Tuesday, May 19, 2015

“Inspiration” Without The “Porn"

Photo taken from behind a person filming a scene with a smart-phone.
There was quite a lot of discussion last week among disability bloggers and Facebookers about a viral video showing a restaurant employee “feeding” a physically disabled customer.

While newspapers and TV stations all over North America reported it as an unambiguous “good news” story, most of the comments from disabled people ranged from head-shaking to outrage. On one level, it was a simple reaction to standard “Inspiration Porn.” Inspiration Porn is that thing where someone writes a news story or posts an “inspiring” photo or video involving a disabled person, something clearly meant to make us go, “Awwww,” and appreciate bravery, persistence, or kindness, preferably without asking awkward questions about context.

On another level, this particular video raised very specific questions about privacy and objectification. Who is this disabled woman? What is her name? Did she know she was being filmed? If she had known, would she have been okay with the video being publicly posted and then going viral? Was she happy with how the employee was helping her, or did she have some other solution in mind? And, who is the customer filming the scene? Did he or she think for a moment about how the disabled woman might feel? Did they introduce themselves to her and ask her permission to film her and present this bit of her life in order to “inspire” millions of strangers? Is it possible a severely disabled person might have mixed feelings about being looked at in this way?

Of course, these questions provoked their own perplexed, angry responses from people who apparently felt cranky disability activists were raining on a parade they had been enjoying immensely. Why do people have to put a sinister spin on a rare “good news” story? Why are disabled people so angry about stuff like this? Aren’t they always asking retail staff to help them? The world is such a nasty place, and this is a nice story. Lighten up!

I have been thinking for awhile that we need to come up with a way to allow some cultural space for people who really love and crave “inspiration”, while keeping it from becoming “Inspiration Porn” that insults disabled people and sends ableist messages about disability.

Maybe we should make a checklist for would-be filmers, meme-makers, and reporters thinking about using disabled people as their subjects:

- Is the disabled person a willing participant in the story, video, or photo?

- Does the disabled person have a voice in the finished product … something relevant to say, in their own words?

- Is the disabled person credited by name? Does the piece include include any contact and background information about the disabled person, if they want it included?

- Does the finished product include enough accurate information on the situation and disability to put the scene or incident in context?

- Who is the “hero” of the scene? Are they doing something truly remarkable, or interesting only compared to very low, possibly insulting expectations?

- If you were the disabled person in the finished product, how would you feel about it?

- Consider how the disabled person might actually feel, not how you think they should feel.

If you look at this list and think, “Who’s going to be comfortable with all that?”, then that should tell you something about Inspiration Porn. If what you’re doing can’t pass these simple tests, then maybe the world doesn’t need your inspiring creation right now.

On the other hand, I think this list might be reasonable enough to allow a few disability-related photo memes, videos, and news stories of the “inspirational” variety to satisfy peoples’ apparent craving for such things. I think it’s worth noting, too, that some disabled people feel good about inspiring others, and actually spend time and creativity doing so through videos, photo memes, blog posts, and the like.

The key difference is that those are messages from disabled people, in which disabled people are active participants with human voices and points of view, not nameless objects on which others project their feelings.

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Monday, May 18, 2015

Disability.TV Ep. 23 - Downton Abbey

Disability.TV logo on left, Downton Abbey poster on right


I am joined by my favorite podcasters, Kelly Anneken and Tom Schneider of the "Up Yours, Downstairs Podcast," to discuss disability on the hit ITV / PBS Edwardian Era drama, "Downton Abbey.”

Edwardian Era (Wikipedia)
World War I (Wikipedia)

What's The Takeaway?

The Guardian - May 18, 2015

These kinds of stories are horrifying, but I also wonder what  causal readers and news-watchers think about them. It makes a difference how you interpret the problem:

- Do disabled people need more protection, oversight, and supervision?

- Is there something about care services and institutions that encourages abuse?

- Should families of disabled children be terrified by the “mainstream” world?

- Is it that people don’t really see disabled people as human beings?

- How many disabled people lack the capacity to stop or avoid abuse, and how many mainly lack the training and socialization to do so?

There might be some truth to all of these, but some conclusions are helpful, while others tend to lead to more problems, not fewer.

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Addendum:

I’m very glad to see that The Guardian’s Frances Ryan has followed up the news story with an editorial that provides a framework for thinking about this. Note in particular her reluctance to dwell too much on the idea of disabled people being inherently “vulnerable.” What still seems to be missing is a broader discussion of abuse that includes non-sexual abuse. Sexual abuse is particularly heinous, but many of the same interpersonal dynamics and lack of basic supports feed into other kinds of physical and emotional abuse, too.

