Friday, August 28, 2015

Disability Blogger Link-Up

Word cloud around the word "blog"
How about an end of summer Disability Blogger Link-Up? Share a disability-related blog post or article here, any time between Friday, August 28 and Midnight Sunday, August 30, 2015. And of course, read what others have posted.

Technical note: 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.

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


Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, September 11, 2015.

Thursday, August 27, 2015

... And, We're Back!

Photo of an iMac on a coffee table
The wonky laptop is now fully retired, and my new iMac is working flawlessly. I’ve got a lot of catching up to do. I’m going to ease back into things starting tomorrow, with another Disability Blogger Link-Up. I may as well let you all provide the content for a few days while I get oriented to the new computer.

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Monday, August 17, 2015

Death Throes

Picturer of a laptop computer with smoke rising from it
My MacBook Air is dying, fast and ugly.

On Friday, between Tweets about the Disability Blogger Link-Up, I did some comparison shopping and decided to order a new 21.5 inch screen iMac. I think it’s been over 15 years since I bought myself a desktop computer. While I am annoyed at the inconvenience, and a little anxious because I hadn’t planned on a big purchase like this, I am excited to switch to a different kind of computer, with a much bigger screen and a lot more storage.

Until the iMac arrives later this week, I still have my iPad Mini to work with. Unfortunately, it’s cumbersome for blogging, and podcasting work is out of the question. So, it’s going to be a very think week here at Disability Thinking. I will aim to get back to a regular posting schedule next Monday, and finish Part Two of my Disability.TV podcast on Seinfeld by then.

Meanwhile, feel free to browse the Archives (over on the right, scroll down), and the past Disability Blogger Link-Ups.

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Friday, August 14, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Time once again for a Disability Blogger Link-Up! As always, you can post anything you like, as long as its related to disability.

Technical note: 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.

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

Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next regular Disability Blogger Link-Up Friday, August 28, 2015.

Thursday, August 13, 2015

Checking My Privilege

Illustration of a black button with "got privilege?" in white letters
Several weeks ago, fellow disability blogger and Facebook friend Dominick Evans posted his answers to a checklist on privilege. The idea is that you start out “standing” at the midpoint on a scale of social and economic privilege, then take steps forward, backward, or stand still, according to your answer to each question. The questionnaire isn’t designed specifically for disabled people, but I think it produces a fairly accurate, honest picture of relative privilege.

Here are my answers. As you will see, my disabilities subtract fairly little from an overall surplus of privilege. For what it’s worth, my score feels more or less correct to me.

1. If your parents worked nights and weekends to support your family, take one step back.

     No. Stay.

2. If you are able to move through the world without fear of sexual assault, take one step forward.

     I’m not sure my confidence is justified, but I don’t think about it, so Yes. Step Forward.

3. If you can show affection for your romantic partner in public without fear of ridicule or violence, take one step forward.

     Yes. Step Forward.

4. If you have ever been diagnosed as having a physical or mental illness/disability, take one step back.

     Yes. Step Backwards.

5. If the primary language spoken in your household growing up was not English, take one step back.

     No. Stay.

6. If you came from a supportive family environment take one step forward.

Yes. Step Forward.

7. If you have ever tried to change your speech or mannerisms to gain credibility, take one step back.

     Maybe a little bit, due to disability, but on balance I would say No, I have never really felt a need to adapt in any cosmetic ways. Stay.

8. If you can go anywhere in the country, and easily find the kinds of hair products you need and/or cosmetics that match your skin color, take one step forward.

     Yes. Step Forward.

9. If you were embarrassed about your clothes or house while growing up, take one step back.

     No. Stay.

10. If you can make mistakes and not have people attribute your behavior to flaws in your racial/gender group, take one step forward.

     No. I have many times felt that mistakes and shortcomings were attributed to my disabilities. Stay.

11. If you can legally marry the person you love, regardless of where you live, take one step forward.

     I am going to say No, because of how marriage adversely affects disability benefits. Stay.

