I Speak of Dreams

What Martin Luther King Really Did

Read this diary post from HamdenRice

...what most people who reference Dr. King seem not to know is how Dr. King actually changed the subjective experience of life in the United States for African Americans.  And yeah, I said for African Americans, not for Americans, because his main impact was his effect on the lives of African Americans, not on Americans in general.  His main impact was not to make white people nicer or fairer.  That's why some of us who are African Americans get a bit possessive about his legacy.  Dr. Martin Luther King's legacy, despite what our civil religion tells us, is not color blind.

Go read the whole thing. It changed me.

Flooded El Salvador Needs Your Help

My daughter Allison is in El Salvador with Santa Clara University's study-abroad program, Casa de la Solidaridad.

In October, a persistent tropical depression caused wide-spread flooding and destruction -- it's now being called "The Deluge of 2011".  Damage was especially severe in the Lempa River Delta where it flows into the Pacific Ocean, but the need for disaster relief is intense throughout El Salvador.

One of the people Al is involved with is Juan Velasco of the El Salvador education NGO, Programa Velasco, which is recognized by the IRS as a 510(c)3 charity. I have investigated Programa Velasco and it is well-run and worthy of support, so you can sent relief funds to El Salvador for Programa Velasco's use by going to PayPal and donating what you can.

The Programa Velasco has a page indicating needs with some photos

• Urgent Necessities: Vitamins, Ibuprofen, antibiotics (amoxicillin) and other products to cure and prevent skin infections
• Important Necessities: powdered milk (mostly for children), bottled drinking water, canned food (especially with protein), underwear, boots, shoes.
• Other Necessities: bleach, soap, mosquito netting (preventing mosquito borne illnesses- dengue, malaria, etc).

As always in natural disasters, it's better to send money rather than material goods that have to be shipped, organized at the destination, and transported to areas of need.  Just go to PayPal and donate what you can.

Other reputable NGOs providing services in El Salvador include Voices on the Border,  SHARE El Salvador, Eco-VIVA, the Evangelical Lutheran Church Disaster Relief, and US-El Salvador Sister Cities.

There are other English-language blogs on the Deluge of 2011 and the need for international disaster relief.  An American named Tim has made several mission trips to El Salvador and maintains a blog, Tim in El Salvador.  One of his posts commented on the urgent water issues:

The availability of healthy water continues to be a serious challenge for El Salvador, and the Deluge of 2011 has only made it worse.   According to a story in La Prensa Grafica, the Ministry of Health reports that  10,186 wells were destroyed or contaminated by the flooding.   In addition, some 28,862 latrines were damaged in the flooding.   These damages to the water and sanitation infrastructure of the country create additional risks for disease.

You can see the degree of flooding at this Facebook album

Voices from El Salvador on the destruction: http://voiceselsalvador.wordpress.com/2011/10/17/worse-than-hurricane-mitch-complete-destruction/

Difficult but essential conversations Adults with disability talking with parents of disabled children:

Update: I've changed the title of this post, deciding to have one big enormous post for both last weeks (days 1-5) and this weeks (day 6-10), plus responses.

At The Thinking Person's Guide to Autism, Conversations between Adults with Autism and Parents of Children with Disabilities, Including Autism.

Why the dialogues?

....being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect -- especially when it affects our ability to work towards common goals.

Building constructive conversations and creating real social change isn't a garden party -- it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism. It might require walking away from the screen and giving yourself time to process, and that's fine. You don't have to participate in these dialogues to learn from them.

• Link to the whole series
• Monday, September 19, 2011: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Tuesday, September 20, 2011: Robert Rummel-Hudson to Zoe
• Wednesday, September 21, 2011: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Thursday, September 22, 2011: Zoe of Illusion of Competence
• Friday, September 23, 2011: Robert Rummel-Hudson
• Saturday, September 24, 2011: The Self-Advocate/Parent Dialogues: Intermission
• Monday, September 26, 2011:  Melody Latimer
• Tuesday, September 27, 2011: Kassiane
• Wednesday, September 28, 2011 Amanda Forest Vivian
• Thursday, September 29, 2011 Kristina Chew
• Friday, September 30, 2011 Paula C. Durbin-Westby

Responses on or after Monday, September 19, 2011(I Will Be Updating This Silently)

