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Friday, August 12, 2011

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

Julia Roberts, as  organizer and moderator, was the first to speak. Part of her introduction was her story of her son's mental breakdown, how his school reacted (with a desire for silence) and her family's rejection of the the school's attitude.

The first speaker was AureliaCotta (twitter: AureliaCotta blog with backstory: No Matter How Small).

Aurelia's talk was on why how blogging has been transformative for her; why she blogs and twitters pseudonymously; defending the right of folk to be pseudonymous online;  how she discovered her own disability, ADHD, late in life; and how connecting with others online can be transformative.

We then broke into small groups and discussed Aurelia's talk, and brought the larger discussion back to the group.  The biggest point was protecting our children's privacy, if we blog under our own names; and autonomy for older children, if we blog under our own names or a pseudonym.  There was a brief discussion of how to erase your blog presence from the internet (this is worthy of a separate post).

The second speaker was Robert Rummel-Hudson, author of Schuyler's Monster, who blogs at Fighting Monsters With Rubber Swords, and tweets as @rumhud.

The theme of his talk started out to be "How to tell a story no one wants to hear".   Robert mentioned his backstory -- his blog started out as a humorous look at new parenting, but transformed as Schuyler's disability -- a rare brain malformation that (most importantly in Schuyler's Monster) inhibits her ability to talk transformed him into something he never expected --a special needs parent.  As he spoke, he developed four themes:

  1. The grieving every parent of a child with a disablity feels -- mourning the loss of the idealized child
  2. Representing your child as a whole, autonomous being, more than just her disability
  3. The absolute need for people affected by disability to band together, especially in this adverse political and social climate -- to shift the framing from entitlements or funding to civil rights.
  4. Developing your voice, personalizing the issues, so that people not affected by disability can hear, understand, and empathize with disability issues, so when it comes time for hard choices, that person sees another human being, not "an issue".

Robert mentioned in particular the writings of Jean Vanier. From his writings, a world-wide network of intentional communities, L'Arche International, has evolved.

The final speaker was Shannon des Roches Rosa, who blogs at Squidalicious, is the BlogHer Contributing Editor on parenting special needs children, and is the co-founder and co-editor of The Thinking Person's Guide to Autism.  She tweets as @shannonrosa

Shannon has transcribed her talk at The Thinking Person's Guide to Autism (TPGA)

In her talk, she described how we have built the community at TPGA.  We can disagree, but it has to be with respect -- and what it takes to build that kind of vibrant community that allows conflict and disagreement within an envelope of respect.

The discussion that followed had to do with building blog community and with building bridges.  Some of the notable comments (I have cleaned up the speech dysfluencies and some of the spelling inaccuracies):

