Post Chat: #CripTheVote #DIAchat

I just want to leave a brief post to say that this afternoon’s Twitter chat on the Disability Integration Act was fascinating, informative, and emotional. Once again, we got an almost even mix of useful information, new perspectives and ideas, and compelling personal stories … this time all related to disabled peoples’ struggle to get and maintain home care and housing in order to leave an stay out of institutions. It’s hard to imagine a more fundamental issue for people with disabilities.

There should be a Storify available shortly, probably posted tomorrow. In the meantime, check out some links about the Disability Integration Act, offered during this afternoon’s #CripTheVote chat:

Long Term Services and Supports (LTSS) Issues for People with Disabilities

The Disability Integration Act (DIA) S.2427

Update: Sunday, May 15, 2015:

Here is the full Storify of yesterday's #CripTheVote Twitter chat on the Disability Integration Act. Thanks again to our guest, Stephanie Woodward of the Center for Disability Rights, and my #CripTheVote partners, Alice Wong (@SFdirewolf) and Gregg Beratan (@g.beratan):

Disability Issues Survey Results

Over the last few months, over 500 people completed an online disability issues survey organized by #CripTheVote, a nonpartisan effort to bring disability issues into the 2016 U.S. election, while encouraging people with disabilities vote and engage with politics. Yesterday, we posted a series of tweets on the survey results. Those tweets are collected and displayed below.

It is easy for candidates to offer vague rhetorical “support” for disabled people and their families. But there are real, concrete things we need ... actual steps that would make our lives better. I and my #CripTheVote partners, Alice Wong, Gregg Beratan, hope these survey results will spur further discussion, and maybe help candidate focus on more specific, actionable disability policy ideas.

I think maybe this is the most important tweet in the whole run:

Candidates who don’t know what to say about disability issues can ask disabled voters. We know what we want! #CripTheVote

— Andrew Pulrang (@AndrewPulrang) May 12, 2016

You can also see the results in charts by clicking here.

Throwback Thursday

One year ago in Disability Thinking: Should We Help “Reform” Social Security Disability?

It is almost objectively Not A Good Thing that Donald Trump is going to be the Republican nominee for President. However, it is certainly a Very Good Thing that Rand Paul won’t be. He didn’t make much headway in the Primaries, but he did make a brief splash taking on Social Security Disability in a particularly ugly way that combined his signature pious libertarian tone and his somewhat tangential connection to health care … he’s an ophthalmologist. One of the few bright spots in this election year is that his attempt to demonize some disabled people in order to get on the good side of others mostly failed. His distinction between "truly" disabled people and malingerers didn't do much good for him, and that's encouraging. So far, Trump hasn’t scapegoated people with disabilities, and my instinct tells me he won’t. I have the feeling that there are too many disabled people, including SSDI recipients, that he views as part of his natural constituency … white, male, older, under-educated, unemployed, resentful, and not used to dealing with politics. I don’t think that disabled people are “other” enough in Trump’s particular worldview to warrant more than a little superficial taunting. But, it’s going to be a long campaign and I could easily be wrong. And either way, not being singled out by Trump, (yet), should be absolutely no comfort to disabled voters.

Two years ago in Disability Thinking: About Our Bodies

It’s easy to dismiss “body positivity” as a kind of narcissism, but when you start out feeling terrible about your body, a little self-examination and overt celebration is probably a good thing. For example, disabled people posting lots of selfies means a lot more than random teenagers posing with duck lips. For that matter, silly teen selfies probably mean more than we give them credit for. I think one of the key breakthroughs for physically disabled people is realizing that we can’t hide, so we might as well flaunt a little. If nothing else, it’s fun.

Apps For That?

One of the first things I did this morning was check out the App Store on my iPad, and the first thing I noticed was that this week they are highlighting apps for accessibility. Here's a snapshot showing most of the collection they've put together:

Apple did the same thing last summer, in recognition of the 25th Anniversary of the Americans with Disabilities Act. Some of the apps this week are the same, but a few that were there last summer are missing, and a few new have been added. It's fun and maybe useful to browse these apps, if you have an Apple device. As I flick through the apps and try to figure out what they all do, a few thoughts come to mind.

