How To Tell If It's An Institution

Some signs that a place might be an institution

Social skills for autonomous people Tumblr blog

The first thing I thought of when I read this post was a speech I heard at an Independent Living Center conference, I don’t know how many years ago. The speaker was talking about how institutional care facilities for the elderly and for people with cognitive impairments were becoming more sophisticated in how they marketed themselves. They had caught on to the fact that people no longer just accept nursing homes and large residential facilities, and are looking for care solutions that feel more “home-like”.

As a result, the lines between true Independent Living and “prettied up" institutional care were being blurred. They still are. And many people with disabilities in need of daily assistance are genuinely confused about what is “independent” and what is “institutional”. The speaker ended her talk with a bullet-point list of questions a person might ask themselves to realize whether or not they are living independently. I don’t remember all or even most of the list, but here are a few I do recall:

"Do you own the utensils you eat with?"
"Do people have to knock and wait for you to answer before coming into your room?"
"Do you have a lock on your residence with a key that you hold and control?"
"Do you choose the people you live with, or whether or not to live with anyone at all?"
"Do you decide what and when to eat?"
"Do you own the sheets and pillows on your bed?"

When I heard these questions, it felt like a bubble popped in my head. All of a sudden I realized that independent living wasn’t about the number of roommates you have, whether you rent or own, or even whether you live on your own or with your parents. It isn’t about doing what you want or some concept of “control”. It’s about ownership, privacy, and personal boundaries. It’s more about “how” and “who" than it is about where. You can't fake these things with extra potted plants or ice cream on Sundays.

If you’ve never even come close to needing extensive daily care, you may not understand how important this is. If you have spent time in an institution, or have come close, I hope this rings true to you.

Photo Of The Day

From the Disability Curious Tumblr blog.

CRPD Hearing Today ... Act Now

This is a call-in week for the UN Convention on the Rights of Persons with Disabilities, (CRPD), which will once again be discussed in a Senate Foreign Relations Committee hearing tomorrow, November 6. I pretty much said my piece about the CRPD last week, so this week I’ll just post a few more links about the fight for Senate ratification and the opposition to it:

Opinion: Menendez and McCain: Ratify disabilities treaty

Sen. Robert Menendez and Sen. John McCain, USA Today - November 4, 2013.

"This treaty is consistent with our nation's interests and values. The Senate should ratify it this year."

Right-Wing Groups Gear Up To Oppose Disability Rights Treaty, Again

People for the American Way - November 4, 2013

"While right-wing groups circulate irresponsible rumors about imaginary impacts of the CRPD, international disability rights advocates are left without an important tool for their work – the United States’ approval of international standards based on US law. The Senate now has a second chance to listen to common-sense voices of support for the treaty – including leading disability rights, civil rights and business groups – and reject the unhinged rhetoric that brought down the treaty last year."

Today, First of Two Hearings on Disability Treaty Convenes
Andrea Shettle's Tumblr - November 5, 2013

"The disability treaty issue is not just an important issue about disability rights. It is also a major test for the Senate to see if they can bridge their political differences and work together on a common cause. Disability rights has traditionally been an issue that legislators of all parties can get behind. We have to remind them that they cannot stop now."

Convention on the Rights of Persons with Disabilities - Action Center

Sign a petition, write, email, call, and Tweet Senators on the Foreign Relations Committee.

If you really want to dig into the details and find out why ratifying this convention is both worthy and essential, watch this video:

Photo Of The Day

From the DISABILITÀ - TOE MOUSE Tumblr blog. I don’t need one, but I want one!

Disability News

I set my Google News page to find disability-related stories using keywords, "disabled" and "disability", and I pick a few that interest me ...

New Transportation Department rules seek to make flying easier for disabled passengers

Joan Loway, Associated Press - November 4, 2013

I’d like to know more about the change allowing up to two wheelchairs to be transported within the passenger cabin. That could make a real difference, allowing more wheelchair users to keep their wheelchairs close, and not have to wait for baggage handlers to deliver them.

Disabled Baltimore Woman Mauled To Death By Own Dog

Rochelle Rictchie, CBS Baltimore WJZ - November 3, 2013

It’s a terrible thing to happen to someone, of course. But I can’t help also worrying about what people might do with a happening like this. The idea that people with disabilities are terribly vulnerable and in need of special supervision lies pretty close to the surface of most peoples’ minds, and random mishaps are easily spun into overblown “problems” in need of restrictive “solutions”. On the other hand, I am one of those people who says, "Why a Pit Bull?"