  • Unidentified speaker: Our role as bloggers and public representatives for disability: When we hear from the naive: "oh, how can you do that?  You must be so strong" -- that arises out of people's fear of having a disabled grandchild or a disabled child. We're their worst nightmare. We have to make it less of a nightmare--which all of our blogs do--but I want to say something about terminology.  I really don't like the word "disability", I like capacity. I say we're all on this continuum capacity. 
  • Ellen from Love That Max: I write about fun things a lot of times. I will write about, say, ten things I will never program into Max's speech app, like "Will you marry me, Snooky?"  By doing that, I attract people or kids who are typical. They will read my posts then. If they know I have a sense of HUMOR about it, they will read, and help me spread the word. So I think I can write the most depressing blog in the whole wide word, but I think I try to so a sense of humor and that helps keep my audience.
  • Unidentified speaker from Massachussets: I'm on a school board. School board members deal primarily with a budget and we get tax payers coming to us to complain. I want to reinforce something that Robert said about disability and advocacy and reaching out to communities that maybe don't have a disabled child in their families or anyone close to them. I get approached by tax payers at least once a year. They're usually older people that didn't have the Individuals with Disabilities Education Act (IDEA) or ADA legislation in their school days. They frequently use word "before". Of course, one older gentleman did so on a day that I had a particularly bad day with my special needs kid and I let him have it. I won't go into that except to repeat what I said: "Our children are not burdens and everyone's got issues."
  • Robert Rummel-Hudson: When we talk about how much money goes into special education and all the things that we need, people talk about that money... It makes me wonder, do people talk about the boulevards and bridges that don't collapse as a burden?  How about if your house catches on fire or if your community is hit by an earthquake? Are those "burdens"?  I talk about shifting the discussion of what our families and what our kids need to something besides an economic budgetary issue. This idea of a "burden" -- we've all heard it; it can be the number one thing in discussions with our communities and with political leaders. I think that's number one attitude that has to somehow change.
  • Shannon des Roches Rosa: All those people who have this "burden" problem, I bet you 90% of them went to public school.  I say to them, you went to school. You are the beneficiary of that investment in you. You are seriously going to take that away there the people who come behind you?
  • Shannon des Roches Rosa: You can tell people "You invest in our kids when they're younger. It's a lot less expensive than it is to support them as adults. Our kids are good investment."
  • Anita from momsrising.org.: Thank you. It's a real honor to be here in this particular session.... We have done a ton of advocacy around healthcare and medicaid. We had a bunch moms who shared  their stories around, parenting with special needs children.  We were able to take a group of mothers and children to  the White House to share their stories. The mothers let senior White House officials know the mothers, the families, wouldn't have made it without these programs. These officials are the people making and influencing policy and they have no idea until they heard the stories..
  • Sarah Gilbert and I blog at CafeMama.  I have three special needs children whose condition causes are not known.  I wanted to react to the thing about advocacy. I don't have energy for advocacy. A lot of times I just get so exhausted from advocating for my kids because what I'm getting at school a lot of times is judgment and from other parents and from the teachers and from the professionals. And so I just get tired out.  I'm not gonna fly to Washington and tell my story. I'm just gonna tell it, you know, where I am and for all the people who say, you know, how is your kid ever going to get along in society. I'm like F*CK society. Not that this is a bad kid or which is a kid that's going to be successful. I was voted most likely to succeed in high school. I went and got an MBA, and worked on Wall Street. Now I sit at home and write and I know this is the success that I wanted. I don't go to an office. I'm not on time for things. So I think kids can get along if we sit and change the expectation of what success is. Success doesn't mean $500,000 in an economic income and a Mercedes. Success means being true and hopefully, um, not being a sh*t, though my son is sometimes.
  • Cheryl from abilitypath.org. I wanted to thank everyone in this room. I've been in this field for 30 years.  The things we see are happening are bigger communities driving social change is because of you here in this room. The fact that you're telling your stories. You're got people who are listening to your stories. A quick success story! AbilityPath has been in direct services for 90 years, but we've been reading all of you for only about a year, to really hear what the emerging issues and are what really needs to be addressed.  What came up was bullying of special needs children.  We ended up with a 60 page report and also had a toolkit of what to do about it. I was flying to New York to be on CNN, to be on Good Morning America, and the producers called because  they had kids with special needs or a brother and sister.  In California, there is now pending legislature. I have the ear of the state superintendant of California schools -- he called me to talk to me about what he planned -- to work with every teacher in California is to turn the bullying around. So, the enormous power of building the community and what we can do.   I'm more hopeful than I have ever been and I'm thankful because I know all those stories are painful to tell and by doing that, that's how we'll make change.
  • Unidentified speaker: After Sarah spoke about how it's so hard and she's too tired to advocate, I cannot tell you how often I've heard that from people.  Some the problem is --although I want to celebrate everybody advocating for their children-- if that's criteria by which our kids get help, then it will only be the special needs kids who are raised by the wealthy, the educated, the literate, the white, the powerful, the undisabled who get help. The reality is not everybody can advocate for their children and can advocate politically. We have to find a way in the community to say,  Look! This mother is overburdened and we've all got to help her. There's got to be some sort of way. We can't just keep saying oh, we're going to fight this battle on our own. We're all in it together. Thank you.

Here's my Storify version of the tweet stream during the conference.

 

dot

Here is the link to the Liveblog transcript:

http://www.blogher.com/liveblog-lunch-and-room-your-own-special-needs-mini-conference?wrap=node/305898/virtual-conference/posts

(A brief note about the transcript:  It's the first time BlogHer has used a third-party liveblogging service, and there is clearly a learning curve.  The transcribers clearly needed more orientation -- such as a printed list of presenters -- with their names-- and some words common to the conversation, but uncommon in usual discourse.  Some of the names are garbled, and the transcript is faithful to the person speaking's utterances, but not so much the sense. )

A partial list of attendees and supporters, from Support for Special Needs

Friday, August 12, 2011 at 02:45 PM in autism, Building A Better World, Learning Disabilities, Weblogs: Roundups and Reviews |

Comments

Speaker Kecil

I'll read more about this BlogHer. I'll ask my friends to join too.

Posted by: Speaker Kecil | Thursday, August 25, 2011 at 09:41 PM

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