- It looks like they left out the writing and dictation apps, and added a group of apps for speech. That's a decent trade if there is limited space in the promotion, but someday they should do a really thorough listing of apps for every kind of disability. I'd also like to see some of those accessibility mapping apps like AXSmap and AbleRoad included.

- There seem to be somewhat fewer free apps in this collection than you usually see in App Store groupings on a theme. In fact, the cost of these apps seems to be quite a bit higher than usual, and a few of the more powerful apps are quite expensive. That said, for the cost of a modest iPhone and a $120 app, you can give a non-speaking person with additional print disabilities the power of speech. Technology that did that used to cost thousands of dollars just a few years ago.

- Once again I am both intrigued and perplexed by the apps that look like they are supposed to control household devices. There is some kind of Apple-based system for operating appliances, lights, heating and cooling, and even opening doors and windows with the right attachments. The problem is that Apple hardly promotes it at all, and there's surprisingly little information available on how to get started automating your home. They might start with some clear indication of how much it all costs! Or, maybe I'm just being dense about it and haven't found some really obvious source of information.

- Overall, it still feels like the present capabilities and usefulness of apps and mobile devices combined haven't really sunk in with the disability community. Even your basic out-of-the-box apps like calendars, to-do lists, word prediction, and voice input and output can make life with all sorts of disabilities easier.

TV Pitch

If you had the chance to pitch an idea for a TV show featuring disablity, to a room full of production company executives and renowned directors, what kind of show would you suggest?

I was inspired to think about this by an episode of The Light Bulb, a podcast about storytelling and popular culture by Alaistair Stephens and Lani Diane Rich. In a recent episode, they challenged each other to come up with a TV show "pitch", choosing genres, selecting story tropes, and casting known actors. It was a lot of fun to listen to, and they seemed to have fun talking out their ideas. And since I am already very interested in how TV does disability, it seemed natural to start thinking about what kind of a TV show I would make.

Instead of answering that question myself though, I'm going to ask you, the reader, what your dream disability TV show would look like.

What's your pitch?

What kind of network would it be on ... a network like CBS, a premium cable network like HBO, public television, a streaming service like Netflix, or a web series on YouTube?

What genre would you choose ... police procedural, medical drama, sit-com, late night variety, family, sex / relationships, fantasy / supernatural, superhero, science fiction, political thriller, or action / adventure?

Would your disability show have stand-alone episodes following a set formula, or would it have long story arcs and deep character development?

What kind of tone would your show have ... accessible to a mass audience, quirky and innovative, sexy or raunchy, political, traditional, or artistically innovative?

And how would you use disabled characters and disability themes?

Would you include disabled main characters, secondary, minor characters, or extras? Would you focus on youth, teens, adults, or seniors?

Or, would you start small with a disability-themed episode of an existing show?

Share your pitches in the comments below. If there's enough interest, I might set up a SurveyMonkay survey where we can all pick our categories and characteristics to create a collective "ideal" disability TV show!

Weekly Reading List

The Accessible Stall Episode 004: Identity and Microphones
Kyle Kachadurian and Emily Ladau, The Accessible Stall - May 7, 2016

I usually don't talk back to podcasts, but I couldn't help myself with this one. Kyle and Emily make a great podcasting partnership because they have almost polar opposite approaches to disability, yet their friendship is obvious and genuine. I find myself agreeing with Emily most often, while remembering what it was like to view disability in some of the ways Kyle seems to view it. I also like that Kyle and Emily leave the questions they discuss open, and don't try to tie them up in a perfect bow. There's a lot of affirmation in disability culture. This podcast has that, too, but also some tricky and meaningful debate.

New talk show hosted by a non-verbal woman with severe autism is utterly awesome
Walter Einenkel, Daily Kos - May 4, 2016

To be honest, some residual ableism in me caused me to question whether the interview questions coming out of Carly Fleishmann's computer were hers or composed by someone else. It's just a nasty little thought I had for about 2 seconds ... exactly the kind of ugly doubt that turns healthy skepticism into pig-headed ableism. However, one look at Carly's body langauge, especially her eyes, and I was absolutely convinced that this show is the real deal. She may well have some help to prepare ... or maybe she does it all herself. It's clear to me that these are her ideas either way, and she's obviously fully invested in every question, and completely engaged in Channing Tatum's answers. They have great chemistry, too, and Carly's charisma is more than a match for Channing's. I can't wait to see who she interviews next.