1. Monday, September 19, 2011 Landon Bryce, "I Just Think I'm a Problem": We Are All "Like That" at ThAutCast
2. Tuesday, September 20, 2011 John Wills Lloyd Gaining Perspective at EDB Blog
3. Tuesday, September 20, 2011 Sam,  Autistic Self Advocates and Parent Advocates at Uncle Sam's Blog
4. Tuesday, September 20, 2011 Landon Bryce Letter to a Broken Shepherd at ThAutCast
5. Wednesday, September 21, 2011 Andi, The Advocacy Wars: Different not Less at Bringing the Sunshine
6. Friday September 23, 2011  Landon Bryce, Parents: How, and How Not To, Listen to Adults with Autism at ThAutCast
7. Friday, September 23, 2011 Neurdivergent K, "Dialogue", Disillusionment, Disheartening at Radical Neurodivergence Speaking
8. Friday, September 23, 2011   Kim Wombles, Insert Deep, Meaningful Words Here at Countering
9. Saturday, September 24, 2011 Emily Willingham, The Importance of Open Discussion at  A Life Less Ordinary
10. Saturday, September 24, 2011 Robert Rummel-Hudson Dialogue at Fighting Monsters with Rubber Swords
11. Saturday, September 24, 2011 Neurodivergent K On the Dialogues and the Accompanying Twittergate at Radical Neurodivergence Speaking
12. Saturday, September 24, 2011 C.S. Wyatt  A Peek Inside Our Dysfunctional Community: The Thinking Person's Guide to Autism at AutisticMe
13. Sunday, September 25, 2011 Dixie Redmond Day 16: Thinking About Autism at Northdixie Designs
14. Sunday, September 25, 2011 Landon Bryce The Importance of Being Emily at ThAutCast
15. Sunday, September 25, 2011 Sarah Some Thoughts on the Self-Advocate/Parent Dialogues at The Thinking Person's Guide to Autism at Kitaiska Sandwich
16. Sunday, September 25, 2011 Chris Erenata, On Parents Listening to Self-Advocates at Oh is THAT Right 
17. Sunday, September 25, 2011  Pia Prenevost, Sides  at the Crack and the Light and at The Autism Blogs Directory
18. Sunday, September 25, 2011 Emily Willingham, Listening to No Kid Gloves, No Muzzle at A Life Less Ordinary
19. Monday, September 26, 2011, Autistic, Everybody Has Two Cents  at AutisticSpeaks
20. Monday, September 26, 2011, Kim Wombles What We Fight For at Countering and Autism Blog Directory
21. Monday, September 26, 2011, Stuart Duncan, When Apples Talk to Oranges About Steak at Autism Father
22. Monday, September 26, 2011, Rachel Cohen-Rottenberg, Impact, Intent, and Dialogue at in the Autism Community at Journeys with Autism
23. Monday, September 26, 2011, Spectummy Mummy A Is for Advocacy at Spectrummy Mummy and Autisable
24. Tuesday, September, 27, 2011, Sarah, Well, Now They've Done It at Planet Josh
25. Tuesday, September 27, 2011, Autisms and Oughtisms What Are You Talking About: Of Whales, Ripples, and Advocacy at Autism Blogs Directory
26. Wednesday, September 28, 2011 Rachel Cohen-Rottenberg A Protest March is Not a Dialogue at Journeys with Autism
27. Wednesday, September 28, 2011  Laura, Seek First to Understand at House That Asperger Built and Autism Blogs Directory
28. Thursday, September 29, 2011, Sarah, Advocacy: It's Complicated at Planet Josh
29. Friday, September 30, 2011, Emily Willingham Is the disability-rights movement different from other civil righs movements in a critical way?  at A  Life Less Ordinary?
30. Friday, September 30, 2011  Jean Winegardner Who Should Lead the Autism Rights Movement?  at The Washington Times
31. Friday, September 30, 2011 Jean Winegardner  On the dialogues and being an ally at StimeyLand
32. Friday, September 30, 2011 Alicia Lile  About the TPGA Series at Moonlit Lily
33. Friday, September 30, 2011 Kerima Cevik About the Dialogues at Autism Wars
34. Saturday, October 8, 2011 Sullivan Who Should Lead the Autism Rights Movement at LeftBrain/RightBrain
35. Wednesday October 12, 2011 Julia Roberts The Silo Effect at Support for Special Needs
36. Wednesday October 12, 2011 Shannon Rosa The TPGA Dialogues, Discussed  at Squidalicious

A modest (indeed, inadequate) listing of a few other resources:

