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Last Day of Legislative Session – Just Two More Short Calls Needed NOW

11 Sep

Below is an action alert from United Cerebral Palsey and The Arc of California.

PLEASE–Make two phone calls today. Call your state senator and assembly member.
For those who aren’t sure who their state senator or assemblymember is or what their Capitol numbers are, click here.

Details below.

Dear Friends,

The statewide campaign of calling the 26 key legislators was fantastically successful yesterday. We definitely have their attention!

But for today and tonight — the last day of session — we need to switch tactics. Instead of calling the 26, everyone needs to call their own state senator and assemblymember. Every member of the Legislature needs to get calls from his or her own voters NOW!

The message should be short and sweet, such as:

– Give them your name and address so they know you live in the district they represent.
– Thank them for all their support in the past, but tell them we need them more than ever TODAY. Our developmental services system is collapsing and we are desperate!

Call their Capitol offices, not their local district offices. And don’t please don’t call a legislator’s personal cell phone unless you know them very, very well.

For those who aren’t sure who their state senator or assemblymember is or what their Capitol numbers are, click here.

And here’s an encouraging editorial from today’s Sacramento Bee.

Thank you for your advocacy – again today!

Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814

More California Advicacy Needed: take 20 seconds to protect services

22 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

Yes, this is a repeat of an article posted over the weekend. But weekends get low traffic and we need to keep this effort moving forward. And I am adding the message I sent my legislators below.

As a citizen (born here!) of California, I made a promise to disabled Californians that I would help support them. I do this with my taxes and have for years.

Now that I have a disabled child, I see that the level of support we offer has been low and recently has been diminishing.

We Californians made a promise, we need to keep it.

I am extremely disappointed with the Legislature for caving in to Governor Brown and passing a budget with not one dime to stop the deterioration of our developmental services.

Please do much, much better in the special legislative session. Give the developmental disability community the emergency 10% across-the-board funding increase we need starting NOW. Anything less won’t stop the service system from collapsing, just slow it down.

And please, don’t pass any more unfunded mandates on our community service providers. When you vote on Senate Bill 3 to raise the minimum wage and any other bills to make our providers spend more, insist that the state cover the full costs to prevent the loss of ever more of our services.

The people who take the front lines in supporting our disabled have one of the most demanding jobs in our State. I started out on the minimum wage and know the limitations of it. I’m support an increase.

Be compassionate with the minimum wage, but understand that we have to realize that this will impact our most vulnerable citizens.

Respectfully Submitted,

Matthew J. Carey

More California Advicacy Needed: take 20 seconds to protect services

21 Jun

Take 20 seconds and use the link to send a message to your legislators that we are angry tha the proposed state budget removed the increase for disability services.

Or, take more than 20 seconds and go into more detail about how this “compromise” budget fails to keep the promise we as a state have made to our own.

The letter below is from The Arc & United Cerebral Palsy California Collabortation.

Next step to save our services: more 20-second emails needed 

Take Action!
Dear Developmental Disability Community Friends,

If you want to skip the explanations and take more action now to save our community services, just click on the blue “Take Action!” button at the top right of this Action Alert. Then fill in the blanks to send emails to your local state senator and assemblymember.

It will take you about 20 seconds — unless you want to elaborate beyond the short canned email I’ve given you. If you’re distressed or angry about the new state budget that includes zero to top our service system from continuing to disintegrate, as so many people in our communirty are, feel free to say so.

Last time I sent you one of these point-and-click Action Alerts, we generated more than 10,000 emails, going to every one of the 120 legislators. I know firsthand that it got attention. This time, let’s get 20,000.

And now for those who want the explanation – it’s grim, but there’s hope — click here.

Thank you for your advocacy.
Greg

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collabortation

ASAN Series: JRC Survivor Speaks Out

4 Dec

When this article first appeared here at Left Brain/Right Brain only the first three parts of the 4-part series were online at the ASAN website.  Part 4 is now up and I include it here.

JRC Survivor Speaks Out (Part 4)

The Judge Rotenberg Center (JRC) is most infamous for it’s use of electric shocks as a behavior modification method.  But electric shocks are not the only aversive technique they use.  In a four part series, the Autistic Self Advocacy Network presents a rare insider’s view of life at the JRC.   So far three parts have been published.  But rather than wait for part 4, I’ve decided to post links to the articles now.

The series starts with this introduction:

The Judge Rotenberg Center (JRC) is a residential facility in Massachusetts where disabled residents are subject to electric shock, sensory assault, food deprivation, prolonged restraint and seclusion, and a host of other horrifying and aversive “treatments.” The United Nations has condemned the JRC’s treatment of its residents as torture, and disability rights advocates have been trying to get the facility shut down for over 30 years. The Autistic Self Advocacy Network has previously published an in-depth piece about the history and practices of the JRC, which you can read here.

This post is the first of a four-part series written by Jennifer, a survivor of the JRC. We are extremely grateful to have her permission to publish this brave account of her own experiences with the so-called “treatments” the JRC provides.

