early buds promised something more of the spring yet to come. Today was just a glimpse.

I glimpsed another thing emerging today as well… H’s understanding of injustice.

As we read the memorial plaques – H became increasingly interested and was full of questions.

Who lived here? Who? When? Did they put people with autism here??

Yes, honey – they did…

That’s Horrible!”

Yes…

You mean I might have been in a place like that?!?

Well – families were often told that they shouldn’t raise their children. Lots of people – and even doctors would say that.

They were wrong!!

Mom – I feel sad for those people…

~

Gently – gently…

And now the day is here…

I hope I have scaffolded things so that he is ready…

We looked at the images created by Corbett O’Toole for “LISTENING TO GHOSTS: Making Art about Disabled People Killed by their Families” – and I read him the post from last year, with the words of Norman Kunc and Emma Van der Klift – and we listened to this speech from the ASAN Vancouver 2015 Vigil by Amythest Schaber.

H is deeply, deeply empathetic. He feels things soooo intensely, but he knows I will be there – and we have planned for dinner with our good friends Norm and Emma afterwards.

I think he is old enough to build his understanding of why I spend my time, along with so many others, doing this activism stuff… and to know that there is a place for him at the table… if/or when he wants to add his voice.

H may or may not be an activist like his mom, but he will understand why I do what I do – and that he has a right to rail against negative stigma – and not be beaten down by it.

I do not want my son to accept the shame foisted upon disabled people. It is my job as a parent to support him so that he is proud of his authentic self, and that he understands and embraces that disability is a part of this.

Gently… gently… I hope it is enough…

And then I realize…  of course H is not ready.

How can he be?

I am not ready.

I am not ready to feel the pain of those witnessing with us today… as we all absorb the emotion hanging thick in the air – our hearts heavy with imagining the horrific betrayal of those whose lives we are remembering… the lives belonging to the 400 or more people whose names will be read aloud…

Gently… gently… I hope it is enough…

I know H will be surrounded by a community of people who care about him and who have the skills to help him process and keep him safe.  I would rather plan to share this with him in a well-thought-out way than have him stumble across such horrific information without the scaffolding of love and support.

And then, as we were on our way H said, “Today we are going to pay our respect to people who were killed by their so-called loved ones…”

I reflect… that he is taking this in with understanding…

And I also reflect that is it a terrible thing and I hate it that I have to teach this young man about this…

Gently… gently… I hope it is enough…
I ease my son into the loss of innocence…
Gently… gently…
Making room for love and pride to take the place of hate…

Black and white photo of Emma and Alanna reading the names of disabled people who have been murdered. NOrm and Harrison are listening. The arm of a mourner is visible in the foreground, holding a stim toy.

Black and white photo of Emma and Alanna reading aloud the names of disabled people who have been murdered. Norm and Harrison are listening. The arm of another mourner is visible in the foreground, holding a stim toy.

Black and white photo of the reflecting pool surrounded by a lattice work of white carnations and people who participated in the Day of Mourning. They are gathered around and talking after the vigil.

Image: Black and white photo of the reflecting pool surrounded by a lattice-work of white carnations. People who participated in the Day of Mourning are gathered around and talking after the vigil.

Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height that the windows would have been for the residents. There are candles and flowers arranged on the window's ledge, and a tree can be seen through the bars.

Image: Black and White photo of H looking up at and art installation represent cement walls with the barred windows of Woodlands Institution. This is has been recreated so that it is the same height as the windows would have been for the residents. There are candles and flowers arranged on the window’s ledge, and a tree can be seen through the bars.

Black and white photo of H (a white male teen with spikey hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messager bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Image: Black and white photo of H (a white male teen with spiked hair, a retro woolen tweed trench coat, a Doctor Who scarf and a messenger bag) looking at the 10 page list of disabled people who killed by their families or caregivers.

Information and Resources:

The Disability Day of Mourning website provides detailed information about disabled people murdered by their families. http://disabilitydayofmournin.apps-1and1.com/index

Anti-Filicide Toolkit. Available from Autistic Self Advocacy Network. http://autisticadvocacy.org/home/projects/disability-community-day-of-mourning/anti-filicide/

___________________________________________________

30 Days of Autism is a project designed to fight stigma, promote civil rights, and increase understanding and acceptance for those who process and experience the world differently.

© Leah Kelley, Thirty Days of Autism, (2016)

About Leah Kelley

Leah Kelley, MEd., Educator, Parent, Speaker, Social Justice Activist. Writes blog: 30 Days of Autism. Projects support social understanding & neurodiversity paradigm. Co producer of documentary: Vectors of Autism. Twitter: @leah_kelley Pinterest: http://pinterest.com/leahkelley13/ Facebook: https://www.facebook.com/pages/30-Days-of-Autism-Leah-Kelley/154311301315814
This entry was posted in ableism, Activist, Advocacy, ASAN, autism stigma, Autistic, Boycott Autism Speaks, Death, Disability, Grief, prejudice, Rail Against Stigma and tagged , , , , , , , , , , , . Bookmark the permalink.

13 Responses to Disability Day of Mourning: The Loss of Innocence

  1. Rob Heather Stare says:

    Hi Leah,

    It’s been awhile. B is doing alright – working to complete his adult grad.

    I just read your latest post and was wondering if you have heard the about the latest discussions by the committee working on Canada’s euthanasia law? Apparently the wording is being expanded to allow for those with disability and mental illness to choose doctor assured suicide. It scares me know that my depressed son would be able to choose this in a moment of extreme illness. I’m wondering if you are following this at all. We need to prevent this tragedy from ever happening again.

    Thanks for all you do on behalf of those with autism and disability.

    Heather

    Sent from my iPhone

    >

    Like

  2. William Myhill says:

    Wonderful Leah. Thank you for all you put into advocacy.

    Liked by 1 person

  3. Ladyofroyalhorses says:

    Thanks for this post. Do you have anything on Autism speaks condoning the killing of Autistic people?

    Like

    • Leah Kelley says:

      Their spread of ignorance and negative stigma in regards to Autistic people, with language that frames them as burdens and tragedy contributes to the perspective that these lives lack value.

      More specifically – in the video “Autism Every Day” (available on youtube) from Autism Speaks, a parent talks of considering killing herself and her autistic child in front of her child (around the 3 minute mark).

      HUGE trigger warning! This is a horrific video made by Autism Speaks and I am uncomfortable linking it up here….

      Liked by 1 person

      • Ladyofroyalhorses says:

        Please keep telling the truth about Autism speaks. I am aware of that video. please share it with others and wake them up. Thanks for replying to my post.

        Liked by 1 person

  4. Ladyofroyalhorses says:

    Reblogged this on Appalachian aspie part two..

    Liked by 1 person

  5. Pingback: Respectfully Connected | April is coming

  6. Pingback: I Fear for My Fellow Autistic People: On Media Misrepresentation | Paginated Thoughts

  7. Pingback: Society’s Comments on the Murders of Disabled People | Paginated Thoughts

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s