Return Of The "Pool Noodle?"

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Photo of a child's feet in sneakers standing on a one-step platform with a while cane for the blind out in front

Just short of a year ago, we read a similar story, about an American school district taking away a young blind boy's white cane because they said he used it to threaten harm to someone. They gave him a semi-flexible foam "pool noodle" instead, and shortly afterwards, gave the cane back to him and apologized for confiscating it. Compared to this British girl, that case seemed like more of a real dilemma. One way or another, safety was at least a bit of a reasonable factor. The disability rights consensus was 1. Don't confiscate a disabled person's main tool for adaptation, and 2. Do make sure that young disabled children are trained in how to use these tools safely and appropriately.

The same formula probably should apply for Lily-Grace, or any kid just starting to use a white cane, crutches, or a wheelchair. Nobody is saying she's reckless with the cane, but she's seven years old, and there's a method to using a while cane. You don't automatically know what to do with a cane just because your blind and they had you one.

Both situations underscore how small disability-related problems get out of hand when one or two people with some sort of veto authority get antsy about anything unfamiliar going on in their professional territories. It gets worse when they happen to have a personal preoccupation with certain aspects of disability life. It may sound strange, but there are people who have very firm opinions about the use and abuse of white canes, crutches, ramps and elevators, and wheelchairs ... not to mention service animals. And they absolutely do not see it as ableism in its purest, simplest form. I suspect the officials responsible for both of these crises felt that they were the only ones with the good sense to raise concerns and put the brakes on well-meaning but carelessly permissive policies. Couple that with administrative procedures that handle contentious issues too slowly and deliberately, and you get, I think, maybe 75% of the news stories about ableism that make it into the mainstream press.

It's so galling when it is happening, that it's easy to froget that most of these situations are resolved more or less properly in the end. Blind kids get to use their white canes in school. Customers can, usually, enter coffee shops with service animals without it making the local news. Most people don't regard ramps and elevators as expensive luxuries, at least once they are fully installed. But in the meantime, massive time is wasted futzing around with pointless deliberations when the eventual outcome is rarely ever in real doubt. This is where a bit of autocracy can actually be a good thing. We need more school principals and headmasters who are willing to say, "I appreciate your concern, but unless there's an actual problem, blind students will be able to use white canes ... or whatever they need ... in our school. That's the way it's going to be."

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Weekly Reading List

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Picture of a multicolored stack of books
Failing The Disabled (Project Overview)
Minneapolis Star-Tribune - November 8, 2015
There's only one link on this week's Weekly Reading List, because it will take you to a unified series of five articles by the Minneapolis Star-Tribune, examining how outdated policies and practices in Minnesota affect the lives of disabled people there. It's a brilliant series, and we need to see more journalism like this all over the country. It is heart-rending, but not in the usual way for disability articles where you feel pity for the disabled people. Instead, you feel angry at the backwards thinking, bureaucratic laziness, and abject, ignorant fear that keeps these policies going. The series is a remarkable blend of no-nonsese investigative journalism and deeply emotional human interest, a combination rarely seen in disability stories. It IS possible to write emotionally resonant stories about disabled without lapsing into "inspiration porn."

I am massively impressed.

I would only add one note. The abuses and stupidities described in these three articles are products of bad systems, not just bad people. Please don’t think that group homes, sheltered workshops, and the like can be just fine, as long as you find just the right people to run them. Good people go in with great intentions, but the systems overrule them. They are flawed, and it’s time to abandon them, not keep trying to make them a little nicer.

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Conflicted

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Two one-way signs on one post, pointing different directions
What message do we as disabled people want to send about our capabilities and resilience?

We can do anything. Just give us a fair shot. We are happy and independent. We have our acts together. No problem. Nothing to see here!

or

Having a disability is really hard. Disabilities are trying and painful. Social stigma, ableism, and real-life barriers are, if anything, even worse. Many of us have suffered trauma, and that needs to be understood and respected, too.