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Sunday, May 17, 2015

Weekly Reading List

Colorful cartoon picture of a tall stack of books
This is a collection of disability-related articles and blog posts I read last week, but didn’t have a chance to link to or discuss. It’s an opportunity to catch up with some of the good stuff that’s out there, but doesn’t fit neatly into whatever the “big stories” are each week.

Here is this week’s reading list:

Tonia Says - May 6, 2015

It’s always good to be reminded by an actual disabled person why we use the words we do to describe ourselves. There are all kinds of intellectual arguments about this, but we feel personally about it, too. It’s not all a political stance.
Mama Fry, Scary Mommy (date unknown)

Another angle on labeling, this time from a parent of a disabled child. She gets at the issue that bothers me about labeling, which is a seeming confusion between the label … the word … and the thing itself. As if the label makes the thing real, when really the label is just a way to describe something that already exists and is best recognized.

Laurie Arnold, The Mighty - May 14, 2015

This is kind of a blunt, but also refreshing description of how it feels to be gawked at. Or, in this case, how it feels for parents to see their disabled kids gawked at.

The Squeaky Wheelchair - May 14, 2015

This is about college, obviously, but also a reminder of what it takes for people with significant physical disabilities to function independently. It’s a lot about management skills.

Diane Coleman, Syracuse.com - May 11, 2015

The core disability rights argument against legalized assisted suicide. It’s not about religion or morality, it’s entirely practical … about bad policy more than bad behavior.

Conor Friendersdorf, The Atlantic - May 15, 2015

The former Executive Director in me cringed a bit while reading about a mental health counselor’s somewhat unauthorized practices, though they seem to be right.

German Lopez, Vox.com - May 16, 2015

I appreciated reading the “other side” of this issue … the medical reasons why higher-octane painkillers can bad for you medically, not just morally or legally. Still, even those arguments seemed a bit weak to me, kind of circumstantial. The meds themselves seem to be no worse than any other, as long as they are used responsibly. And pain management is a big, big issue for many disabled people.

The Onion - May 15, 2015

“It’s important to remember that in those days, the need to rely on eight mechanical spider legs was perceived as a weakness,” said Elmore, citing a lack of education about the issue and the fact that most Americans simply chose not to talk about it."

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Weekly Wrap-Up

Illustration of a calendar with a red pin in it
Monday, May 11, 2015
Tuesday, May 12, 2015
Wednesday, May 13, 2015
Thursday, May 14, 2015
Friday, May 15, 2015
Saturday, May 16, 2015
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Saturday, May 16, 2015

Quote

Blue icon of quotation marks
I’ve been away from Tumblr too long.

When I started disability blogging 2 years ago, I also started reading disability-related Tumblr blogs more or less daily. It helped me get a feel for, I suppose, a younger, more spirited, less careful community of disabled people. I carried on with regular Tumblr reading until maybe 6 months ago, and then for some reason fell out of the habit. I kept posting to my own Tumblr, but only rarely latched onto or “liked” other stuff on Tumblr.

I found the following this afternoon, a reblog by WheelieWifee, of an April post at Words N Stuff:
1. Ignore their stares. You owe no one an explanation.
2. If they are rude, be witty. If they are rude, be sarcastic. If they are rude, be ruder.
3. Never sacrifice yourself for their approval. You don’t need it.
4. Laugh in the faces of those who call you “faker,” those who call you “scammer,” those who call you “liar.”
5. Walk as slowly as you like. Let them sigh loudly behind you - you are doing nothing wrong.
6. If they’re in your space, tell them. If they don’t move, make them.
7. Don’t feel obligated to “look sick.” Don’t feel obligated to “look well.” Don’t feel obligated to look any which way except how you do right now.
8. Use their words against them. Take the ones they hurl at you and embrace them. They are yours now.
9. Flaunt your “imperfections.” Show off the things they hate. Put stickers on your braces and tattoo the hip that never stays in place. Don’t let them ignore you. Don’t let their eyes slide over you.
10. If they hurt you, if they slip past your defenses and under your skin, if their ignorance is more than you can handle. If they hurt you. Don’t let them know.
cripple punk
april 26/30//q.e.l.//
I don’t agree with every bit of it. For instance, I think that if “they hurt you,” it’s sometimes important to “let them know.” But it’s all good stuff to think about. It’s the sort of thing disabled people who are still struggling with their disabilities and internalized ableism need to read. I’m talking about youth with disabilities, and people of any age dealing with new disabilities. Parents and families should read it, too. It’s the nuts and bolts of disability pride, in very concrete, non-theoretical words.

