I Speak of Dreams

Congratulations to Autism Science Foundation, #1 NonProfit Startup

I am a supporter of The Autism Science Foundation.  The organization has accomplished a lot in a very short time.  Congratulations for this recognition.

“A shining star to those interested in real science and evidence based interventions”

Here's the text of the press release:

 (August 30, 2011—New York, NY)--The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, has been named the number one start-up nonprofit in the “Disabilities” category by Philanthropedia/Guidestar.

GuideStar is a nonprofit organization working to help donors make smarter donations by connecting them with some of the highest impact nonprofits in a cause. The rankings are based on the recommendations of over six dozen experts in the field.

“We are thrilled to be recognized as one of the nation’s most promising nonprofits” said Alison Singer, president of the Autism Science Foundation. “We are committed to funding critically needed autism research and to using our resources where they will have the greatest impact.”

The Autism Science Foundation began funding research grants in its first year of operations and has increased its funding levels each year. Since 2009, it has funded nearly half a million dollars in research grants.

Guidestar reports the following about the Autism Science Foundation on its website:

• ASF has made a great contribution to empirically valid information on autism spectrum disorders.
• This group funds outstanding autism research that is totally science based. They are a shining star to those interested in real science and evidence based interventions.
• We find this group to operate with the highest level of integrity. They also have extremely low overhead. Every dollar possible is put toward autism research.

All the information collected and research used by Guidestar to compile the rankings are available at http://www.myphilanthropedia.org/startups/national/people-with-disabilities/autism-science-foundation.

This month, the Autism Science Foundation issued a Request for Applications for 2012 Pre- and Postdoctoral Fellowships. www.autismsciencefoundation.org/applyforagrant.html.  In September, ASF will co-sponsor the KiDA Autism Summit in Irvine, California where Former First Lady Rosalynn Carter will give the keynote address. In October, ASF will sponsor the Rockland County Autism Symposium in Pearl River, New York.  Dr. Temple Grandin is the featured speaker at this annual event.

The Autism Science Foundation is a 501(c)(3) public charity. Its mission is to support autism research by providing funding to scientists and organizations conducting, facilitating, publicizing and disseminating autism research. The organization also provides information about autism to the general public and serves to increase awareness of autism spectrum disorders and the needs of individuals and families affected by autism.

To learn more about the Autism Science Foundation’s programs visit www.autismsciencefoundation.org

Visting the Santa Cruz Area? Run Down to Caroline's in Aptos

We have a long-time family friend, Christie, who has started not just a new business but a new philanthropy. 

Christie has opened Caroline's in the little village of Aptos (about 10 minutes south of Santa Cruz).  Caroline's is a resale shop, but like everything Christie does, it has style and panache.  

What's on sale includes clothing (including designer labels), vintage dishes and collectibles,  framed artworks, and children's items including toys.

The profits from the store go to Christie's real love:  nonprofits serving children  throughout Santa Cruz County.

Caroline's
402 Trout Gulch Rd
Aptos, CA 95003
(831) 662-0327

From Highway 1, take State Park Drive and turn away from the ocean.  Turn south on Soquel Drive.  Continue to the village of Aptos, turn left onto Trout Gulch Road, and an immediate right into Caroline's parking lot.

Some other unique-to-Aptos places: The Britannia Arms, the Bayview Hotel, and Ristorante Barolo in the Bayview Hotel.

National Society of Collegiate Scholars on "Spread the Word to End the Word"

The National Society of Collegiate Scholars, an honor society, has more than 800,000 members. They have joined with the Special Olympics "Spread the Word to End The Word" campaign:

If you don't know what the "Spread the Word to End the Word" campaign is, here's the kick-off: Soeren Palumbo's speech to his high school, Fremb, in 2007:

 

Soeren Palumbo's sister Olivia inspired his speech.

Hat tip to @Jemelene, who blogs at A Hopeful Outlook, for alerting me to the NSCS PSA video.