Here are links to the series so far:

JRC Survivor Speaks Out (Part 1)

JRC Survivor Speaks Out (Part 2)

JRC Survivor Speaks Out (Part 3)

JRC Survivor Speaks Out (Part 4)

By Matt Carey

Jerry Seinfeld, still not autistic after all these years

4 Dec

Jerry Seinfeld made a bit of a stir in the autism community recently by stating in an interview that, well, let’s use his own words:

I think, on a very drawn out scale, I think I’m on the spectrum.

This statement caused some excitement in some quarters and some vocal pushback in other quarters.  Well, that and this statement:

But, I don’t see it as dysfunctional. I see think of it as an alternate mindset.

My guess is that this second statement caused much if not most of the pushback that Mr. Seinfeld received.  Why?  Because it says that, say, Jerry Seinfeld can have autistic traits and those traits are not dysfunctional for him.  Much more, people expressed a fear that Jerry Seinfeld (or someone else with little or no disability) would become the face of autism and that the significant challenges faced by many on the spectrum would be ignored.

Looking back at the first statement above, note that we never get to hear what “it” is.  Is “it” autism in general?  Or, is “it” that part of Mr. Seinfeld’s experience that he identifies as being somewhat like autism?  It seemed very clear to me that Mr. Seinfeld was talking about his own experience, but I can see how others might not see it that way.  In which case we as a community should have said, “Hey Mr. Seinfeld, could you clarify that statement?”  Sadly there won’t be a clarification.  Likely because of the pushback, largely from a few vocal parents of autistic children who face extraordinary challenges due to autism (and intellectual disability and other disabilities), Mr. Seinfeld has made it clear that he’s not autistic and stopped the conversation there.  I never thought he was saying he was autistic, hence that whole “very drawn out scale” caveat he put in his initial statement.

In a newer interview, on Access Hollywood,  here (my apologies but the embed code doesn’t seem to be working or I’d have that video embedded here) we hear Mr. Seinfeld put the brakes on the entire Seinfeld/autism discussion.  The “money” quotes from that interview?  From Time Magazine’s article:

“I don’t have autism, I’m not on the spectrum,” theComedians in Cars Getting Coffee star said Wednesday. “I was just watching a play about it, and … I related to it on some level”

To this observer, the interview comes across as though Mr. Seinfeld asked, “Hey, I got myself into some difficulty.  Could you interview me and help me get out of it?”.  Whatever the background, Mr. Seinfeld put a stop to the discussion.

In the end, we as a community lost a potential ally by using his celebrity to air our own dirty laundry.   We are certainly a divided community on a few issues.  The one in particular here is the way in which some people don’t want to accept the fact that autism is a spectrum.  Autistics have varying degrees of challenges, both due to autism and to other conditions (e.g. epilepsy, intellectual disability, anxiety, etc.) that are common within the autistic population.  One reason I don’t particularly like the term “spectrum” is that implies a one-dimensional distribution, a line with those requiring constant support on one side and those who can manage independently on another.  Well that’s not really accurate.  By that model, the students in my kid’s classroom are all in one narrow band of the spectrum.  But they aren’t.  They are each unique in their strengths and weaknesses.  Autism for one is not the same as autism for another.

But let’s get back to that division.  Some people spoke out about a “war” between “autistic self advocates and parents of severely autistic children” and that the autism spectrum should be split.  Others said that were Mr. Seinfeld to become one of the public faces of autism, he (like Temple Grandin, somehow) would be used by officials to downplay the significant needs of those with great challenges and, again, the spectrum should be split.

We are so divided that we need some sort of civil war to divide the spectrum.  Really?  Here’s the thing, we don’t.  There is a large, growing and vibrant community I in invite those who want division to join it.  The founder of this blog, Kev Leitch, understood that.  He understood it when he made Left Brain/Right Brain a group blog with parents, professionals and autistics as contributors.  He understood it when he built a discussion forum which was inclusive.  The people at The Thinking Person’s Guide to Autism understood that when they built a community with voices from all over the community.  Their Facebook page has over 108,000 likes at this point.

There is a place for advocates who have a very narrow focus.  Say, only autistics with intellectual disability or only self-advocates.  But when you take that to the level of claiming that we should split the community over some “war”, you are doing harm.  The strongest advocates are those who see beyond their own self interests, who advocate for those in the community whose needs differ from one’s own self-interest (even if that “self” interest is in supporting a loved one).

Or, to put it simply, I expect that self-advocates will support advocacy that directly benefits kids and adults who require 24 hour support, like my kid. Just as I think self advocates deserve advocacy support from parents like myself.

In this whole hullabaloo about Seinfeld and autism I’ve seen some reasonable voices.  I’ve saved them for now.

First, from Jerry Seinfeld and Autism, an article by John Elder Robison (autistic adult) at Psychology Today:

Someone like Mr. Seinfeld – by virtue of his public persona – could easily be seen as a “face of autism,” when in fact we are a very diverse community and many of us want or need far more services and supports than Mr. Seinfeld has so far requested publically. The uninformed public could look at him and say, “autistic people are millionaire comedians,” which is far from accurate. Sure, there are some autistic comedians and some rich ones but most of us are somewhere in the middle. We are all individuals.