Disability Studies: A New Normal

Cecilia Capuzzi Simon, New York Times - November 1, 2013

It’s nice to see an article on Disability Studies programs, but this left me underwhelmed. I don’t know whether the reporter only half understood what Disability Studies are about, or if Disability Studies programs actually are a bit stale and superficial these days. It just seemed like the concepts mentioned in the article are the same that I heard in the early ‘90s, and are probably covered in the first week of Disability Studies 101 classes.

Followup: The Sick Children Meme

I think I’ve found the answer to my question from yesterday ...

“Desperation Porn”.

Kara Ayers describes exactly what I was thinking about, and astutely positions "Desperation Porn" as a polar opposite to "Inspiration Porn", confirming my vague feeling that the two kinds of Internet photo trends are linked.

Images of disability sure are loaded. I'm starting to understand why modern day Muslims and some Chrisitans through history rejected images of God. No matter how you depict something so inherently emotional and packed with meaning, you're going to piss someone off.

I'm gonna keep posting photos, though.

Photo Of The Day

From the Disability Curious Tumblr blog.

Quote

“There is a huge difference between, ‘Be empathetic, care about other people, think of somebody other than yourself,’ and ‘No matter how badly you’re being treated it’s wrong to be angry’ … It’s good to be the bigger person, but you're not obligated to not be angry."

— Linda Holmes, “Pop Culture Happy Hour”

The Sick Children Meme

Is there a name for that thing where people blog photos of gravely sick children or teens and ask for donations, “Likes”, prayers, etc.? I see it a lot, especially in the Facebook news feeds of particular people I’m connected with, but also on Tumblr blogs. I am instinctively repulsed by the phenomenon, (though let me be clear not by the images themselves), and associate it in my brain with ableism and “inspiration porn” in relation to disabled people. But, then I wonder if it really is in the same category, since what I’m looking at is people who are acutely ill, not disabled. What’s the deal here? Are there darker, weirder psychologies behind this trend, or is it just about simple compassion and I should lighten up?

On The Teevee ... Star Trek: "Plato's Stepchildren"

Star Trek: The Original Series

"Season 3, Episode 10 - "Plato's Stepchildren”

Available at Netflix.com and HuluPlus.com.

“Plato’s Stepchildren” is about many things. In fact, there might be too many messages packed into this episode of Trek. If forced boil down this episode’s message into one sentence, I’d say it’s, “Power corrupts.”

However, the episode does have some disability-related ideas as well, mostly involving Alexander, a little person or "dwarf" as he is called on the show.

Here’s the setup:

The Starship Enterprise is lured to a planet by a distress signal, and finds a small colony of people living out a sort of simulation of an idealized ancient Greek republic, guided by the philosophy of Plato. They called for help because their leader has a life-threatening leg wound. Through “mass eugenics", they have evolved into incredibly long-lived people, but a side effect is that they have zero immunity, so a scratch can kill them. The Enterprises away team soon finds out that the Platonians (as they call themselves) also have psycho-kinetic powers. They can move objects and physically control people with their minds.

Except for Alexander, who is one of the Platonians, but is a “dwarf” and also lacks the psycho-kinetic power. He’s basically the Platonians' slave, servant, court jester, and general whipping-boy. On top of their unique biology and mental power, the Platonians have become lazy, arrogant, and cruel. They have convinced themselves that they are superior in every way … that they have attained a state of purity and perfection that makes them inherently better than everyone else, especially Alexander. They believe that their power justifies their behavior. In fact, they have convinced themselves that they are being democratic ... that anyone in their little republic can achieve power if they have the mental strength. Ability, in their view, both signifies and justifies power.

The rest of the episode is a bit of a mess, though full of scenes that Star Trek fans adore. The Platonians try to force Dr. McCoy to say with them and become their physician. To that end, they torture Captain Kirk, Spock, Uhura, and Nurse Chapel by making them dance and sing, smack themselves around, and act out weird scenes … all through their mind control.

