No, not back to our regularly scheduled program

The video is now posted at the NASW site.

[Another update: The response linked below has been removed by PLoS blogs. It was not something I had requested, but I appreciate the choice (ETA: in the context of their own writers' agreement, not my personal inclinations; there is a cache of their two posts here) and am glad to see that the comments have been left in place. There is some disagreement over PLoS's decision, but I can't speak to what the folks at PLoS feel they need to do in the context of their writers' agreement. Again, the other panelists and I expect to produce a formal writeup and review of the session and plans going forward once we have the video available as a source.]

[ETA an update: The two people involved in the post I critique below, Tabitha Powledge and Beryl Benderly, NASW board members, have posted their comments about my critique here. I will let their two responses speak for themselves and just reassert that the original post was an example of the problem in having foregrounded men in every aspect, from text word counts to links included to who was named and quoted to art to tags to "the most powerful and significant statements came from men," and that the tone of "back to our regular program" was inappropriate. Further, I add that because I was commenting on a high-profile summary of a very high-profile and edgy situation that is critical to our community, one written by a board member of NASW and featured on the site of another NASW board member, I also vetted my commentary with half a dozen relevant people before posting it. As for a formal post about the NASW panel from the panelists themselves, of which I was one, we await availability of the video recording of the proceedings so that the overview will be complete.]

Perhaps that's part of what got us where we were in the first place, this willingness to lapse back into the programmed complacency of sexual inequality and unreported sexual harassment. The "where" was a panel on women in science writing, and the "we" were the six women--Christie Aschwanden, Deborah Blum, Maryn McKenna, Kathleen Raven, Florence Williams, and I--who made up that panel. There were six of us who sat there, who presented, paneled, and answered questions, yet in this writeup on the session at the National Association of Science Writers (NASW) conference in Gainseville, Fla., where our panel convened, one of us doesn't even get a mention. The writeup appeared at PLoS blogs on the site of NASW blogger Tabitha Powledge, but Beryl Benderly, NASW treasurer, wrote the XX panel summary. [ETA: The NASW board has clarified that the board did not request the blog post, edit it, or even become aware of it before it was published.]

Instead of highlighting what each of the six of us said, the post, in what I must characterize as "business as usual," not only leaves out mention of a member of our all-women panel but also treats the standing-room only plenary session as an aside, something to roll into a longer section that talks about ... life on other planets? Indeed, of the 2285 words that make up the post at PLoS, 1335 are devoted to the possibility of Earthlike planets and life elsewhere instead of the possibilities of the lives of at least half of us right here. 

And of the 950 words allotted to the XX science panel at the NASW meeting, 264 were devoted to what the men in attendance at the session had to say. That stands in contrast to the 238 words given to what women on the panel and in the audience at this session on women in science writing had to say, words that trail off in the post without even an end punctuation. Not only that, but the section devoted to the men's commentary begins with, "But some of the most powerful and significant statements came from men."

Really.

Six women sit on a panel before a standing-room only audience, show data (courtesy of unable-to-attend Kate Prengaman) demonstrating the monstrous inequality of recognition and work that women in science writing receive, deliver powerful personal stories about the multitude of experiences they have had over their careers--some of them jaw-droppingly unbelievable--but the "most powerful and significant statements came from men."

As if that overshadowing weren't enough, in the post, the "art" included with the 950 words devoted to the panel is a huge graphic that references "The Blogfather." That would be Bora Zivkovic. That would be the very person who one of the panelists has revealed sexually harassed her. Yet instead of including images of the panel or of any of the panelists or even of a woman, this post on a women in science writing panel that addressed, among other things, problems of sexual harassment of women science writers, includes only an image that references someone who has ... a record of harassing women science writers.