Keeping Up with #EpiGate

If you are going to post or tweet about this issue, rather than using Mr. Epi's  name or twitter handle, another epidemiologist, @epiApril, has suggested using #epigate.

The shortest version: Mr. X (a private citizen) and Mr. Epi (an employee of a department of health) got into an online brangle.  Mr. X barraged Mr. Epi's colleagues and superiors with threatening emails.  Some days later, Mr. Epi's employers asked that he refrain from using social media to talk about public health issues.  Mr. Epi has taken down his blog. Both Mr. X and Mr. Epi were, at the start of the brangle, linking their online handles to their real names. 

The internets erupted.  I think it did so for the following reasons:

1. Mr. Epi's popularity
2. The ongoing hotly debated subject of anonymity, pseudonymity or "real names" for health care professionals
3. The ongoing hotly debated subjects of the validity and utility of using a pseudonym (this is known as the #nymwars or #realnames)
4. Science Blogs announcement that bloggers using pseudonyms will not have their contracts renewed

 Posts on #EpiGate or Touching on #EpiGate Issues

1. August 19, 2011 Liz Ditz at I Speak of Dreams A Public Servant, Blogging and Tweeting Under His Own Name, Has Been Silenced by His Employers
2. August 20, 2011 Anarchic Teapot at Anarchic Teapot Malevolent Stupidity Never Sleeps
3. August 21, 2011 Pranab at Scepticemia After ImpactEDNurse, @EpiRen's Turn to Go: Pitfalls of #HCSM
4. August 21, 2011 Skeptical Lawyer at Skeptical Lawyer Lessons from EpiRen: Do Public Employees Have Free Speech Rights
5. August 22, 2011 Orac Knows at Respectful Insolence The Consequences of Blogging Under One's Own Name
6. August 22, 2011 PZ Myers at Pharyngula (Freethought edition) Rhett Daniels, Litigious Bully
7. August 22, 2011  Larry Moran at Sandwalk Despicable Rhett S. Daniels
8. August 22, 2011 PalMD at White Coat Underground Of Douches, Online Identity, and Ethics
9. August 22, 2011 Judy Stone MD at Politics, Science, and Other Assorted Musings: Censorship Causes blindness: A Valuable Public Servant Has Been Silenced
10. August 22, 2011 Dr. Nescio at Primum Non Nocere Attack of the Anti-Science Movement
11. August 22, 2011 Pranab at Scepticemia Rhett Daniels, EpiRen and the Streisand Effect
12. August 22, 2011 Chris Clarke at Coyote Crossing: Rhett Daniels, Thuggish Internet Crackpot
13. August 23, 2011 Tara C. Smith at Aetiology On the Value of Psuedonyms
14. August 23, 2011 Bruce Gorton at Expensive Beliefs (TimesLive, NZ) Rhett S. Daniels: The Misuse of Courts
15. August 23, 2011 Sullivan at LeftBrain/RightBrain EpiGate: When Blogging Under One's Own Name Can Be Used Against You
16. August 24, 2011 ToddW at Harpocrates Speaks A Brief Note on Legal Thuggery and the Silencing of Others

For those of you having questions about how employers may limit employees' speech on social media, please consult The NLRB's New Social Media Guide (sent to me via twitter from Richard Posey).  This doesn't apply to Mr. Epi, as he is a state employee.

A Public Servant, Blogging and Tweeting Under His Own Name, Has Been Silenced By His Employers

Update August 20, 2011, 4:39 pm PDT : be sure to read the message from EpiRen, René Najera in the comments

EpiRen is the twitter handle of René Najera.  His twitter account was linked to his blog, which had his real name and his place of employ.   He has been a great credit to the epidemiology and public health professions through his public blogging, blog commenting,  and twitter use. Latterly, he's been public -- writing and tweeting under his own name.

I particularly appreciated his series, Epidemiology Night School, as it was a field of study relatively new to me.  Mr. Najera has also been a stalwart defender of the safety and efficacy of vaccines.

