Saturday, May 9, 2015

Poly Sci For Disabled People - Part 3: Government and Bureaucracy

Word cloud around the word Politics
This is the third in a 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 3: Government and Bureaucracy

- Because so many of our support services come directly or indirectly from government, we tend to blame “government” in the broadest sense when things aren’t going well, or when we feel humiliated by the systems that are supposed to support us. Some of the most anti-government people I have met are people with disabilities who rely on government for their everyday well-being.

- When bureaucracy becomes frustrating, we may look towards more private solutions … such as private schools, charities, and religious organizations. These all have a role to play, and can help keep larger, more established programs, including government agencies, on their toes.

- These different directions also coincide with some of the major mainstream political parties and philosophies commonly debated. Conservatives and Republicans tend to distrust government solutions and hold up businesses and private charities as better avenues to meet human needs. Liberals and Democrats tend to view government approaches as more likely to do what needs to be done consistently, and to remain accountable to citizens.

- It is important for disabled people to evaluate the role of the government and private sectors in terms of which is best equipped to meet disability-related needs reliably, consistently, for everyone ... not just here and there or for a lucky few who make the right connections.

- Probably the most common model in the United States is disability services provided directly by local, private not-for-profit organizations, funded and overseen by state or federal programs. It’s a hybrid public / private model with both advantages and disadvantages. One of the disadvantages is that it is easy to become confused about who, exactly, is responsible for good or bad services, and who, exactly, we should be talking to to make changes.

- It is also important to think about the limits of the for-profit business model for providing vital services. Disabled people are equally valuable as human beings and citizens, but our disability-related needs aren’t always … or even often … equally profitable. Someone is always coming up with new ways to make meeting human needs "pay off” in the conventional sense, but it rarely works out as well as planned, and in the end, people on the receiving end tend to be left holding the bag, without backup.

- Another reason disabled people sometimes turn against government programs is that even when they try to do the right things, they tend to do them in top-down, impersonal, ham-fisted ways. Sometimes that’s unavoidable. Closing large institutions and sheltered workshops is going to be traumatic for some disabled people and their families no matter what. However, disability policies do better when they are developed under the guidance and leadership of disabled people.

- “Nothing about us without us,” isn’t just a nice thing for disabled people, it’s essential for making good disability policy and services.

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Friday, May 8, 2015

Apple Followups

Photo of a vintage Apple Macintosh computer
A couple of months ago I blogged about possible disability uses for the new Apple Watch. It looks like folks are finding unexpected uses already:

Max Plenke, News.Mic - May 4, 2015

Also of note, well-deserved recognition for Apple’s VoiceOver, just one of the many accessibility features installed standard in all Apple devices.

Buster Hein, Cult Of Mac - May 6, 2015

I’m honestly not on Apple’s payroll. It’s just that I’ve been using Apple things since the late ‘80s, and I’ve met many disabled people who swear by their accessibility tools.

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Thursday, May 7, 2015

Throwback Thursday

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

Accessibility Road Trip Followup.

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Stannis & Shireen

Sunday’s episode of Game Of Thrones (Season 5, Episode 4) included a surprisingly tender scene that moved me as a disabled person ... specifically as someone who grew up with disabilities from childhood.
On left, Stannis Baratheon, balding middle aged man on left Shireen Baratheon, teenaged girl with scarred face
The scene involved Stannis Baratheon, one of the contenders for the Iron Throne of Westeros, and his daughter Shireen, who’s face is deeply scarred by Greyscale, a deadly disease she caught as a young child. In the medieval culture of the show, Greyscale is viewed as dangerous and shameful, something like leprosy, and Shireen does spend most of her time all but hiddden away in her chambers. On Sunday’s show, she asks Stannis:

“Are you ashamed of me, father?”

I wish Stannis had started with a simple, “No.” Still, his reply was touching.

Stannis tells Shireen how a Dornish trader gave him a doll to give her when she was a newborn. The doll was contaminated with Greyscale, and she contracted the disease before this could be discovered. Stannis continues:

"I was told you would die, or worse, the Greyscale would go slow and you’d grow just enough to know the world before taking it away from you. Everyone advised me to send you to the ruins of Valyria to live out your short life with the stone men before the sickness spread through the castle. I told them all to go to hell."

"I called in every maester on this side of the world. Every healer, every apothecary. They stopped the disease and saved your life. Because you did not belong across the world with the bloody stonemen. You were the Princess Shireen of House Baratheon. And you are my daughter."

I read several “special needs parent” blogs, and this speech sounded familiar. There's a distinctive combination of obstinacy, pride, and a tinge of sadness. Obstinacy in a refusal to give in to perceived pressures to "give up on" a disabled child, pride in being a disabled child’s champion, and sadness at what the child has had to endure, with possibly some deeply buried parental guilt as well. As in real life, I have mixed feelings about these reactions. It’s hard to process the idea of being in any way a disappointment or source of regret for one’s parents, even if it’s layered over with love and devotion. Also, I noticed that Stannis' speech ends up being more complimentary of him than of Shireen herself. He never did directly answer her simple question.
On left, Tywin Lannister, old balding man in armor, on right Tyrion Lannister, little person in armor
On the other hand, I much prefer Stannis’ reaction to what we saw last season on the same show, in which Tyrion Lannister’s father, Tywin, finally revealed his true feelings. Like Stannis, Tywin “accepted" his little person son as part of the family, but grudgingly, more out of a sense of obligation than of love. Tywin is ashamed of his son Tyrion, and he admits to Tyrion’s face that he’d have preferred to drown him in infancy, but couldn’t "because you're a Lannister of Casterly Rock.” It parallels Stannis' declaration, but out of Tywin’s mouth, it rings hollow, a twisted form of family pride that Tyrion, for one, could do without.

The way parents accept their disabled children is subtle, and not always easy to assess from the outside. “Game Of Thrones” is remarkable in how it examines life with many kinds of disabilities. It also gives remarkable insight into the many ways families deal with disabilities.

Side note:

According to this Facebook post, the actress who plays Shireen Baratheon has a disabilitty of her own, Osteogenisis Imperfecta. I wonder how her real life experience enriches her portrayal.

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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.