Monday, January 23, 2012

Cousin Mattie: The International Day of Mourning and Memory

Cousin Mattie scared me, not because of who she was, but because of what she represented. By the time that the whispers of her existence reached me, I knew I was different. I didn't have a name for it and it would be some blessed years before I first heard 'faggot' and 'gearbox' and 'homo'. The naming of my difference, apparently, was done by those who hated it. All I knew was that deep down inside me there was housed difference. It doesn't take children long to learn that difference is to be feared, to be beaten and to be bullied. I see all these advertisements about bullying on television and, though I applaud the effort and intent, I always feel that the message is always written by those who once bullied never by those who experienced it. Difference, at an early age, came to mean separate. That, I had learned before the whispers of Cousin Mattie. That, I hed learned early and well. I began building an inner home of safety with tiny baby fingers in which Lego blocks looked huge.

Though I couldn't name my difference, I could fear it. I feared what it meant, not as a descriptor but as a predictor. I knew that this nameless difference would mean loss and hatred and even violence. Cousin Mattie had a nameless difference too. She was spoken about in whispers. She was part of a conversation that adults had with adults. Cousin Mattie was only spoken about when we, children, were sent outside to play. I never saw Cousin Mattie. I never met her. Even so, her absence made her very present at family events. There was someone who's name had the power to silence conversation, who's name had the power to freeze adults to the spot, who's name had the ultimate power of shaming. Cousin Mattie lived elsewhere but her hand manage to grip the soul of my family.

As I grew older and brasher, I learned only that Cousin Mattie was 'slow'. I don't think the 'r word' was used to describe her. When it became clear to me that Cousin Mattie had been cast out for her difference, the realization rang a bell in me that has still not stopped sounding. Selfishly, I understood her as a warning, not as a person. I thought, then, little of where she was or what was happening to her, I thought only of me - and my difference. I looked at the faces of Aunts and Uncles, of Grandmothers and Grandfathers and, of course, Parents ... and knew, deep down, that I was already cast away. That I was loved, conditionally, that I was loved for the 'David worn' for public view, not the 'David lived' in private.

The existence of institutions that lock away the different was purportedly done by a society that willed to care for the 'less fortunate' - a term that itself reeks of prejudicial thinking, every time someone uses that term they stand a little taller knowing that fortune blessed them, that life gave them a prize and that God grace fell upon them. It's amazing how privilege is always believed to be deserved. Those institutions, where Cousin Mattie lived, to me were never about care, they stood as monuments to the tyranny of the norm. They stood as reminders to all that in a moment, in an instant, freedom and liberty and justice can cease to exist, replaced with policies and procedures and programmes. I didn't know where the 'away' was where Cousin Mattie lived, but I didn't need to know. What part of 'away' is hard to understand.

I still don't know where she lived and when she died. I do not know where she was buried. I do not know how she lived or how she died. She never knew that I never knew. Worse, she never knew that I cared to know. The fact of institutionalization, for it is still a fact, is a societal travesty that continues unrecognized. It is unrecognized for the damage that it did, not only to the lives of those with disabilities, but also to the large social psyche of humanity. We live in a society wherein, all over the world, thousand upon thousands of fellow humans, fellow citizens are caged. We live in a society where barbarity is called compassion and wherein the propaganda against the difference of disability goes unchallenged by all but those who know and experience disability. The testimony of those with disabilities as to our human status is seen as 'cute' and maybe 'charming' and maybe even 'inspirational' but it's never accepted as really true. The testimony of parents who embrace and love their kids with disabilities, who see them grow and see them learn is dismissed as denial and self delusion.

Cousin Mattie lived a life in whispers and in silence. But so too do those of us with disabilities who wish to be part of the debate about the value of our lives. So too do those who parent and those who marry and those who love us who would wish to raise a dissenting view. I am told that justice will prevail, but I do not believe this ... justice, as everyone knows is blind and therefore, like millions of disabled people, is busy looking for a job.

This day, the first 'International Day of Mourning and Memory for the Lives of People with Disabilites' was created to call attention to the crimes against the lives that could have been lived, that should have been shared. It is also dedicated to those who continue to rise and fight, who refuse to be silent, who advocate long past exhaustion. And it is here that I want to mention Cousin Mattie again.The only thing I know about her was that she was a difficult child - a defiant child. Cousin Mattie was a fighter. I think that is the only reason I ever heard of her at all. She had to be discussed, she must have fought hard against the constraints of her life, because, then as now, families come to meetings when people become problems. Cousin Mattie will never know what her life came to mean to me.

I understood, long before it became time to announce my difference, what it might cost me. I understood that there was a land called 'away'. And I wasn't afraid of that land - because I had family there.


Amanda said...

I posted a comment on one of your posts from a few days ago, about what it is that makes institutions bad, vs. what people expect makes them bad. The core badness is neither the things you said you usually think about, nor most of the stuff in the song, although those things of course are really bad in themselves. It's just that there's much worse than either of them.

Anyway, Andrea Shettle asked me to post my comment as a blog entry in itself, so I posted it as What Makes institutions Bad. Leaving the link here is easier than breaking it into three parts and re-commenting. :-P

ssassefras said...

Re: "It's amazing how privilege is always believed to be deserved."

This. Always.

Re: "We live in a society wherein, all over the world, thousand upon thousands of fellow humans, fellow citizens are caged. We live in a society where barbarity is called compassion and wherein the propaganda against the difference of disability goes unchallenged by all but those who know and experience disability."

