Sunday, May 3, 2015
Weekly Wrap-Up
Tuesday, April 28, 2015
Wednesday, April 29, 2015
Thursday, April 30, 2015
Friday, May 1, 2015
Saturday, May 2, 2015
Saturday, May 2, 2015
Poly Sci For Disabled People
Last week The Daily Dot posted an article I wrote, A 2016 candidate's guide to the disability vote.
My aim, frankly, was to get a bunch of stuff off my chest about how politicians handle, mishandle, and squander what could be a real and powerful “disability vote.” Next week, starting Monday, I am going to do something similar here on the blog, aimed at disabled voters and prospective voters.
Disabled people in the U.S. constitute a potentially significant bloc of over 18 million votes ... worth real time and effort for politicians to court. And that's not even counting family, friends, and "allies" who aren't disabled, but may think about disability issues when they vote. We can only fulfill the possibility of real, notable power if we think deliberately about how our experiences and needs relate to politics and policy-making. That means knowing something about how politics work, being familiar with political ideologies, and relating them to the disability experience.
Now, I love politics. It's like a hobby for me. So it’s easy for me, even enjoyable, to think and speak and write about these things. However, most people find politics boring at best, at worst vaguely dirty and definitely disappointing. Whatever you feel about politics though, it does affect your everyday life, even if it isn’t always apparent exactly how.
Over the next week, I’m going to explore some ways that political ideas intersect with our lives as people with disabilities. I hope this will help us engage in politics in a meaningful way. More than that, I hope it will help break down some of the barriers and internal discouragements that tend to make us feel weak, powerless, and needy in the face of “big time” issues and politics. The fact is, we are strong even before we band together … at least as strong as any other constituency you can name. Clarifying a few key issues can, I think, make us a little more confident that we have something to say, and a defensible position from which to say it.
These are definitely going to be my personal opinions, but whether you agree with them or not, I think they all raise important questions disabled people need to consider before voting, especially in the run-up to the next U.S. General Election in November, 2016.
Friday, May 1, 2015
Disability Blogger Link-Up
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.
Have fun posting and reading! This Link-Up will close at Midnight Eastern on Sunday. Look for the next Link-Up Friday, May 15, 2015.
Thursday, April 30, 2015
Bloggy, Podcasty Stats
I decided to take a look at some statistics for the Disability Thinking Blog and the Disability.TV Podcast.
First the blog:
At some point today, the total page views will reach 106,500. Over the history of the blog, it has received an average of 132 page views per day, 3,974 page views per month. However, readership has grown fairly steadily, and the blog has been getting more like 200 to 250 page views per day for the last few months.
64% of visitors used desktop computers
26% of visitors used mobile phones
10% of visitors used tablets.
Top 10 Countries
(Visitors from 132 countries in all)
United States
Canada
United Kingdom
Australia
Germany
India
France
Philippines
Ireland
New Zealand
Netherlands
Italy
Brazil
Sweden
Japan
Indonesia
Spain
Turkey
Finland
Russia
Top 10 U.S. States
(Visitors from 50 states in all)
California
New York
Texas
Massachusetts
Illinois
Pennsylvania
Florida
Virginia
Washington
New Jersey
Ohio
Maryland
Michigan
Georgia
North Carolina
Minnesota
Oregon
District of Columbia
Wisconsin
Colorado
Top 10 Most Viewed Posts
Now a look at the podcast:
22 episodes, 8,793 total plays.
Top 10 Episodes
Top 10 Countries
(Listeners from 55 countries in all)
United States
Canada
United Kingdom
Argentina
Australia
Portugal
Austria
Taiwan
New Zealand
India
It's nice to know people are reading and listening. However, I have to say that the routines of blogging and podcasting are satisfying all by themselves ... far more fulfilling that I imagined they would be when I started.
It's nice to know people are reading and listening. However, I have to say that the routines of blogging and podcasting are satisfying all by themselves ... far more fulfilling that I imagined they would be when I started.
Wednesday, April 29, 2015
Notable Tweets
Student carries disabled friend to school every day for three years so he never misses a class http://t.co/nwvCDBuFxS pic.twitter.com/YPjNt23iAB
— The Independent (@Independent) April 26, 2015
don't be inspired by this, be pissed off no one else has provided this person w independent mobility to get educated https://t.co/DbF9ay1KIt
— Zara (@zaranosaur) April 26, 2015
I found these in my notes from last week. I saved them because together they explain why "Inspiration Porn" is bad. It's not just because it implies most disabled people are pathetic. The real problem is that by highlighting personal virtue, Inspiration Porn distracts from the unjust and entirely changeable situations that make such virtue necessary. Recognizing this takes nothing away from the individuals being virtuous by the way. In the absence of justice, a bit of one-on-one kindness and sacrifice is better than nothing. But let's not mistake them for solutions.Hospital Blogging! Conclusion
Before I finish this “Hospital Blogging!” thing, I think it’s important to acknowledge that many people with disabilities have a much more difficult time in the hospital than I did. Partly this is because independent, empowered disabled people experience their disabilities in fundamentally non-medical ways, while the medical profession, naturally, sees disabilities as medical problems within their purview. It’s a culture clash.
However, in my indirect experience assisting other disabled people, the disabled people who have the most difficulty in hospitals are those with what I like to call “Rodney Dangerfield Disabilities” … disabilities that "don’t get no respect." Emotional / mental impairments fall within this category. So do certain chronic pain / chronic illness conditions like Fibromyalgia, POTS, Chronic Fatigue Syndrome. In fact, any conditions that are hard for doctors to precisely identify, localize, and treat tend to be treated with skepticism, which means the people who have these conditions are treated as suspect.
For a variety of reasons, the medical profession seems to be on guard against being duped or swindled by a supposed horde of lazy malingerers, “head cases”, and just plain drug seekers. I suppose all three exist, and hospital personnel probably do meet them more than most of us. But huge numbers of disabled people are tarred with this suspicion, which poisons what should be a collaborative and trusting patient / provider relationship. When you are in the hospital, by necessity, and that’s how they feel about you, your can’t even get away. You’re stuck needing treatment from people who won’t give it to you, but in a weird way won’t let you go either.
I am lucky that I have never experienced this for myself. It’s a huge problem that still needs a lot of work.
If you want to read my hospital blog posts again, from start to finish, here are the links:
Tuesday, April 28, 2015
Hospital Blogging! Part 5
I am home again after just shy of a week in the hospital being treated for pneumonia. Aside from having to go in the first place, things could not have gone better for me. Of course, being in my own place again is bliss.
I have been an inpatient at my local hospital I think 5 times now since I moved back to my hometown in 1991. Roughly speaking, each stay has been an improvement on the last in terms of how they dealt with my disabilities. Like all hospitals, there are bureaucratic absurdities and staff that just don’t get it. But for me at least, things have gotten steadily better. Maybe the best thing about this is that when I am very sick, I don’t hesitate to seek full-on treatment out of fear of just being in the hospital. Unfortunately, I have known many disabled people who can’t say this.
If I had to choose one factor that can either make or break how hospital staff deal with patients who have long-term disabilities, I would pick flexibility.
More recently trained providers seem to have an easier time reconciling their need to follow procedures with our need to do things differently due to our disability and self-care routines. The very best mesh the two so smoothly that you don’t notice any conflict at all. These are also the ones who have a knack for introducing new ideas for our better health going forward, without making us feel threatened or criticized.
My experience this week was that by far most of the staff at this hospital are flexible in this critical way. A few of them seemed uncomfortable with the words, phrases, and tones that had been carefully drilled into them. A collaborative approach seemed uncomfortable to them. That’s okay, it doesn’t have to be perfect. In any case, I’d say 75% of the nurses, doctors, and technicians who treated me had no trouble being in charge in the best way medically, while never treating me like a subordinate or worse, a failure for being there.
Flexibility, the willingness to see and do things differently, allows hospitals to offer the best of both worlds to disabled patients. They provide safe, expert, authoritative treatment and advice for acute illness that is beyond us, in an environment that does not rob us of our hard-won independence and agency.
Sunday, April 26, 2015
Weekly Wrap-Up
Monday, April 20, 2015
Tuesday, April 21, 2015
Wednesday, April 22, 2015
Thursday, April 23, 2015
Friday, April 24, 2015
Saturday, April 25, 2015
Saturday, April 25, 2015
Hospital Blogging! Part 4
Or, “Tiggers are wonderful things!"
Just to double down on something I mentioned a couple of days ago ...
One way to tell you’re recovering from hospital-level illness is when you start caring again about things you stopped caring about for awhile. For instance, putting on pants and a t-shirt instead of just underwear and a hospital gown. Being a very small guy, I had to wear a gown with Tiggers all over it, and I have to admit, I kind of dug it because Tigger is one of my favorite of the Winnie the Pooh-via-Disney characters. I’m tentatively due to go home Monday though, so it’s time to begin gradually re-upgrading my general living standards. It feels good.
I think I’ll save the shave until I actually get home.
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More hospital blogging:
Hospital Blogging!
Hospital Blogging! Part 2
Hospital Blogging! Part 3
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More hospital blogging:
Hospital Blogging!
Hospital Blogging! Part 2
Hospital Blogging! Part 3
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Mainstream Article on Disability Etiquette
Ana Swanson, Washington Post Wonkblog - April 24, 2015
You can’t swing a deceased feline in the Disability Blogosphere without hitting lists of advice from disabled people, offered to non-disabled people, on how we prefer to be treated. I think it’s a great exercise for ourselves, and I’ve seen some nice feedback from non-disabled readers, so I know some of them are reading and getting something out of it, too.
This Wonkblog compilation of a Reddit thread is unusually good reading of this kind, and best of all, it’s in a mainstream publication … two of them actually if you count the complete and original back and forth on Reddit. I am especially pleased because I agree with everything on the list. Most of the commenters are saying what disability activists and bloggers say all the time, but I love the irreverence and novelty of how some of these folks explain things. For one thing, they are almost completely free of disability jargon.
I do wonder … Reddit being Reddit … if Ana Swanson intentionally left out angry ableist responses. It's understandable if she did, since she set out to compile good advice, not online hate. However, if there were any ugly comments in the thread, it would be educational to see a sample of them. There is a reference to the common phenomenon of the hyper vigilant, self-appointed guardian of “handicapped parking,” but that is presented mostly as a misunderstanding. The kind of thing I see a lot is people drawing distinctions between “good” disabilities and “bad” ones, a widespread skepticism and intolerance for any kind of “emotional disabilities,” insistence that disabled people who speak out in any way are “just craving attention,” and of course the fiscal conservatives and Libertarians who resent any penny spent on assisting us that comes out of their paychecks.
People who have positive feelings about disabled people and disability issues sometimes can’t imagine that aggressively hateful ableism really exists. It’s so foreign to their thinking that there is a tendency outside the disability community to discount our tales of horrifying ableism as overreaction or misunderstanding. While one must occasionally correct for hyperbole language, the incidents disabled people describe when they let their hair down and really share are quite real. And there are some true haters out there who have special, very intense little resentments directly aimed at disabled people.
I would love to see a compilation like this that not only catalogs online ableism, but categorizes it as well into its most popular themes.
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