Mr. Najera is employed by a state Department of Public Health on the East Coast.

Last weekend, Mr. Najera had a heated exchange with a pharmaceuticals "entrepreneur", Mr. X-- I put that in quotes as Mr. X. made some claims that don't stand up.  Mr. X also made a series of ad hominem attacks on Jen Gunter MD, to which Mr. Najera responded.

Rather than responding to Mr. Najera, Mr. X escalated in a particularly virulent way. Mr. X sent a series of emails--complaining about Mr. Najera's opinions, complaining about Mr. Najera's defense of vaccination,  and threatening legal action--to a great many people senior to Mr. Najera in his department -- starting with Mr. Najera's immediate superior.  Mr. X was able to do so because Mr. Najera was blogging under his own name, named the state in which he worked, and because the name René Najera is rather uncommon -- especially in a small, East Coast state.

The result?

Social media in health care are here to stay, and as Mr. Najera's work has shown, can advance the lay person's understanding of  public health and epidemiology.  But being a strong public advocate can invite push-back from people who disagree -- say, over the value, safety, and efficacy of vaccines. Not all of those who disagree are civil or even rational.  Some of those who disagree elect to cause trouble in the advocate's place of employment...which is easily discoverable if the advocate uses social media under the name on the advocate's paycheck.

I hope this will give some people who oppose pseudonymous social-media use some pause.  I hope it gives health care social media mavens some particular pause.

Crab Bucket Syndrome

 "Crabs in a bucket" is a metaphor for human behavior, based on the alleged behavior of crabs (I have no idea if crabs really do behave in that way). 

The story goes that caught crabs, placed in a bucket, behave in such a manner that if one crab gets close to escaping (changing his condition) the other crabs somehow manage to keep the escapee in the bucket (maintaining the status quo).

It's been used in various contexts.  The way I want to use it here is about folk who should be in more-or-less unity, arguing over who should speak for or represent that unity.

This time, it has to do with the next big step in civil rights, or as Robert Rummel-Hudson said,

I believe the fight for disability rights, particularly in the hearts and souls of our typical fellow citizens, will constitute the next great civil rights movement in this country. And I believe that, with all my heart.

The very same day, Ari Ne'eman said, at a different event on the other side of the country, talking about autism and autistic advocacy:

"...it's essential that we recognize that neurodiversity is an outgrowth of disability rights, and that disability rights is an outgrowth of the civil rights movement."

What happened since: a war of words and a storm of mutual disrespect and distrust among folk who should be, at the very least, allies.  Over what?  In my humble opinion -- a lack of perspective on all sides.

Reminding each other, with mutual understanding and respect,  that our community has many parts and perspectives -- self-advocates, parents, adults who cannot self-advocate, adults on the way to self-advocacy, children who cannot self-advocate, children on the way to self-advocacy -- is one thing.  Bitter, divisive conversation among us over "who can speak for the community" is just engaging in being crabs  in a bucket.

When are we going to get together to demolish the bucket?

Backstory (and this isn't all of it by any means, just the current episode)

• August 9 2011 Robert Rummel-Hudson at Fighting Monsters with Rubber Swords: Just a Word: The Change-Up Edition
• August 16 2011  Zoe at Illusion of Competence:  The R-Word and Perspective-Taking: Whose Perspective Are We Taking?
• August 18 2011 Shannon Rosa at Squidalicious: Parents and Self-Advocates: Be Al(lies) That You Can Be

 

 

Thinking of Going to SXSW? Want An Innovative Special Needs Panel? Vote!

Vote now until September 2.  Voting directions at the bottom of the post. Also, leave comments at the proposal page.

What's South by Southwest (SXSW)?