Must not forget Tumblr.

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Friday, May 15, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Time again for the Disability Blogger Link-Up, an opportunity to share something you've written, or something you loved reading, with the disability blogging community.

Use the blanks below to post a blog post or article on something related to disability … something you want to share.

To make the articles easier to browse, in the “Your name” blank, type the title of the article. In the "Your URL" blank, paste the whole website address of the item you are posting.

Then click the "Enter" button. That's it!

Note: If your post doesn't appear immediately, try "refreshing" the page a few times. Sometimes it takes a little while to show up. Also, feel free to post more than one item. Finally, you might want to add a comment at the bottom of this post, to identify yourself or add an explanation or comment about the items you are posting. Also, if you need to delete or edit a post, let me know and I will take care of it.

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next Link-Up Friday, May 29, 2015.

Thursday, May 14, 2015

Housekeeping

Silhouette icons of three figures doing various kinds of housekeeping

It’s time for some updates on the website and podcast ...

Looking Ahead

Friday, May 15 - Sunday, May 17

Monday, May 18
Downton Abbey, with guests Kelly Anneken and Tom Schneider of the Up Yours, Downstairs Podcast.

Friday, May 29 - Sunday, May 31
Disability Blogger Link-Up.

Monday, June 1
Disability.TV Podcast
Red Band Society, with guest Christina Stephens, YouTube vlogger AmputeeOT.

Friday, June 12 - Sunday, June 14
Disability Blogger Link-Up.

Monday, June 15
Disability.TV
Beedie & Jessa, examining a short storyline in Girls.

Feedback

There are several ways you can comment on the blog and podcast. Most readers use the Disqus comment feature, where you can comment on any blog post by clicking the “Click here to comment”  or pencil icon link at the bottom of each item, just to the right of the post date and time. This feature also allows you to interact with other commenters, and you can comment as a guest, even if you’re not registered with Disqus.

If you prefer to communicate with me directly, you can use my email address: apulrang@icloud.com.

Finally, I would greatly appreciate your general feedback through the survey embedded below, which asks for your opinions and ideas for both the Disability Thinking Blog and the Disability.TV Podcast. The survey is completely anonymous, with no personal data coming to me or collected by SurveyMonkey. I hope to have enough responses to get a good idea of what people like and what they’d like to see here.

Create your own user feedback survey

Support

Aside from commenting and completing the survey, there are three main ways you can help support this site:

Subscribe to the Disability.TV Podcast and leave an iTunes review. Reviews help introduce the podcast to potential listeners, and subscriptions raise the podcast in the iTunes rankings.

Contribute through Patreon. It’s a simple way to make a small but important financial contribution towards maintaining and improving the blog and podcast. Believe me, a little help on this is going to go a long way.

You can also help by buying Amazon products through the Amazon Affiliate search widget on the upper right hand side of the blog. If you’re going to buy something anyway, doing it from here will generate a little money for the blog and podcast, while costing you nothing extra.

Thanks to all the readers and listeners. Your return visits and comments make this all a blast to do.

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Throwback Thursday

Illustration of the time machine from the film "Time Machine".
A year ago in Disability Thinking: Defined By Our Disabilities?

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Wednesday, May 13, 2015

Choosing A Disability Charity

Dylan Matthews, Vox.com - April 10, 2015

I have been meaning to post something about choosing a disability charity or organization for quite awhile. I endorse the advice in the Vox.com article. For those interested in disability matters, I strongly recommend that potential donors and supporters consider the following:

Find out how organizations spend their money, and choose an organization with priorities and interests that match your reasons for giving. Think about what kind of work you want to support. For instance:

- Money, adaptive equipment, and direct services to individual disabled people and their families.

- Programs and facilities that serve groups of disabled people.

- Public education and awareness campaigns aimed at changing attitudes and improving social acceptance of disabled people.

- Organized advocacy for specific changes in laws, regulations, policies and practices that affect disabled people.

Consider giving to an organization concerned with all kinds of disabilities, not just one condition.

Think about whether you prefer to support a locally-foucsed, independent organization, or a more high-profile, recognized organization with a state or national scope.

Seriously consider giving only to organizations with disabled people on staff, in leadership, and on governing boards.