How Disability Mega-Charities Lose Their Way
David Perry, The Establishment - May 5, 2016

The Easter Seals re-branding David Perry writes about here isn't the worst that I have seen. It strikes me as mostly standard corporate iconography ... saying everything and nothing simultaneously. The slogan, however is bad. It goes beyond blandness into suggesting a distinct anti-disability ideology. But mostly what I see is evidence of highly-paid P-R consultants who had no understanding or background in disability thinking and experience. I think it's also possible that the slogan was deliberately included to represent how a certain portion of Easter Seals' consumer base actually views disability ... as something to be fought or at least struggled with. Though it is a rare point of view in disability culture and activism, it's not at all uncommon in the wider disability community. I hope David does meet with the executives of Easter Seals and is able to find out what they actually did to get authentic input from the disabled people they serve, and how, exactly, they "lost their way."

Sadiq Khan, disabled Londoners must be your first priority
Patrick Olszowski, The Guardian - May 9, 2016

Reading this article it struck me again how hard it is to tell when a politician's talk about disabled communities is a sincere commitment, and when it's just paying ritual rhetorical tribute to one of a hundred competing constituencies. Parts of this article suggest that the new Mayor of London really does mean to make specific disability policy changes a top priority, while other parts sound more like well-meaning boilerplate than actual commitments. That's why I think that whenever possible, disabled voters should push for candidates and elected officials to add numbers and timetables into their promises for change. How many more accessible houses and apartments will be made? How many more buses will be accessible? By what date? In any case, it is encouraging to see that disability issues apparently featured rather strongly in London's mayoral race.

District denies senior with learning disability the chance to walk during graduation ceremony
Brendaliss Gonzalez, ABC 7 Denver - May 8, 2016

I am honestly quite surprised that this girl isn't being allowed to walk with her class ... and I am not sure what I think about it. I get why the district won't just give her a diploma when she's half a credit short, but she's not asking for that. She's only asking to be with her classmates at commencement, surely a minor concession to the rules, when her situation is entirely due to illness and disability that everyone knows about. It seems like the kind of thing where social privilege might ordinarily play a role. She's a nice girl, well liked, from a "respectable" (white, middle to upper middle class) family. People in the school would be motivated to make it work for her. Or, maybe she isn't well liked. Maybe her family isn't well off or highly regarded. Maybe her family is poor. Maybe they are chronic complainers (i.e., advocates). Or, maybe the district has adopted this no exceptions policy precisely because they want to avoid situations were the "nice" kids are told no problem, while the "troublesome" ones are told to try again next year. Is it really feasible in situations like this to decide on a case by case basis? At the same time, is it really necessary to be this petty about the rules?

Weekly Wrap-Up

Last week’s blog posts …

Weekly Wrap-Up
Sunday, May 1

Weekly Reading List
Tuesday, May 3

Next #CripTheVote Twitter Chat: Disability Integration Act Of 2015
Wednesday, May 4

Throwback Thursday
Thursday, May 5

Disability Blogger Link-Up
Friday, May 6

Disability.TV Episode 32 - Change Of Plan
Friday, May 6
 

Disability Blogger Link-Up

It’s been over a month since the last Disability Blogger Link-Up … long overdue for a new one. It is a great way to share your work with others interested in disability life and issues, and it creates a terrific reading list for a lazy but stimulating weekend! Post your article or blog post on a disability-related topic using the entry fields below.

As always, to make the links easier for visitors to browse, in the “Your name” field, please type the title of the article you are posting. In the "Your URL" field, 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, May 20, 2016.

Throwback Thursday

One year ago in Disability Thinking: This Old (Accessible) House

Since posting this item last year, I went through binge-watching phases with a few more current home remodeling shows, including Property Brothers and various versions of House Hunters. As far as I know, none of these popular shows have done anything with accessibility. One thing I definitely took away from them, however, is just how drastically you can transform an existing house. It's expensive, but then people buying or renovating houses are already committing huge amounts of money for fairly trivial things like granite counter tops and enclosed porches. Making a house more accessible really isn't that big a deal. And it still amazes me that these renovation gurus don't suggest proactive accessibility more often, especially for families who expect to live in their new or renovated houses into retirement age.