Dave, have you ever read Ursula LeGuin's The Ones Who Walk Away from Omelas?" You brought it starkly to mind. ( ) I've always had problems with the story--walking away just doesn't cut it--but it haunts me. Years and years later, it still echoes.

Re: "I am told that justice will prevail, but I do not believe this ... justice, as everyone knows is blind and therefore, like millions of disabled people, is busy looking for a job."

Ouch! Damn,Dave, when you nail it, you nail it.

ssassefras said...

(CT above)

John R. said...

I will take today to stop and think of two particular places. Each of them in New York State. Each one of them incarcerated well over 10,000 people in their "heyday". The two institutions each had cemeteries. Each of the cemeteries used headstones with numbers identifying the person buried below and who was unfortunate enough to not have a name, at least to be memorialized on a tombstone. Today I will remember those people who were buried there. I will only have imaginary images but I will do my best.

Perhaps more importantly today, I will also reach out and discreetly visit several people I support at my agency, ones who lived in those exact institutions and I will say their name to them and to the people around them. I will have coffee or tea with them and I will look in their eyes and I will just know....they will be people that will die with a name, a vast array of memories and more than anything...they will die one day having been loved and will have a bed of memories they can go to eternal rest on which to sleep.

Belly (Liz McLennan) said...

"...I understood her as a warning, not a person."

Wow. What a one-two punch sentence. Dave, of everything I've read, I think that this post is my favourite - it's raw and gritty and furious and indignant kind and loving, all at the same time.

Sad poetry, indeed.

Kasie said...

Sharing the day, the meaning of the day and your words with everyone within my reach today!
Thank you for all you do!

Colleen said...

Dear Dave:

A powerful post on this day. You never knew what happened to her - absolutely heartbreaking.

Amanda - you are so right - what makes an institution is not the walls - it is the abuse of power.

So far I am touched deeply by the people at my workplace who are observing the day.

Thanks for igniting the spark

Louna said...

I have written a post for the day. Mostly, it's a collection of links about cases of abuse, neglect, refusal of medical services and death of people with disabilities.

Andrea S. said...


I have now made a blog post about today at my "We Can Do" blog (which focuses on disability, human rights, and international development in developing countries): Institutionalized Lives of People with Disabilities--Forgotten Lives and the Ones Who Fight Back. In this post I consider what organizations would need to pick up your idea for it to meet with wider success in the future; links to various organizations that are fighting modern-day institutionalization of people with disabilities in both developed and developing countries around the world and other issues of importance to people with disabilities; links resources that can allow people to learn more about institutionalization and what is being done to stop it; and links to various posts at your blog and also Amanda Bagg's blog about institutionalization. This includes a link to your blog post here, and also to Amanda's blog post on What Makes Institutions Bad.

I hope that readers here will find this a helpful resource, even if it comes somewhat late in the day for people in some time zones.

Ruti said...

How do I discuss this with kids? They need to know about this.

Tamara said...

Coincidentally, I received an email today that the governor of the state I live in, Illinois, is closing two institutions.

I am sad to read the responses from the community - where they're more concerned about job loss than about the lives of the people who have been institutionalized. Or the parents who are against it saying that the community supports will not work. Why would they want their family members to continue being institutionalized?

Myr said...

Dave I realised something I knew but didn't know (it was only when I read about your cousin Mattie I realised.)

I have been remembering the stories of those I knew who had been in institutions and I suddenly remembered my mum's cousin who was "deaf and dumb" and "difficult" (my mum's words) who was sent away. He was in an institution! He was sent from Scotland to England and he died there and the family were never told, they only found out when my uncle went to see him on his annual pilgrimage.

I saw a picture of him once, blonde, blue eyed and such a beautiful child but difficult and apparently my gran couldn't cope with him after his parents died.

Couldn't cope
Put away
Sent away

I didn't know Jim Fulton but suddenly the International Day of Mourning and Memory has taken on new meaning. I dont know where he was sent or where he is buried. I will find out.

FibroFacialGal said...

Being different and losing power scares the ever living hell out of me.

Seeing what happens to those who are "difficult" is a powerful deterrent: it makes us hide who we are for good reason. Totally logical to want to escape the repercussions.

And so totally wrong.

No wonder people like me hide our disability from everyone and work ourselves into the ground to fit in and appear "normal".

Working for our healthcare system does nothing to ease my mind- I think it's left me with PTSD. Seeing what really happens to the different, difficult, and exceptional has been a shock.

Again, as always, thank you for your voice and your sensitivity in doing battle on this front.


Myr said...

I forgot to add my blog entry (sorry for making another post)

wheeliecrone said...

A great blessing that my parents gave to me - they taught me, "Different does not mean better or worse, it just means different. Get used to it."
Words cannot express how grateful I am to have had the opportunity to learn this lesson.

One of the people I remember today, is a wonderful woman named Kim. Kim passed away on Boxing Day 2011. Kim had spent some of her early life in an institution. Kim spent the rest of her life advocating for people who live in institutions and fighting against the institutionalisation of people. She was courageous. She knew how to ask the questions that no one else dared to ask and say the things that many did not dare to say.

I miss Kim.

CJ said...

I so wish Eric Borges had family there. His family cast him out because he was gay. He was also a gifted film maker. Eric did volunteer work in suicide prevention and supporting gay and lesbian youth, yet ended his own life. When I read this I kept thinking, I so wish he was my son. I already have two but he would have been welcome.