Dan: The Real Story

Read more about Dan at Action for Autism, The New Republic, and The Voyage.

Judged Unworthy

Have you heard the story of Barry Baker? On November 29, Baker, a disabled man in Sussex, England, called for an ambulance. He recognized that he was having a heart attack. He wanted to live. The dispatcher stayed on the line with him, waiting for help to arrive. Before it did, he collapsed, but the dispatcher kept the line open. When the ambulance arrived, the two EMT workers opened the door to Mr. Baker’s house. They saw a messy house. A very messy house. They saw a very large man, a man with a disability, a very large man with a disability, collapsed on the floor of a very messy house. They talked about him. They talked about his house. Expressed disgust at the way he lived. They talked about whether or not he was worth saving, agreeing to report that he was dead when they got there. The dispatcher heard it all, and turned the tape over to authorities. The EMT workers were arrested, and are free on bail until late in February.

It happened on November 29, it’s an old story. It was quite a bit later when I heard it. Late in December, the company charged with cleaning the house chose to release photos of Baker’s home, allowing all the world to see and comment upon and judge the state of Baker’s living room. People like to see the evidence, decide for themselves. Worthy or unworthy? Barry Baker was left to die in this living room. It is too late for him.

Just over a week ago, Dave Hingsburger posted a blog in memory of Baker at Chewing the Fat. He promised to tell people the story, to keep it alive. Now, I am telling it here. Baker’s story, on its own, is important for many reasons. It demonstrates the occasional failure of agencies sworn to help, of people paid to help, to remember that they are not endowed with the authority to decide who lives and who dies. People who are disabled, people who are “difficult,” are equally worthy of life and dignity.

This is a truth that has once again been called into question.

Minna Mettinen- Kekalainen, a 42 year old autistic woman with ALS has been denied services she needs to continue living. Apparently, the nursing agency that served her through the North East Community Care Access Centre in Sudbury, Ontario has reported harassment by Ms. Mettinen-Kekalainen since she threatened to report them for not following her doctor’s orders. The agency has said that they would not deny services to anyone, as long as their workers were “safe.” Meanwhile, the many forms of assistance she needs, listed by her as “basic hygiene, communication, mobility, and administration of medications, food and water” have been denied for forty days. It is hard to imagine that she could be much of a threat to anyone. No, she is being punished for speaking up for her rights. Judged as unworthy of care.

Read more about her story here and here and here and here.

In his post about Barry Baker, Hingsburger wrote:

I hope you will join me and bring Barry's story to others, begin a conversation of the dangers of disphobia and the need for us to be alert to the fact thatthose who are supposed to save us, may indeed kill us, that those who are supposed to care for us, may indeed hate us, that those who we are supposed to trust - can't be.

Here it is. It is happening again, more slowly, no less inhumane.

Please help spread Minna's story. If you have a blog, post a line or two about Minna. Contact one or more of the people listed here. Unworthy? She is a human being, and that should be enough.

Sudbury MPP Rick BartolucciConstituency Office email: rbartolucci.mpp.co@liberal.ola.orgMinistry of Community Safety & Correctional Services email: rick.bartolucci@ontario.ca
Minister of Health & Long-Term Care David Caplan: ccu.moh@ontario.ca

North East Community Care Access Centre (the centre that is refusing care to Minna)Head Office/Sudbury Branch1760 Regent StreetSudbury ON P3E 3Z8(705) 522-3461 or 1 (800) 461-2919 (Sudbury)

Maison Vale Inco Hospice (the place Minna hopes to gain admittance to)(705) 674-92521028 South Bay Rd. Sudbury, ON P3E 6J7Website: http://www.maisonsudburyhospice.org/Resident Care Coordinator Elaine Klym: elaine@maisonsudburyhospice.orgExecutive Director is Léo Therrien

David Butler-Jones, ; Chief Public Health Officer; (613) 954-8524

Square Talk: Inflexible Thinking

This Square Talk is dedicated to Evelyn Towry, an 8 year old Idaho student who was handcuffed and taken to the police station after an altercation over a cow sweatshirt.

Long may you moo.

Pink Panther times two

The Pink Panther has always been one of my favorite characters. As a child, I found the cartoon very easy to follow, as there was no requirement to process speech in order to understand it. Here, the Pink Panther offers his powerful vitamins to the public, with some unintended consequences.

I thought it might be fun to list some of the ways Pink Panther communicates in this cartoon, although he never uses spoken words. To get the list started, he writes, points, and rings a bell. How many other communication strategies can you find?

This next clip is from the 2006 movie, The Pink Panther, starring Steve Martin as Inspector Jacques Clouseau. Much frustration ensues when Clouseau is unable to pronounce a word as directed.

Clearly, the dialect coach messed up big time. A bag of M&M's in view might have been more motivating. Or could it be that Clouseau's way of speaking is already sufficient to meet his needs?

