Giving Tuesday

Today is Giving Tuesday, which I guess is a special day meant to follow the commercialism of Black Friday, Small Business Saturday, and Cyber Monday, by encouraging people to give to charities. It reminded me of a post I wrote in May, about how to choose a disability-related charity:

Choosing A Disability Charity

Disability Thinking - May 13, 2015

I tried in that post to be fairly neutral on what kind of disability work is most valuable, and instead focused on effectiveness and simply being aware of what kind of disability-related goals you want to support. In other words, I didn’t really make any value judgments. Today I’m going to go ahead and talk about what kinds of disability work I value, and why.

There are four main kinds of non-profit disability work I will list them in order of my personal preference.

Advocacy and Policy

- Helping disabled individuals fight discrimination, improve physical accessibility, and navigate bureaucratic barriers.

- Shaping all kinds of policies, regulations, and laws in ways that expand opportunities and make life better for disabled people.

Advocacy and Policy are my top priorities. I believe that most of the problems disabled people face are systemic rather than personal, and that making better policies and practices regarding disabled people does the most long-term good for the most people. It also happens to fit my personality, which is unsentimental and analytical, so I just "like" advocacy and policy wonkery more!

Services and Support

- Helping disabled people solve everyday problems directly and indirectly related to their disabilities.

- Providing disabled people with the financial support, technology, and direct personal assistance to achieve and maintain their independence.

Services and support address individual needs, especially when they are tailored to each person's situation and directed as much as possible by the person using the service. I feel it is important to support these services because individuals should not have to wait for that perfect accessible world in order to enjoy independence and fulfillment. I'm not into fancy, elaborate programs, and I'm dead set against segregated, sheltered ones. But certain basic services, like income support and home care, are massively valuable.

Awareness

- Informing people about disability issues and the experience of living with disabilities.

- Increasing social acceptance and reducing prejudice against disabled people.

Although social acceptance is important, and being treated cruelly because of your disability is terrible, I am skeptical about the effectiveness of most kinds of "disability awareness" campaigns. For one thing, I'm never quite sure what, exactly, people mean by "awareness." Disability awareness campaigns also tend to be rather simplistic, setting too low a bar for what it expects from people.

Medical Research

- Learning more about specific medical conditions that produce disabilities.

- Developing therapies and cures that might lessen or cure disabilities.

I value all kinds of scientific research, and in some cases, better therapies and treatments can improve disabled peoples' everyday lives. Too often, though, the search for a "cure" seems like a boondoggle. The rhetoric for these campaigns is often so negative about disability itself that they actually make it harder for us to achieve social acceptance. Basic research should be funded objectively, not based on who has the saddest stories, the cutest poster child, or the slickest marketing team.

I'll add one more recommendation, which was also in my May blog post ...

There are few more important principles of the disability community than: “Nothing about us without us.” Whenever possible, support disability organizations led by disabled people, with disabled on their boards, and disabled people in upper management and on service-providing staff. If nothing else, you should seriously question the commitment and relevance of a disability organization that resists or downplays inclusion of disabled people in leadership roles.

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Housekeeping

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

Looking Ahead

Friday, May 15 - Sunday, May 17

Disability Blogger Link-Up.

Monday, May 18

Disability.TV Podcast

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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Choosing A Disability Charity

Choosing where to donate to charity is tough. Here's a simple guide to help

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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Podcast Transcripts

I have just posted a written transcript of the last Disability.TV Podcast, Ep. 22 - Mini-Cast: Ratings Recap. Click here for the transcript.

All future podcasts will be posted with transcripts, and over time, I will add transcripts for past episodes, to eventually make all of them accessible to people with hearing impairments. It’s one of those jobs that are extremely time consuming, or can be quite easy and convenient if you’re willing to spend the money. At this point, I am tentatively going with the paid professional approach.

I’m long overdue getting to this, but it may finally prompt  me to get serious about raising money for the Disability Thinking Blog and the Disability.TV Podcast. You can donate right now using the Paypal widget over on the right side of this blog, but look for something a bit more developed in the near future … such as a GoFundMe or Patreon pitch.

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Buy It: I, Claudius (the book)

From the Amazon.com listing:

"Considered an idiot because of his physical infirmities, Claudius survived the intrigues and poisonings of the reigns of Augustus, Tiberius, and the Mad Caligula to become emperor in 41 A.D. A masterpiece.”

This book and it’s sequel, Claudius The God: And His Wife Messalina and the BBC miniseries take ample artistic license, but Emperor Claudius really did have disabilities, most likely polio and epilepsy. Claudius is one of my historical heroes, and should be for everyone born with disabilities.

Buy It - "Sherlock", Season One

So, the question is … Is the Benedict Cumberbatch version of Sherlock Holmes disabled? Is he autistic? Is he, as the character himself asserts, a “high functioning sociopath?” If he is one of these things, and not just a weird genius, does it change how we appreciate the character and the TV show?

Whatever. It’s tons of fun, especially Season One.

Buy It - Game Of Thrones, Season One

Season One introduces us to two of the series' many fascinating disabled characters ... Tyrion Lannister, a.k.a. The Imp, a.k.a. The Half Man ... and Bran Stark, the young son of Eddard Stark, and a paraplegic. Seeing the very different roles these characters play in the sprawling story shows the different ways disabled characters can function on TV shows.

