Thinking Today ... And A Blogging Break

Blogging Break sign with old-style rainbow tv test pattern in the background

I've got nothing original or groundbreaking here, just an attempt to restate the basics a bit more simply than usual:

We want to be seen and talked about as sentient people, not as ...

We want to be allowed to have the same range of feelings and responses to things that other people have, without additional social expectations and layers of judgment, just because we are disabled.

We want to be able to choose where and how to live, and what to do with our lives, even if we need lots of help every single day just to get out of bed and go to the toilet.

We want all the normal things everybody else does to be approximately as easy to do and hassle-free as they are for everyone else. We are fine with adapting and doing things differently, but not with things being harder, more exhausting, or impossible … especially when we know they don’t have to be.

***

I'm going to take a blogging break until Saturday, April 23. I'll still be Twitter-ing and Facebook-ing, and working on #CripTheVote, but I need a short rest from trying to write something interesting daily.

Weekly Reading List

These five articles I read last week have one quality in common. They all contain beautiful, clear, vivid descriptions of why we disabled people react to things as we do. I think one of the biggest conceptual gaps between the disability community and the rest of society is the bafflement most non-disabled people have over our responses to everyday experiences:

- We sometimes fly off the handle at relatively minor slights from strangers.

- We have complicated relationships with our families, even when they are outwardly supportive.

- Like everyone else, we crave success and approval, and we don’t like being ignored, but we hate certain kinds of praise and attention.

- It’s hard to people to tell when we are experiencing the “normal” troubles everyone goes through, and when its something more serious and debilitating.

- Sometimes we honestly don't know what we want from the rest of society, or which priorities to focus on.

There are good reasons for all of these things. By and large we aren’t irrational or confused about our feelings. But they can be hard to explain. These articles do it well.

On A Roll … Couldn’t Stop
Dave Hingsburger, Of Battered Aspect - April 10, 2016

How a Parent's Response to Ableism Can Impact Their Child
Tonia Says - April 4, 2016

Please Stop Calling My Life With A Disability ‘’Inspiring”
Vanessa Parekh, The Establishment - April 8, 2016

Working, Access, Disability, Inclusion, and Internalized Ableism
Unstrange Mind - April 10, 2016

Why We Still Need Awareness
Karin Hitzelberger - April March 30, 2016

#Crip The Vote Twitter Chat: Disabled Voter Access and Disenfranchisement

Yesterday’s Twitter Chat on voting accessibility and disabled voter disenfranchisement was probably the most active and meaningful #CripTheVote event we’ve had so far. Big thanks and congratulations to my partners in this thing, Alice Wong (@SFdirewolf), and Gregg Beratan (@GreggBeratan). And of course thanks to all who participated.

We can’t prove it was the biggest event so far, because getting consistent stats out of Twitter is hard to do and expensive. However, here are a few fairly reliable measures of everything #CripTheVote between April 3 and April 10, most of which come from yesterday’s chat:

- 889 original tweets, 3,325 retweets, and 349 replies

- 1.1 million “maximum reach” (number of people who may have seen #CripTheVote tweets)

- 15.6 million impressions (number of potential individual tweet viewings)

- Participation from 11 countries, including 125 tweets from the UK, 53 tweets from Canada, and 2 tweets each from Brazil and Australia.

Speaking just for myself, I came away with three main ideas from the conversation:

1. Absentee ballot voting or other forms of voting from home are often good options for disabled voters, if that’s the method they would freely choose. However, it must never be allowed to become a substitute for accessible voting in neighborhood polling places.

2. The top priority is for disabled people to cast votes and have them counted. But it is also important for disabled voters to experience and be seen voting along with all of their neighbors, with and without disabilities. There is added value for the disability community when we can show up physically and cast our votes.

3. There are dozens of ways that otherwise accessible voting can go wrong and end up excluding voters with disabilities. But above all of them, caucuses just need to go. You could not design a primary voting system that more thoroughly excludes disabled people if you tried. It’s hard enough for disabled voters to get to a polling site and simply cast a simple vote. Imagine how much harder it is for so many of us to sit though hours of chaotic group discussions, (and hollering matches), under purposefully arcane rules, and in all likelihood never hear or be heard due to scores of physical, sensory, and cognitive barriers that the parties barely think about much less solve. Caucuses are accessibility nightmares.