Then, from Amy Daniels at Autism Speaks in Celebrate Seinfeld, But Don’t Forget Those Whose Needs Are Great:

So while we celebrate the unique abilities that autism can bring, we must not forget that no one “face” represents autism. We need to remember that around a third of those with autism have co-occurring intellectual disability. A similar number are nonverbal and have tremendous difficulty communicating their thoughts and needs. Thanks to research, we also know that most children and adults with autism have related physical and mental health conditions. These conditions include epilepsy, extreme and chronic anxiety, painful gastrointestinal disorders and disturbed sleep.

We don’t need to fear that the one face of autism will not represent our interests.  We need to make sure that there is no “one face” of autism.  It would have been great if Jerry Seinfeld had been one of those faces.  A face of success (isn’t that what we parents want for our kids?) to serve as a hero for some.  That would not have taken away anything from my kid, as long as we had other faces of autism to represent the whole spectrum.

By Matt Carey

ASAN Series: JRC Survivor Speaks Out

23 Nov

The Judge Rotenberg Center (JRC) is most infamous for it’s use of electric shocks as a behavior modification method.  But electric shocks are not the only aversive technique they use.  In a four part series, the Autistic Self Advocacy Network presents a rare insider’s view of life at the JRC.   So far three parts have been published.  But rather than wait for part 4, I’ve decided to post links to the articles now.

The series starts with this introduction:

The Judge Rotenberg Center (JRC) is a residential facility in Massachusetts where disabled residents are subject to electric shock, sensory assault, food deprivation, prolonged restraint and seclusion, and a host of other horrifying and aversive “treatments.” The United Nations has condemned the JRC’s treatment of its residents as torture, and disability rights advocates have been trying to get the facility shut down for over 30 years. The Autistic Self Advocacy Network has previously published an in-depth piece about the history and practices of the JRC, which you can read here.

This post is the first of a four-part series written by Jennifer, a survivor of the JRC. We are extremely grateful to have her permission to publish this brave account of her own experiences with the so-called “treatments” the JRC provides.

Here are links to the series so far:

JRC Survivor Speaks Out (Part 1)

JRC Survivor Speaks Out (Part 2)

JRC Survivor Speaks Out (Part 3)

By Matt Carey

ASAN Statement On Dr. Phil Episode Featuring K. Stapleton

20 Sep

Below is a statement by the Autistic Self Advocacy Network.

The Autistic Self Advocacy Network issued a statement on Friday, September 19th, condemning Dr. Phil for recent segments featuring Kelli Stapleton.

Stapleton is currently standing trial and has pled guilty to the charge of first-degree child abuse for the attempted murder of her autistic daughter, Issy Stapleton, age 14. The Dr. Phil segments are consistent with the broader media coverage in the year since the attempted murder; rather than rallying with sympathy and support for a child victim of attempted filicide, there have been near-constant attempts to excuse and justify her murderer and paint the person who tried to kill her–her own mother–as the “real” victim. But this abhorrent and retraumatizing brand of violence found a new voice and a new vigor on Dr. Phil.

In the segments, K. Stapleton has been granted new means to exploit her victim. Whether this comes in the form of violating her daughter’s privacy by sharing some of her most vulnerable moments with the world; crafting a sensationalized and dehumanizing narrative of her daughter’s life; using this narrative to solicit dubious donations; or committing character assassination by emphasizing her daughter’s “violence” and painting her as monstrous, Dr. Phil offered an abusive and murderous parent a platform, with no regard for the consequences to her victim–or the potential copycat effects.

“We see a pattern of copycat crimes whenever there is a well-publicized case of a parent murdering, or attempting to murder, their disabled child” said Julia Bascom, ASAN’s Director of Programs. “Every time this happens, commenters come out of the woodwork offering every possible excuse, and nothing could be more dangerous. As disabled people, our lives aren’t valued, and we see the consequences in every one of these headlines. Stapleton attempted to kill her daughter one year ago in the wake of an extremely well-publicized and extraordinarily hateful hatchet job about the murder of another autistic teenager, Alex Spourdalakis. Dr. Phil had an opportunity to shut down this cycle of violence, and instead he chose to perpetuate it, as loudly and widely as possible.”

The victim of child abuse is not the adult abuser. The victim of murder is not the murderer. K. Stapleton is not the victim of her attempted filicide, but she has been allowed to re-victimize her target. The Autistic Self Advocacy Network forcefully denounces Dr. Phil for facilitating this violence, and urges the disability community to join us in breaking the cycle of violence and copycat murders we see year in and year out. Join us in sending this message: it is always wrong for a parent to murder their child. There is never a justification. There are always other options. The only victims here are disabled people murdered by those we should have been able to trust the most.

And to Issy Stapleton, the only victim of this tragedy, the only person whose voice deserves to be heard here, we say: what your mother did was not okay, and it wasn’t your fault. There is a whole world of people who support you. We are sorry this happened to you, and we are doing everything in our power to make sure it can never happen to anyone, ever again. You deserve nothing less.