AnnaRose Rubright is someone I first became aware of in March, 2016. She was in–  what has became known as– the Olivia Wilde World Down Syndrome Day video. Wilde portrays Rubright until the end scene of the video revealing that the woman speaking, Rubright, who has Down syndrome. The hashtag was #HowDoYouSeeMe. The video was judged harshly on social media by some parents of children with Down syndrome and actual people with disabilities– however, not anyone with Down syndrome– for being abelist.

AnnaRose Rubright

You know what didn’t happen on social media? No one asked AnnaRose what she thought about it all. In fact, I can’t find any mention of anyone– parent, blogger, journalist, reporter– talking to a person with Down syndrome about it. Or any commentary by a person with Down syndrome. If I had Down syndrome I would probably lay low on this kind of thing, too. Who wants to get crapped on by a group of parents? Or other people with disabilities? So much for allies and intersectionality when you have a cognitive disability.

We– The Royal We– like to decide everything for people with Down syndrome– on every GD thing under the sun. How awful for them. How abelist of us. How fucking typical.

Meaningful segue way: Whenever I read a book on Down syndrome I look to see if someone with Down syndrome provided a blurb on the book cover. I never find it. When I got it into my head I would write a book I knew I wanted to rectify that. I contacted people with both Down syndrome and other cognitive disabilities with my request: “Will you read my book and tell me what you think? If you like it can I have your blurb on the book cover?”

AnnaRose Rubright said yes and said she was honored. I felt shame at her honoring me. It quickly turned to an understanding. She has wondered, too, why people with Down syndrome were never asked.

AnnaRose did me a solid, because when I made my request, which included a six-week turn around, she was a full-time college, with an internship, a part-time job and two sports. In May, AnnaRose graduated from Rowan College with a degree in Entertainment Technology. Her major is Video and Digital Media Production. (I was a documentary videographer for almost 15 years. I told her I want to see her work.)

AnnaRose’s review included an analysis of the entire book from the author’s intent, to accuracy, intended audience and more. AnnaRose researched writing a review. Typical college student. Her feedback also included  “omissions.” She offered: “social life, more about Ward.” I couldn’t agree more. As a writer you think of a many things you should have included, both were on my list.

from the back cover of Not Always Happy: An Unusual Parenting Journey

AnnaRose and her mom, Lin, sent me video of AnnaRose reading. I broke into tears. Not just because a woman with Down syndrome was reading my words but because someone other than me was reading my words. I’d never heard that.

AnnaRose’s review is my most important review– and I have terrific comments on the book which I love and cherish– and I love hers most because she has Down syndrome. AnnaRose does not speak for all people with Down syndrome but she speaks for herself and that doesn’t happen enough in this world.

My new dream is for AnnaRose and I to perform together in the production ‘Not Always Happy’ directed, by my friend and ally, Bess Welden. Bess and I are in agreement, this one-woman show could use AnnaRose.

So, Universe, my cousin and his family live in Philadelphia about 45 minutes from AnnaRose’s family in New Jersey. Help me swing a book tour to Philly and a performance somewhere in-between with AnnaRose. I have never meet my cousin Joel’s family so it would be a major two-fer for me and I’m pretty sure we get to stay with them.

I will be thanking and acknowledging quite a few people in the coming posts. I’m a lucky person who has gotten amazing support from amazing people regarding my book.

For more reviews and information about my book please go to my author page.