Two years ago in Disability Thinking: Best Article For Parents

Just yesterday I read an even better article that directly addresses what I would call the gulf between parents of disabled children and adults with disabilities. The divide isn't always huge or contentious, but I think it's made worse by the fact that the two sides rarely address their differences directly. Parents, especially, seem to assume that being on their kids' side means their experiences are interchangeable with their kids. In reality, being a disabled kid and parenting one are two different experiences. I suspect that in a way, parenting a disabled child is like adopting a child of another ethnicity from your own. It's foolish to question the love and devotion, and children are still children. But it's just as foolish to pretend there aren't two different cultures in the mix. Anyway, here is that article, by Tonia of the Tonia Says blog.

Next #CripTheVote Twitter Chat: Disability Integration Act of 2015

Disability Integration Act of 2015
Guest Host: Stephanie Woodward, Center for Disability Rights

Saturday, May 14, 2016
5 - 6:15 PM EST

#DIAchat  

Hosted by Andrew Pulrang, Gregg Beratan, and Alice Wong, #CripTheVote explored various policy issues important to people with disabilities this spring. We are delighted to have guest host Stephanie Woodward, Director of Advocacy, Center for Disability Rights, for a conversation about the Disability Integration Act of 2015 and Long Term Services and Supports (LTSS) in general.

The Disability Integration Act of 2015 is a bill (S.2427) introduced by Senator Chuck Schumer. From his press release (1/7/16):

... the legislation ensures that any individual who is found eligible for institutional care must also be given the option to receive the same necessary services and supports at home, or in a setting of their choosing, that would have otherwise been provided in an institutional setting.

The federal government describes Community-Based Long Term Services and Supports (LTSS) as:

... sustainable, person-driven long-term support system in which people with disabilities and chronic conditions have choice, control and access to a full array of quality services that assure optimal outcomes, such as independence, health and quality of life.

More on Long-Term Services and Supports from the National Council on Aging

Long-Term Services and Supports (LTSS) Issues for People with Disabilities from The Arc

Overview of DIA

Full text of the bill

Questions for the Chat

Q1 If you use LTSS for your daily activities, what are your experiences accessing those services?
 
Q2 Why are community-based personal assistance services important to you compared to institutions?

Q3 Do you currently receive enough LTSS to live your life the way you want? If no, please explain.

Q4 For those who receive LTSS through private insurance or state programs, what are the challenges using them?

Q5 How will DIA's ban on service caps, waitlists impact the disability community & the all people?

Q6 How would the DIA work in different states with different services already in place?

Q7 How would the additional community-based services be paid for?

Q8 In what ways is the right to adequate community-based LTSS a civil & human rights issue?

There’s also a provision in the DIA requiring more accessible & affordable housing.

Q9 How does availability of housing relate to access to community-based LTSS? What do you think of this provision?

Q10 What can we do to support the DIA? How can we talk about this w/ people who don’t understand or use LTSS?

Q11 If you support the DIA, how will you communicate w/ your Congressperson to get it passed? Ideas?

Q12 What does ‘community integration’ mean to you as a person w/ a disability?

Q13 What is missing in the DIA? What do you want in a society that where disabled people can truly thrive?

Q14 Any final questions to Stephanie about the Disability Integration Act of 2015?

How to Participate

When the chat begins, check out the live-stream: http://twubs.com/CripTheVote or search #DIAchat on Twitter for the series live tweets.

Follow @AndrewPulrang @DisVisibility @GreggBeratan and @IStepFunny (Stephanie Woodward) on Twitter.

Use the hashtags #CripTheVote and #DIAchat when you tweet.

Check out this explanation of how to participate in a chat by Ruti Regan

Additional Links

Resources on voting and people with disabilities

#CripTheVote Facebook Page

A note on language and why we use the term ‘crip’

About

#CripTheVote is a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape.

While #CripTheVote is a nonpartisan project, we understand that many people have already developed preferences for particular candidates. This is great--we only ask that everyone is respectful in their interactions with each other. Our primary focus here is on increasing engagement with disability issues as a part of American politics and on the need for that we are all in agreement!

Please note we do not represent the entire disability community nor would we ever claim to do so. There are many ways to create social change and engaging in conversation is one approach.