12. If you were born in the United States, take one step forward.

     Yes. Step Forward.

13. If you or your parents have ever gone through a divorce, take one step back.

     Yes. Although it happened when I was a young adult, my parents divorced. Step Back.

14. If you felt like you had adequate access to healthy food growing up, take one step forward.

     Yes. Step Forward.
 
15. If you are reasonably sure you would be hired for a job based on your ability and qualifications, take one step forward.

     No, I’m not sure of this, because of my disabilities. Stay.

16. If you would never think twice about calling the police when trouble occurs, take one step forward.

     Yes. Although police behavior concerns me, I don’t personally feel like I am at greater risk. Step Forward.
17. If you can see a doctor whenever you feel the need, take one step forward.

     Yes. Step Forward.

18. If you feel comfortable being emotionally expressive/open, take one  step forward.

     No, not entirely. Stay.

19. If you have ever been the only person of your race/gender/socio-economic status/sexual orientation in a classroom or workplace setting, please take one step back.

     Yes, I have been the only disabled person. Step Back.

20. If you took out loans for your education backward.

     No. Stay.
21. If you get time off for your religious holidays, take one step forward.

     Yes. Step Forward.

22. If you had a job during your high school and college years, take one step back.

     No, not really, and certainly not by necessity. Stay.

23. If you feel comfortable walking home alone at night, take one step forward.

     Yes. Step Forward.
24. If you have ever traveled outside the United States, take one step forward.

     Yes. Step Forward.

25. If you have ever felt like there was NOT adequate or accurate representation of your racial group, sexual orientation group, gender group, and/or disability group in the media, take one step back.

     Yes. Step Back.

26. If you feel confident that your parents would be able to financially help/support you if you were going through a financial hardship, take one step forward.

     Yes. It happened more than once. Step Forward.

27. If you have ever been bullied or made fun of based on something that you can’t change, take one step back.

     Not often, but Yes. Step Back.
28. If there were more than 50 books in your house growing up, take one step forward.

     Yes. Step Forward.

29. If you studied the culture or the history of your ancestors in elementary school take one step forward.

     Yes. Step Forward.

30. If your parents or guardians attended college, take one step forward.

     Yes. Step Forward.

31. If you ever went on a family vacation, take one step forward.

     Yes. Step Forward.

32. If you can buy new clothes or go out to dinner when you want to, take one step forward.

     Most of my life, Yes. Now, No. Stay.

33. If you were ever offered a job because of your association with a friend or family member, take one step forward.

     Yes. Step Forward.

34. If one of your parents was ever laid off or unemployed not by choice, take one step back.

     No. Stay.

35. If you were ever uncomfortable about a joke or a statement you overheard related to your race, ethnicity, gender, appearance, or sexual orientation but felt unsafe to confront the situation, take one step back.

     Yes, regarding disability, and I felt uncomfortable about confronting the person. Step Back.
RESULT: I am 11 steps ahead of where I started.

This questionnaire is pretty good, but it could be better at measuring disability factors. For example:

1. For disabled people, not having had a job during high school or college is usually a competitive disadvantage, rather than an indicator of privilege, as question 22 seems to assume. I’m not sure how to fix that for scoring, but it should be addressed.

2. Disability should be added as a possible factor to many of these questions where they aren’t already.

3. Add a question about being able to easily purchase clothes that fit properly and preset you in a stylish, professional manner, which is hard or impossible to do for many disabled people.

4. Add a question about whether you need direct, one-on-one help with essential everyday tasks in order to function. This is something that some, but not all disabled people need, and is a disadvantage in terms of privilege, even when daily help is available, because it is a major life factor other people simply don’t have to deal with.

None of these adjustments would change my overall results very much, but they would make this a more useful questionnaire overall.

This thing isn't meant to make you feel bad, no matter what the outcome. It's more of a self-awareness and thinking tool. Give it a try.

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Throwback Thursday

Illustration of the time machine from the film "Time Machine"
Two years ago in Disability Thinking: ConfessYour ...

I have been thinking a lot lately about opinions I have on disability culture and activism that might not be popular in the disability activist community. I would like to write about them, but I don’t want to be any more of a pedant or mansplainer than I fear I already am. One of these days I’ll figure out a way to deal with these things in an interesting and non-invasive way. It amuses me to see that I was already starting to think about this two years ago 
 
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Monday, August 10, 2015

Weekly Reading List

Illustration of a stack of books
Disability-related articles I collected during the week to catch up on later. This week most of them turn out to be several weeks old, with a run of three on that old favorite disability topic: language.

Caley Farinas, Everyday Feminism - July 30, 2015

This article isn’t about which words to use. The writer here is specifically talking about non-disabled people who think they have more valid insights into disability language than disabled people do. So it’s not about the terminology itself, but about the kind of know-it-all spiral that anyone can get into, but which is doubly annoying when it’s non-disabled people lecturing disabled people about disability. The thing is, these same exchanges happen among disabled people, too. I, myself, have gotten into heated and pretty stupid arguments with other disabled people who don’t like the word “disabled.” In my mind, I just know that they simply lack exposure to progressive disability culture, and that it’s up to me to make them see the light. It’s a hard habit to break when you really are energized by a particular way of viewing the world.

Rick Hodges, Medium.com - July 10, 2015

For a long time, I hung in there with the term “mentally retarded,” precisely because I subscribed to the “euphemism treadmill” idea Hodges cites here. It seemed like people in that community though they could solve the stigma problem by coming up with a different term, and I thought that was a mistake. I still do, basically, and many of the alternatives to the r-word are odious in different ways … especially “special needs.” On the other hand, I think Hodges himself is a bit mixed up about disability terminology, and engages in exactly the kind of presumptuous word-policing described in Farinas’ Everyday Feminism article above. It just goes to show that it is very possible, and quite common for people to be partially right, and partially wrong at the same time about the same thing, maybe especially in the realm of disability.

“Struggling" Tumblr Blog - July 22, 2015

This Tumblr blogger gets right to the point. When I discovered that person-first language was starting to fall out of favor, I was overjoyed. 25 years ago, was taught by other disabled people that person-first was the right way to go, but I never liked it because it always sounded awkward and it was a pain to write. I don’t completely buy the philosophical argument for switching back to “disabled person,” but I like it because it just sounds better.

Stephen Ohelmacher, ABC News - August 9, 2015

This is the best brief explanation of Social Security Disability coming funding shortfall that I have seen so far. I risk being obsessed with this, but I think it is critically important that we separate the funding issue from the reform issues. I am very uncomfortable discussing better work incentives with people who basically disagree with the whole premise of Social Security, who want to narrow its scope to people they consider to be really disabled, or who only care about how much it costs. The reforms most disabled people want to see are important whether or not there’s a funding shortfall, and the two issues should not be linked.

Thom Dunn, Upworthy - July 21, 2015

There are a few apps out there that are designed to explain specific disabilities to strangers in emergencies. I would like to see an app that’s designed for anyone with any kind of disability, that we can fully customize to say whatever we think is important to say. I would definitely put one on my iPhone.

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Saturday, August 8, 2015

A New Favorite

Difficult People … on Hulu.
Stare At Shannon … on YouTube.
Shannon DeVido … website.

I just re-discovered Shannon DeVIdo. I read about her and found her YouTube Channel maybe a year ago, and then forgot to watch more of her videos. She's hilarious.





The standard thing to say is that Shannon DeVido is a funny, talented comedian, not a funny, talented, “disabled comedian,” or, for that matter, a “comedian with a disability.” She is hilarious and she does have a ton of talent and charisma, but a lot of her comedy does revolve around her disability. More precisely, her best comedy is about being a disabled woman in a mostly non-disabled world. Somehow, she highlights the “funny side” of disability, including the strange attitudes and habits of non-disabled people, and the ever-present barriers faced by disabled people in everyday life. Yet, she’s not angry and she doesn’t ridicule anyone or imply that non-disabled people are stupid. Ridicule has it’s place, and bitter can work for comedy. It’s just that Shannon DeVido’s perplexed but positive take makes her work refreshing and accessible … see what I did there? … without being trite.

Anyway, the big news is that Shannon got a guest spot on the new streaming series Difficult People. Maybe it’s a small thing, but I love the fact that the part wasn’t written for a disabled person, but she got the role anyway. That should happen a lot more often.



I wish there was more to the appearance. It would be great if they'd bring her back once in awhile. Then again, bit parts are important, too. They help people get more used to seeing disabled people in ordinary situations, with distinguishing characteristics other than being, you know, disabled.

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Friday, August 7, 2015

What Are Centers for Independent Living?

Map of the United States and Territories
Wouldn't it be great if there was a place anyone could go to for practical information and dogged advocacy for people with all kinds of disabilities ...

... an agency near you, wherever you live in the United States

... a non-profit that can also help families, schools, government agencies, and businesses become better allies of disabled people

... a grassroots movement that combines formidable real-life expertise and personal empathy

... an organization run by and for disabled people?

Someone should definitely get busy and start an organization like that. Wait. They already did.

Centers for Independent Living are not-for-profit disability organizations that are governed and staffed mainly by people with disabilities. They are funded by the federal government, some state governments, and by foundation grants and individual contributions.

There are CILs in every state and territory in the United States. Some states have a 2 or 3 large centers serving big rural territories or large urban populations. Other states have many more Centers of different sizes serving just a few counties. Each CIL is a independent organization. At the same time, Centers are all part of a loose but extensive nationwide network, operating under a common service model and a common approach to disability.

There are several things that make Centers for Independent Living different from other disability-related agencies:

Majority Disability ... The majority of all Centers' staff and board members are always disabled. This is more than a gesture of inclusiveness, and it is certainly not a practice designed to provide employment opportunities for disabled people. Rather, it is a key to the very nature of every Center's services. Nowhere else can you get disability-related services provided by people who live with disabilities themselves.

Broad Scope ... CILs define disability broadly, and encompass the concerns and needs of all disabled people, regardless of the degree or type of disability they have, or of their age, income, gender, sexual orientation, race, or any other social identity they may have. CILs believe in the essential unity of the disability experience.

Services and Advocacy ... All Centers do both services and advocacy. In fact, the two are interrelated. While providing services, you discover systemic problems that call for policy changes through advocacy. At the same time providing services every day, dealing with peoples' individual problems and goals, helps ground CILs' advocacy efforts in every day reality. Few other disability organizations are as committed to both services and advocacy as CILs.

What CILs Don't Do ... What Centers don't do is also important. CILs do not run residences, group homes, assisted living facilities, special schools, or sheltered workshops. In general, they do not seek to create separate, specialized services for disabled people, but rather work to make existing services accessible and equally satisfying for all, including people with disabilities.

I am prejudiced. I worked for 23 years at a Center for Independent Living. For 14 of those years, I was the Executive Director of one. I still do grant-writing work for my local CIL. I still think CILs are as close to being the perfect organization for disabled people and their families.

I also know that CILs aren't perfect. For one thing, with literally hundreds of independently-run Centers operating, they aren't as consistent as one might wish them to be. And CILs do have both strengths and weaknesses. The following is my personal perspective on both:

Weaknesses

The most common complaint I hear from people who try Centers and come away disappinted is that they were unable to help with some very specific, very urgent problem. While Centers usually can get things done in a pinch, they do tend to be better at helping with long-term goals than with emergencies. CILs are not crisis centers.

Centers' struggle for funding can sometimes become a higher priority than their advocacy goals and even their values. It is still quite rare for a Center to "sell out," but it is easy to get distracted off your main mission when money is available to do something that is only semi-related.

Because CILs are so grassroots and rooted in local communities, they can sometimes fail into the trap of wanting to be admired more than wanting to be effective advocates. It's usually possible to be a strong advocate and be well-liked, but it isn't easy. Being considered a respected colleague ... a "team player" by all the other bigwigs in a small community can be awfully tempting.

There is always a risk when you hire people for their life experience more than for their professional credentials. On the one hand, you often find untapped wells of talent, wisdom, and compassion. On the other hand, you may find you have to build up basic administration and collaboration skills, sometimes from scratch. As a result, CILs at times can be a bit shaggy or sloppy with what is broadly termed "professionalism."

Independent Living grew out of a genuine grassroots movement, but was first built mainly on the aspirations of relatively privileged, well-educated, middle-class disabled people. Although there is nothing in Independent Living that is incompatible with other people and goals, it sometimes feels relevant to people with lower incomes, people with cognitive and mental disabilities, and people from more diverse cultural backgrounds.

These are not inherent weaknesses. They are inherent risks of weakness. And most Centers are more open to criticism and change from the people they serve than most other non-profits. After all, most of the staff and board members of CILs have had lots of experience dealing with the failings and shortcomings of agencies and services they rely on.

Strengths

Centers have a unique authenticity and credibility because they are staffed and governed mainly by disabled people. The "peer" connection thing doesn't work for everyone, but overall it is remarkably effective. One of the biggest mental barriers for disabled people is believability. They often just don't believe what non-disabled people tell them they can achieve. But when the person telling you has disabilities, too, then the message is just more believable.

Centers provide a structure for organized disability advocacy that can be reproduced anywhere. Independent Living philosophy, service models, and operating principles are firm enough to give structure to a particular approach to disability, and flexible enough to work in any kind of community.

Centers across the country are diverse in their services and activities, but share a common philosophy of disability and operating values. The tools are the same wherever you go, but the goals and priorities vary to fit each community's unique situations.

Centers make fulfillment of each individual’s goals a higher priority than what society says is good for them. This is critical. CILs definitely share a point of view on disability. But part of that point of view is that no ideology should replace what each individual cares about and wants to achieve. CILs are often the one type of institution that will always stand up to support what a disabled person chooses for themselves.

Although CILs aren't there specifically to provide opportunity for the disabled people who work at them, they do constitute a unique and varied career path for disabled people who want to devote themselves to serving the disability community. Plus, Centers are often proving grounds where disabled people with limited work experience can hone their skills and then move on to greater success in other fields of employment.

After two and a half years of disability blogging, I feel like it is finally okay for me to reflect more deeply on Independent Living and actually encourage disabled people and their families to find their nearest CIL and get involved. I am curious to hear feedback on readers' experience with Centers for Independent Living.

Meanwhile, check out these links for more information:

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Thursday, August 6, 2015

Throwback Thursday

Illustration of the time machine from the film "Time Machine"
One year ago in Disability Thinking: The George Takei "Controversy": My Two Cents.

I recently listened to a terrific interview with George Takei. They didn’t mention the “Miracle In The Alcohol Asile” meme, but they did touch briefly on Takei’s use of humor to help deal with injustice and oppression.

I have to admit, reading about it all again, it does seem like maybe we made a bit too much of this. But I stand by the core issue, which is that Mr. Takei, who is very tuned-in to social justice issues, apparently missed at least two different ways this meme was a stereotypical slam on disabled people. It wasn’t the worst offense in the world, but it deserved some kind of acknowledgement before the public shaming.

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Wednesday, August 5, 2015

Blogging Day Off

Over 19 million views in less than a week. This video is everywhere. It also has nothing to do with disability. But I’m taking a day off from blogging, and it is the happiest YouTube video I have ever seen. So, enjoy:



For the record, the second happiest video I have ever seen is one of the first YouTube videos I ever saw: