Please Share

I think my story in and of itself is a plump one.
Take your pick, but most of the facets are individually pieces that people will write long about – from the early years on the rural sheep farm to the car accident. My parents becoming Baha’i’s, then moving to the Fiji Islands. Growing up white “kaivalangi”, deaf, attending a Chinese Catholic school for years. Moving to Hawai’i, sent to Japan alone at age 15 to go to a Japanese high school. College at 16. Rural Taiwan, then Japanese prep school (in Japan) at 17. Back to college in Hawai’i, graduation and starting off as an elementary school teacher in Macau (- then a Portuguese colony in China) at age 20.
Trust me.
That’s all just the tip of the iceberg.

I feel the greatest story of my life was the choice to have Moxie.
This choice slammed me up against the grill of my beliefs, expectations, hopes, fears. It pushed me through the door of radical change and demanded that I re-evaluate my life and everything that I was living by and for.

Prejudice, you see, isn’t easy to face.

It’s ugly.
It’s ignorant.
It brings out the parts in us that we wish didn’t have, that we are not proud of, don’t particularly want others to see.
Prejudice is our crown of shame, and when we wear it, consciously or not, we can feel the weight of it.
Before I had Moxie – even with my being deaf, even with my work in disability employment advocacy and counseling – I had a lot of prejudice about Down syndrome, about what it means to have a child with Down syndrome, about the syndrome itself, about intellectual disability.
I’d see parents with their offspring with Down syndrome at parks, in public and I’d pity the parent. I wanted no part of the “special.”
I wasn’t proud of my feelings and I would never have said them aloud. They were simply too ugly, too ignorant and I knew it even then.

Choosing to have Moxie freed me in a way I’m still trying to fully comprehend.

It released me from the shackles of constantly trying to be like other families, trying to live a typical life (and who was I kidding anyway?! I’ve never had a typical life!). Freed me from matching my clothes in any way other than what was most pleasing to my own self. It told me to wear the bright red lipstick, go camp on the beach in Mexico for a month with my babies, plant tulips because they are pretty and purple carrots because, hey! Purple carrots!
My Great Story – my greatest story so far – was about facing my fear and prejudice and allowing this little girl into my life and heart, and allowing my mind to open to those that are radically different from me.
And now that I have her, I know how uniquely precious she is. I am learning about how her Tribe thinks, acts, ways in which we are all united and ways in which we can savour our differences.

I know how alike a diva she can be, how we  laugh at the way she might flip out if we so much as touch her plate when she is engaged in eating, or how she imperially insists on independently doing her own everything. We shake our heads ruefully and laugh, “oh man… Princess Moxie!
This is the thing that I can’t get out of my head over Robert “Ethan” Saylor: he was likely the same way as my Moxie. He probably flipped out if someone touched his plate – or his arm – when he was doing something. Perhaps something like sitting in a theatre, watching a movie, enjoying a snack.
My daughter could be that young man. Anyone who thinks, acts or looks different from the mainstream could be that young man. Anyone to whom there is prejudice for could be that young man.
I can’t get this out of my head because unless and until we truly start to root out prejudice from our minds and hearts, this type of event can happen – a young man or woman can be killed over a movie ticket.
Killed over a movie ticket. Or rather, killed over the prejudice that tempered a moment.

More that you can do:

The petition:

You can call the U.S. Department of Justice- (202) 307-5138

This is important as they have stated that “there are no concrete action steps at this time. It’s a little bit early for us. We’re trying to assess the situation and see how much community tension there is.”

So let’s make some tension, community. Call!

You can use these form letters to send:
To the U.S. Department of Justice –
or by mail sent to

U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, DC 20530-0001
According to a press release from  the State’s Attorney for Frederick county, Robert Ethan Saylor died as a  result of three individuals’ actions on January 12, 2013 in Frederick,  Maryland. His death was and remains classified a HOMICIDE.
Robert Ethan Saylor was a healthy, 26-year-old man, who also had Down syndrome.
However, the above press release also states that Robert Ethan Saylor  was “…compromised by his Down’s syndrome…” and concludes that no  criminal charges are necessary in Mr. Saylor’s death.
I believe  that the above decision speaks to a continuing bias in society to see  Down syndrome as a disease, those with Down syndrome as lesser humans  and not deserving of the same respect warranted to those without Down  syndrome. I strongly believe, and do not stand alone, that it is a  violation of basic human rights to view Mr. Saylor’s death as somehow  due to his genetic makeup when his death has been classified a HOMICIDE.
I’m contacting you today to ask you to launch an independent inquiry  into the death of Mr. Saylor. I am asking you to prove to me that your  department believes in the humanity and equality of everyone, including  those with intellectual and developmental disabilities.
[your name]

And again, the petition:

You are acting for Robert “Ethan” Saylor, acting for justice, acting against prejudice.

 You are helping to make your own story great.

Please Share

Similar Posts


  1. I will send that letter today! Also, what do I say when I call? I’m sorry but I’m terrible with words, I want to say something eloquent and smart but I know me and most times when speaking about Ds my emotions take over and is a disaster!!!! Thank you for doing this. After I signed and shared the petition on FB I’ve been receiving notifications on my email from my FB friends who have signed. It’s so nice to see that what matters to me also matters some of my friends… I know they’re probably doing it because they love and care about Manolo! But still is a nice feeling!

  2. What an honest and brave story! I found myself smiling and nodding my head through most of it. I’ve always been a little “off the beaten path” myself. 🙂
    Thanks for sharing Ethan’s story with one of your own and making such a personal connection.

  3. I am astonished to hear about your earlier years — esp your time in school in Japan! I’m reading A Tale for the Time Being and I can’t imagine having any difference in that culture. How did you survive?
    I can’t forget Ethan either. It makes me ill thinking about it. Thank you for this post! I am thinking about ways to keep his story alive, to create change.
    Did you read the piece on Motherlode today about Ds and abortion? I don’t know why I ever read comments anymore. I am so saddened to read the vitriol and hate that spews from the general public. xo

  4. Wonderful post with such an important message. I just found your blog via LoveThatMax and I can’t wait to read more! Moxie is too cute, by the way. 🙂

  5. I
    I found this disheartening. This Mr. E. Sayer
    is a human being and deserves all rights and respect under the law.

  6. What a powerful story. Thank you for your witness, and your advocacy. And thanks for linking up with the Any May a Beautiful Change carnival. 🙂

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.