• Derailing for Dummies  Quite a few commenters mentioned this website, which takes a tongue-in-cheek approach to providing "A simple, step-by-step guide to derailing awkward conversations by dismissing and trivialzing your  oppositions perspective and experience."
• From The Transcontinental Disability Choir: What is Ableist Language and Why Should You Care? a short introduction to the concept of ableism.  There are many others.
• The History of the Autism Network International: The Development of A Community and Its Culture by Jim Sinclair
• The Self-Narrating Zoo Exhibit by Zifendorf  "Coined by autistic activist Jim Sinclair, this term made its first Usenet appearance in 1994. It describes the position autistic people find ourselves in within most autism organizations, mailing lists, support groups, and even one-on-one interactions with parents of autistic children or curious professionals."
• A Neurodiversity Organization for Non-Autistics? by ASParenting
• Perspectives: "Who Has the Right?" By Emily Malabey at International Coalition for Autism and All Abilities (ICAA)

Difficult but essential conversations Adults with disability talking with parents of disabled children: Day Five: Robert Rummel-Hudson

Friday's post is Robert Rummel-Hudson's reply

From the introduction to the series:

Because it needs to happen. Because being a parent of a disabled child is not the same experience as having a disability, and we need to figure out how we can have productive conversations about that disconnect -- especially when it affects our ability to work towards common goals.

Building constructive conversations and creating real social change isn't a garden party -- it is hard work. It requires steely listening, forcing ourselves to bench purely defensive reactions, and honestly trying to understand unfamiliar perspectives and direct criticism.

Robert begins his essay:

The world is watching us.

The world is watching as many parent-advocates and disability self-advocates fail to hear each other, fail to validate each other's very real work and very powerful experiences, fail to recognize the life pieces we share, fail to build on those commonalities.

The world is watching as some of our communities become tribes, as healthy debate on issues like vaccines, cures, inclusion, cochlear implants, privilege, and language turn into fights.  The world is watching as we feed on each other.

The world is watching, but the world isn't seeing our commonalities. And much of the world is more than happy to deny us a place at the table of human dignity. To the world, we probably look happy enough fighting over the scraps from that table. We're certainly busy doing so.

Building communities is hard work. It's hard because our commonalities are deteriorated by the things that divide us, certainly, but they are also eroded by the thing that we all really do have in common: our humanity. Our human failures, our egos, our fear of the unknown, our inability to view the world from another perspective. We're not characters in a movie. We don't represent specific archetypes that never change or grow. Like everyone else, parent-advocates and disability self-advocates are evolving. But evolution is slow, it's uneven and probably not much fun to watch.

Read the whole post. Read the comments.

• Link to the whole series
• Day One: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Day Two: Robert Rummel-Hudson to Zoe
• Day Three: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Day Four: Zoe of Illusion of Competence
• Day Five: Robert Rummel-Hudson</li>

Difficult but essential conversations Adults with disability talking with parents of disabled children: Day Four: Zoe

Thursday's post is Zoe's reply to Robert, which reads in part:

.....you were adamant that parents have a place in the disability rights movement. I want to begin by letting you know that we are in vehement agreement on this point: in terms of advocating for the rights of disabled people, I absolutely think that non-disabled parents and relatives have an important role to play.

As commenters this week have been pointing out, this role is a complicated one. Among parents, advocacy is occurring on two levels: parents advocating for their children individually, and parents becoming involved in disability rights generally. Because you refer to yourself as a disability advocate as well as an advocate for Schuyler, I can see that you consider both types of advocacy to be central to your work.

As a parent, you are familiar with your child’s needs. Your description of the role of a shepherd as a guide and protector is a moving depiction of the way you relate to Schuyler as a parent -- and, I think, the way parents relate to their children generally. I admire your efforts to guide and protect Schuyler, and I have no wish to tell you what to do on that front.

When it comes to broader disability rights advocacy, however, working cooperatively with disabled people becomes part of your role. The shepherd analogy is touching when describing parental care, but it is less appropriate as a model for a relationship between political allies. The problem is not only with this imperfect metaphor, but with the attitude towards disabled activists that the metaphor reveals....

I have some concerns from you letter that I’d like to address.

Go read the whole thing.  And the comments.  Always the comments -- which are also deep, rich, and challenging.

• Link to the whole series
• Day One: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Day Two: Robert Rummel-Hudson to Zoe
• Day Three: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Day Four: Zoe of Illusion of Competence
• Day Five: Robert Rummel-Hudson</li>

Difficult but essential conversations: Adults with disability talking with parents of disabled children: Day Three: Ari Ne'eman

From the introduction to today's post :

We're hosting a dialogue series this week, between parent Robert Rummel-Hudson, author of Schuyler's Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne'eman, President and co-founder of The Autistic Self-Advocacy Network. Why? We want to encourage constructive conversations about disability, and autism.