Everyday Terror

Why can't we face the truth? Having an autistic child wrecks your life. The title of Carol Sarler's article in today's Mail Online pretty much tells the story. It has all the drama you would expect from the title--a child who "screams like a banshee," moments of "everyday terror," parents who will never work full time again, an entire family ruined by the presence of an autistic child. Even the grandparents are starting to have disagreements over finances!

Sarler concludes her sad tale with her unsolicited opinion (it would be "impertinent," you see, to bring this up to the mother, yet not so much to broadcast it to all of cyberspace) that life would have been better for this family, for all concerned, had "Tom" never been born.

Yes, seriously.

I scrolled through the story as quickly as possible, reaching for the comments section where surely these hateful statements would be soundly refuted. There were some comments rejecting Sarler's conclusion, but quite a few agreed with her completely. I didn't get far before I found these:

I have no doubt that Tom is, through no fault of this own, a tremendous burden.

Oooh, you're going to have all the dogooders at your throat, but yes, his life should have been one unlived, sad but true.

Amen, no one is brave enough to say it but we all think it. What misery for all involved.

This is a very brave article. And very true. My twelve year old nephew is severely autistic. Needless to say, my sister and brother-in-law have a miserable marriage

Finally, someone with the spine to state the obvious. Thank you Carol Sarler.

Madam, you are very right. Something else, probably never thought of - the poor neighbours suffer as well.. their quality of life is also changed for the worse if they have the misfortune to live above, below or next to a family with such a child.

A very moving and thought-provoking article. I think many more people than are willing to let on would abort an autistic child if they knew.

Yes, there are more, feel free to look it up if you feel like taking a few punches to the gut.

Yes, I know that the Daily Mail is not to be taken seriously as a newspaper. But the number of people writing in agreement with Sarler is hard to take.

I have surrounded myself with people who agree that disability is not a tragedy, parents who treasure their autistic children. People who don't assign ultimate value based on what someone can or cannot do. Some call this "burying one's head in the sand," I suppose. I see it as a necessity. The will to go on can be fragile.

Do these commenters not even stop to think how this reporting of wrecked lives might affect their autistic family members? Or do they seriously believe that autistics are not aware of their openly expressed opinions?

Yet of the three generations, it is Tom who suffers most. And he's getting worse. As Helen [Tom's grandmother] said, only last week: 'We used to have a little autistic boy who was often happy. Now we have one who never is.'

Does anyone wonder?

Protest Pity

In case you haven't heard, Jerry Lewis is slated to receive the Jean Hersholt Humanitarian Award from the Academy of Motion Picture Arts and Sciences in February. There is still time to sign the petition here. Read more of the story here and here.

Where in the world is Steve D.?

Steve D. of One Dad's Opinion sends greetings from a recent, and well deserved, vacation. Check out his latest post here.

ASAN Recommedations to Obama Transition Team

This announcement is from Ari Ne'eman, president of the Autistic Self-Advocacy Network:

Hello,

This past Friday, we met with representatives from the Office of the President-Elect on Autism Policy. The meeting was attended by representatives from the Autistic Self-Advocacy Network, Easter Seals, TASH, the Marino Foundation, Autism Speaks and the Autism Society of America. At the request of the Office of the President-elect, we presented to the new administration our top three policy priorities for the coming year: 1) Supporting and Empowering autistic adults, 2) Ending School Abuse and Ensuring a Free and Appropriate Public Education for Every Student, and 3) Balancing the Research Agenda in Support of Quality of Life. You can read our recommendations to the new Administration on our website and we encourage you to post them on your blogs, listservs and elsewhere.

Although these are our top three priorities, they do not represent our only action items and we are pleased to report that the incoming administration expressed a strong interest in remaining in continuous contact on these and other issues. It is absolutely essential that we ensure that autistic self-advocates have a voice at the policy table and we will continue to keep you up to date as we advocate for the autistic community.

Nothing About Us, Without Us!
Regards, Ari Ne'emanPresidentThe Autistic Self Advocacy Network1660 L Street, NW, Suite 700Washington, DC 20036http://www.autisticadvocacy.org732.763.5530

Details of ASAN's recommendations can be found here.

Here is a brief excerpt:

Research that focuses on discovering and eliminating autism both enters the dangerous and unethical realm of eugenics and avoids addressing the social barriers that autistic people face that prevent quality of life and full participation and inclusion in society at large. Balancing the autism research agenda to focus on quality of life will pay dividends by providing evidence on the most effective methods of delivering services and providing for an effective education across the lifespan.

ASAN goes on to suggest that no less than a third of federal funding for autism research be allocated to services-based research.

