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.