Wednesday, January 23, 2013

1440: International Day of Mourning and Memory

Post in Commemoration of the Second International Day of Mourning and Memory

One thousand four hundred and forty.

Some numbers deserve to be written out longhand.

One thousand four hundred and forty.

In a graveyard, not far from where I type, 2011 people were laid to rest.  Only 571 have names. A full one thousand four hundred and forty lay nameless and forgotten. Even if you knew them once, you'd never find them now.

How could this be?

The is a graveyard that lay on the lee side of institutional walls. That institution is now closed. No footsteps echo down the long corridors, the smells of human captivity are slowly fading, the tools of segregation are growing rusty in the dark corners of back wards. Many people who lived there are now free. Many are now finding their way as full citizens, part of the community that once rejected them. Many will never know a moments surety that citizenship is an irrevocable thing.

Murderers serve less time than people who committed the crime of difference.

Those that lived, and died, at the facility, were buried there. Most in unmarked graves. Most without a single indicator that where they rest is ground made holy - not by designation or by prayer but by their presence.

One of the greatest single fears that we have, as we get older, is that our life doesn't matter. Is that we will not  be remembered. In dark hours we may worry that 'no one will ever know that I was here.' We want, and need, a kind of assurance that our time here was important, even in a small way, and that the lives we lived made a difference some how.

Rapists serve less time than people who are convicted of disability.

Shame buried people alive. Institutions housed the shame of families and sometimes the shameful secret of a society that forced families to make impossible decisions. Lack of services, lack of supports, lack of understanding - these weren't incidental markers of a time, they were the tools that were used to pry children from loving arms. Make no mistake. We built places because we wanted to fill them. We built places because we wanted rid of difference in our midst.

Talk to those who lived in residential schools.

Talk to those who lived in facilities.

They know.

Arsonists serve less time that people who found guilty of difference and disability.

One thousand four hundred and forty people lay unremembered.

Until today.

I remember that there were lives lived in the shadows. People who lived in wait for a world to change. People who lived in hope that one day the doors would open and that home would happen. People who looked out of windows yet lived behind locked doors.

I don't know their names.

But I honour their lives.

They served the sentence.

And people now live free, not because a beneficent society wanted them home. But because finally, those who waited could no longer be denied.

Freedom, here, came at a cost.

Time served.

By one thousand four hundred and forty without names, five hundred and seventy one who had the dignity of identification ... and that's just one place ... one of thousands.

Some are still serving time.

By God, I hope without hope, that not one more person convicted of difference, dies still waiting for freedom.

But hope without action is vanity.


Commit to freedom.


A couple fellow bloggers have written posts in commemoration of The International Day of Mourning and Memory ... please spend some time visiting. The first I received was from Joanne who writes of a life ended far too soon. Next in was a blistering piece from Ricki's mom, I accuse wherein she reports a stunning conversation with a doctor that had a lethal outcome. John R has just posted a blog about the roll direct care professionals can have in celebraing the lives of those that they have supported. Belinda Burston sent, late last night a powerful post that demands attention, Remembering Rainerchen. Please put other links in the comment section and, as I am in meetings all day today and then travelling 4 hours home, I'll put them in the blog proper later on tonight.


cheeselady said...

Nothing to said it all and so well.

Anonymous said...

I think we must not tar all institutions with the same brush. Before being disabled myself - through accident - I use to volunteer at an institution. I'm not saying it was perfect - but it did have lots of light and care. The care was important - it was care that is not available in the "world". Example: a young girl, who I would visit, her head was 5 times the normal size. She was confined to bed and at times, various positions as offered by very complicated and expensive equipment. She needed around the clock care. There were many, many who were not able to live outside the institution - even exist. In the institution they could have stimulation, medication, therapy. There was a little laughter - but it was hard to find much to laugh about. It was sobering. So many with so much either taken away by accident or never issued from birth. They were not less. Yes - I pitied them. I pitied them as I buttoned up my own coat, walked out on my own legs, felt the sun on my skin and drove away. Yet I marvelled at the place. Would our society be better without such places - sure - better in that no one has to be sick or suffer. This will not happen this side of heaven. Until then I give thanks that there are places that offer a quality of life - and people who are willing to serve others in this manner. Oh - each person I met had a name - which is such a step up from the terrible places you speak of. We are well rid of them.

James said...