These things aren't contradictory of course. That's really the key to living well with disabilities. But from the outside ... and sometimes from the inside ... they sometimes seem like contradictions.

I feel like we are at a stage where the disability community spent several decades in which our general PR strategy was "toughing it out." Now, we are sort of redressing that by emphasizing "self care" and reminding the rest of the world that while we are fundamentally okay as people, disability isn't nothing, and we have real barriers to deal with.

This is the first of what will probably be a series of short blog posts on things disabled people don't have completely figured out.

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We Alone Are Not Enough

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Twitter logo, white bird silhouette against a light blue background
I caught a glimpse yesterday of something going on with well-known disability activist and scholar Mia Mingus, something about having to do with air travel. I didn’t dig into it though until this afternoon.

It takes a lot really of nasty ableism to truly piss me off. This is partly because I’ve had disabilities all of my life, partly because of 20+ years in the Independent Living Movement, and partly from my more recent blogging on the subject.

It takes something really outrageous to shock me, and that sort of blunts my outrage.

But this kind of thing cuts through all the world-weary cynicism. It’s so stupid, so humiliating, and so unnecessary. Read all about what happened in this collection of Tweets, assembled by Alice Wong of the Disability Visibility Project. I’ll have a bit more to say at the bottom.

There’s a lot in these Tweets that goes beyond disability issues into even more fundamental issues of racism and state power. I feel a little less qualified to comment on those aspects, thought they are definitely there, and the incident itself carries all of the key hallmarks of ableism.

First there's the institutionalized stupidity of a system that probably has safeguards to prevent this kind of discriminatory targeting, but either can’t or won’t actually implement them. I suspect the individuals involved have far too much power and discretion to act on their personal views of disability, (or whatever else bugs them in the moment), and not enough oversight.

Second, there is the fact that people who must meet far more disabled people than most people do in their jobs still think a gel seat cushion in a wheelchair is some kind of weird, mysterious, unknown thing. This is an airport in Oakland, California, associated with one of the most disability-aware metropolitan areas in the United States. You’d think they would have met travelers in wheelchairs with gel cushions before. They are pretty standard components of wheelchairs for people who use them long-term.

Third, I really think a big part of this is what Mia mentioned about experiencing much less hassle when she travels with others. People in wheelchairs especially, are informally required to have someone else there to sort of “vouch” for them, in any situation where authorities are involved or observing. This is a fundamental part of ableism … we alone are not sufficient. We can be admirable, inspiring, plucky, resourceful … but someone’s always wondering where our keeper is, you know?

Now, I have never experienced anything like this, and I travel almost exclusively alone. However, I only fly about once a year, maybe. And for the last ten years or so, I have packed my ventilator … a medium-sized box of of indeterminate purpose with electronics involved … in a suitcase. I check it as luggage. I usually find one of those TSA slips in the case that says someone has opened it and snooped around, but it's never caused a problem. But a gel cushion seems pretty harmless to me, too. Why did they pick on that?

And why didn’t they just accept Mia’s explanation? Again, we go back to the fundamental issue … we alone are not enough.

Who is with you? Is there someone here who can help you? If you're this dependent on your equipment, wouldn't it be smarter to travel with someone? It's not our job to solve your problems you know!

I hope the TSA is forced to give a public explanation for how they treated Mia and what they did to her property. I hope they reimbursed her very quickly for her substantial financial loss. An unequivocal directive that wheelchair cushions are fine would be good, too. And, sad to say, a firing or two may be in order. Institutional ableism aside, sometimes it really does come down to an individual with too much power, who just won't budge in their thinking.

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Debate Coverage

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I have started writing blog posts on the 2016 Elections for the website of the Center for Disability Rights in Rochester, New York. Go check out my first two, about the 3rd and 4th Republican candidate debates.

Red white and blue button with three white stars and ELECTION 2016
October 30, 2015

November 11, 2015

I’ll be writing about the 2nd Democratic debate this coming Saturday, November 14.