As a sort of coup de grace, the post tags are as follows: aliens, astronomy, Bora Zivkovic, exoplanets, intelligent life, Kepler spacecraft, Milky Way Galaxy, On Science Blogs, science blogging, science journalism, science writing, Scientific American, sexual harassment, Tabitha M. Powledge, women. Not one of the names of the women who were on the panel appears in the metadata. A summary of the post on the NASW Website focuses, like the post itself, on astronomy and gives a single line to what ought to be a major issue for a national association of science writers representing its membership.

After that series of what I can only describe as mounting offenses, the XX panel summary comes to an abrupt end, offering a segue into the bulky remainder on Earth-like planets by saying, "We Now Return You to Our Regularly Scheduled Program." 

Based on the content and emphasis and oversights of that post, it looks to me like we never left that program. The old emphasis on male voices and the attitude of "phew, that's over" are the same old regular programming we've been watching and living for decades. And that, my friends, is the problem that put the six of us in front of a standing-room only crowd at NASW in Gainesville in the first place. And--I believe I can say this with certainty--not a single one of the six of us is content to return to that regular programming. There will be no sliding back into complacency this time.

[Update: PZ Myers at Pharyngula offered up a critique, as well, making some very similar points.]

Google "Autism and ..." and this is what you get

Disability and the family superorganism

Some parts of our superorganism

We are a family of five people. Because our children are still young (I suppose this is why, anyway), we function as a unit. Our lives intertwine and entangle and are inseparable, and nothing one of us does goes without effect on another of us. As with social insects or naked mole rats, each member of our multi-organism unit is important and influences all of the other members. We are one for all and all for one.

Sure, that'll probably diminish some day when some virtual apron strings snap, when our unit's functional parts extend so far from one another in time or space or both that reassignments will be required. But right now, we are our unique version of a superorganism. When one part of that organism becomes disabled, acutely or permanently, the entire organism feels it, experiences the disability, not just as an ally or a relative but as part of the most important systemic unit in the human experience, the family.

You might think that what I'm talking about here is autism, because I talk about that a lot. And there's no doubt that the fact that our oldest son has autism has influenced the other parts of our superorganism. We've all felt the disability, the way society treats us as a disabled unit, the way our thoughts and hearts and souls are all entangled and interfunctioning and inseparable in experiencing that disability.

But unlike the experience of some families, all of our negatives from autism have come from outside reactions to our family unit, not from the disability itself or internal tension. Indeed, it's certain that an enormous contribution to the disability of autism has to do with the way society treats autistic people and their families. Because we are one for all and all for one, that maltreatment of our son has always, always reverberated through our superorganism. In fact, he's often been completely unaware of the reverb even as two of us experience it acutely.

This one isn't about autism, however, although I'd like you to keep autism in mind. Instead, it's about a nonfatal neurodegenerative disorder I have. The outcome of having this disease is usually permanent disability, primarily the kind that affects motor functions. About 25% of people with it end up in wheelchairs, and most need some kind of walking assistance. Some remain walking their entire lives but experience various deficits in function. Other problems accompanying this disease include bladder issues, serious fatigue, and pain. It's insidious and gradual and slowly, inexorably whittles away at function, sometimes so subtly that the changes are hard to track unless one considers them in the frame of years.

It's been six years this month since I felt the first symptoms of primary progressive multiple sclerosis. There's no cure and little to be done for it except perhaps physical therapy, some medications for symptoms, and keeping yourself otherwise in the best health you can.

For those six years, I've experienced a deterioration in certain capacities. Deep steps become mountains, and thanks to my bladder, I can't ever be too far from a toilet or a very, very private shrubbery. Standing is a slowly building torture. Walking can be a particular struggle. I've gone from a rapid stepper capable of double-digit mileage with little trouble to putting in just under 2 miles on a good day, always with repercussions. It rather sucks. The spasticity hurts, the sensory symptoms buzz and stab and tingle. The pain can be quite distracting and even wake me up in the night. Some of the pain is mechanical, not the result of neural misfires but arising from the efforts of my working parts to compensate for my not-so-well-working parts.