Anon, you know those people who could never live in the community? Well they are living in the community. The idea that these services can't be available in places other than institutions demonstrates both a lack of will and a lack of imagination.

Beth said...

The institutions in my state are closing. The decision was legal but made in a way that's more than a little sketchy. There's been outraged talk about it for months. It's hard to tell how much of the outrage is due to how the decision was made and how much is to do with not wanting "those people" out in the community. One of the institutions is in my city. I'm supposing most of the responses here are for the second reason: the city has a very poor record when it comes to PWD. (City fought an ADA case,20 years post ADA, all the way through court decision and then blamed the disabled community for making them spend money not only for the required accommodation but also for the court case!)

I met a couple of the residents. One, the more mentally-disabled one, was treated very badly. In public. At a party. People would shake their heads to see a 4 year old treated that way. Not allowing him to do things he could manage himself; badgering him to say "Thank you" for practically everything, things no one else was exchanging pleasantries about, including the staff-person (he did say thanks unprompted when he thought it was appropriate); not allowing him to go to the bathroom because they were talking; forcing him to "relax" by staying still when it was quite evident he was much more comfortable moving; and only bringing a gift to exchange for the other guy. And when my arm did its chorea-like thing, the carer shot Dad and me a really nasty look, as if it were something obscene that must be controlled at whatever cost. If that's what staff is like in public and at a party, I can't imagine it goes well behind closed doors.

The officials that decided to close the institutions in favor of care in the community are holding firm, citing research that says such models provide better results while costing less. And the communities and loved ones freak out, wanting to keep them where they are. Right now, they're talking about small group homes, nothing about the possibility of any of the residents having their own place or any largely independent lives, but what they're saying now is still better than what we have. I can only hope carers for smaller groups get different ideas than the ones working the institutions.

I've no idea of the history here, any graves... I only have some limited but memorable interaction. I'm glad that soon, no mourning about it will be for things on-going. I'm hopeful but guarded: I'm glad the places are closing; I hope we don't royally screw up the next step.

joann:) said...

Powerful words David and so true : "Murderers commit less time than people who committed the crime of difference"
safe travels today in this cold.

wendy said...

All of that care, all of the special therapies and medications and stimulation, can be made available in the community when the will and the funding are there. My entire working life has been spent working in group homes and supported independent living programs and day programs to help support those who live in the community. I have worked with those who are extremely independent and with those who needed a very high level of specialized care, those with phychiatric diagnoses accompanying their developmental disabilities, those who received nutrition or breathed or moved differently from most, those who needed procedures I had to learn from a nurse to provide. My agency successfully serves many of those that institutions argued could not survive outside their walls. And there is laughter in their lives. And they feel the sun and the wind on their skin.

wendy said...

And I will think of one thousand four hundred and forty today. And those who who lived to see freedom but who periodically show someone they trust the scars on their souls from those years that came before.

Anonymous said...

By Em (I dont know how to make it not say anonymous for me)
"I think we must not tar all institutions with the same brush."
Why,why why is there always somebody who jumps to accuse those who speak out about genuine,important wrongs of 'tarring with the same brush'? There might be some great institutions somewhere and there might be some respectful,humane,caring staff and helpers,but why does that mean we have to shut up about the bad? Especially today,especially following a post thats trying to increase awareness of the reality for many 'different' people who are locked up and/or abandoned.It makes me mad that a post about human beings in unmarked graves following imprisonment by a society that didnt want to know can be followed by an 'ah,but,we must not suggest that this is anything more than an unimportant blip because 'I' know of ONE institution where MY belief is that it was a lovely place (because I wasnt one of those trapped there) so therefore shut up about this uncomfortable subject'. How is that honouring the lives lived and lost in the shadows??

Anonymous you say "it was hard to find much to laugh about" in this place you defend and you seem to think thats ok because these humans were 'tragic' but that is so,so wrong.Genuine laughter and pleasure in life is a birthright and however different someone is,by birth or by accident,that birthright is still a part of them. We are NOT tragic because our bodies or brains are different than your norm,not THE norm because there is no such thing out there really,its just YOUR norm.We are simply human and the tragedy is the lack of recognition of that. I've read case file reports from when I was 17 that say I would never be able to live independantly or out in the community but because of a couple of able-bodied/neurotypical peoples help (not 'angels',not 'saints',not 'amazing people who were willing to serve those less fortunate',just 'humans' with the ability to lend a hand)I not only lived by myself but raised a child by myself,a child who grew into a man and who because of his own differences makes the world a better place. I gave society a good person who would not have existed if all people had seen in me was that I was tragic and had little to laugh about because I was born different. I gave my own friendship and time and caring to other people in society,often able bodied/neurotypical people,and I did LOTS of laughter because out here in the world there is LOTS to laugh about and to take pleasure in because it is life not just existence.I am older now and no longer have the support I need to live independantly,I *should*,according to my society,be in a care home or hospital but I am fortunate enough to have words so I say NO. I choose the right to struggle and suffer and do without help I need over being dehumanised and shut away and pitied by people who miss the awe in the fact that they can button their own coat or see the stars and instead merely feel sorry for those who cant. I have that choice because people like me didnt and people with the power to change things realised that was wrong. We still need people to keep realising and remembering that its wrong to dehumanise those of us who are different and wrong to put us somewhere more convienent for others while pretending thats the only option for us. It really isnt.

Rickismom said...

Terrific post Dave. Powerful.
Annonymous, yes,I agree that we need not "tar all with the same brush". There ARE institutions and schools that TRY.For example, there are 2 special-need high schools in my community. Onetends to provide "babysitting", the other tries to teach. But that fact (that there is a more progressive school) does not free the community from the blame that they have made inclusion at high school level nigh impossible.
Society needs to support the rights of all people to live with dignity, and in the community, unless they are a DANGER to others (like murderers).

John R. said...

I would like to link to an entry I wrote in my blog. It is in celebration of the Direct Support Professionals who ensure that the people with disabilities they support are given a final celebration and fanfare at the end of their life...I think it is in great harmony and in the spirit of this hallowed day. Thank you Dave for the forum and inspiration to have this is the is called DSP Eulogies....

Anonymous said...

Dear Dave - Thanks for remembering - and thanks for helping to eliminate these places!

On another note, I have a question for you. Recently in my courses I read an article written by a man named Cort Sneider. The article was entitled "The Abel-Bodied Hegemony: The Social Construction of Disability". I was wondering if you had read this and what you thought of it. I was also wondering what you thought of the term he proposes for people with disabilities - "People with conditions"? I'd love to hear from you on this topic : )

Belinda said...

Dave, I posted belatedly, a republishing of a story I shared earlier this year

The story needs to be told over and over again. Thank you for prompting this.

Beth said...

Em, thank you for replying to anon as you did. I couldn't bring myself to.
I hope you find appropriate support services. I don't even know your country, so I can't say what's there for those. But I know there are support services in my state that I never knew existed until I went to my local intependent living center. A while after that, an aunt got a job as a carer that goes to peoples' houses and helps with personal care and her daughter got a job running errands and doing chores for the same population. I'm in the US and have no idea what's available wherever you are, but it's possible that in your communty, there are support services you'd use if only you knew they exist.

You reminded me of another evil of institutionalization: the fear its existence leads some people not seeking help they need lest they be placed where they will never be let leave.
Last year, a friendly acquaintance and neighbor of mine died. She had acquired disabilities and had been in a car accident. (I've no idea whether these are related or even which came first.) I do know that she was hospitalized and then institutionalized (probably in a nursing home) after the accident. She fought like hell to get out, and managed to after a few years. She never wanted to have to do that again. She was a strong self-advocate, and very knowledgeable of disability law. She made the apartment complex install a ramp by some handicap parking places (that, btw, didn't meet specifications beyond signage).
While she was living here, she got sick and then sicker (in ways that, afaik, weren't associated with her disabilities). She'd make doctor appointments... and then cancel them more often than not. Her doctor thought she shouldn't live independently; she was terrified that if she went to the doctor, she'd be forced to sacrifice her freedom, as it were. That was the last thing she wanted. So she got sicker and sicker... and she died, never reaching 50. I suspect there is a significant number of people with disabilities that die for much the same reason. Any institutionalization should have the goal of being as temporary as possible, without high barriers for exit. (Not to mention that doctors need to learn PWDs can live independently.) For the lives of people like Gia.

Anonymous said...

Mankind has and continues to served a great injustice to his own. The movement has come along way in society. Yet, the oppression of an entire population and their advocates are still alive within the systems/services that are relied upon. KKB