The inclusion of ASAN in this discussion represents a big step in the right direction. A common myth about neurodiversity is that autistic self-advocates who support ideas like acceptance would prefer to see an end to autism research. That isn't the case. It's about resources. While huge sums of money are poured into finding the cause of autism, there are many autistic people who might benefit from services that money could buy. There are autistic adults who need help with employment, education, transportation, activities of daily living. Autistic children need Free and Appropriate Public Education. Adults and children on the spectrum need access to Augmentative and Alternative Communication devices. All of us need the opportunity to be fully included in the communities we live in. All of us need doctors and police officers who are properly educated about autism.

None of these needs are addressed by "Walk for Autism" events or public service announcements decrying the "horrors" of autism. But they are addressed realistically through the inclusion of autistic adults in formulating policy.

This is truly a hopeful start to the New Year.

Cages

Cages

This week, I visited two local pet shops. At the first one, I talked with two Blue and Gold Macaws. They were molting, and not in the best of moods. Their cages were marked: These birds will bite. The owner explained that they wouldn’t have much to say. That’s okay, I told her. They don’t have to talk in order to be loved. These were rescue birds, taken in by the shop owner after being mistreated or rejected by previous people. Yes, she said. They know that now.

At the second store, parrots were free to roam around large habitats, interacting with visitors. One tried to work the zipper on my jacket; another worked at removing an earring. There was a big Macaw in the back. He kept to himself for awhile, declining invitations to chat or play. He argued with a cockatoo about who would get to use the swing. After winning, he happily vocalized, Hello, Hello, Hi There, Hello. Swinging away. Enjoying the ride.

Joy

From The Joy of Autism blog: “Finding joy doesn’t come without struggle.” Estee gets a lot of flak from “autism advocates” for the way she supports autistic people. Sometimes I wonder if the critics read much beyond the blog’s title. In addition to joy, Estee writes about pain, challenges, anger, disappointment and hope, inspiration and grief. Her core message is one of respect for all people. But even if she did only write about things that made her happy, or if I only wrote about parrots and squares, so what? Celebrating life is not wrong. When situations are difficult, it becomes ever more necessary to find the parts worthy of celebration. It shouldn’t need to be said that finding joy in autism doesn’t mean that is all one finds. Besides, the internet could hold a few hundred blogs about joy and autism without making a dent in the negative things that get said.

Cages

My father used to say that there are two kinds of animals: the ones in cages and the ones not in cages. He repeated this “joke” a lot. I rolled my eyes every time. I thought he was being facile. I missed the point, maybe. He was teaching me about the concept of false dichotomy, and how just about anything can be set as the bar separating one “type” from another. Today, I am able to see a deeper truth embedded within the silliness. In a way, Dad was right. The cage itself makes the animal less what it is, puts the individual on display to represent its entire species, keeps the people on the other side safe, looking in, imagining that what they see is the truth about that specimen, that species. Two realities: what is and what is seen from the outside.

“Reality”

According to some “autism advocates,” there are two kinds of autistics. The distinction varies, sometimes stated as autism vs. Asperger syndrome, speaking vs. non-speaking, or even, incredibly, miserable vs. joyful. Not only are there two types of autistics, some of these advocates claim, the voices of one “type” necessarily deny or trivialize the needs of the other. The idea that one “reality” trumps another, the idea that “reality” is static, the idea that one organization or entity owns the definition of “autism,” the idea that seeing, even at the surface, is believing, these form the bars to a cage that keeps those on the outside wondering. Which is the “real” autistic? Of course the question is silly, born of the false belief that the autistic person one sees in the nearest classroom or family (or mirror?) must be the archetypal Autistic from which others are once, twice or infinitely removed. The fact that my reality is different from someone else’s doesn’t make either of them less valid. There are as many autism realities as autistic people. This really shouldn’t need to be said.

Cages

I do a lot of talking about autism. These presentations cover a variety of topics from communication strategies to employment to self-advocacy. Somehow, I always end up having to talk about murder. I don’t like talking about murder. It isn’t fun. It doesn’t make people happy to hear about Katie McCarron, Jacob Grabe, and Tiffany Pinckney. It doesn’t please people to hear about the shock interventions used routinely at the Judge Rotenburg Center. Students locked in isolation rooms. Caged. Children evicted from fast food restaurants and churches and kindergarten classrooms, none of this is enjoyable. I don’t make a lot of friends doing this, but it has to be done. Whatever the topic, these things work their way to the surface, demanding attention, because they are what matter most.

And then I come home and read once again that neurodiversity is some sort of “feel good ideology,” denying the hardships faced by autistic people and their families. I read somewhere else, once again, that autistic adults do not exist, that we are a different animal entirely from the children who are “really” autistic. I want to just shake my head and go on, but I can’t. I can’t get over it. I tend to obsess about things, this is my nature. This is my cage, and also my swing. From the other side, Hello! Hello!