My review of Saturday night’s Democratic Presidential debate is up at the Center for Disability Rights website:
November 17, 2015
There’s also a great piece on the same debate by Emily Munson:
November 17, 2015
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Tuesday, November 17, 2015
Monday, November 16, 2015
Weekly Reading List
Failing The Disabled (Project Overview)
Minneapolis Star-Tribune - November 8, 2015
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List, because it will take you to a unified series of five articles by the Minneapolis Star-Tribune, examining how outdated policies and practices in Minnesota affect the lives of disabled people there.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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Sunday, November 15, 2015
Weekly Wrap-Up
This week in Disability Thinking:
Monday November 9
Tuesday, November 10
Wednesday, November 11
Thursday, November 12
Friday, November 13
Saturday, November 14
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Saturday, November 14, 2015
Conflicted
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.
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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Friday, November 13, 2015
We Alone Are Not Enough
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!
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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Thursday, November 12, 2015
Throwback Thursday
One year ago in Disability Thinking: The Disability Inversions.
This is a little concept I remember thinking I would repeat a lot, but never did. Maybe I should brainstorm some more of these contradictions that are so familiar to disabled people.
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Wednesday, November 11, 2015
Debate Coverage
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.
October 30, 2015
November 11, 2015
I’ll be writing about the 2nd Democratic debate this coming Saturday, November 14.
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Tuesday, November 10, 2015
The Social Life Of The Disabled
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.
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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Monday, November 9, 2015
Weekly Reading List
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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Sunday, November 8, 2015
Weekly Wrap-Up
This week in Disability Thinking:
First, a bit further back, I went on a bit of a vacation …
Wednesday, October 28
And then …
Wednesday, November 4
Thursday, November 5
Friday, November 6
Friday, November 6, 2015
Disability Blogger Link-Up
Share a disability-related blog post or article here, any time between Friday, November 6 and Midnight Sunday, November 8, 2015. And of course, read what others have posted.
To make the links easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the address of the item you are posting. So:
Name = Title of your article.
Your URL = Link to your article.
Then click the "Enter" button. That's it!
Go ahead and post, read, and enjoy! This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, November 20, 2015.
Thursday, November 5, 2015
Odo and The Scientist
I re-watched a TV episode last week that felt a lot like it was about disability, even though it wasn't about disability at all.
The show was Season 2, Episode 12 of the 1990s show Star Trek: Deep Space Nine, "The Alternate." The episode's main story concerns Odo, a regular character on the sci-fi show with highly unusual origins and biology. Odo is a Shapeshifter. He is, at this point in the series, assumed to be one-of-a-kind. His natural resting state is liquid, and, with practice, he can become anything that he wants, anything from an animal to a piece of furniture. Most of the time Odo functions as an adult humanoid, and is the Deep Space Nine station's head of security or "Constable."
In this episode, Odo reunites with Dr. Mora Pol, the Bajoran scientist who years prior had been in charge of studying him and helping him fit in with "normal" society. In previous episodes, Odo had hinted that being a research subject after being "discovered" was a mixed experience at best. He learned a lot about his origins and abilities, but quickly grew to resent being gawked at and essentially imprisoned in a lab, existing mainly to satisfy the well-meaning but rather insensitive scientists' professional curiosity. Dr. Mora claims to have loved and cared for Odo, but it’s not hard to detect layers of exploitation and condescension in his manner.
This theme is underscored by the tension between Odo and Mora when Mora visits the station. Odo behaves correctly but quite coldly towards Dr. Mora. Mora outwardly praises Odo's accomplishments like a proud parent or former teacher, yet all of his compliments come barbed with a vague disapproval, a sense that Odo has made poor decisions. He shouldn't have left the lab. He did a disservice to himself and the scientists by abandoning their research. And, most disturbing of all, Mora implies that Odo's acceptance by the other station personnel is superficial ... that as a Shapeshifter he is still someone apart, and in that sense really "belongs" with people like Mora himself, who really appreciate Odo and can help nurture his journey of self-discovery ... back in the lab, of course.
The relationship between Mora and Odo remind me of so many aspects of being an adult with disabilities, having grown up with disabilities, and the intimate but contentious relationships many of us have with doctors, therapists, teachers, and even our parents. People are rarely entirely selfless, or completely self-serving. The problem is that, like Dr. Mora, people in a position to help and care for disabled children and youth often have trouble acknowledging how personally invested they can be in our lives and decisions. Plus, their benevolence often comes across as paternalism, and a lack of full recognition of our agency, our personhood. On the other hand, we, like Odo, often find it hard to recover from old wounds, and have empathy for people who meant well, but made mistakes like all humans do ... and Bajorans for that matter. My sympathies are with Odo, but I do feel he was a bit too hard on Mora. Odo does want to learn more about himself and his origins. It’s just that he feels that the best way to do this is to live a normal and useful life, with all it’s variety and even danger. Mora thinks Odo should focus exclusively on himself, and essentially hide away in a safe place from a hostile world.
Even if you're not into science fiction shows, if you grew up with a disability or have spent part of your life treating, teaching, or raising a disabled child, watch this episode. It says more about the disability experience than most shows that are explicitly about disability.
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Wednesday, November 4, 2015
Invalid Corps Kickstarter
Hello, I'm back from my blogging break.
I have never done this before on my blog, and I probably won't do it often, but I strongly urge readers to support a Kickstarter fund raising campaign for a documentary film about the Civil War Invalid Corps and the Battle of Fort Stevens. This filmmaker is Day Al-Mohammed, who is well known in the disability culture and activist community. I know her through the disability blogging and social media community. Day works in Washington, DC as a policy analyst, so this project seems like a personal passion for her.
I have never done this before on my blog, and I probably won't do it often, but I strongly urge readers to support a Kickstarter fund raising campaign for a documentary film about the Civil War Invalid Corps and the Battle of Fort Stevens. This filmmaker is Day Al-Mohammed, who is well known in the disability culture and activist community. I know her through the disability blogging and social media community. Day works in Washington, DC as a policy analyst, so this project seems like a personal passion for her.
The Invalid Corps was a section of the Union Army in the Civil War, manned by wounded soldiers. These are soldiers who chose to keep serving and fighting, even though they had permanent disabilities like amputations, blindness, and what we would today call Post Traumatic Stress Disorder.
Let me quote Day on why this subject and project are important to her:
This project pushes all of my buttons, in a good way. I was a history major in college, and I am still a history buff today. In fact, the Civil War is one of my favorite subjects. And like Day, I am disabled, so this project has personal, crossover appeal for me.
"Uncovering these heroes is a personal passion of mine. As a woman with a disability, and as a volunteer with the US Coast Guard Auxiliary, I feel a kinship with their need to serve and their desire to do what they could. After more than 15 years working on disability policy issues and working with youth with disabilities, I have seen how important it is to see people like yourself - models and mentors. Disability doesn't just exist today, but existed in the past."
"This is a lost history of men who sacrificed for their country and then chose to remain on duty; of men who chose to continue to serve with a disability. It is a story that should be told, not just from a historical standpoint but to understand and recognize the efforts of men and women in uniform today."
This project pushes all of my buttons, in a good way. I was a history major in college, and I am still a history buff today. In fact, the Civil War is one of my favorite subjects. And like Day, I am disabled, so this project has personal, crossover appeal for me.
I am making a pledge today. I hope lots of readers will, too, and spread the word, especially among your friends with disabilities and their families. As you probably know, you don't have to pledge a lot to make a difference. But do it now, because there are only 14 days left to go in the campaign, and the way Kickstarter works, they only get the money if they reach their $7,776 goal.
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