Tuesday, January 10, 2012


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 ...



Anonymous said...

Wow, I will try my best to promote it.


Feminist Avatar said...

Dave, I wonder if this is the best phrasing, because it sounds a bit like we are mourning 'because' people have disabilities.

SHould it not be: the international day of mourning and memory for the lives of those forgotten due to disability?

Just Jess for now said...

I will promote it. Play with the wording if you want, but if the title is too long, it may take away from the meaning of the day altogether.

Louise said...

Count me in, and I'll send this round the international L'Arche network. I think it would find an echo especially for so many of our community members who are survivors of the institutions. One woman used to speak poignantly of her companions who were 'lost patients' - those who had no family or friends.

I agree though that the title needs to be VERY clear that we're not mourning because people had disabilities.

Susan, Mum to Molly said...

I think it is an awesome idea - and fits in well with Int'l Day of Acceptance, three days prior:


John R. said...

Excellent...will do, Dave and will get the word out!! Thank you for this initiative!!

Roia said...

I think it's a very fine idea, Dave, and I certainly support it. But, as a person who has worked as a music therapist in an institution for the past (just about) 24 years, I can tell you, at least in our facility, none of the folks who have died during the time I have been there were just forgotten.

We have a memorial service for each person who dies, complete with clergy (who have often met the individual if they chose to participate in many of the weekly faith-based services), family members, photographs, words of remembrance (staff often write poems or request songs that we sing or share favorite stories of the person who has died), and a reception afterward for everyone to get together and celebrate the person's life.

Over the years a number of us advocated strongly to make sure ALL the people who wanted to could be present at the service (it used to just be staff, but because of our fussing and carrying on about it, now the folks who live there are able to participate as well).

I was honored to be present (along with three of her direct support staff who were bereft) with one of the women we supported for many years at her passing. I have seen staff carry around photographs of clients who they cared for who have died, some who have placed small objects of remembrance at the person's gravesite, and those who have placed photographs and poems about the person who died in a prominent place in the cottages where they lived.

I guess it depends on the facility and the people who work there. (And please know I'm not pro-institution- I haven't ever been, and I never will be, but it is where I work, and if people live there, then those of us who work there must do the best we can to make it as bearable as possible.)

All that having been said, I fully support a more public remembrance, because people out in the world don't often remember folks who live in institutions, and their memories should indeed be honored.

ivanova said...

A great idea started here!

Liz Miller said...

I'm in!

Colleen said...

Dear Dave:

Great idea! Count me in. I hope we get to hear how different people have marked the day. Would People First be invited to participate? In their video Freedom Tour, the participants in that advocacy movement wear black and yellow ribbons to remember the people who died in the institutions they visited. I think I will adopt that. I am also going to ask that my church mark that day during the service.

Thanks Dave!

Mom said...

I will promote and circulate. Being a long term member of L'Arche, I have had the painful privilege of participating in the incredible funerals of many friends with disabilities. I have often thought what a incredible project it would be to gather the many eulogies for these folks and publish them as a way to illustrate the value of these lives lived. You have inspired me, Dave, to try to make this happen.

Princeton Posse said...

Dave, marking this in my calendar. I have many to remember.

Dave Hingsburger said...

Colleen, any one any where who wants to participate can indeed participate. If you have contacts at People First, please let them know. Thanks

Anonymous said...

What a beautiful idea! The day is easy for me to remember because it is the birthday of a gentleman for whom I provide guardianship assistance. I could not imagine life without Stevy. I will pass this on to folks down here in Alabama. Thanks, Dave!

Andrea S. said...

I have facebooked this.

January 23 happens to be my birthday, but I'm happy to share :-)

Next year, how about making this both a day of remembrance and also a call to action? For example, people could do something to demonstrate support for organizations like ADAPT that promotes independent living and de-institutionalization, or for various People First organizations, or other self advocacy organizations such as the Autistic Self Advocacy Network, etc. Anything that enables people with disabilities to advocate for themselves or that helps promote freedom for the many people with disabilities who are still institutionalized today around the world. Disability Rights International (http://www.disabilityrightsintl.org) is one organization that promotes international de-institutionalization of children with disabilities.

That way, we could not only remember people for whom freedom from institutions comes too late but also do something to help people who are still institutionalized today.

Anonymous said...

I'm signed up Dave. Anyone doing a facebook page?


Dave Hingsburger said...


I don't have any idea of how to do a Facebook page, if you do or if someone does, let me know I'll help out in any way I can.

Bev Herrin said...

You have no idea how appropriate January 23rd is to use as the date to focus on the memory of those who have left us.
Many of your readers probably know of Judy Cunio. She is the person credited for coming up with the name People First as the name of a fledgling group of people who wanted to make sure the world heard their voices. She was living in an institution at the time.
Judy's 60th birthday would have been this January 23rd. She died in June 2011. I miss my friend so much, it will be a day of special remembrance for many reasons.

John R. said...

If nobody has issue I will be completly happy to create a Facebook page...All I need is some narrative, which I can probably use from your initial post, Dave...and then we are off and running....let me know if you wish for me to create...time is of the essence in order to create traffic on the page...so, let me know!

Susan said...

I'm with ya Dave. It's a good plan.

Remember that black armband you inspired us to wear a few years back? Well, mine is still hanging from the rearview mirror of my car. No-one has ever asked me (yet) why it's there, but when they do I'll be telling that it's because I remember Brent Miller...

