The Whisper Campaign—


Not too long ago, Thorin and I were standing in the hallway of a hospital. A young woman walked up to us wearing a very-new-looking navy blue nurse uniform. On one of her shirtsleeves there was a badge with the words: Nursing Student.

She leaned in close: “I have four people with Down syndrome in my family!”

That was noteworthy, especially considering I would learn they were all biological children spread between two generations. But — what stood out as much as that fact was that she said all the words in a normal tone of voice except for: Down syndrome.

To anyone passing us in the hall or to Thorin standing next to me it must have sounded like her voice dropped out for a second or so.

This whispering the words ‘Down syndrome’ has happened to me on numerous occasions with Thorin present. Actually it only happens when he is present.

The first time it happened I started whispering, too. I’m a polite person—seriously, I am– so I was trying to match their vocal level. I whispered the entire conversation but I had no idea why.

The next time it happened– I got IT. It was those words specifically that were being whispered. It made me think of all the whispered words I had heard over my lifetime: sex, abortion, AIDS, weed, Kenny G. It was clearly time to take back ‘Down syndrome’ by saying it loud and proud which is what I did in response to future whispering.

To be fair– maybe in their minds they whisper because they assumed Thorin doesn’t know he has Down syndrome. In that case keep your story to yourself. Thorin understands words in general and he knows whispering implies secrets.

So, back to this particular day when the student nurse said that– I turned to Thorin: “She has four people with Down syndrome in her family!”

He looked up at me and rolled his eyes. Fortunately she didn’t notice.

Thorin’s in a my-mom-is-a-nerd-phase that I’m guessing lasts about a decade.

Regardless, I still think it’s my job to say ‘Down syndrome’ at the same level as all the other words.



Self-advocate, John Frank Stephens on the R-word


This is what you need to know:

Gary Owen’s is a “comedian” who says horrible things about people with intellectual disabilities. In reference to his cousin: “Tina’s retarded. She’s not slow. It’s full-blown.”

He makes fun of her contracting an STD, and acts out what he assumes sex must be like for a person with an intellectual disability. He regales his audience with his interpretation of Special Olympians:“The 100-meter dash is the funniest shit you’ll want to see, because it’s literally eight people running with no arm swing.”

Yes, his audience laughed. Yes, he is despicable.

John Franklin Stephens is a self-advocate who has Down syndrome and a Special Olympics Global Messenger. In 2012, he authored the open letter to the horror that is Ann Coulter.

Yesterday, Mr. Stephens took on Mr. Owens. His post on HuffPost: How Bad Is Gary Owen’s Comedy Routine on Showtime? is brilliant.

Not only do I encourage you to read his post but please sign the petition at the bottom of his essay because Mr. Owens is a full-blown bully.



on telling the stories of characters with Down syndrome


My aim today is to direct you to a brilliant essay written by Sarah Kanake, lecturer in Creative Writing at University of the Sunshine Coast Queensland, Australia on the portrayal of characters with Down syndrome in novels.

A deficit she examines is also apparent in the Down syndrome blogosphere: “…the Down Syndrome Novel is rarely (if ever) told through the perspective of a person with a disability: they are largely told by parents.”

I hope you will go read her essay soon! Click hereFriday essay: on telling the stories of characters with Down syndrome


High-Functioning Teachers Needed


Here’s a conversation I had yesterday with a stranger:

“We’ve noticed your son walking around here today.”

“Okay” I said.

“He’s good-looking.”

“Yes, he is.”

“Say, is he reading that book?”

“Yes, he is.”

“So, he’s high-functioning?”

“Listen, I am willing to take time out of my day to explain something to you.”

Genuinely pleased she said: “Thank you!”

That was easier than I thought.

“Okay, listen up, “high-function” and “low-function” is crap. That’s something The Man– you look old enough to remember The Man, am I correct?”

She nodded: “Yes.”

“Okay, so, The Man, says we’re not going to invest our time in teaching certain people so we will come up with some crappy way to absolve ourselves and blame the student. Hence: high or low functioning.”

“I know just what you’re talking about!” she exclaimed.

Her enthusiastic response embolden me. It might be hard to believe but I wasn’t done being bold.

“We home-school because in school he was the recipient of mostly low-functioning teachers, aides and school administrators. I’m a high-functioning teacher so I teach reading and everything else.”