Enough from me. Once again, Alice has put together a Storify of tweets from the chat, in case you missed the event or just want to see what it was all about. Take your time and browse this broad and varied discussion of voting accessibility, and the numerous barriers and frictions that make political participation so much harder than necessary for disabled people.

Weekly Wrap-Up

Last week’s blog posts …

Sunday, April 3

Weekly Link-Up

Monday, April 4

#CripTheVote: Tweet The Candidates

Tuesday, April 5

Weekly Reading List

Wednesday, April 6

#CripTheVote Disability Issues Survey Update

Thursday, April 7

Throwback Thursday

Friday, April 8

Disability Blogger Link-Up

Saturday, April 9

Disability.TV Podcast Recap

Disability.TV Podcast Recap

In case you missed them, here are the first three Disability.TV podcasts of 2016:

January
Disability.TV Episode 29 - President Bartlett’s China Trip
The West Wing

[Transcript]

February
Disability.TV Episode 30 - The Cage / Menagerie Conundrum
Star Trek: The Original Series

[Transcript]

March
Disability.TV Episode 31 - Chief Ironside, Peer Counselor
Ironside

[Transcript]

Subscribe to the podcast:

iTunes
Stitcher
Podbean

Feedback:

Email: apulrang@icloud.com
Twitter: @AndrewPulrang
Facebook: www.facebook.com/apulrang
Website: www.disabilitythinking.com

Visit the Support Page and help keep the podcast and the Disability Thinking site going and growing.

Disability Blogger Link-Up

How about another Disability Blogger Link-Up? Share something you want other disabled readers to see and appreciate, or something you want non-disabled people to read and think about.

As always, to make the links easier for visitors to browse, in the “Your name” blank, please type the title of the article you are posting. In the "Your URL" blank, paste the URL address of the item. Like this:

Name = Title of your article.

Your URL = Link to your article.

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

This Link-Up will close at Midnight Eastern on Sunday. The next Disability Blogger Link-Up will start Friday, April 22, 2016.

Throwback Thursday

Two years ago in Disability Thinking: “Jaimie Lannister’s Hand and Other Game Of Thrones Notes”

“Game Of Thrones” is a jam-packed show to begin with. It also happens to be jam-packed with disabled characters. There is so much interesting disability stuff to un-pack, that I could probably do a whole podcast just on disability in “Game Of Thrones.” In fact, the next episode of the Disability.TV Podcast will be about a particular scene on the show, centered on the prison cell conversations of Tyrion Lannister, arguably the most consistently interesting disabled character currently on TV. I wish the video I embedded in this post still played, because that scene between Tyrion and Shae still moves me.

#CripTheVote Disability Issues Survey Update

Now that the #CripTheVote Disability Issues Survey has passed the 400 responses mark, it's probably a good time to take another look at the results so far. The last time we looked, we had about 300 responses. It's notable that 100 more responses resulted in fairly little change overall ... with a few exceptions.

Question 1: Disability Policy Areas in priority order: (1 = top priority, 10 = lowest priority)

1. Health Care
2. Civil Rights / Discrimination
3. Accessibility
4. Employment (Employment and Accessibility traded spots)
5. Housing
6. Education
7. Long Term Care / Personal Assistance
8. Benefits
9. Transportation
10. Assistive Technology

Notes on Question 1:

Honestly, this first broad category ranking question is probably not that useful. The categories are so broad that they all seem equally important. However, the top three or four issues do seem to make sense as high priorities for the disability community. It's surprising that Long Term Care / Personal Assistance ranks as low as it does so far. Maybe that's because people don't immediately recognize what the term actually refers to. Also, Accessibility and Employment have swapped their 3rd and 4th place spots since last month, but remain close together

Question 2: Disability Policy Ideas: Respondents asked to choose 5 out of 15 specific ideas. (Percent of respondents who chose each one, in order of popularity, most to least)

