Holland Outliers (a rewrite)

Joshua Tree in a Dress, California, 2016

Truth always rests with the minority, and the minority is always stronger than the majority, because the minority is generally formed by those who really have an opinion, while the strength of a majority is illusory, formed by the gangs who have no opinion — and who, therefore, in the next instant (when it is evident that the minority is the stronger) assume its opinion… while truth again reverts to a new minority.

Soren Kierkegaard

The vaccination posts keep popping up again, faster than I can delete or hide them. Children sent home from school for not being fully vaccinated, cheers! it's about time! the gloat, the confidence. Erasure. When minority voices are made quiet, darkness prevails. 

I'm not going there, the old familiar sickening quickening.

(a re-working of an old post)

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon back in the darker days of the last millennium when things were passed mouth to ear, a paper from hand to hand, and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting in only cracks. Sophie's summer school teacher sent home a progress report one year, something I'd normally only glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, long-shadowed, the moon's pull, the tide washed over me, outlier.

How We Do It: Part XXXI in a Series: Outliers from Holland

Sophie, Car-wash, Los Angeles 2013

We're tribal people, and many moons ago I read a signature piece for the parents of the disabled called Welcome to Holland that I keened toward for about one moon and then crumpled up as I crumpled, lit it with a match, burned a few animal gods in sacrifice and threw it to the wolves. My tribe left Holland behind and ranges loosely at the borders, howling at every moon whether full and shining or slivered, letting only cracks in. Sophie's summer school (ESY) teacher sent home a progress report the other day, something I'd normally glance at in scorn because, really, what's the point? Our tribe resists the denial, doesn't welcome false blessings, looks for grace in contrast. Somehow, though, this small report of A: Produces markedly superior work and E: Excellent citizenship meant something. Under Teacher Comments: A pleasure to have in class!, the exclamation point seemed merciful. I fell back from the tribe for a moment, the moon's pull, the tide washed over me, outlier.

Pillow Angels, Growth Attenuation and The Ashley Treatment

William Blake, Songs of Experience

I first heard the expression pillow angels, I think, in an issue of People Magazine (correct me if I'm wrong because I don't have the time right this second to check). Basically, the term refers to those children whose disabilities are deemed severe enough to their parents and doctors that they are given hormone treatments to attenuate their growth and thus make "it easier to care for them" and "give them a happier life."  They are described as "angels" because they're pure and innocent, their little heads resting on pillows to the end of their days.

I'm the type of person that has immediate and very intense instinctual reactions to things, and when I read about Ashley, and her parents' decision to attenuate her growth, to give her hormones to stop her growth, nip her breast buds to keep them small and remove her uterus and ovaries in a complete hysterectomy -- well -- it made me nearly sick to my stomach. The expression pillow angels is particularly repugnant to me, having that sort of treacly sentiment that drives me insane (think Welcome to Holland, God only gives you what you can handle, everything is a blessing and a treasure and all that jazz).

I like my angels fierce.

Suffice it to say that while I dreaded the onset of puberty for Sophie, I never once considered removing her uterus to spare her the pain and inconvenience of menstruation. Why not, some might ask? Like I said, this feeling, this knowing, comes from a very deep, instinctual place, and I don't mess with it. I honor it. It's easy and natural to fear what we don't know; I have found that when we reach what we've feared, it's never as bad or as difficult as that unknowing.


The Ashley Treatment has sparked much controversy in the disability community, and better minds than mine have argued unceasingly about it, but when I read this article yesterday in The Guardian newspaper, I decided to state my own feelings about it. I've actually been asked, on numerous occasions, by well-meaning people why I wouldn't give Sophie a hysterectomy.

And this is why, and it's pretty simple: I believe it to be barbaric. I also think that cutting your face up to make it look younger verges on weird, too.

If I were a truly good Buddhist, I would strive to do so, but I don't feel a whit of compassion toward these people who would do such a thing to a child. I am stunned into wondering whether it's one of those impossible conundrums -- there are some people that agree with shit like that and others that don't, and despite the cajolings, good intentions and explanations on both sides, neither side will meet. For that reason, I'm not sure these kinds of things should be legislated, so while I deplore a hospital like Seattle Children's that condones and actually performs growth attenuation, I don't necessarily think it should be made a criminal act. But again, better minds have argued for this sort of legislation, and I might be persuaded.

Reader, thoughts?

What I learned today

I spent the day, again, as a fellow for LEND (Leadership Education in Neurodevelopmental Disabilities), and just like the other Wednesdays, I thought I'd highlight something interesting, something that stuck out and that struck me.

What I learned today is that persons with Down Syndrome in the Netherlands, as well as other folks with intellectual disabilities, have improved access to their communities, and that those communities work hard to include these people and help to foster their independence. The speaker who talked about this was an American nutritionist, married to a Dutch man, and she had traveled quite extensively in the Netherlands. She spoke of an afternoon where she saw many, many people with Down Syndrome riding bicycles to their work from their group home, and said, too, that it wasn't an uncommon sight to see people with intellectual disabilities navigating the cities on their own.  It was her "unscientific" opinion that the community fostered by this inclusion was far greater than here in the United States where inclusion is "the law" but still struggles in the culture and in practice.

I have to say that it's my non-scientific opinion that I, and a lot of people like me, spend an inordinate amount of time "defending" the rights of our children or young adults with disabilities. I have had top educators in the school system, principals even, use the "economic" argument -- that educating the severely disabled somehow "takes money away" from those who are "typical." But that's for another day...

A trip to Holland might be worth it, after all! (And this is an inside joke, meant for those who share my skin-crawling dislike of the Welcome to Holland letter.).