Dave Hingsburger said...

John ... go!

And John, can you send me an email, my system was upgraded and I lost my email history. I need to talk with you ... thanks!

Anonymous said...

Yes! will check back here for address of facebook page and then tell people I know.
My cousin died in an institution age 7 in the late 60s. He had Down syndrome. My auntie showed me one photo. His brother, my cousin, told me he doesn't feel like he lost him bcos he never knew him.
When i think of my cousin who died in the institution, I cry.
I cry because we lost him. I cry because we lost him when he was born. I remember being told about his death when I was quite young, and I remember feeling confused, taken aback, and abit traumatised that this news was told with relief, not grief.
I work(ed) with people in long stay remote institutions, and with people who did get to leave those institutions and live elsewhere. Crying is connected with these people too, but it's complicated. I don't cry for their lost lives, because it's different for each person. I don't know how they experienced their lives, in spite of the brutality of the places and lives they lived. Some people tell about it, but many didn't/don't, they live their lives. I can't cry for lost lives in general.
But I cry for what we all have lost, we lost children, brothers, sisters, cousins, aunties, uncles,neighbours, friends, people, so many people stripped out of our communities.
Loss that as individuals and communities, we don't seem to even know, feel, experience except in lonely ways in corners and sideroads.
I think naming this loss, making a space and place for mourning and memory, is something we all need.

TMc said...

The self advocacy association of NYS helped create awareness of the issue of people being buried marked only by a number in state run institutions. There was a statewide intitiative to recognize each person by name and a monument "In memory of those who shall not be forgotten" listed each person by name at both Wassaic and Letchworth. During the work of reclaiming the cemeteries several stories of family reconnections were made. It was an awesome experience to be involved with.

TMc said...

The Self-Advocacy of NYS raised awareness of the issue of people being forgotton in death as they were in life back around 2005. As a result monuments were built " In memory of those who shall not be forgotton" and individually listing each person by name. Several touching stories of families reconnecting came about in the process. It was awesome to be involved! Count us in for 1.23.12

janet said...

TMc could you let the group know about this memorial day?

theknapper said...

This has brought forward a memory of when I worked in an institution. People who lived there died sometimes....there was no service or marking of the death but there were inservices where the doctor would have the person's brain who died for us to examine to see what it looked like. So clinical....I remember thinking about the person who had died and how surreal it all seemed.
I now see obits in the paper of folks who lived in that same institution where their lives are celebrated and services are held and they are truly missed. I will mark this day.

Karen Webb said...

Dave, wonderful that you show how needed this is. And I think your title works well - not ambiguous.

There's another forgotten set of people. May I ask also for remembrance and mourning for those who never made it past babyhood? For the miscarried, the stillborn, the aborted, the ones born already with a death sentence on their head. All disabled in one way or another.

Whether grown or infant, the ones society teaches us to avert our heads from. The untouchables. The unseeables. The forgotten (except to those who loved them). Love.

Andrea Roberts said...

Dave, I can tell you that hundreds of thousands of diabled children and adults living in foreign orphanages and mental institutions are absolutely forgotten...as if they never existed in the first place. Reece's Rainbow raises awareness and funds for the lives of these children, that they might be adopted by American and Canadian families. In only 5 years, more than 600+ children have been saved from this fate. Hope you will share! www.reecesrainbow.org

P said...

I'm with Karen Webb too, add in the souls whose 'treatment' begins with death before birth in an age where a child was denied a kidney transplant in PENNSYLVANIA this week for the SOLE reason explained to parents of mental retardation and blogged about abc hopefully corrected immediately. But what about the patents too afraid and worried and counseled in this time of turmoil without a chance to confirm the absurdity of the recommendations.

Who attends the funerals of the distraught families and their babies after DELIVERY of a child too early for medical reasons 'treating' DS. I know parents told within the past seven years that their child would not walk talk or do anything because of DS in California.

It's horrific and doctors do NOT and SHOULD NOT council parents on cognitive issues, and I doubt genetic counselors have the psychiatric training to handle the situation either. We should fight for psychiatrists and psychologists trained in grief and other issues be mandatory and adequate resources be provided to families immediately (for Down syndrome www.downsyndromepregnancy.com link and downloadable brochure produced by a collaborative effort of parents, doctors, OBs, and various interested organizations)

Brooke, Cessna, Canyon & Rogue said...

Hi Dave,
I've made an announcement on my blog (http://ruledbypaws.blogspot.com) regarding the International Day of Mourning and Memory.

You can find the post here (http://ruledbypaws.blogspot.com/2012/01/international-day-of-mourning-and.html) and if you have any changes you'd like me to make to what I wrote, please don't hesitate to let me know.

Amy said...

We are with you!!!! This year the March for Life is on January 23rd because the 22nd is on a Sunday ( 22nd is when the Roe VS Wade decision happened) We will be MARCHING for the 90% of children who are aborted because of having Down Syndrome! We are marching this year with all four of our children. Our Dusty and Sonya were just adopted in MAY through Reece's Rainbow - they both have DS and we are BLESSED to have them in our family!!!!!!! Thanks for your post!

Kasie said...

On the Morning of January 23: International Day Of Mourning And Memory, I googled the "International Day Of Mourning And Memory", and there were "about 7 results" shown. This afternoon I Googled the same and their were "about 1,480 results".
Nice work in a few short days!! You never cease to amaze me, Mr Hingsburger! Don't ever change!

Rickismom said...

definitely in