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The Social Life Of The Disabled

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Large smiley-face emoji holding a sign with Hi! in bold black letters
I'm a little late in commenting on the Just Say Hi! campaign that got a lot of disabled peoples' blood boiling a couple of weeks ago. I've been thinking about it a lot, though. I have an idea about what the Cerebral Palsy Foundation is trying to do with this effort, ham-fisted and condescending though it may be, and at least one of the reasons why it rubbed so many disabled people the wrong way.

All of the negative social feedback we experience as disabled people can be boiled down to three main categories, or, if you prefer, flavors of interpersonal ableism:

1. Hostility

Undisguised disgust, explosive impatience, derogatory language, bullying.

2. Invisibility

Turning away, avoiding interaction, talking about you as if you aren't there, awkwardness.

3. Intrusion

Forced cheerfulness, condescension, strangers over-sharing and asking personal questions.

Each of us experiences a mix of these things, at different intensities and frequencies. But I think every disabled person experiences one of these more than the others. The kind of social ableism they encounter the most naturally influences their view of ableism itself.

The main problem with "Just Say Hi!" is that it only addresses “Invisibility.” It’s sole aim is to encourage non-disabled people to approach disabled people they see in everyday life and engage with them, starting with just saying “Hi!”. The implication is that the main problem disabled people face in social interactions is being ignored. Also, that the reason they are ignored is that non-disabled people are nervous about talking to disabled people.

There's nothing wrong with that, as far as it goes. It’s definitely a problem for disabled people, and for some disabled people, being ignored and having no friends is a huge and very painful problem. But choosing to address just "Invisibility" implies that it's the only social barrier we face.

Unfortunately the solution, encouraging non-disabled people to approach random people with disabilities and "Say Hi!”, actually ends up making the “Intrusiveness” problem worse. Most of the disabled people who criticized the project on social media said that the last thing they want is for strangers to come up to them and try to be instant friends, or ask them personal, intrusive questions. That’s the way I feel. When I go into my local Starbucks to write and drink my favorite tea, I enjoy exchanging pleasantries with the baristas. I like it when I run into people I know and we have a little chat. I do not want other customers I don’t know to look at me sitting there alone with my visible disabilities and decide to talk to me as their good deed for the day. On the rare occasions they do so, it’s excruciating. Among other things, it makes me responsible for being nice back to them, so I don’t come off as a prickly asshole. So a strategy meant to make me feel at ease has the opposite effect. Instead of feeling relaxed and socially included, I feel put-upon, on the spot.

There’s another factor here as well. It feels like this initiative is influenced by parents of kids with CP. A lot of the positive comments were from parents who wrote about how painful it is for them to see their kids ostracized, with no friends, no socialization. Like I said, this is absolutely a real problem, especially for kids and youth with disabilities. Some disabled adults feel this way, too, but my sense is that it’s much less of a problem for adults than it is for children and youth. So this seems like a campaign designed with disabled kids in mind, and little recognition that disabled adults might have different priorities and preferences.

By the way? How about encouraging disabled people to say “Hi!” if they want to interact with people and make friends? I know from experience … both good and bad … that the quality of my social life is at least as much on me as it is on others. I don’t mean to blame the victim, but as the saying goes, there are two sides to a conversation.

Addendum:

A couple of additional thoughts ... First, I'm not sure there is any sort of social media / awareness campaign that can adequately address the "Hostility" problem, so I don't really blame the Foundation for not dealing with it. It should be dealt with, but with a much deeper, multi-pronged approach. Second, I thought about whether it's important that the Foundation is for people with Cerebral Palsy. On balance, I would say this doesn't really make much of a difference. The issue I think they're trying to cope with is how people with very visible, perhaps audible disabilities are treated, and CP tends to be very noticeable. But so do many if not most other disabilities. So there's that.

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Weekly Reading List

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Picture of a stack of multicolored books
Caroline Mortimer, The Independent - November 8, 2015

The statistical aspect of this reminds me a bit of the panic over “skyrocketing” rates of autism, which are mostly due to better identification of autism that has always been prevalent. It’s unlikely that the actual rate of occurrence of hate crime has gone up 41 percent in one year. More likely that in the last year, reporting has gone up and maybe followup and record-keeping have improved. In a way, that’s good news. That said, it’s still a terrible problem, and hate crime against disabled people may, in fact, be on the rise. It’s hard to tell. I also wish the article had mentioned something about why people commit hate crimes against disabled people. I sometimes get the feeling that people writing about this leave out the content of peoples’ prejudices, because talking about their beliefs seems to endorse them. How can there be a “because” for something so terrible? I think there’s always a “because.” It’s probably a bullshit “because,” but people rarely do things for literally no reason. And knowing what people are thinking can help us fight and counter their thinking. Otherwise, we’re just condemning and groping in the dark for answers.

Karin Willison, Free Wheelin’ Travel Blog - September 4, 2015

Re: my comments above … I really appreciate Karin mentioning the reasons her school bullies gave for why they did what they did:

“ … the girls tried to blame me for being bullied. They said it was my fault because I looked weird and did things they thought were strange.”

Again, it’s a piss-poor reason, but it tells us something. It suggests, to me anyway, that some kids really can’t handle any kind of difference, and will latch onto anything they can to differentiate themselves and establish and ironclad pecking order. I’m know sure how that understanding helps, but it certainly makes it less personal, at least in retrospect. Maybe it also points to the reason why schools should spend more time getting kids to be comfortable with difference. That’s important, because there are lots of people who regard this effort as “political correctness” or “indoctrination.” I think it’s important to connect the dots between bullying and prejudice. It’s not just a kid thing, as Karin also points out in her discussion of more recent bullying she experienced online. On a side note, I wonder if bullying in online discussion groups is an indicator of a different problem … people who literally don’t know any other way to make an argument than to hurl insults?

Stephanie Woodward, Syracuse.com - November 6, 2015

This is my new favorite editorial against assisted suicide. It’s hard-hitting, but also humane. It doesn’t lean too heavily on a “slippery slope” argument. We are going to have to be good at explaining ourselves on this issue. Being in favor of assisted suicide is at this point a full-fledged part of the progressive policy agenda. I think that’s a big mistake, but I can understand why progressives tend to support it. It’s not that we have an opposite view, we have sort of a side view, a change the subject view. Progressive see it as a personal choice issue. We see it as an existential issue and a priorities issue … because there’s more intense support for people who want to die than there is for services that help people want to live. For the moment, I think the best we can do is keep raising the disability angle. People tend to forget the disability angle on just about everything.

Erica Curless, The Spokesman-Review - November 8, 2015

I posted this in the comment section of this article:

“This article raises some important issues for people to think about. However, one option isn't even mentioned ... gradually transitioning to a situation where Blaine is assisted by paid in-home staff. Since his father is, thankfully, relatively healthy, there is at least some time to do this. When he passes away, Blaine could then have 2 or 3 familiar staff who could see to his needs as his father does now. It would also allow his father to care for himself and get a bit of rest. The way it's presented in the article, the only choice for families of significantly disabled sons or daughters is a) provide total care, solo, forever, or b) put them in a nursing home. That's a false choice, and it would have been helpful if the article had informed readers that there are other options and models for long term, care.”

Tom Socca, Gawker - December 5, 2013

This article isn’t related in any direct way to disability issues. I re-read it last week because I made a mental connection between what the article describes as “smarm” and something I’ve been thinking a lot about, “Inspiration Porn.” Ultimately, I don’t think the two concepts match up very well. There’s a bit of an overlap, but not as significant as I imagined it might be. However, I do think Socca’s observations are very interesting, and may include important ideas to consider for Disability Culture. How much of the opposition we fight uses Smarm, and do we use Smarm too?

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