“It’s the System that’s low-functioning!,”she said.

“There you go!”

“We have one of him in our family, a niece.”

“One of him?” I asked, “You mean someone who is super good-looking?”

“No one ever taught her to read” she said, “And now she’s 32 years-old and pretends to read the Bible at church.”

“That’s awful. That’s a crying shame.”

“Her mother, my sister-in-law, is a teacher.”

“It’s not too late for her to learn to read” I offered, “There are people who can’t read at all ages. Just think of her as a person who can’t read– like any person.”

“We need more high-functioning teachers” she said resignedly.

I left thinking her niece would never be taught more than she knows right now.


Portrait by Thorin


I’m posting one of Thorin’s recent photographs. For the photographer it is a “guy” he wanted a photo of. For me, it speaks volumes about tax season and our current political scene. He has assured me I am wrong.

uncle sam

A guy

For other posts on Thorin’s photography:  POV, Shutter Bug,Warholian Selfies, T’s Photos of Sally’s Garden  Picture This and Portrait of an Artist as a Young Boy.

Not Always Happy— A Comedy


Since 2010 I have documented our family’s story on this blog and in other online publications by writing edgy, sharp and funny narratives that advocate for my son, Thorin, who lives with Down syndrome (Ds) in the hope others will think differently about all people with Ds.

I am a more ‘show’ than ‘tell’ writer so that introductory paragraph was painful to write.

For some time I have wanted to share our story in-person with an audience – but I had no idea what that would look like. I sought advice.  I was encouraged to create a knowledgeable presentation for doctors, therapists, teachers and school administrators. Basically, anyone I argued with over the years.

Everyone suggested a ‘PowerPoint’. I might have flinched the first time. I know my throat felt constricted all the times. I wondered can you use F-bombs in a PowerPoint?

None of it felt right and it sounded very, not funny.

How can I be me, I wondered?

Enter Bess Welden, actress/playwright/director/educator/awesome person who 11 months ago asked me if I had ever considered turning ‘a typical son’ into a performance piece.

I said: “No.” And, then I agreed to do it even though I had never done anything remotely like it.

I said: “Yes”because it felt right. It also scared the crap out of me. Bess assured me that is normal for a first-time performer.

I am completely grateful to Bess who saw the intention of my writing and believed enough in it (and, more importantly Thorin) to say I can help you. I’m lucky to have such a collaborator:)

With support from the Maine Arts Commission we have been creating a one-woman storytelling performance piece titled: ‘Not Always Happy’.

Stay tuned for details about our first public work-in-progress reading as part of PortFringe 2016 on June 25th.

When I asked Thorin if he was okay with me doing it he said: “Oh, no! No writing! Too much!”

“I’m writing it.”

“Good! You can do it.”

I hope you will like us on Facebook!

Visual for NAH twp Spring 2016.jpg


The Aliens Take A Vacation


If you heard a loud noise in the sky maybe it was The Aliens taking a ride.

For past episodes of Totally Normal: Episode 1: Who’s Asking?,  Episode 2: Not Alone Episode 3: Alien City, Episode 4: Get The Mayor, Episode 5: The Halloween Special ,Episode 6: Alien Sorcery , Episode 7: Frank’s Reappearance, Episode 8: The Bookstore , Episode 9: Alien Interrogation , Episode 10: The Supermarket , Season One Finale! , Season 2: The Alien Importance of Scissors and Meet Mike Coco.

More than a Cookie


I love this post by Harriet Heydemann on her blog Tell Me This. I hope you read it and others on her blog. Kwp

Tell Me This

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It’s Girl Scout cookie time. I bought a couple of boxes a few days ago. The Scouts were in a prime spot, outside Lunardi’s Supermarket. Location is everything. I remember standing in front of Safeway with Ariela and her troop. She used her communication device to call out to customers, “Girl scouts cookies. Would you like to buy some Girl Scout cookies?” Her digitized voice sounded like a girl’s version of Stephen Hawking. People stopped. Then another member of her troop would swoop in to close the sale.

While I waited outside Lunardi’s for one scout to show another how to charge my credit card, I asked them, “How’s business?” The mother (There’s always an adult at the cookie table.) said they were doing well.

“I was the cookie chair for years,” I told her. “For my daughter’s troop.”

The mother smiled. “And where is your daughter now?” she asked.


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