March 2010 ASAN Meeting

The March 2010 meeting for the Autistic Self-Advocacy Network, New England Chapter (ASAN-NE) will take place on Saturday, 27 Mar 2010 from 2-4pm. The meeting will take place in the Watertown Savings Bank room of the Watertown Free Public Library. Please email asannewengland AT hotmail DOT com f you plan on attending or if you have any questions.

Make Your Voice Heard by the Federal Government about Employment!

The US Department of Labor's Office of Disability Employment Policy (DOL/ODEP) will be holding a Listening Session -- a hearing in which people with disabilities are invited to provide testimony -- at the Sheraton Boston Hotel (near the Hynes/Auditorium stop on the T's Green Line) on Wednesday March 3.

This is a great opportunity for our community to educate Federal policymakers about the issues we face trying to obtain and *maintain* employment, as adults on the spectrum.

The DOL and ODEP need in particular to hear about the issues that folks on the autism spectrum face, that are different from those faced by folks with physical disabilities (about which they are a lot more aware, at present).

We can provide oral testimony in person at the hearing, and/or written testimony at any time from now through March 3, the hearing date.

There will also be an (optional) workshop meeting at AANE's office in Watertown MA, from 12 noon to 2 pm on February 27 (the Saturday preceding the hearing date.)

The February 27th workshop meeting is for us to help one another organize our own individual testimony and make it as effective as it can be, whether oral or written.

To register to attend the hearing on Wed March 3, and/or to provide written testimony, visit

https://www.disabilitylisteningtour.com/register/index.php?cityclicked=Boston

For more information about the hearing (and the others like it that are being held around the country), visit

http://www.disabilitylisteningtour.com/

For more information about the pre-hearing workshop meeting at AANE on Sat Feb 27, email Phil Schwarz,

pschwarz AT ix DOT netcom DOT com

Travel directions:

The Sheraton Boston (where the hearing will be held, on Wednesday March 3) is located at the corner of Dalton St. and Belvidere St. in Boston's Back Bay, a short walk from the Hynes Convention Center station on the MBTA Green Line. From the MBTA station, walk south on Massachusetts Ave., past Boylston St. and the Berklee College of Music on your left, to Belvidere St. Turn left onto Belvidere St. and walk east past the Hilton hotel on your left, to Dalton St. The Sheraton Boston will be across Dalton St. on your left.

AANE's office is at 85 Main St. in Watertown, MA, a short walk from Watertown Square (a destination served by the MBTA's 71-Mount Auburn, 70-Central Square, and 57-Kenmore bus lines). From Watertown Square, head west on Main St. past the Not Your Average Joe's restaurant on your right to Church St. #85 is the office building occupying the next block after Church St. on your right. The pre-hearing meeting at AANE is on a non-business day, so only the back door of the building will be open. Turn right on Church St. and then left into the parking lot behind the building, where you will see the back door of the building on your left. AANE's office is on your left on the ground floor once you enter the building via the back door.

November ASAN-NE Meeting

The New England Chapter of ASAN will have its November meeting from 2pm to 4pm on Saturday, 21 Nov 2009 at the Watertown Free Public Library in Watertown MA. The meeting will take place in the Watertown Savings Bank Room.

This meeting is free and open to the public. So we can get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

ASAN-NE Protests Autism Speaks' Walk for Autism, East Boston MA, 18 Oct 2009

On Sunday, October 18, ASAN-New England members and other disability rights advocates protested Autism Speaks' Walk for Autism, held at Suffolk Downs in East Boston. Although 15 individuals RSVPed, inclement weather kept all but 7 from attending. The first choice of protest location, as well as the location that the Suffolk Downs staff recommended, were both too far removed from the walk to be effective. Instead, we went inside Suffolk Downs, and we went onto the track to protest once the walk had begun.

We were on the track for an hour before the weather forced us inside. We chanted and held up posters that said:

• I am a person, not a puzzle
• Nothing about us without us
• Keep $$$ local, do not donate to Autism Speaks
• End fear and stereotypes, refuse to support Autism Speaks
  
• Autistic and over 18: Autism Speaks says I don't exist
• Odds of Autism Speaks funds directly benefiting autistic people: 1 in 50
• Congratulations BOSTON! You just raised Geri Dawson's $alary!!

Most of the walkers looked at us curiously, as if they were unaware that there was a controversy surrounding Autism Speaks. They mostly seemed interested but confused. A few smiled and waved. The walkers showed very little animosity and open hostility toward us in the hour in which we protested.

When the weather forced us inside, and when we decided the walkers needed to know more about our cause, we started distributing flyers. Many people took the flyers and were interested in what we had to say. However, we did not have a chance to distribute too many flyers before we got thrown out by Autism Speaks staff. Although we had been civil with them up until that point, the Autism Speaks staff responded by shouting profanities and telling us we weren't really autistic.

October ASAN-NE Meeting

The New England Chapter of ASAN will have its October meeting from 2pm to 4pm on Saturday, 17 Oct 2009 at the Watertown Free Public Library in Watertown MA. The meeting will take place in the Watertown Savings Bank Room.

This meeting is free and open to the public. So we can get an accurate attendance estimate, please respond to asannewengland AT hotmail DOT com if you plan to attend.

The Watertown Library is located at 123 Main St, Watertown MA 02472-4401.

ASAN New England Protests Autism Speaks

In light of Autism Speaks' "I Am Autism" PSA and other controversial campaigns, the New England chapter of the Autistic Self-Advocacy Network (ASAN) is planning protests of Autism Speaks walks in Nashua (Oct 4) and Boston (Oct 18) . Walk locations are as follows:

Nashua:
Greeley Park
100 Concord St., Nashua, NH 03064
Registration opens 10am, walk starts 11am

Boston:
Suffolk Downs
111 Waldemar Ave., East Boston MA 02128
Registration opens 9am, walk starts 10.30am

These protests come on the heels of successful Autism Speaks protests in Columbus OH and Portland OR. If you are interested in attending the walks in Nashua and/or Boston, please contact asannewengland AT hotmail DOT com.

Autism Speaks, but What is it Saying?

An Analysis of Autism Speaks’ “I Am Autism” PSA

I am autism.
I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

“Children” falsely implies that autism primarily occurs in children. “Your children” shows that this message is targeted to parents of autistics, rather than autistics themselves. Autism Speaks cannot speak for autistics if it cannot even speak to us.

I know where you live.

And guess what? I live there too.
I hover around all of you.
I know no color barrier, no religion, no morality, no currency.
I speak your language fluently.
And with every voice I take away, I acquire yet another language.
I work very quickly.
I work faster than pediatric aids, cancer, and diabetes combined

Not only does this make autism seem worse than AIDS, cancer, and diabetes combined, but it also confuses prevalence rate with onset by using the word “faster”. Saying autism works “faster” than AIDS, cancer, and diabetes falsely implies that non-autistic children are rapidly being turned autistic.

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.

How does autism make sure that marriages fail and people go bankrupt? This statement goes beyond warning and even beyond pessimism. This statement artificially injects a sense of certain doom into the situation. It makes no sense to give parents of newly-diagnosed autistic children this false sense of doom at a moment when they are likely to be the most vulnerable.

The line about bankruptcy brings to mind a eugenics campaign from 1926 that states: “Every 15 seconds $100 of your money goes for the care of persons with bad heredity such as the insane, feeble-minded criminals, and other defectives.” An advertisement comparing the intellectually-disabled and mentally-ill to criminals and calling them burdens on society would not go over very well today. Advertisements that characterize autistics as burdens on society should not be accepted either.

I don’t sleep, so I make sure you don’t either.
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.

Why is parental embarrassment emphasized more strongly than anything the autistic child is experiencing? By not considering the way the autistic child feels, Autism Speaks again demonstrates lack of understanding and even lack of empathy toward autistic people. Moreover, the way to eliminate embarrassment at autistic behavior is to spread awareness about what autism looks like and what autistics experience. A group that spends 28% of its substantial operating budget on awareness should enlighten the public about autism, not use embarrassment as a threat.

