The Heart of Social Media

We hear so much these days about how negative social media has become -- and it has.  Facebook posts and tweets have become so ugly and hateful, and the art of intelligent conversation seems to have been replaced by name calling and insults.  Sometimes I have to shut it down because I just can't take it any more, especially when lead by the Tweeter in Chief.

But we forget that there is also a good side to the internet.  People are not all bad.  In fact, some are downright wonderful.

This morning I heard the story of a 4 year old boy, dying from kidney failure, who received a kidney from someone who read his story on Facebook.  It's not the first such story of such selfless generosity I have read.

Yesterday I received a phone call from someone who just wanted to find out if I was OK.  I don't believe I've ever spoken with her before and I don't think she has ever posted to the guest book, but she was worried that she had not seen an entry since July 5.  Knowing that this happens from time to time, I suggested she clear her cache and that might solve the problem, as it has for others in the past.

I assumed she was reading Funny the World, but she had been reading the mirror site,Airy Persiflage on Blogger.  Then I felt guilty because I have not updated that site since we left for Santa Barbara and she's right--there are no new entries.  So I apologized profusely, assured her everything was OK, and spent all day yesterday getting Airy P up to date.

But how lovely that she cared.

So many of you over the years have come through for me -- when I was losing weight, when I participated in various fund raising activities (especially when Ned and I had our heads shaved).  It has always warmed the cockles of my heart -- and surprised me! -- to find how many people read this and want to help.

And then there is Schuyler.  I have "known" Schuyler since before she was born.  I remember her dad's concern that he might not be a good father.  I remember that beautiful first year of photos of this adorable little girl as she grew into her chubby cheeks and made all of us fall in love with her.

I remember sharing his concern that, nearly a year of age, she had not spoken.

I remember the many doctor visits and tests when they finally had a diagnosis: Polymicrogyria, which is a condition in which  the brain doe not develop normally in utero and can cause seizures, delayed development and a lot of other symptoms, including inability to make the fricative sounds that allow them to speak normally.  Predictions for Schuyler were dire.  They predicted disabling seizures and an inability to ever read or go to school.  (More complicated than that, but that's the overview).

Refusing to accept the label of the "R-word," they continued research.  They discovered that with the help of a machine (now a cell phone, but then they called it her "big box of words") she could communicate, but it was very expensive, so many of us who had followed her story up to then chipped in and they were able to get it for her.

Rob wrote a book "Schuyler's Monster, a father's journey with his wordless daughter" which we all bought. Following publication of the book, Rob got very active in the disabled community and he and Schuyler have attended many, many conferences and shared their experiences.

Through the years, we have watched her ups and downs, cheered when she finished grammar school and went on to high school and joined the band (as percussionist).  We grieved for her inability to find a friend, rejoiced when she did.  We laughed at her love of monsters.

Last month we were so proud of her when she graduated from high school.  Einstein she is not, but she was able to get a job that would allow her to go to Australia with her dad to participate in a conference for the ISAAC (Int'l Society for Augmentative and Alternative Communication).

Then came the angry note from her father: 

The people who run Schuyler’s summer internship dropped the ball and didn’t follow up with her about her time sheet, so we’re just now learning that she will not in fact get paid for all the work she’s done in time for her to use those funds while she’s here in Australia.
Schuyler worked hard all summer to earn money for this trip, and now it falls apart because someone didn’t know how to deal with her timecards. She’s still asleep, so we get to have that fun talk when she gets up (plus another heartbreaking one that I’m punting to the end of the week).
Schuyler is supposed to be learning real world lessons from this program. I guess the one about how much or how little her work is valued by her employers counts as a real world lesson. It’s just not the one I was hoping for.

He wasn't asking for money, but again we chipped in and Schuyler has the money she needs to enjoy this experience.

When I look over Schuyler's life and the hundreds of faceless, nameless people who have helped, it makes me realize that social media is not all bad.  Sometimes it's downright good.

What to Say...? What to Say...?

My blogging life is interfering with my professional life.

I reviewed David Sedaris' one-man show, Santaland Diaries in 2009.  It was a funny irreverent look at a job-less wannabe actor's holiday job as an elf in Macy*s Santaland. The one-act show is purported to be the diary of his month working as Crumpet the Elf.  And it is funny.  The kind of Christmas show that would make a curmudgeon giggle (and tonight's recreation had portions of the audience almost literally rolling in the aisles).

But there is a problem with me in the intervening years.

You see, I have been following Rob Rummel-Hudson's journal, "Fighting Monsters with a Rubber Sword" (known by several other names in the beginning) since before his daughter, Schuyler was born.  I remember his insecurities wondering if he would be a good father, wondering if he loved this little person who was about to come into the world.  Then the first year with all those cute baby firsts, and then the concerns. She reached a year without speaking.  Then she got to be 2 with no words.  Tests ultimately showed that Schuyler was born with a condition known as Bilateral Perisylvian Polymicrogyria, a rare neurological condition that left her unable to speak.

Though I don't know if Rob even knows who I am, I have closely watched as Schuyler has grown, learning to use, first, her "big box of words" that allowed her to speak electronically.  I have read her story as she started school and wanted to be like everyone else, but was not, her unsuccessful hunt for a best friend.

Rob wrote a book, "Schuyler's Monster," which eloquently describes Schuyler's journey.  Now he is a regular contributor to the web site, Support for Special Needs, where he tackles a lot of issues of import and interest to parents of special needs kids, and those special need kids themselves.  

One of the issues he has spoken on several times is "the R Word."  After refusing to take a stand on the PCness of using the word, in 2011 Rob wrote the following:

just for kicks, pull out a photo of YOUR kid, or your nephew or your brother or sister. Doesn't even have to be a kid, just someone that you love fiercely and would defend with everything you are. Look into their eyes and say it. "Retard." Imagine it's not you saying it, but someone else, some other person. Maybe a stranger, maybe someone you know and even like and trust.

Now imagine that other person trying to tell you that you're being overly sensitive, you're being "PC", that they have a right to use that word however they want, that it's okay in a certain context such as politics. Imagine they're calling you or someone else a retard, but instead of hearing that as a random insult, you associate it with someone you love, and that association is, by design, intended to be devastating and intentionally using your loved one as a benchmark for extreme stupidity.

Now, repeat this exercise until you want to break something, until you want to burn down the whole world.

That's how it feels to us when you use the word "retard".

The issue of the word has come up several times in his Special Needs articles until I have become very sensitive to the use of that word and think I have a bit of an understanding of how it must feel to hear it tossed about, the way gay people hear "fag" and "queer" tossed about in a derrogatory manner.

So there I was at Santaland Diaries tonight and there is a long section devoted to the day when the special needs kids come to see Santa.  And it was R- this and R- that and the audience was laughing heartily, but to me it was as insensitive as if he were using the N-word instead of the R-word.

And now I don't know how to approach the review.  I read what I wrote last time and I never even mentioned that part of the show, but a part of me wants to this time and wants to chide the playwright for the use of such an insensitive word.

I just haven't quite figured out how to go about doing it without turning the review into a political statement.

Sheesh...Native Americans and Special Needs kids in the same month.   It's a hard time to be a socially sensitive critic!