Unless an assistive walking device enters the picture, primary progressive multiple sclerosis tends to be an invisible disability. And it's without doubt my own personal experience. No one can see the pain. You might see the waddling or Trendelenburg gait, but usually only after I've covered a half mile or so unless it's just a bad day. You won't see the fatigue, either. It's all my personal, internal, individual experience of disability.

Except.

I live in this superorganism, you see. One in which I'm an important contributing gear, among the parts that keep our unit going. And my disability isn't just mine, and it isn't just my personal experience. My spouse, more than anyone, experiences it, too. He feels, as much as is possible, what I feel, empathizes, understands, compensates. He takes up the parts of my role in our superorganism that I can't fulfill on certain days and fills in gaps where I have to pull back: as parent, cab driver, wage-earner, chef, scheduler, teacher, friend, support system, and enrichment coordinator. My sons have little understanding about my condition, but they know that sometimes, I walk funny and have to pee a lot and that heat makes me ... less functional. They, without knowing it, also compensate for my disability.

My sons and my spouse don't directly, internally experience my neurological signaling or what it's like to be me. But because we are all part of the superorganism we call "family," my disability becomes their disability. And my experience seeps into their experience. Like the parts of me that still function OK, my family takes up slack--and themselves must thus compensate--for the part that's not in the best working order for my designated roles. Imagine if all the people, not just families, did this for one another as a global superorganism. But that's another post. And as long as that utopia remains elusive, much of the work of our little family superorganism will involve swimming upstream together against the currents of stigma and social resistance to accommodation.

So, speaking as someone who is physically disabled, I posit the following: When we talk about disabled people, I'd like to suggest that we cannot readily or easily or cleanly draw lines between those who carry the disability label and those who function with the disabled person as part of a unit. My sons and my husband share it with me, and they are a part of it. They work with me and I with them to compensate for it, just as my better leg compensates for my worse one. We are all for one, and without us, we are nowhere.

Disability discrimination: Autistic child not accepted at St. Rita School in Marin Co., California

Update to this post. Disability discrimination is an ugly thing.

After much effort, we finally got someone in the school administration to respond to our concerns. This administrator, the pastor of St. Rita School in Marin County, California, promised us a review of our son's application. A week later (today), we received a letter that said the following (red text is my annotation; all errors are sic):

Thank you for bringing to my attention the situation surrounding the application of your son (redacted) for admission to St. Rita School. 

At your request, during the past few days I have taken the opportunity to speak with some of the middle school teachers (only one of the current middle school teachers personally interacted with our son, and she spent an hour with me after his shadow day expressing in glowing terms how great he was and what a good fit he seemed to be) as well as the school principal (the now-retired principal, Carol Arritola, never met with us or our son or discussed our application with us, despite requests). Likewise, I have received the perspective of the school counselor (whom we have never met and whom our son has never met).  

Together, they have thoroughly (with no contact with our son's previous teachers, us, or our son, with the exception of one teacher) reviewed the application. They affirm that due to extremely limited resources, they are prohibited (??) from fulfilling the responsibility of adequately caring for your son (this phrasing has us baffled. Caring? We were asking them to educate our son). Therefore, they unanimously decline the application for all of the reasons previously stated (stated in the two-line letter that said the school doesn't have the resources our son needs--our son who needs no extra resources; if they don't have the resources to educate our son, they don't have the resources to educate any student) in the initial response letter from the principal. 

The principal (who never met with us or met our son) is the final arbiter in admission cases. 

While this response does not satisfy your desires (actually, at this point, it does), it nevertheless emerges from the serious and concerted (except that they did not speak with us or our son's former teachers or seek to contact them, even after our repeated invitations to do so) evaluation of the circumstances.  

Personally, it my hope and prayer that you will be able to locate a school that can adequately meet all the needs of your son (We have. Any school could meet our son's needs in the way that they mean. We consider this to be St. Rita's loss of a bright, capable, intellectually curious student). 

Sincerely,

(Rev.) Kenneth M. Weare, Ph.D. (in ethics, I believe)

Pastor

--------------------------------------

Here is our emailed response:

We are writing this email to apprise you that we are now planning to take public what we can only conclude is a case of disability discrimination, given the decision letter we have just received. I note here that the way the decision process is described, only one person in the group making the determination could have been someone who met with and interacted personally with our son, and that no one involved has gotten in touch with any of our son's previous teachers about his abilities. All of our statements that our son needs no supports and our provision of information supporting that and of teacher contact information for the same purposes have gone completely overlooked in favor of a blanket, unfactual determination that our son requires extra "resources" and "care." Only one member of the team that made this decision interacted personally with our son, and she spent an hour with me after his shadow day expressing nothing but positive reactions about it. Our son's ITBS scores are in line with or exceed those published for the school. He performs at or above grade level in all subject areas, without supports. For these reasons, we must infer that institutional discrimination is at work here.

We had anticipated with tremendous positivity our son's experience with what seemed like fantastic middle-school teachers at St. Rita's and the kinds of insights and learning experiences they would give him, even though only one of the current teachers met him personally. We had anticipated with pleasure the prospect of becoming part of what everyone kept telling us was a supportive school community. We trusted St. Rita School to do the right thing by our son, going so far as to entrust our son for a day to your school, to talk with him--with faith in the due diligence of your administration--about the decision to choose St. Rita School, only to find that not the slightest effort has been made on St. Rita School's part to review our son's application with any sort of good faith or intellectual honesty or even to contact teachers he had as recently as six months ago. We find this behavior to be unethical, at the least, and can only view it as discriminatory.

We are preparing to make public the fact that based on the rejection letters dated June 12, 2013, and July 17, 2013, we infer that St. Rita School discriminated against our son in his application process because of his autism and that the administration's handling of his application was not in line with the school's stated values. Every polite and professional attempt we have made in the interim to request a good-faith review of his application has been met by the school administration with either silence or a reluctance to address or confirm the information provided. For a review of the nature of our complaints, we have summarized them here: 

http://www.emilywillinghamphd.com/2013/07/application-denied-because-well-autism.html 

and will be posting an update, including the content of the second rejection letter and of this email.

This post has received thousands of direct views and thousands more shares. Because we have received no appropriate action on our request that an intellectually honest review be made of our son's application, we now feel compelled to let people know the name of the institution that we infer, based on the content of the decision letters, to have discriminated against our son because of his autism. We will be naming St. Rita School, and we will be pursuing other recourse to ensure that this kind of offhand, dismissive treatment does not happen to other autism families, here or elsewhere. 

We very much regret having ever applied to St. Rita's, which has become a deeply painful experience for us and our son's first real lesson in prima facie disability discrimination and because given the outcome here, we cannot in good conscience, on behalf of other autistic people, simply let it go as we would very much like to do. We remain baffled by the fact that no one in your administration could take even a moment to get in touch with any of our son's former teachers or us as part of this process and equally baffled at the administration's insistence despite evidence and our assertions to the contrary that our son would need specialized support or "care." We find this attitude shameful.

Yours etc.

Application denied because, well, autism, of course

[We have an update to this situation. It is not a positive outcome.]

I was hoping not to have to write this. I am sad, I am angry, and I do not know what to tell him. What do you tell your child—your 12-year-old—when someone who bloody well ought to know better, to do better, discriminates against him directly because of his disability? How do you explain to your child that as much as it must seem like it, it's not him, it's them?

Even worse, they were desperate. A private school on the verge of closure—in fact, going to be closed. A last-minute save from a donor has propped open their doors, and we walked through those doors to check out the school for ourselves. The attractions were numerous—the middle school staff have a high reputation, in spite of the school’s financial woes, the classes are small, and the overall atmosphere is one of scrappy fortitude rather than the usual air of entitlement so many private schools emit.

