Tuesday, March 27, 2012

Developmental Disability Awareness Month 5

Seeing how yet ANOTHER Developmental Disabilities Awareness Month is coming to a close, I'd like to know how many people even knew it?

Wednesday, March 21, 2012

Wrongful Birth

I'm feeling badly about the verdict reached in an Oregon court last week, where it was decided that a health care provider was libel for almost 3 million dollars to the parents of a Down Syndrome baby. It was a "wrongful birth" suit, brought because a Doctor failed to diagnose the child BEFORE she was born. It only took the jury 6 hours to deliberate (12-0), and find for the parents.

The main reason this bothers me is that I've come in contact with so many Down Syndrome people in my life, and the idea that they could have been aborted is very upsetting! I struggle with the knowledge that as technology has evolved, it's now pretty easy to find out if a baby is not "perfect" while still in utero. If not, an abortion can put an end to the possibility of having to work hard in oder to support the child.

During WWII, the Nazis experimented on this sort of thing in the hope of creating the "perfect" race of people. Hitler had a particular distaste for people with disabilities. I'm sure he'd approve of this wonderful technology. And if a birth is determined to be "wrong", why can't also a life be determined to be "wrong"? Do we really want to go down that road of "Perfection"? I don't!

There have been studies done where somewhere between 89 and 92 percent of women have said they would terminate their pregnancy if they knew they were carrying a Down Syndrome child. That's an astronomical statistic! I'd also like to know if they interviewed mothers wih Down Syndrome children. The mothers I've met deeply love their children! As a parent, I'd much rather deal with the needs of a child with a disability, than a child who grows up with entitlement issues. I guess that's just me...

Friday, March 16, 2012

It's NEVER Ok To Murder Your Family Member!

Autism Campus Inclusion
Last week, George Hodgins, an autistic adult living in Sunnyvale, CA, was murdered by his own mother. In the aftermath of his death, much of the public discussion surrounding his killing focused on expressing sympathy for his killer. ASAN Member Zoe Gross of Oakland, CA objected to this and helped organize a candlelit vigil in memory of George and all disabled people who have been murdered by their family members. The vigil will take place tonight at 6 PM PST, rain or shine, in front of the Sunnyvale City Hall building. Details can be found here: http://www.facebook.com/events/199680943470301/.

We urge supporters of disability rights and neurodiversity to join Zoe and other local Autistic people and allies in the California bay area in remembering George this evening. For those who can not make it, we are printing Zoe's prepared remarks below:

Last Tuesday, George Hodgins was shot and killed by his mother, who then killed herself. George lived here in Sunnyvale and he was 22 years old. I didn't know George, but I can't stop thinking about him. Maybe it's because we have a lot in common - we lived near each other, we were the same age, we're both autistic, although we led very different lives. I would like to have met George, but I can only mourn him. And I can try to make sure that his story isn't forgotten.

In the wake of this tragedy, I read a lot of articles that asked the readers to imagine how George's mother must have felt. But I didn't see a single article that asked the reader to empathize for George, to imagine how it feels to see your mother point a gun at you. I've seen a lot of people talking about how hard it must be to live with an autistic relative, but I didn't see anyone talking about how terrible it be to die knowing that your parent, who you love and depend on, has decided to hurt and kill you.

Because he was autistic, George is being erased from the story of his own murder.

The story of George Hodgins's death is being discussed and presented as a story of a mother who snapped, and the story of other parents who have felt the same way. It's being told as a story about a lack of services for families with special-needs children, as though a lack of services is a justification for murder.

When disabled people are murdered by their families, this is the story people want to hear. It's the same story that we saw in newspapers after Katie McCarron was murdered, and after Jeremy Fraser was murdered, and after Glenn Freaney was murdered, and after Zain and Faryaal Akhter were murdered. The story goes like this: it is understandable that someone would kill their disabled relative if they don't get help to care for them.

I don't think this is a true story.

Why is the story being told this way? Because we live in a world that doesn't acknowledge the value of our lives as disabled people. Because so many people in our society can't imagine a disabled person living a fulfilling life, so they don't see the tragedy and the wasted potential when one of our lives is cut short.

As disabled people, we have to take a stand against this kind of thinking. We have to get the word out that our lives matter, tha tour lives are our own stories and not just the stories of our non-disabled parents and relatives and caretakers. We have to let people know that they are missing part of the story.

Because the story of George Hodgins's murder is also the story of the disabled community losing one of our own. It's the story of the other disabled people who were murdered by their family members, and it's the story of the society that thinks so little of people with disabilities that these murders are all too often justified as "understandable." Most of all, it's George's story - the story of a young man who enjoyed hiking, who was always looking to learn new skills, who had his whole life in front of him.

Now George is gone, and only his memory remains, and already that memory is being distorted by people who want to tell his story and leave him out. That's not going to happen tonight. We're here to remember the real story.

Saturday, March 03, 2012

It's Not Illegal to Be An Ass Hole

In 2008 I wrote a post about the financial exploitation of people with developmental disabilities. I used an article from a Washington newspaper to demonstrate what I was talking about, and to serve as an example. Not long after I published the post, one of the people accused in the article submitted a comment calling me to task for several mistakes in the newspaper article.

As I was not the author of the article, I commented back, that if they had a problem with it, they should contact the newspaper about it. I was merely using it as a reference. Not good enough I guess. I began getting comments from this person that were filled with personal attacks aimed at me. I couldn't figure out where all this anger was coming from, but published their comments along with some push-back.

Over the next 3+ years I'd get an occasional rant from this guy, which I'd publish along with my own thoughts regarding what he'd written. It was getting pretty silly actually. Then the other day he finally got down to what the problem REALLY was.

He said that every time someone googled his name on the internet, the first page that came up was my blog post about financial exploitation. I tried it myself and found out he was right. At first I thought of all the attempted (misdirected) character assasinations that this loon had sent me, and was tempted to leave the post alone. Then it came to me, as though the Lord was whispering in my ear... "Its not illegal to be an ass hole", and deleted the post.