If you haven't watched the show, what are you waiting for? And don't forget to tune in to my Disability.TV Podcast discussion of disability on "Game Of Thrones", with Alice Wong (@SFdirewolf), posting this Friday, September 19.

Buy It: "The West Wing"

"The West Wing” series is about so many things that its extended depictions of disability take their natural place as just one of many interlocking story lines. President Josiah Bartlett’s “hidden” Multiple Sclerosis echoes the real President Roosevelt’s imperfectly obscured Polio. Although the later years of the show aren’t as good as the first few, the disability depiction improves, showing the President’s progressing disability both as a legitimate personal crisis, and a manageable one that only occasionally interferes with his conduct of “the job”.

It’s such a bonus to that we get another disability depiction, in the recurring character Joey Lucas, the political pollster who is deaf, played by Marlee Matlin. Her introductory scene, in which a drunk Josh Lyman struggles to understand that she is deaf, and the guy with her is her Sign Language Interpreter, is one of the funniest scenes in the entire series.

Buy It: "The Other Sister"

This film is underrated, despised, actually, by most of the pop culture enthusiasts and movie critics I respect. The reason, I think, is that it is an unusually pure example of a bad movie with very good disability depictions at its heart. Yes, once again we have non-disabled actors portraying disabled people. To be sure, Juliette Lewis and Giovanni Ribisi go overboard and seem to have their eyes fixed on intensely craved Oscars. At times, the characters’ adorableness drifts into condescension. Yet, through it all, we get a strong statement in support of freedom, integration, and the dignity of risk for people with intellectual disabilities. Plus, if you care to dig a little deeper, the film can prompt interesting discussions about disability and social class. At the very least, this should be required viewing for anyone applying for direct care and support jobs in the developmental disability field.

Buy It: "Parenthood" Season 5

Parenthood Season 5 was a doozy, particularly in how it explored more deeply into Aspergers Syndrome, with Max now much more of a teenager than a kid, and his photographer friend Hank discovering, mainly through knowing Max, that he, too, may have Aspergers. Plus, there’s a harrowing, somewhat disturbing scene that I’m sure different audiences will see entirely differently, which reflects so well how various kinds of Autism are viewed in real life. I unloaded about it here back in May.

Buy It: "I Claudius"

Claudius, a “halfwit” with a stumble and a stutter, is the least respected, most ignored member of Caesar Augustus’ family. This is both a curse and a blessing. This is Claudius’ own story, which he is writing at the end of his life, as the aging Emperor of Rome. This acclaimed BBC series is based on the books by Robert Gaves, "I, Claudius" and "Claudius The God”, both of which are fictionalized accounts based on the actual life of Emperor Claudius, who had cerebral palsy and epilepsy. It features outstanding performances from everyone, including Derek Jacobi as Claudius and John Hurt as Caligula.

I plan on covering "I, Claudius" next Spring in my new podcast, Disability.TV.

Buy It: "The Man He Became"

This book is great history and biography. At the same time it offers scores of insights into what it is like to experience new disability, both the pain and fear of the conditions themselves, and the social dimensions that become even more important. I found my admiration for Franklin Roosevelt deepen and take unique shape after reading this book.

Earlier this year, I wrote a three-part review which you can read at the links below:

Part One: "Virus and Host"

Part Two: "He's Through"

Part Three: "Resurrection", and Conclusions

"Criptiques" & "Criptionary"

Criptiques Podcast Episode 3: Maria Palacios

Caitlin Wood, Criptiques - July 23, 2014

There's another great "Criptiques" interview out! Follow the link above to hear Caitlin Wood interview poet, performer, and disability activist Maria Palacios. Someone should really collect writings from all of these amazing people Caitlin is interviewing, into some sort of book. Oh, wait ...

During the interview, Catilin and Maria refer to Maria's book, "Criptionary". I haven't read it yet, but I have read a few sample definitions from the book, and they're hilarious.

If you want to know a little more about the book before you buy, visit the "Criptionary" Facebook Page.

Buy It: The Revolution Was Televised

If you are interested in what makes a great TV show different from bad or mediocre TV, The Revolution Was Televised: The Cops, Crooks, Slingers, and Slayers Who Changed TV Drama Forever, by TV critic Alan Sepinwall, is a good book to start. It’s also just plain fun to review some of the best TV shows you may have watched over the last 20 or so years. It also is the book that finally convinced me to watch Friday Night Lights, one of the best disability TV shows that wasn’t a disability TV show.

Buy It: Children Of A Lesser God

I’m not sure how well Children of a Lesser God stands up today, but I still associate it in my mind with that late ‘80s / early ‘90s period when I was introduced to disability issues and culture. At any rate, the film is a great introduction to Marlee Matlin, who won the Best Actress Oscar for the role in 1987.

Fundraising Announcement

After much thought, I have decided to join the Amazon Affiliate program, in order to help me support and expand Disability Thinking. If you buy any products from Amazon.com, using links from this blog, I will get a small percentage of the proceeds. To kick things off, I have added a menu of “Recommended” items to the right-hand sidebar … including ten of my favorite books and DVDs related to disability. From time to time, I will also post product reviews that I hope will be interesting to read, and will also include links to purchase through Disability Thinking.

Blogging isn’t expensive, but it has a cost, and some day soon I hope to add some features that definitely carry a higher price tag. I would greatly appreciate any purchases you make through Disability Thinking!