We visited, my husband and I. And then our son shadowed there for a full day. Unfortunately, for that shadow day, he ended up meeting only one of the middle school teachers he’d have had next year. Another was out, another is leaving, and yet another wasn’t teaching that grade level the day our son shadowed. Thus, in all, he met one member of the staff who’s still going to be working at the school next year.

The school remains short of enrollees. 

He did not meet and he did not interact with the school principal, however. And neither did we. Not because we didn’t offer. We did. Repeatedly. Email contacts went unanswered. My sole personal interaction with her consisted of one phone call in which she was so rude, I wondered if it was somehow personal. In that call, she mentioned, seemingly without context, that we needed to provide information about his IEP (individual education plan, a document associated with special needs supports). I knew at that moment that the antennae were up about our son, as my husband and I had mentioned his status during our tour with a school parent.

Our second contact was an obviously reluctant email response to our queries about the process of selection and timing of notification. Lest ye think we were like buzzing, obnoxious insects, we sent a total of two emails. The first was a simple query about the process and received no response. After radio silence for two weeks, we contacted the parent who toured us through the school to see if she had any insight. A week later, she left me a message, having spoken with the principal: “The principal is planning to meet with the resource teacher next week to talk about what your son’s needs might be and determine if the school can meet them.”

For those unaware of the lingo, “resource teacher” is the person who takes care of the extra supports children with learning or other disabilities need in school.

In response to this information, we sent our second email to the principal. In it, we clearly stated—as we had already done on the application materials—that our son requires no resource supports whatsoever. We also noted that any such meeting or discussion ought to involve us, at the least, particularly as neither the resource teacher nor the principal had had any contact with our son. 

Our application packet—and the $75 check accompanying it—included copious background materials about our boy. He attended public school full time through second grade, and we included all of his report cards along with teacher comments. By the end of second grade, he’d become aide free and was reading well above grade level. After that, he’d attended a hybrid public school, one of brick-and-mortar classes twice a week and the remainder using the k12.com curriculum, which most public online schools use. The hybrid school was not a special needs school, and we provided the names and contact information of the teachers he had there. Our son attended this school with zero supports and did extremely well. His teachers spoke very highly of him.

He’d also taken the official Iowa Test of Basic Skills and scored at or well above grade level across subjects. And since we’d moved to this new area, he’d done k12.com homeschool on his own, almost without input from me, working his way through the curriculum from pre-algebra to language arts to science to history to Spanish, acing chapter and unit tests and showing extraordinary self-motivation and autodidactic capacity. His intelligence testing shows him to have a very high cognitive capacity, and his performance in school bears that out.

Add to it that he’s funny, a child teachers have described as a “natural leader,” that he’s intellectually curious, a chess aficionado who’s placed first in chess tournaments, and an inveterate reader and fact collector. Add all that up, and you might think that he’s exactly what a school—particularly one that's so desperate for students that they’ve got a banner hanging over the main throughway in our region, begging for enrollees—would be delighted to have as a student.

But.

He is also autistic. 

And this principal who’d never met him, who’d never bothered to interact with us, who didn’t bother to contact previous teachers about him, determined, without any basis whatsoever, that he was not worthy of attending her school. As you can see from what I’ve outlined, his academic performance isn’t the reason. As his teacher evaluations and comments make clear, his social skills aren’t the reason, and we stated unequivocally that any social deficits he has are not of the sort that influence classroom management.

Yet, after our two emails, our thick and detailed application materials, our offers to clarify any question, we received only the following by US mail from this principal: 

“Thank you for your interest in Parochial School X. After seeing his performance and studying the information that you shared with us, it is our decision not to accept (your son) for the 7^th grade. (He) needs much more resource and teacher time than we have available due to our very limited number of teachers on our staff.”

That was it. That was all she had to say.