Look very critically at how organizations talk about and portray disabilities. Do they depict disability as a heartbreaking tragedy, a hellish existence, or as something manageable through thoughtful support, social understanding, and good policies? Ask yourself how you would feel about how organizations talk about people like you if you had a disability.

Finally, let me add a couple of thoughts on staff salaries and overhead. Full disclosure ... I speak from my over 20 years of experience working at a disability non-profit organization.

Obviously, you want to watch out for "non-profit" organizations that pay stunningly high salaries to executives, consultants, and even board members. On the other hand, it’s important to keep things in perspective and not relegate all charitable work to second or third-class status in the wider economy. If you care enough about something to want it dealt with effectively, then you should pay enough to attract talented people, and make it possible for them to stick with the organization. That means paying people enough for a decent living for themselves and their families. That goes double for disabled people who work at disability organizations.

In fact, an organizational budget that seems to be heavy on salary and overhead may not necessarily be wasteful. The costs of counseling, education, organizing, and advocacy, are almost entirely in salary and benefits, along with offices, supplies, and perhaps mileage reimbursement, (for home visits), for those staff. If you prefer your money to provide material benefits directly to disabled people, then look for organizations that do more direct services and administer “pass through” funds directly to individuals.

I strongly prefer organizations “by and for” disabled people. I like organizations that do a lot of advocacy, especially fighting for better policies and practices. I split my interest about evenly between responsive, plucky local groups and truly effective and innovative national organizations. These are my personal preferences, but I do recommend them to others as well.

Still, the most important thing is to decide exactly what you want to do in the disability cause. “Giving to the disabled” doesn’t have to be confusing, but it isn’t as simple as stuffing a dollar in a can, either.

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Tuesday, May 12, 2015

Should We Help "Reform" Social Security Disability?

David Weigel, Bloomberg Politics - May 12, 2015

I don’t for a minute believe Sen. Rand Paul really wants to reform Social Security Disability in any way a disabled person would like. He’s been trafficking for the last few months in the worst kind of divisive rhetoric about people who are and aren’t “truly disabled”, and philosophically, I suspect he just doesn’t think government should be giving disabled people money at all.

Illustration of a clear light bulb filled with dollar billsEschaton’s take on this is pretty straightforward, and I pretty much agree with him.

That said, I also agree in a very narrow and limited way with Sen. Paul when he says that any reforms to Disability should happen with input from disability advocates. I don’t know if he’s aware of the phrase, “Nothing about us without us,” but that’s one way of looking at what he’s saying here.

In fact, it seems to me this is one of the big reasons why disability program reforms in the UK went sour. The major reason of course is that it was motivated most strongly by the Tory government’s drive to cut spending, and also by a strong dose of the same kind of ableism Sen. Paul has been peddling, (see “truly disabled” above). But I suspect it was even worse because there was little or no input from the UK disability community about what changes they would actually like to see in their disability support programs.

The thing is, we have ideas, and no, they don’t consist only of “more money please." We may not be as concerned with saving money and obsessed with catching cheaters as conservatives seem to be, but we do have ideas about how Social Security Disability can help foster greater independence and financial self-sufficiency. If anyone is really, truly concerned about bending the curve on Social Security Disability costs, they might try being patient about it, limiting their expectations, draining the venom out of the conversation, and asking disabled people what would work best to help us become more independent.

As it happens, there is going to be a Twitter Chat on Social Security Reform on June 1 at 1 PM Eastern, using the hashtags #SocialSecurityReform and #CareerACCESS. It is organized by disability advocates, and will probably be a good opportunity to “brainstorm” ideas and see what others are thinking. The National Council on Independent Living Annual Conference will also include a forum on Social Security Reform.

On the other hand there's always a chance, a pretty good one actually, that Sen. Paul and his colleagues just want to beat up on poor people some more, especially the ones they don’t immediately understand, like people with hidden, ambiguous, harder to pigeonhole disabilities.

That doesn’t mean we shouldn’t offer real, good faith ideas when we have them. I think we should, not to make it easier for Rand Paul to bully disabled people, but sometimes good policy cam grow out of dung.

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Monday, May 11, 2015

Photo Of The Day

Photo of two wheelchair users fencing
It’s shaping up to be a busy catch-up day, and I’m still in recovery mode, so just a photo today. I haven’t reblogged photos as often lately, but I couldn’t resist this one.

From the fencing, man. fencing. Tumblr blog, via Just Rollin On.