Today's post, the third in the series, is from Ari Ne'eman. Ari participated in the discussions surrounding Rob's and Zoe's original posts, was instrumental in getting these Dialogues to happen, and suggested the format they ultimately took.

Ari Ne'eman is a co-founder of the Autism Self Advocacy Network (ASAN).

In 2009, President Barak Obama nominated him for The National Council on Disability.  His nomination was put on hold for a number of months; he was finally appointed on June 22, 2010, becoming the first person with autism to serve on the council.  Steve Silberman's interview with Ne'eman was published in Wired on October 6, 2010.

Ari made two points I want to highlight here

One (emphasis added):

While I recognize and respect the role of disabled speakers who choose to talk about their personal lives, most of us didn’t get involved in the disability rights movement to be a resource for parents, however laudable a goal that may be. We got involved because we have opinions about how this society is approaching disability -- opinions that are certainly informed by our experiences, but are not simply the result of them and shouldn’t be discounted by virtue of our background. Jim Sinclair has referred to this as the “self-narrating zoo exhibit” problem, and I’ve felt it myself quite a number of times at disability-related events. People want to hear from us, but only if what we have to say is limited to our “true life story of overcoming adversity.” Once we start to sneak in political opinions, however, the accusations of “inappropriateness” and “disrespect” fly fast and thick.

Two (again with emphasis added):

We self-advocates are not a part of the polis of the disability community, as society writ large defines it. The roles that have been written for us are limited to being beneficiaries of others’ advocacy. And that is why – whether you like it or not -- the society we live in provides you and other parents with tremendous privilege. Even if you swore off the word from now till the end of time, our culture places you in the position of shepherd and we in the position of sheep. And sheep do not get the opportunity to disagree with the shepherd. Does that seem right to you?

The comments to this post have also been rich and challenging. Go read.

• Link to the whole series
• Day One: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Day Two: Robert Rummel-Hudson to Zoe
• Day Three: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Day Four: Zoe of Illusion of Competence
• Day Five: Robert Rummel-Hudson</li>

Difficult but essential conversations Adults with disability talking with parents of disabled children: Day Two: Robert Rummel-Hudson

Day two's essay is from Robert Rummel-Hudson, (book Schuyler's Monster blog Fighting Monsters with Rubber Swords).  Rummel-Hudson came to disability advocacy through his school-aged daughter, who does not have autism but  a rare congenital brain malformation that makes her essentially unable to use oral speech (in addition to other challenges).

This series of conversations at The Thinking Person's Guide to Autism conversations came about, in part, because of an online disagreement between Robert and Zoe, over a post Robert wrote about making the use of the R-word socially unacceptable.   the conversation didn't end well. 

Robert writes in part:

So we're in this place now where parent advocates of kids with any disability, not just autism, are told "You're not one of us, you can't understand our lives." And that exclusion might be appropriate sometimes, but not all the time, and I don't think all that often. It's not community, it's tribalism. And it's being wielded like a hammer, inappropriately at times.

And I understand why, and I understand that no, the crux of the issues we're writing about isn't parents, it's the person with the disability. But there are gray areas here, like everything else in life.  Dismissing us because we are parent advocates is wrong, and it's not doing anything at all to make anyone's lives any better. And when we make mistakes, we are simultaneously kicked and bemoaned at for the lack of dialogue or even listening. What that attitude towards us says is not "You're making mistakes, you need to broaden your perspective, you need to listen to people who can grow your advocacy in a productive way." It says "Go away, don't engage this community, this tribe, of self-advocates. There's no dialogue here, only posturing and lecturing and disregard."

So we have a choice: Retreat into our tribes, or find a way to diminish our assumptions about each other. And that's hard, for everyone. When we're offended, can we ask ourselves if the offense is intentional and worthy of a bitter response? And if it's not, if our offense comes from a place of ignorance, or from lack of perspective, or from things that we assume to be true without digging further, can we look past our emotions and our offense to find commonalities?

As with the previous day, in addition to the author's thoughts, the value is in the comments. Go read.

You should also read thAutcast's Letter to a Broken Shepherd, Landon Bryce's response to Robert Rummul-Hudson.  I learned a (painful) lot from Landon's post.

• Link to the whole series
• Day One: Zoe of Illusion of Competence to Robert Rummel-Hudson
• Day Two: Robert Rummel-Hudson to Zoe
• Day Three: Ari Ne'eman of Autistic Self-Advocacy Network (ASAN)
• Day Four
• Day Five

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.