"Every March, thousands of young, jeans-wearing techies, filmmakers and musicians descend upon Austin, Texas, harboring dreams of getting noticed and hitting it big. They come not just for the balmy weather or the Tex-Mex food but for South by Southwest, a collection of conferences and festivals that's considered one of the most influential happenings on the annual cultural calendar." -- CNN, March 10, 2011

Inspired by the energy and success of the BlogHer 11 Special Needs Mini-Con, Jenn Lee Reeves has organized a panel proposal for SXSW 12:

Tech Unity: Beyond the Special Needs Hashtag

Special needs communities unite! This brainstorming session will take a look at how some people have been able to harness the power of online community to bring special needs parents together. We will look at what social tools work and don't work when parents look for ways to get support for their special needs kids. Talk to a special needs parent and you'll realize, this community does not come together often enough to share how we make advocating for our children work. This is not a session looking to find funding for our child's challenges. This is a conversation where anyone with a link to any type of special need can talk about the need for community and advocacy in a culture where abilities of all types should be celebrated.

Questions Answered

1. How are you using social spaces to reach out to your special needs community?
2. Why is the special needs community fractured? Can we work together more?
3. How can you connect online support communities to families who are not in social media?
4. What are your personal stories of how you've connected with other special needs families?
5. What are the best tools to use to reach out and find people who can help you advocate?

How to vote for this proposal if you aren't yet a registered SXSW user:

1. Go to http://panelpicker.sxsw.com/users/register?return=%2Fpages%2Ffaq and register for Panel Picker
2. Wait for email; activate account
3. Go to http://panelpicker.sxsw.com/ideas/view/11932 
4. Click on the thumbs up button just below the title.

BlogHer is About Learning New Skills: Video Blogging U

Moderator

Carley Knobloch, (@carleyknobloch) founder of Digitwirl

Speakers:

• Corinne Leigh (@corinneleigh,  Corrinne's Little Corner; CraftoVision Videos; Threadbanger blog and Threadbanger videos
• Jenny Ingram (@jennyonthespot, Jenny on the Spot

I was really dissatisfied with this session --  the content was ok but had gaping holes;   the presentation was sorely lacking.  I thought the moderator and panelists, by their lack of preparation, were disrespectful of the audience.  The quality of their work as moderators and presenters doesn't really encourage me to go follow their sites. That said, I learned a lot -- mostly through the effort of creating this blog post.

BlogHer is About Learning New Skills: How NOT to pitch PR professionals

The liveblogging transcript is here, and is particularly good:

http://www.blogher.com/liveblog-minding-your-own-business-bad-blogger-pitches-other-side-pr-blogger-relationship?wrap=node/305898/virtual-conference/posts

 And the best round-up I've seen so far is from Angela Gassett at Social Studies Blog: BlogHer11 Bad Blogger Pitches: The Other Side of the PR-Blogger Relationship

This session was not directly related to my interests, but was the best match in the time slots.   The best take-aways for me as an advocacy blogger (which defines my two blogs and the group blog more than anything else):

Key Takeaways for me:

1. Know your target. Don't assume you know what the organization stands for, or a publication's stand on the issue you are advocating for.  Do your homework.
2. For each of the issues you advocate for, have an elevator pitch.  Why should the target care?
3. Pay attention to how you appear on your blogs.  To quote Gassett: "if somebody sees this content and shares within their organization, would it prohibit them from working with me?"
4. Know why an organization should engage with you.  Have data on how you move the conversation forward (metrics).
5. Again to quote Gassett "Heart and depth of content are most important. Really wonderful writing makes an impact."

BlogHer Is About Changing The World: Special Needs Mini Conference

The BlogHer 11 Special Needs Mini Conference ran on Friday August 5 2011 to 2:30 (ish).  It was organized by Julia Roberts of Kidneys and Eyes, who also founded and runs Support for Special Needs. (Twitter: JuliaRoberts1 and SupportforSN)

The speakers were Aurelia Cotta, Robert Rummel-Hudson, and Shannon des Roches Rosa. 

There's a list of issue affecting the attendee's speakers (including themselves)

What follows is a summary of each talk, with some but not all of the comments from the audience