Sunday, December 16, 2012

"My father was not an evil man. He was NOT EVIL. He was mentally ill. He was sick."

Through sharing her personal story of her family's struggle with her father's mental illness, my friend Jill has articulated some of what I've been thinking in response to the recent tragedy in Connecticut. In case you can't access Jill's facebook post, here are her words:

When I was 8 years old my father was diagnosed with paranoid schizophrenia. Some of my childhood memories include the CIA showing up at our house to discuss a death threat letter he'd written to the President of the United States... watching a news broadcast of a mass shooting and seeing a composite sketch flash onto the screen that looked like my father (thankfully, it was not)... seeing him parked outside my elementary school every single day watching me and the building and who knew what else... hearing him threaten my mother... accusing her of impossible, terrible things... knowing he had a gun... hiding for my life...

But most of all I remember the pain and anguish my mother went through just trying to get him help. Due to laws that are made to protect patients, my mother was never able to get my father the help he desperately needed. He lived and died on the streets thinking the mafia, the government, and everyone was after him. He died alone and afraid. I am so grateful that he never hurt anyone else... that he never shot up a school full of children because the voices told him that to do so would be saving the world. I remember him telling me he was God.

My father was not an evil man. He was NOT EVIL. He was mentally ill. He was sick. Before his illness manifested he was a gentle man. He was an artist. He was really kind and generous and sweet. He loved to play the organ and sing off key. He loved to do crafts with me. He worked hard. He took care of his family. And then his mental illness manifested and he changed so quickly and so drastically. From the time I was 8 years old until his death in 2008 I lived a life of looking over my shoulder, being careful to keep my whereabouts secret... I didn't even use my real name on the internet until he was dead.

When I hear people talk about the people who commit these crimes as evil and "of the devil" it breaks my heart all over again. No one believed my mother when she would explain our situation. No one believed that my father was capable of doing what he was doing to us. And it is clear to me that most people still really do not understand mental illness... especially paranoid schizophrenia. What IS evil is a world where mental health issues are not taken seriously until someone does something so terrible like shooting up a school, a mall, a government building. There is no hope out there for people with severe mental illness. And there is no compassion for them either.

So while I am praying so hard for those children who were killed and their families who have been left to pick up the pieces... and while we are arguing over gun control and improved security.... my heart is also breaking for the folks that people label as evil... for the mentally ill who can get no help... and for their families who live in fear and pain and KNOW that something like this can and might happen but can do NOTHING about it. 

Friday, December 14, 2012

ASAN Statement on Media Reports Regarding Newtown, CT Shooting | Autistic Self Advocacy Network

"Today’s violence was the act of an individual. We urge media, government and community leaders to speak out against any effort to spuriously link the Autistic or broader disability community with violent crime. Autistic Americans and other groups of people with disabilities persist in facing discrimination and segregation in school, the workplace and the general community. In this terrible time, our society should not further stigmatize our community. As our great nation has so many times in the past, let us come together to both mourn those killed by acts of heinous murder and defend all parts of our country from the scourge of stigma and prejudice."

ASAN Statement on Media Reports Regarding Newtown, CT Shooting | Autistic Self Advocacy Network


Monday, December 10, 2012

Karla's ASD Page: Thriving on the Autism Spectrum in a Neurotypical (NT) World

I've been enjoying Karla's ASD Page on facebook very much! Here's a description of the page in her words:
This site is dedicated to bringing together a collection of articulate, respectful and intelligent ASD Adults with parents/professionals and other Neurologically Typical [NT] caregivers and partners all with the goal of raising awareness of the shared cultures while creating resources and answers to help every ASD person THRIVE not just survive. 
Karla also has a wiki page on this topic. I really appreciate the way she talks about successfully navigating interactions with NT people. In order to succeed, an ASD person needs "to integrate in a culture that is foreign to their own. The way to SURVIVE is to tolerate the other culture, but the way to THRIVE is to understand it at a deep enough level to take a different perspective." The objective of the site is to bring NT and ASD people together to learn about each other's cultures.

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http://asdculture.wikispaces.com/file/view/Slide2.JPG/283175268/Slide2.JPG
This is an idea I've encountered in the mental health client empowerment movement, as well. Treating cognitive and emotional styles as cultural differences makes a lot of sense to me. For people who are already familiar with multicultural ideals of honoring diversity, it removes the judgment implied by labeling something a disorder or disability and replaces it with a frame that fosters mutual understanding and respect. Thanks, Karla! The way you've described this resonates for me and has clarified my thinking. It reminds me that I tend to focus on each of us learning about ourselves, and I'd like to integrate more information about how to learn about and communicate with each other, too. I look forward to learning more from you about how these ideas apply to interactions between NT and ASD people.

The graphic that follows is an example of how Karla uses this frame to create a simple request for accommodation. What would you tell your boss about your needs? What would you ask for help with?


Saturday, December 1, 2012

Life and Music

"We missed the point the whole way along. It was a musical thing and you were supposed to sing or dance while the music was being played." -Alan Watts