Two points. (1) There was no “performance” for them to see. I talked for about an hour with the two school teachers my son did interact with, whose classes he attended on his shadow day. They were nothing but positive about his visit. They mentioned absolutely nothing that raised a flag or a concern about whether or not our son would be a fit at the school. In fact, they themselves said that it seemed like a great fit. Oddly, the math teacher told me that some of their middle school students still don’t have a good grasp of math facts (basic addition, multiplication, etc.) and that she remediates that on a personal basis for each student. There’s clearly time for that, but not for our son who is doing math at least at grade level and has an excellent grasp of his math facts, thanks.

(2) We clearly stated to this principal several times that our son needs no supports whatsoever, and we provided contact information for teachers he’d had last fall and his last full-time public school teacher (whom we cc’d on the email) in case she wanted confirmation of that. Clearly, the principal never sought it. That last sentence in her letter to us is simply, baldly, untrue and without any evidence base. Nothing she did was in good faith.

In other words, from the minute she heard the word “autism” connected with our son, she seems to have decided, without further formalities, that this ‘autism’ thing wouldn’t be allowed in her school. I won’t get into how wrong it is in general to presume incompetence in an autistic applicant to a school; I’ll just say specifically that we provided ample evidence of the existence of sufficient competence, academically, emotionally, and socially, and she ignored it completely. 

And she made this decision with a “resource teacher,” yet neither of them had ever even interacted with our son, much less assessed his needs personally or otherwise evaluated him. We can only infer that their decision was made based solely on the presence of the word “autism.”

And that, my friends, is blatant and unacceptable disability discrimination.

Obviously, we didn’t simply accept her letter or the decision. The odd thing about this principal is that she’s retiring, and we kept factoring that into our decision to apply. I can’t say what role she played in the debacle that afflicted the school and led it to near closure, but I strongly suspect that her interactions with potential families might have left some people backing away slowly in bafflement. 

We immediately contacted the superintendent of schools in this area and a parent member of the school board for this school. Nary a word has arrived from the superintendent, from which I can only infer that the Archdiocese of Urban Area doesn’t give a rip about disability discrimination. 

We did, however, hear almost immediately from the board member. He promised to talk with the pastor who oversees the school and get back with us that week. That was two weeks ago. Last week, I requested an update by email and was told busy schedules prevented such a discussion. So here we are, two weeks out, approaching midsummer, a month from receipt of the rejection letter and two months from our application submission—and the deposit of our check for $75 for our troubles—and no resolution or even a good-faith effort at one.

The bottom line? This school rejected our academically capable, emotionally mature son, using a rationale that is demonstrably and clearly without basis. This school discriminated against our son because of his autism, plain and simple. This administrator feared autism. She immediately presumed incompetence and stuck with that assumption in the face of a pile of evidence to the contrary, and she never bothered to meet with him or us to discuss it in good faith. And that is not OK. Not just because of our son but on behalf of any autistic or otherwise disabled person.

For this reason, I will unmask the pseudonyms in this post and go wide if we do not learn that there has been a good-faith and appropriate effort to review our son’s application and evaluate it. This school and the Archdiocese of Urban Area need to be aware that this kind of blatant discrimination, this dismissiveness of a person with disabilities based on presuming incompetence is not acceptable and that a loud, not even-remotely-joyful noise will arise in the face of it. 

In the meantime, our academically able, emotionally mature son has just begun reading Catcher in the Rye, a rite of passage that I’ve anticipated right along with his participation in a rigorous middle school curriculum. One that it looks like I’ll provide him instead of the very capable and invested teachers at this school. I’m glad to be that body who’s around to catch him when the world simply opens its fingers and lets him slip through. But that leaves me back where I started: How do I tell him that these people, these people who are supposed to be of faith and belief and good works and understanding and compassion, let all of that fall to the ground in pieces simply because they, in what I hope was ignorance and not malice, feared the word “autism” and, by association, rejected him?

Shady California state park: light and shadow

Redwood sorrel

Bright afternoon with sculptures at Crissy Field

Click first image to view as slide show.

Sculpture at Crissy Field. More on this Mark Di Suvero exhibit here.

Hello.

Cairns at Crissy.

 

Catching a wave at Ft. Point.

Under the bridge.