You have no cure for me.
Your scientists don’t have the resources, and I relish their desperation. Your neighbors are happier to pretend that I don’t exist—of course, until it’s their child.

If these scientists are biomedical researchers, they will not have the resources because they are looking at autism from the wrong vantage point. Curing autism is not on the order of curing polio or smallpox. Autism is a way of being, not a disease that can be separated from the individual with the aid of medical treatment. Curing autism is less like curing a disease and more on the order of curing left-handedness or homosexuality.

Autism is much more than the handicaps secondary to it. There is a huge difference between curing autism and enabling an autistic person to communicate, self-regulate, mitigate sensory distress, and live independently. The former involves eradicating any non-normative individual difference, while the latter allows success in life for people on the autism spectrum.

I am autism. I have no interest in right or wrong. I derive great pleasure out of your loneliness.
I will fight to take away your hope. I will plot to rob you of your children and your dreams. I will make sure that every day you wake up you will cry, wondering who will take care of my child after I die?

These sentences again instill a sense of certain doom on individuals who are likely to at their most vulnerable. Also, the phrase “rob you of your children” implies that autistic people are missing their personhood. This phrase debases and dehumanizes autistic people, and leads to further stereotyping.

And the truth is, I am still winning, and you are scared. And you should be.
I am autism. You ignored me. That was a mistake.
And to autism I say:
I am a father, a mother, a grandparent, a brother, a sister.

...but apparently not an autistic person.

We will spend every waking hour trying to weaken you.
We don’t need sleep because we will not rest until you do.
Family can be much stronger than autism ever anticipated, and we will not be intimidated by you, nor will the love and strength of my community.
I am a parent riding toward you, and you can push me off this horse time and time again, but I will get up, climb back on, and ride on with the message.
Autism, you forget who we are. You forget who you are dealing with. You forget the spirit of mothers, and daughters, and fathers and sons.
We are Qatar. We are the United Kingdom. We are the United States. We are China. We are Argentina. We are Russia. We are the European Union. We are the United Nations.
We are coming together in all climates. We call on all faiths. We search with technology and voodoo and prayer and herbs and genetic studies and a growing awareness you never anticipated.

Technology and voodoo and prayer and herbs and genetic studies, but not genuine attempts to communicate with and understand autistics?

We have had challenges, but we are the best when overcoming them. We speak the only language that matters: love for our children.

If you love your children, love them for who they are. Understand their weaknesses and strengths. Bestow upon them no unrealistic expectations of success and no unrealistic expectations of failure. Work with them, and listen to them.

Our capacity to love is greater than your capacity to overwhelm.
Autism is naïve. You are alone. We are a community of warriors. We have a voice.
You think because some of our children cannot speak, we cannot hear them? That is autism’s weakness.
You think that because my child lives behind a wall, I am afraid to knock it down with my bare hands?

The wall metaphor brings to mind imprisonment imagery used in outdated psychiatry from the early 1900s. Simply put, autism is not a wall that a child lives behind. If you see autism as a wall that is separate from the child, you will not be able to knock down the wall without knocking down the child as well.

You have not properly been introduced to this community of parents and grandparents, of siblings and friends and schoolteachers and therapists and pediatricians and scientists.
Autism, if you are not scared, you should be.
When you came for my child, you forgot: you came for me.
Autism, are you listening?

From its title onward, “I Am Autism” uses anthropomorphism throughout. Although anthropomorphism can be an effective technique, the anthropomorphism used in “I Am Autism” falls flat by assigning a one-dimensional, villainous character to a very complicated and nuanced way of being. In fact, the entire cast of characters used in this piece is overly simplistic: autism is the villain, the child is a victim, and the parents are the saviors. Even beyond its simplicity, this model is totally incorrect. It separates the autism from the individual, and also undermines the strength of the individual by portraying him/her as a helpless victim.

“I Am Autism” demonstrates a serious lack of understanding of autism, as well as a serious unwillingness to address autism in earnest. The piece discusses how the autistics’ loved ones might feel, but does not address autistics’ experiences at all. This unwillingness to speak to us, and even speak about us, demonstrates that Autism Speaks is not suited to speak for us.