1. Hire and appoint more disabled people to government and policy-making positions. 54.14%
2. Pass the Disability Integration Act to promote independent living instead of nursing homes. 49.62% (moved up from 4th place)
3. Require disability awareness training for law enforcement. 48.37%
4. Ban payment of subminimum wage. 47.37% (moved down from 2nd place)
5. Change Social Security to reduce or eliminate work disincentives. 45.11%
6. Defend Social Security and Medicaid / Medicare against political attacks. 44.36% (moved up from 7th place)
7. Strengthen enforcement of accessibility standards. 43.36% (moved down from 6th place)
8. Eliminate use of physical restraint and isolation in public schools. 34.34%
9. Eliminate the Social Security “marriage penalty.” 28.07% (moved up from 10th place)
10. Strengthen voting rights and accessibility. 23.31% (moved down from 9th place)
11. Strengthen the rights of parents with disabilities. 23.31%
12. Review and reform guardianship laws relating to people with disabilities. 16.54%
13. Increase federal share of Special Education costs. 16.29% (moved up from 14th place)
14. Ban or phase out sheltered workshops. 15.04% (moved down from 13th place)
15. Strengthen enforcement of “most integrated setting” regulations in Special Education. 14.54%

Notes on Question 2:

The 2nd and 4th most popular policy positions have both received attention over the last week from Hillary Clinton, and to some extent Bernie Sanders' campaigns. Clinton and Sanders have both come out against payment of subminimum wage, and today Clinton specifically declared her support for passing the Disability Integration Act (DIA). The DIA is pretty consistent with Sanders' general political views, but given how important and fragile access to home care is for so many disabled people, disabled voters are going to need more specifics from him on this issue especially.

In fact, all of the top issues on this list are ripe for any of the remaining Presidential candidates to embrace or at least address with specifics. The top six alone would make a very credible disability policy agenda. Yet, it's remarkable how few of these issues can be found on any of the candidates' websites or in any of their official speeches ... even when they do address disability issues directly. Maybe sharing the results of this survey can suggest ways that candidates can re-calibrate and update their appeal to disabled voters.

Question 3: What best describes your interest in disability?

56% I have a disability
21% I have a disability and disabled person(s) in my family
11% There is a disabled person(s) in my family
6% I work in the disability field
5% Just interested

Notes on Question 3:

The ratios here have remained pretty much the same throughout the life of the survey. It's still mostly disabled people, with a some decent additional representation from families and professionals. It's about what we hoped for.

Weekly Reading List

Last week’s reading …

How To Be A "Self Advocate" That Disability Organizations Will Listen To
Lei, We Always Liked Picasso Anyway - March 22, 2016

Sarcasm is my least favorite brand of humor. I like it even less in the service of commentary on something I actually believe in. Still, I have to admit, this does a very good job of highlighting the way so many disability organizations go through the motions of inclusion and embrace certain approved sorts of disability advocates as a way of diluting their effectiveness. I’m not even sure it’s intentional. Most often I think its just that people and institutions naturally do what they can to avoid discomfort, and real activists make life harder and more uncomfortable. So they try to pick “advocates” who seem polite and easy to deal with, and they shun activists who hurt peoples’ feelings. Like I say, it’s natural, it shouldn’t surprise us, that doesn’t means it’s okay.

What you see is not what you get: life as a female autistic
Sarah Hendrickx, Standard Issue Magazine - January 4, 2016

I am not autistic. I am not any sort of autism expert. But as far as I can tell, this is the best explanation of what autism is like from the autistic person's point of view ... including how frustrating it is that autism is so fundamentally misunderstood most of the time.

Paralympic athletes 'may have put disabled people off exercise'
James Meikle, The Guardian - April 3, 2016

It makes you wonder how many other things people just assume about what motivates disabled people might be completely wrong.

Reporting on Disability with Sensitivity, not Sensationalism
Genevieve Bedmaker, Neiman Reports - April 3, 2016

I like what this article says about disability journalism, though the quotes from the founder of “The Mighty” didn’t jibe too well with what that online journal actually became. If you’re not sure what I’m talking about, read this Weekly Reading List from January, and check out the Twitter hashtag: #CrippingTheMighty.

When fear of wheelchairs is really fear of institutionalization
Social Skills for Autonomous People - March 4, 2016

The depths of the ableist mind are dark and twisty. I think we only understand about half of what makes people so weirded out about wheelchairs and other visible markers of disability. I think sometimes we overthink it, and really, for most people, it just boils down to a good old fear of death and ill-health.

#CripTheVote: Tweet The Candidates

Last week was an eventful one in disability activism. We should make the most of it. Get ready to #CripTheVote.

This week, presidential candidate Hillary Clinton endorsed two specific policy proposals that are incredibly important to the disability community.

On Monday, March 28, she answered a question from the audience at one of her campaign events, (an attorney with autism), about the long and controversial practice of paying sub minimum wage to certain disabled workers. Clinton said that the practice, which is legal under Section 14(c) of the Fair Labor Standards Act, should be abandoned … that no disabled person should be paid less than the minimum wage. (Add link to article).

Then, on Saturday, activists from ADAPT in Rochester, New York traveled to a Clinton event in Syracuse, specifically to ask Clinton if she supports the Disability Integration Act, (DIA), a Senate bill sponsored by Sen. Chuck Schumer, that would require all states to allow anyone qualified for long term care services to receive those services at home if they choose … essentially ensuring that nobody has to go into a nursing home or other institution if they don’t want to. Again, an activist in the audience asked Clinton if she’d support the DIA, and she said yes. (Add link to article).

These endorsements are important for several reasons.

- These statements are unusually specific. 14(c) will either be repealed or not, and the DIA will either pass the Senate, or not,. They aren’t vague aspirations that can't be pinned down. They are specific policy goals we can easily track in the coming months and years.

- They address two of the most potent issues the disability community cares about. Both are about fundamental values like fair pay and basic freedom.

- As important as these issues are to the disability community, most voters don’t know anything about them, so endorsing them really doesn’t help a candidate with anyone except for voters with disabilities and maybe their families. Bothering to day anything at all about these issues indicates that a candidate views disabled voters as worth courting.

- Both proposed solutions are at least somewhat controversial. Sub minimum wage has defenders, including some disabled people, disability professionals, and families. And it is far from clear what, exactly, is the most effective way to help disabled people get out and stay out of nursing homes. Most people agree on these goals, but any kind of tinkering with existing programs tends to raise objections, some of them practical, others simply based on financial interest or emotional investment in the status quo. Taking positions on these issues will win friends, but also create some enemies.

- These are meaningful policy statements that are more specific than what any of the presidential candidates have already said in their speeches or on their websites.

If you support Hillary Clinton for President, this is reason to be very proud. But that’s not the end of the story. The other candidates could, in theory, offer their support as well. The most obvious would be Bernie Sanders, but it’s not out of the question that a Republican candidate might support these positions.

And if ALL of the candidates came out in favor of these policies, it would be nothing but good news for the disability community. So let’s see if we can make that happen!

This week, get on Twitter, and tweet the challenge to the other presidential candidates. Ask them to support repeal of the sub minimum wage for disabled workers. Ask them to support the Disability Integration Act. Here are suggestions to help you do this for each issue.

Issue Background: Subminimum Wage:

National Council on Disability Report on Subminimum Wage

Sample Tweets:

@JohnKasich @mike_schrimpf Will John Kasich support banning payment of subminimum wage to workers with disabilities? #CripTheVote

@tedcruz @MrJoshPerry Will Ted Cruz support banning payment of subminimum wage to workers with disabilities? #CripTheVote

@realDonaldTrump @DanScavino Will Donald Trump support banning payment of subminimum wage to workers with disabilities? #CripTheVote

@BernieSanders @taddevine Will Bernie Sanders support banning payment of subminimum wage to workers with disabilities? #CripTheVote

Issue Background: Disability Integration Act

Disability Integration Act (S.2427)

Sample Tweets:

@BernieSanders @taddevine Will Bernie Sanders support the Disability Integration Act (S.2427)? #DIAToday #CripTheVote

@JohnKasich @mike_schrimpf Will John Kasich support the Disability Integration Act (S.2427)? #DIAToday #CripTheVote

@tedcruz @MrJoshPerry Will Ted Cruz cosponsor the Disability Integration Act (S.2427)? #DIAToday #CripTheVote

@realDonaldTrump @DanScavino Will Donald Trump support the Disability Integration Act (S.2427)? #DIAToday #CripTheVote

Each tweet includes the candidate’s official Twitter handle, and one for a key campaign advisor or manager. Adding #CripTheVote joins all of our Tweets into more of a unified push, and makes it easier for us to see right away how heavily and consistently we are delivering our message. Of course, you can also compose your own messages. However, it’s a good idea to make them basically the same for each candidate, to make it clear that the benefits of listening and responding to the disability community are open to all candidates, not just those people may assume we already support.

Let's start today, Monday, April 4, and see how many tweets we can generate this week. Okay? Let’s do this!