Meanwhile, Alexander pretty quickly finds himself liking the Enterprise visitors, especially since they treat him with respect right away, and tell him that in their society, size doesn’t matter, and nobody has psycho-kinetic powers. When Dr. McCoy discovers a very specific, un-mysterious cause for the Platonians' mind control power, it not only helps resolve the standoff, but also undermines the whole idea that physical and moral qualities go together. Physical abilities are mostly arbitrary, a matter of luck and happenstance, not a signal of favor or superiority. And physical prowess certainly doesn’t guarantee morality. Alexander is twice the person the other Platonians are, even without physical perfection or amazing mental powers.

What I like about Alexander here is that he’s complex. He’s certainly not a villain(*), nor is he a goody-goody. He is morally superior to the Platonians, but he's no angel. He gets angry. He contemplates revenge. But, when offered the opportunity to gain the Platonians’ powers, he refuses, realizing that he could very well become just as corrupted as they are. And Alexander shows great tenderness and compassion towards the Enterprise crew … people he’s barely just met … when he sees them suffering at the Platonians’ hands as he has for so long.

There are no massive disability insights here, but it’s a nice, generally satisfying depiction of disability.

Episode Summaries and Discussion:

Mission Log: A Roddenberry Star Trek Podcast

Episode 065: “Plato’s Stepchildren"

Star Trek Challenge Review: Star Trek TOS “Plato’s Stepchildren”

YouTube video by TrekChallenge

(*) Alexander is played by Michael Dunn, who had a recurring role on the TV show, “The Wild Wild West”, as Dr. Miguelito Loveless … frequent evil adversary to the hero, James West. I haven’t watched that show in decades, but I’m pretty sure that Dr. Loveless being a little person isn’t an accident, but rather is a classic example of physical deformity or abnormality being equated with evil.

I Can Stop Blogging Now, It's Been Done Perfectly

Dear 16-year-old Stella,

Stella Young, Letters To Thrive - October 4, 2013

I just read this “Letters To Thrive” contribution by the Editor of Ramp Up, a disability website affiliated with the Australian Broadcasting Corporation. It was posted earlier this month, and has been reblogged many times, so I’m sure tons of people have already read it. But everyone needs to read the letter, so I am posting a link to it here. I want people with disabilities, young and old, male and female to read it. I want parents of kids with disabilities to read it. I want teachers and counselors and disability service providers to read it. And it couldn't hurt for everyone else in the world to read it, too.

A lot of it is about sex and relationships, but it’s about so much more than that, too. If aliens landed and destroyed all disability-related writings except this one, I think we’d still be in pretty good shape. I really almost feel like I can stop blogging now, because this says it all.

(Halloween) Photos Of The Day

"6 of the Scariest Abandoned Mental Asylums in America"

From HowStuffWorks.com via the Independent and Visible Tumblr blog.

I'm posting this picture and link to more like it, not to trivialize the abuses of mental health care with the levity of Halloween, but to emphasize the true horror of institutionalization of the mentally and physically disabled.

Awakening

Is this college application season?

I was just thinking about when I was applying to colleges. If I’m right about the timing, it would have been the fall of 1984 that I spent sorting through the application packages of the 5 colleges I chose to apply to, and working on those application essays. I really wish I still had copies of those application essays, but I don’t. I do remember that somewhere in the essay portion of each application, I talked about my disability.

My recollection is that I described my disabilities with only a moderate amount of detail. I then made some kind of statement that even though I had disabilities, I emphatically didn’t want to pursue any kind of career or even interest in disabilities in general. Essentially, I made as passionate a case as I could for avoiding becoming part of any sort of disability community. At that time, in my head, it seemed like an honorable, even heroic stance. And for what it’s worth, I got 4 college acceptances, including my first choice, so I guess nobody saw my writing about this and said “Yuck!”. Nobody in my high school years ever introduced me to another way of thinking about disability. I didn’t know anyone else with a disability. The only images and ideas about disability I was exposed to were either intensely medical … which bored me, and pitiable ... which of course I wanted no part of.

It wasn’t until the Gallaudet University student protests for a Deaf President, which took place during my Junior year in college, that I first started to absorb the idea of disability as a social issue, something like race and gender. That’s also when I first saw or heard of disabled people being bad-ass as disabled people, not as people overcoming or masking their disability. So really, what started to turn me around wasn’t any particular person or role model, and it didn’t come from an intentional process of education or persuasion … it happened because an event happened that had nothing to do with me directly, but which I felt connected to in a way that surprised me.

I wonder if this is still a common progression for young people with disabilities? Or, are there more opportunities now for youth with disabilities to learn about disability from different perspectives, and have earlier “awakenings” to their disability identities?