Alison Piepmeier, A Meteor

Night Sky, Perseid Meteor Showers
Joshua Tree, California
photographer: Carl Jackson

When I drove out to the desert on Thursday with a friend to watch the Perseid meteor showers, I knew that my friend Alison Piepmeier was dying. Alison was a beautiful woman whom I met online many years ago and with whom I spoke several times over the years on the telephone. She was a badass and a kickass professor of women's and gender studies at the College of Charleston. Her delightful blog Every Little Thing chronicled her life as an academic, a lover of Star Wars, a mother to her darling daughter Maybelle and, of late, her struggles with cancer treatment and death and dying. She had an infectious smile. She was working on a book about the high incidence of abortion of fetuses with Down Syndrome and worked passionately to "change the game."  Her daughter Maybelle was the delight of her life, and I think that child will be held with love in the minds and hearts of tens of thousands of people who were fortunate to know her a bit through her mother's writing. Alison appeared in the Extreme Parenting Video Project that I made years ago, her smile brilliant and her hair thick and curly. She was a dogged and passionate advocate for the disadvantaged and the disabled. She wrote a brilliant and moving essay in the final weeks of her life that will tell you everything about what kind of soul she possessed.

She died of a brain tumor in the early hours of Friday morning, surrounded by her husband and family and friends. She was 43 years old.

I saw many meteors on Thursday night and into Friday morning, light shooting across the sky, one after the other, the desert still and vast, implacable. I thought of Alison and her passage from this world to the next, how grateful we were to have her here and how much we will miss her.

Listen to and read these:

Down Syndrome and Equality

Thank You For My Beautiful Life

Heads Up for a Conversation Between Amy Silverman and Me

We'll be talking about writing, parenting our Sophies (yes, they're both named Sophie!) and most importantly of all, promoting Amy's wonderful memoir:

My Heart Can't Even Believe It


If you're in the neighborhood, come on out to hear us. If you live elsewhere, buy the book at your independent bookseller or order from Amazon!

Alison

photo via Charleston City Paper

That beautiful woman is my friend Alison Piepmeier. I have never met Alison in person, but I've read her writing for years, delighted in her adorable daughter Maybelle, and one, glorious night talked on the phone with her for more than an hour when she was visiting southern California. She appears in the extreme parenting video that I made years ago as well (her writing about Maybelle's Down Syndrome is some of the most incisive disability writing today). Alison is a rebel, an intellectual, a raucous feminist, and a warm and beautiful person of formidable intellect. She just had brain surgery and is struggling to articulate herself in the way she has for many years as a vocal advocate for the disabled, the underserved, women, and the LGBT community. The surgery impacted the part of her brain that governs speech and language, and while she has a good chance of recovering, she still faces chemo and radiation. This morning, I sat in bed sipping coffee and was delighted to see that she had written a column again for the Charleston City Paper. What I didn't expect was to find myself weeping pretty copious amounts of tears into my coffee. The column is decisively NOT inspiration porn -- that bane of many of us in the disability community -- but it is at once heartbreaking and tremendously inspiring. It'll take your tears and your breath.

Molto forte e corragio, Alison. We love you.

Beyond Disability Porn ( with a correction from Red Sox to Cincinnati Reds)

I was happy to read Bill Peace's blog post today titled Hard to Believe, Sports Illustrated, Teddy Kremer and Feel Good Stories. As a passionate disability advocate, Bill has opened my eyes on many occasions, and  in this post he addresses the trouble the media has -- and the propensity of our culture -- with depicting those with disability in a seeming attempt to highlight or inspire but rather demeans them. We call it disability porn, and I know that we're all guilty of it, at some point or another, even those of us who fight the stereotypes daily.

What's so unusual about the referenced story in Sports Illustrated is that it not only tells the inspiring story of a  Cincinnati Reds bat-boy who also has Down Syndrome, but it actually calls for more progress. In fact, the article by Paul Daugherty is titled Reds Bat boy with Down Syndrome a Great Story, But it Shouldn't End. 

I urge you to read both Bill's post and the Sports Illustrated article. Educate yourself and then pass along what you've learned.

Down Syndrome, Comments, and Fellini

Allison Piepmeier, a brilliant academic writer friend of mine, and the mother of the incomparable Maybelle, had a piece published in the New York Times'  Motherlode column a couple of days ago. Allison wrote the piece as a response to the recent law passed in North Dakota outlawing abortion for fetal conditions such as Down Syndrome. I won't review what she said, as the piece is short, and I'd urge you to read it yourself, but what has stuck with me in particular all day long are the more than 200 comments that I made the mistake of skimming through after reading Allison's intelligent words. Filled with vitriol -- on both sides of the abortion issue -- they are, with few exceptions, some of the most ignorant and upsetting opinions and viewpoints that I've read in a long, long while. They are the stuff of depression, the stuff that drives some of us in the disability world to want to retreat into caves, overwhelmed at the prospect that no matter how hard we try, we may not ever fully engage people into valuing the lives of people with disabilities. Full inclusion might never happen, our children and fellow citizens might continue to be commodities, burdens that inhibit productive life, argued over in the marketplace.

I'll say here that I am particularly repelled by Dakotan lawmakers who have passed some of the most draconian laws against women's reproductive rights in the country, but I am also disturbed by those in the disability community who champion the law as, somehow, a victory for the most vulnerable. I have been asked the infamous question about Sophie and abortion -- whether I would abort her if I'd known what would happen. To this question, I will only answer that it's impossible. It's impossible for me to answer this question. I am who I am because of my daughter's strange journey on this planet, and I am who I am, living questions, not answers.

And now let me retreat to my cave. I'll be watching this: