Wednesday, May 6, 2015

Poly Sci For Disabled People - Part 2: Rights, Not Privileges

Word cloud around the word Politics
This is the second part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 2: Rights, Not Privileges

- As disabled people, we sometimes get confused about the difference between rights and privileges, between accommodation and favors.

- Because equality for disabled people usually requires being treated differently, you will sometimes hear accessibility, accommodations, and supports described, in a mean way, as “special privileges.” The idea is that things like handicapped parking, workplace accommodations, and financial supports make our lives easier than everyone else’s. 

- You have the right to accessibility and individual accommodations to your disability. These are not privileges you have to earn. They are not favors you have to rely on kind people to do for you. They get you closer to equality, not superiority or higher privilege.

- You earn human kindness and friendships by being a nice person. You may find you can earn an easier life, including some luxuries, by hard work and ingenuity. But you don’t have to earn your continued existence, or equal respect and opportunity.

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Tuesday, May 5, 2015

This Old (Accessible) House

Icon of a house
Eliza Mills, Marketplace - May 1, 2015

It’s good to see that This Old House is going to deal with home accessibility again. I have a vague recollection that they did some shows like this sometime back in the early ‘90s.

Focusing on disabled veterans is a good idea, but it would be nice if they would cover some other situations, too … like elderly folks who want to stay in their own homes, families with disabled kids, and young adults with disabilities of other kinds.

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Monday, May 4, 2015

Poly Sci For Disabled People - Part 1: Money

Word cloud around the word Politics
This is the first part of a multi-part series of posts on disability and politics. My aim is to air out some thoughts and ideas that I think are important for disabled people to consider as we here in the U.S. gear up for another General Election in 2016. We all have our own political beliefs and natural leanings, which probably don’t change much just because we have disabilities. Still, having disabilities does give us insight into some important political and policy questions … insight that others might not have.

At the same time, I think that we are also sometimes vulnerable to some popular political opinions that tend to make us feel less important, less worthy of consideration and even political power than we should be as disabled citizens.

Take these thoughts for what they are, ideas to chew over.

Part 1: Money

- Fighting for money may be our least favorite activity. We would rather be fighting for accessibility, equal opportunity, and respect. Yet, we have to keep doing it. For most of us, money is our most useful adaptive device, and for many of us, it’s very, very hard to get enough of it purely through individual effort.

- “Benefits” and "Entitlements” aren't dirty words. You may be entitled to certain benefits because of your disabilities, and also because you are a citizen. You are not a second-class citizen because you need support from your fellow citizens, even if you need a lot of support.

- There are always better ways to spend money supporting disabled people, but don’t let anyone weigh whether supporting your needs is “worth it” to the taxpayers. For one thing, you are a taxpayer, too, whether or not you have a job.

- Money paid to you in benefits is not “lost” or “wasted” in any sense. It is exactly as valuable as money you earn. It buys things you need, and the people who sell those things to you make profits and feed their families with the money you pay them.

- Even if you don’t have a job now, chances are that you had a job at some point in the past, and may well have a job sometime in the future … maybe a good job, with good wages. If and when you become more financially independent, you will pay in more taxes to support your fellow citizens when they need it.

- You will hear people suggest that there “isn’t enough money” for the things disabled people need to live in health and dignity, to make the most of ourselves. Keep in mind that it is all about priorities. No matter what happens with the economy, programs and people that we really care about most get the funding they need. There is no reason why disabled people shouldn’t as well.

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Saturday, May 2, 2015

Poly Sci For Disabled People

Word cloud around the words Political Science
Introduction

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.

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Friday, May 1, 2015

Disability Blogger Link-Up

The word Blog surrounded by word cloud
Use the blanks below to share a blog post or article on something related to disability.

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

Throwback Thursday

Illustration of the time machine from the film "Time Machine"
A year ago in Disability Thinking: Book Preview.

Criptiques is still essential reading.

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Bloggy, Podcasty Stats

I decided to take a look at some statistics for the Disability Thinking Blog and the Disability.TV Podcast.

The word "BLOG" written in white chalk on a gray slate blackboardFirst 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.

World map with countries listed below in color
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

US map with states listed below in color
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











Microphone icon
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.

Wednesday, April 29, 2015

Notable Tweets

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

Hospital icon on the left, active wheelchair icon on the right
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:


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Tuesday, April 28, 2015

Hospital Blogging! Part 5

Hospital icon on the left, active wheelchair icon on the right
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.