Protesting Autism Speaks

ASAN is protesting Autism Speaks in New York right now at 6pm. They are meeting at Seventh Avenue and 57th Street, 154 West 57th Street in New York City at 6 PM to hold up signs and hand out flyers to Autism Speaks sponsors going in to their New York City concert with Bruce Springsteen and Jerry Seinfeld.

Given that it's nearly 5pm my time, it's a little late to advertise the protest. However, I realize that not everyone, even if they are available to go to the protest, are able to go, stand on a sidewalk and confront, even non-verbally, complete strangers.

So, what I'm thinking is this; letter campaigning, to celebrities and officials, emails to Autism Speaks itself (since it states that they would LOVE to hear from autistic individuals, email them at contactus@autismspeaks.org.), bookmark campaigns, and meme-ing.

The letter campaigning and it's digital offshoot, emailing, are fairly traditional ways to protest, as well as signing petitions. (which reminds me, the ASAN petition is still available HERE http://www.ipetitions.com/petition/AutismSpeaks/)

But what are bookmark campaigns? Well, it's kind of like handing out flyers, except indirectly. You create/download cards, as in business cards, that can contain a slogan, some information, and a website URL. You print out the cards and then go to either libraries and bookstores, and slip them into books. I recommend related-topic books, such as the autism books, as well as some of the current bestsellers, recommended, new arrivals and speed-reading books. These are books which are most likely to get picked up, and concern the most relevant readers.

EDIT: Here's a card that I made up as an example. I fully give permission for people to use it for bookmark activism :D




As for Meme-ing, well, that's the continuous re-posting of information, whether it'll be quizes, questionnaires, or the chunk of information I'm about to post below, the reasons why ASAN is protesting Autism Speaks.

These are just a FEW of the ways in which we can protest. These aren't the ONLY ways to protest, and no one has to do them all, or any of them. People are certainly able to come with new ideas to protest that accommodates their abilities and what they feel comfortable doing.

If you have any of those ideas, feel free to comment with them. I'd LOVE to hear new ways of protesting.

Finishing up, here's my meme-ing protest, the reasons why ASAN is protesting Autism Speaks (bold is mine).

WHY ARE WE DOING THIS?

1. Autism Speaks talks about us without us. Not a single Autistic person is on Autism Speaks' Board of Directors or in their leadership. Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions.

2. They use fear and stigma to try and raise money off the backs of our people. Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum. Autism Speaks' advertising claims that Autistic people are stolen from our own bodies. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

3. Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

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Language, Disability, and Injustice

Before I get started, I want to address something. In this piece, I use words such as, well, "words" and "speaking". This does not just apply to vocal communication. I do not limit the concept of speaking to just vocal communication, but in this piece am using the word to apply to all manners of communication: typing, sign language, picture boards, drawing, etc. For too long has speaking been considered the act of communicating vocally. I'm not using it that way here.

Also, all bold emphasis is mine

In my church, we're studying the book of James in the New Testament, in a series we call "When the Rubber Hits the Road". In this series, we're studying how lessons from the past can still be used today, particularly from James, as a majorly practical book. A few weeks ago, we were studying the first part of Chapter 3, in how we speak and even, how we DON'T speak. Now, I'm not going to summarize the whole Christian sermon, because it'll be like I was trying to push my religion on other people, but it got me thinking. The three points where about words that don't match beliefs, words that are used as weapons, and the lack of words. I'm pretty sure we get saying things that don't match what we believe in, but it's the words used as weapons, and just as importantly, when we don't speak up at all that I want to address.

Kowalski pointed out a post by Renee that asks

If a friend or relative makes a racist or homophobic remark, do you tend to confront them or let it slide? Are you more likely to confront them if it offends you directly or someone else who seems reluctant to speak up?

In the discussion, it was brought up that there are times when it takes us a while to fully process the conversation, delaying our ability to react to inappropriate remarks. Shock also tends to still our reactions, as well as uncertain relational standings where it might not feel comfortable or appropriate to approach an individual. Bev referenced Dave Hingsburger, a Canadian disability self-advocate who recently was inducted into the Canadian Disability Hall of Fame, who in 2008 came up with the idea of business cards as a way to educate and address issues such as derogatory comments, without being considered too sensitive and the effect of people just not saying those comments around you.

I think this is a very good idea. (Personally, I'd make the message more personal, in a "would you like it if someone said that to you?" kind of way, but same approach, really) It's a non-confrontational method of addressing the issue without making a big scene and potentially embarrassing not only oneself, but the person being addressed. This way, a person may be more receptive to understanding, which makes a big difference, in my experiences.

However, I believe that this can be taken to a level further. In the sermon I mentioned above, the speaker talked about a Christian's duty to speak up against injustice, that

When it comes to things like injustice and poverty and abuse and hunger and HIV/AIDS and racism, and kids dying from preventable treatable diseases, and environmental destruction, as people of faith, we cannot be silent. We have to speak. We have to put the power of words to work.

I don't think that it's just a Christian's duty to speak up against injustice. I think that it's a human's duty to speak up against injustice and to work to change the way society works in order to reduce the injustice that occurs. This is because injustice occurs that is injustice not only from a Christian's perspective, but from all manner of religions and backgrounds as well. Injustice is not exclusive. It affects everyone, in one way or another.

Injustice, of course, can take many forms, from discrimination, poverty and environmental destruction, to even the simple misuse of words, as addressed above. However, what is injustice in the Disability community? Certainly, discrimination and abuse is the most obvious form, but does it not go much deeper? Is inadequate services and supports also not an injustice? Is attempting to cure and change people to fit a pre-conceived mold that doesn't fit also not abuse and an injustice? Should we not be working to make the changes to stop this?

I think so, and certainly I don't think I'm the only one. A (rather long) excerpt from Kim's blog post No vanilla for me, Another one bites the dust, and Insomnia

[T]here's an element of moral superiority in assigning disability status, an absolute sense that the non-disabled is superior. And I think that's wrong. I do. So, I looked at these sixty plus individuals who attend the center with my son, whom he has known for six years now, who care about him and accept him as he is, and I thought about those people who would push for cures for each of them as if who they were was inadequate, insuffient, insignificant. And I thought of those who would look at these interesting, animated individuals and see them as lacking, as less than, and I was irritated. I think that, when the support is adequate, when the acceptance and appreciation is there, these people who are unable to care independently for themselves can have very good, extremely satisfying lives. Where the support sucks, where the appreciation and respect are not there, I think their lives can by an abysmal hell.

I think that rests squarely on society's shoulders. And I think that organizations that promote the idea of vaccines as the culprit for autism damage their children's future and mine when they engage in their bullying and fear mongering tactics. I think they don't speak for me, for my children, for many of us and it's more than time to make sure that if people in mainstream society hear someone calling themselves a warrior or an autism parent and they aren't in the military and aren't autistic themselves, the mainstream will have a real clue as to the belief structure of the person they are dealing with. These parents haven't put child-centered language first in their advocacy; they've placed themselves first. It's about them. About recovering their American dream of a cushy, easy life in which their children outshine others.

To look at someone with a disability and feel sorry for them is to demean them and their inherent value. It presumes you have an elevated status above them. To look at them and feel empathy for their challenges and respect for how they persevere is to see them as fully human. To work to assist them in creating what they consider meaningful, valuable lives while working to reduce any suffering, to heal illnesses is not noble. It's the right thing to do.

Kim's post reminds me of the message by Dr. Glenn Rampton, C.E.O. of Kerry's Place Autism Services, a service provider in Southern Ontario celebrating 35 years of service:

Recently, we witnessed a monumental achievement in the fulfillment of the Government’s promise to end institutionalization for individuals living with developmental disabilities. The official closing of Huronia, Rideau and Southwestern Regional Centres paved the way for Kerry’s Place Autism Services and its community partners to engage the public in gaining a better understanding of these individuals and their right to live, participate and prosper as valued members of society. The struggle is not over, however, as we must continue to help people in communities throughout Ontario and elsewhere to overcome stereotypes and misunderstandings to understand the need for, and to create appropriate environments and supports in which individuals with autism spectrum disorder can thrive.

Now, I may be a bit biased, since I've worked with Kerry's Place for a while, and even now am active as part of community education and awareness projects. However, from my experiences, Kerry's Place has demonstrated that it is possible to make a difference, to create an environment that is supportive, accepting and safe for autistic people to become as independent as possible and fully integrated into society. It may take a lot of work, but it's a realistic goal.

This may be as simple as handing out cards when you come across discrimination, or working with different groups to overcome differences and reach understanding. It may be something small. You can always start small, but I would hope that we will work our way up to doing big things to make a large difference.

Zazzle Store

Yes, I got myself onto Zazzle, and, due the encouragement of many, made up a couple of shirt about reaching the two week mark of getting my H1N1 shot and not being more autistic yet.

Also made some other shirts. Trying to come up with some other designs and whatnot.




create & buy custom products at Zazzle

Shameless self promo, I know. But people have been telling me to make shirts for a while.

ASAN Petition

Please, I think this needs more attention. This is the ASAN petition against Autism Speaks.

http://www.ipetitions.com/petition/AutismSpeaks/index.html

We, the undersigned organizations representing self advocates, parents, professionals and allies in Disability Community, are writing to you to express our concern about Autism Speaks. Our work is about helping empower and support people with disabilities of all kinds, including adults and youth on the autism spectrum, and we recognize that there are a wide variety of means towards accomplishing this goal. Yet, Autism Speaks’ choice to use fear, stigma, misinformation and prejudice against Autistic people as a fundraising tool does real damage to people with disabilities. The most recent example of lack of ethics can be found in Autism Speaks’ new “I am Autism” campaign which states, “I am autism...I know where you live...I work faster than pediatric AIDS, cancer and diabetes combined. And if you're happily married, I will make sure that your marriage fails. Your money will fall into my hands and I will bankrupt you for my own self-gain...I will make it virtually impossible for your family to easily attend a temple, birthday party, or public park without a struggle, without embarrassment, without pain...I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness."
Not only does this campaign rely on offensive stereotypes and inaccurate information (research indicates that parents of Autistic children are not more likely to divorce than parents of non-Autistic children), but it does real damage to the cause of disability rights. By choosing to portray Autistic people as husks of real people, stolen out of our own bodies, Autism Speaks reinforces stereotypes and prejudice against people with disabilities that have existed for centuries and have been the source of pain, segregation and violence.

We are calling on you to end your support for Autism Speaks and to find new ways to show your support for Autistic people and others with disabilities. As the result of a pattern of unethical behavior and irresponsible governance, outlined below, we believe that Autism Speaks as an organization no longer deserves your time, energy, money and support.

Autism Speaks uses damaging and offensive fundraising tactics which rely on fear, stereotypes and devaluing the lives of people on the autism spectrum: Autism Speaks’ unethical fundraising tactics are not limited to the new “I am Autism” video. Its television Public Service Announcements compare having a child on the autism spectrum to having a child caught in a fatal car accident or struck by lightning. In fact, the idea of autism as a fate worse than death is a frequent theme in their fundraising and awareness efforts, going back to their “Autism Every Day” film in 2005. Indeed, throughout Autism Speaks’ fundraising is a consistent and unfortunate theme of fear, pity and prejudice, presenting Autistic adults and children not as full human beings but as burdens on society that must be eliminated as soon as possible.

Very little money donated to Autism Speaks goes toward helping Autistic people and families: According to their 2008 annual report, only 4% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services. Given the huge sums of money Autism Speaks raises from local communities as compared to the miniscule sums it gives back, it is not an exaggeration to say that Autism Speaks is a tremendous drain on the ability of communities to fund autism service-provision and education initiatives Furthermore, while the bulk of Autism Speaks’ budget (65%) goes toward genetic and biomedical research, only a small minority of Autism Speaks’ research budget goes towards research oriented around improving services, supports, treatments and educational methodologies, with most funding going towards basic research oriented around causation and genetic research, including the prospect of prenatal testing. Although Autism Speaks has not prioritized services with a practical impact for families and individuals in its budget, its rates of executive pay are the highest in the autism world, with annual salaries as high as $600,000 a year.

Autism Speaks excludes the people it pretends to represent: Autism Speaks is one of an increasingly few number of major disability advocacy organizations that refuse to include any individual with the disability they purport to serve on their board of directors or at any point in their leadership and decision-making processes. In large part due to Autism Speaks’ public relations strategy of presenting Autistic people as silent burdens on society rather than human beings with thoughts, feelings and opinions, Autism Speaks’ governance policies are deeply unrepresentative and out of step with the mainstream of the disability non-profit community.

Contrary to the “I am Autism” video, which equates autism with AIDS and Cancer, autism is not a terminal disease. It is a disability that comes with significant challenges in a wide variety of realms. Yet the answer to those challenges is not to create a world in which people are afraid of people on the autism spectrum. It is to work to create a society that recognizes the civil rights of Autistic people and others with disabilities. It is to work to create a world in which people with disabilities can benefit from the supports, the services and the educational tools necessary to empower them to be full citizens in society.

We are Autism’s true voice – Autistic people and those with other disabilities ourselves, and our allies, family members, friends and supporters. Autism Speaks does not speak for us. We are not stolen – we are right here. Our lives may be difficult – but they are worth living. Autism Speaks Does Not Speak For Us and we will not work with an organization that relies on damaging and offensive stereotypes to advance an agenda out of step with those they purport to represent. We call upon you to recognize this and find better avenues for your admirable desire to support Autistic people and our families. We call upon you to end your support for Autism Speaks.

Please sign and support autistic opinion.

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DSM Merging the ASD

Kev, of Left Brain/Right Brain, asks this question:

The recent article in the New York Times concerning the possibility of the ‘vanishing’ of Aspergers Syndrome from the next version of the DSM (due in 2012) only asks two people with the AS diagnosis (Temple Grandin and Ari Ne’eman) for their opinions. Nothing wrong with that as such but I’d like to hear what the AS community at large thinks.

and then gives his own opinion:

the AS community isn’t disappearing, its just finally taking its rightful place alongside the others in the autism comunity.

I recently discussed this issue with my mother. She's a high school teacher, and while she understands my concerns and agrees that Asperger is Autism, she has explained that, as a teacher, the label has been a useful tool for her to figure out what can and can't a student do, and what accommodations to make in the classroom. I suggested to her that perhaps then more descriptive IEPs may be in order, so that the knowledge behind the label will not be lost in the (highly likely, yet unconfirmed) merge. With that scenario, she agreed that then there would be very little point in keeping Asperger's as a term in the DSM.

I support merging Asperger's with the rest of the ASD, as it simplifies classification and eliminates confusion and potential discrimination.

One of the concerns that has been brought to my attention about this issue is that if Asperger Syndrome is no longer in the DSM, that all the hard work of raising awareness will be wasted, and that people with the diagnosis of Asperger's will fall through the cracks again.

However, I think because of the awareness that has been made about Asperger Syndrome can be shifted to be about ASD. Also, the wider range of diagnostic criteria means that people previously diagnosed as Asperger Syndrome will be recognized as being ASD, and thus will not fall into the cracks as before. Of course, this is under the impression that appropriate services for all ranges of the spectrum and all ages, from childhood to adult, are available. If those services aren't available and implemented properly, then yes, people will fall through the cracks.

Which needs to be put into place even if Asperger Syndrome isn't removed from the DSM.