Thoughts about that Growth-Attenuation Therapy article

Jiggery-pokery's Soup of the Day

Big discussions going on with my friends on Twitter and Facebook about this article:

Should Parents of Children with Severe Disabilities Be Allowed to Stop Their Growth?

I’m just gonna go ahead and drop myself in the NO column right now. No, you shouldn’t screw with your child’s body for what is essentially the sake of your convenience.* That is putting the child into the bin labeled BURDEN. DIFFICULTY. PROBLEM. The kid is different and has different needs, yes. The kid is not a doll. The kid is not A Thing that you can or should adjust as you please, because it’s easier for you. I don’t care if you’re the primary caregiver and you’re worried about the future. What we need to do is change and expand the system of support for kids like this, not smash the kid up so they’ll better fit into the current underfunded and underchampioned system —…

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The Humble Shopping Cart

When I went in to donate blood this week, the woman helping me check in started talking with me about her arthritis, after I told her about mine.  She said that she could barely make it through the grocery store the other day, because it was so bad.  She relies on the shopping cart to lean on, but she’s too stubborn to use the scooter.  “I’ve thought about using the kind of walker with the seat on it,” she said, “but then how do you shop?” Meaning how do you push the grocery cart?  When I suggested grocery delivery, it was clear she has also considered that, but didn’t like that you had to buy a hundred dollars worth of groceries to get the free delivery from Hy-Vee.  

Grocery shopping is hard for me too.  The lights are bright and I have to navigate around other shoppers and make a lot of decisions.  Groceries are heavy, and the cart helps a lot.  I suspect a lot of us with balance or walking issues don’t notice how much we lean on them, using the cart as stealth piece of assistive technology.

When this person told me she’s too stubborn to use a scooter; it’s something I’ve heard before and recognize: that’s ableism limiting your choices.  There is a lot of stigma against using a scooter.  Using a shopping cart is normal; it makes you invisible.  Using a scooter, wheelchair, or cane makes you hyper-visible.  

In The History of the Shopping Cart  by Gwen Sharp, I learned that it wasn’t always so: carts were designed and implemented in part to get people to buy more items, and reduce the number of clerks in stores.  An unintentional side effect is that they make walking easier for some of us.

Shopping carts where I live are ubiquitous, and easy to liberate from parking lots.  Because of their ubiquity, shopping carts are also used by some homeless people as a way to haul and store their things.  The carts are durable, weather-proof, and capacious.    

My local grocery is located in a poorer section of town; a lot of people walk or take the bus.  A fair number of people walk the cart back to their houses, at least when the weather is cooperative.  I overheard the young people working at the store talking one day about rounding up lost carts.  A couple of employees were to drive around the neighborhood with a pick-up truck and look for stray carts, load them up and take them back to the store.  I envisioned the carts like little pack mules, coming home to the barn.  

The newer Target in town, located in a neighborhood with a lot more services and a Whole Foods, has shopping carts with anti-theft devices installed.  Those mules never get to have adventures.


Mia Mingus and disability justice

I’m going to write about seeing Mia Mingus! She is so awesome, has so many great ideas, such great open energy. By culture and personality, I am somewhat conflict averse, and yet also drawn to things that involve cognitive dissonance, which is a problem. Mia has this way of being hungry for the conflict, of digging into with enthusiasm. Like, YES, let’s TALK about that uncomfortable thing! And it is just honestly such a relief.

I went to a small group session where we talked about a couple of her essays from her website:
1. Changing the Framework: Disability justice

2.  Acccess Intimacy: the missing link

3.  Moving Toward the Ugly: A politic beyond desirability

The third one really blew my mind. LOVED it. Here is another way of resisting respectability politics: embrace magnificence instead of prettiness. Be memorable, own the way you look and are.

We talked a bit about being uncomfortable with “body positivity”, and the intersection of disability and fat politics. This is an exciting area to me and I’d like to see more people talking about it. These are both highly stigmatized categories and activists from the two groups seem to want to avoid each other due to this stigma, even though the intersection between the two groups is pretty readily apparent. Think of fat activists emphasizing “health at any size” and talking about how they are healthy and active at their weight–centering health, which is not exactly friendly to those of us who are not in good health. Meds can cause weight gain or loss; weight (high or low) itself can be associated with certain illnesses; etc. Anyways, Dave Hingsburger writes about this a bit (mostly the stigma of being a fat wheelchair user). And I always, always rec The Fat Nutritionist, especially this post: The Obligation to be healthy at every size  (You have no obligation to be healthy).

Mia Mingus talked about how when we are so committed to the social model of disability (or any kind of social model), we can run up against the wall of our bodies. And so we need to talk about embodiment. I think part of loving and caring for our bodies is acknowledging that being embodied can totally suck sometimes. It is ok to feel negative.

During her key note, Mia Mingus talked about transformative justice and her work using it to address child sexual abuse (often adult survivors of same). She works with the Bay Area Transformative Justice Collective. One of the themes of her talk was building alternatives to our state institutions, because how can we depend on the state to address violence when the state uses violence and oppression against us?

This event was part of the Gender and Women’s Studies 40th anniversary event on campus. I went to some of the events the next day, but they were… much more academic and kind of not my thing.

An Ableist Microaggression: “It’s nice to see you walking!”

Last week my friend Jesse and I went out shopping to a store we like where we know a number of the staff members. Jesse took her walker rather than wheelchair, principally because it is easier for me to drive and load the walker in my car, than it is to load the wheelchair into the minivan.

One thing that happened as we were leaving the store is the staff person said to Jesse, “It’s nice to see you up,” as in upright, not using the wheelchair.

This is a microaggression. (link to Wikipedia).

First, the assumption that an acquaintance or even stranger has the right to comment on your assistive tech, on your presumed health status, on your body– that you would even want to know what some stranger thinks. But people do this all the time and they think it’s a good thing. They think it’s welcome praise, that is a nice fuzzy compliment.

They think it’s praise because they value being upright and walking over using a wheelchair, even though it is a value-neutral distinction. It may be better for you and your self-care to use to the wheelchair, but hardly anyone will praise you for that. You should use what will work best for you, cause you the least pain, not what society values.

They think it’s praise because they think it’s an improvement in health status. This demonstrates an incomplete and failed knowledge of chronic illness, mobility impairments, and assistive tech. Many people who use assistive tech use that tech occasionally or periodically, and again, it is value-neutral to do so. Diseases get worse and they get incompletely better. It happens. And sometimes you use the tech for more practical reasons that have nothing to do with your disease/impairments, but rather to do with the barriers that exist in society. Maybe walkers or walking sticks are easier in the airport than your wheelchair is, for example, even though the wheelchair is more comfortable. Maybe you don’t want to risk the airport damaging or losing your expensive and valuable wheelchair. Maybe you’d use your wheelchair all the time if society didn’t suck so much.

WisCon Guests of Honor: Race and Gender over time

In the last post, I talk about the basics what Guests of Honor are at WisCon and how they get selected.  This year I sat on a panel called “Where is WisCon going?”  One thing I could have said (but forgot to), is that I nominate and vote for women of color for the Guest of Honor slot.  I can’t be the only one on the planning committee who does so, but it seems like this is a recent trend.  I got curious.  When did this trend start?  What does it look like?

I created a spreadsheet using Google drive, which you can view here:

WisCon Guest of Honor stats

Methods (or, how I filled in the spreadsheet)

I filled in the gender and race of each guest of honor as best I could, up through next year’s convention.  I did a lot of guessing.  If you see errors, please let me know and I will fix them.  The best way to gather such data is to ask people individually (called self-report); instead I searched Wikipedia and personal websites.

Gender data: I don’t know if any of these people identify as gender queer, non-binary, trans, or another category.  Some of the early guests of honor do not have web sites of their own.

Race data:  This was frustrating to try and figure out, because white is an unmarked state.  We white people don’t point out the fact that we are white, we generally don’t write or talk about it, except in rare instances.  We aren’t questioned about it in interviews.  I googled “Is China Mieville white” and “What race is China Mieville?” and the only thing that came up in results was information on alien races.   This leads me to think that he is white, since no one has thought to remark upon his race.  Looking at photos is only marginally helpful: some people of color are light skinned, etc.  I included Jewish ethnicity for some people, because a couple of people listed talk openly and frequently about being Jewish, which moves them away from the “unmarked state”.

So, I did a lot of assuming and guessing, which has almost certainly led me to make an ass out of myself in my quest to make a point.  Please point out errors in the file if you see them, and I will fix post-haste.

It was easier for me to fill in the more recent years of data because I started going to WisCon in 2007.  I began to follow the work of some of the authors, meet authors and their friends, and generally become part of the community.  So I gained insider knowledge.  I lack this knowledge for the earlier years of WisCon.

After a couple of hours of filling out my chart, I compiled some percentages.

Results (or, what the data show)

For all 40 years, the guests of honor at WisCon have been mostly white women.  Women as a percentage of the total never drops below 70% (column J).  Through 2009, the percentage of white guests of honor (with the caveat that I am assuming whiteness for a number of people), stays above 90% (column N).  To me this says, “WisCon is for white women.”

From 1977 to 2009, there were only three black guests of honor: Octavia Butler, Samuel Delaney, and Nalo Hopkinson.  That is less than one every ten years.  Wikipedia defines tokenism as “the policy and practice of making a perfunctory gesture towards the inclusion of members of minority groups.”

In 2010 the trend changes dramatically.  From 2010 to 2016, six black women are invited as new guests of honor (Nisi Shawl, Alaya Dawn Johnson, N.K. Jemisin, Andrea Hairston, Nnedi Okorafor, Sofia Samatar); Nalo Hopkinson is invited back as a returning guest of honor for 2016; and 2 women of Asian descent are guests of honor (Mary Ann Mohanraj and Hiromi Goto).  From 2010 on, the percentage of people of color– specifically women of color– as guest of honor stays above 50%.

What changed in 2010?

The following is speculation, but in 2009 a long internet fight called Race Fail occurred.  The arguments served as a consciousness-raising event for many fans, including myself.  I believe that many people on the concom saw one way they could fight racism in their own small corner of the SF/F community: by inviting women of color to be guests of honor at WisCon.

It is striking that it took over 30 years for this shift to happen.  I am glad it has happened, and I would like to see the trend continue. I would like to see us honor Latin@s, indigenous writers, Arab writers, and others.  If you have an idea for who you would like to see be a guest of honor at WisCon 41 and beyond, send your suggestion to gohnoms at wiscon dot info.

Guests of Honor at WisCon: An introduction

What are Guests of Honor?

Guests of honor (GoHs) are one or more people invited to Wiscon, who give a keynote speech, give readings, and, if they are interested, sit on panels during the convention. Their membership fee, hotel costs, and travel are paid for, and they receive a small honorarium.  They typically receive a free membership for life thereafter (keep in mind that memberships are relatively inexpensive, around 50 dollars for the whole convention).  The speeches that GoHs give can be inspiring and informative, and may appear on websites afterward.  Some con-goers will make a point of buying and reading books by WisCon GoHs through the year, and getting those books signed at the convention.

How are Guests of Honor chosen?

Anyone (literally) can nominate someone for guest of honor status by emailing gohnoms at wiscon dot info.  It is best to include a few sentences about why you think they would make a good GoH or why you think they are awesome.  The members of the planning committee (concom) vote on who they would like to be GoH, which is one of the perks of serving on the committee.  In recent years, a group of people vets the finalists to see if they meet WisCon’s statement of principles, if they require speaker fees, etc.

Who has been Guest of Honor in the past?

You can see a list at WisCon’s website and at Wikipedia (links below).  As WisCon is a primarily literary convention, GoHs have usually been writers and editors of SF/F, but have also included fan writers and zine publishers, illustrators, and influential community members.

WisCon’s history

WisCon page at Wikipedia

In the next post I’ll examine trends regarding race and gender over time in relation to WisCon’s guests of honor.