what if: prisons as health care (and, obvi, if health care were good)

A couple of weeks ago as we were walking into the prison, one of the other volunteers was pointing out to me which buildings housed prisoners on death row.

Someone had shown her earlier that week, a guy who runs an art program exclusively for the guys on death row.  She asked him how working with those men differed, if at all, from working with men in the general population, and she told me a story that he told her.  He'd asked the men he was working with what they missed most about life outside.  One of them responded, "Killing."

I'm not naive enough to think that we're in there working with a bunch of Andy Dufresnes.  Come on, now.

But this, "Killing," struck me.  My first thought was, "Holy shit," and my second thought was, "Wow, are we humans diverse."

My third thought was of something in this book I'm grateful I read a long time ago:

Human beings, for example, come in a variety of heights, and many of those considered "normal" are unable to reach high places such as kitchen shelves without the assistance of physical aids -- chairs and step-stools.  In spite of their inability to do this task without special aids, they are not defined as disabled.  Nor are the roughly 100 million people in the United States who cannot see properly without the aid of eyeglasses.  Why?  Because the dominant group -- like all dominant groups -- has the power to define what is considered normal.  In contrast, people who use wheelchairs, for example, to get from one place to another -- to "reach" places they cannot otherwise go -- do not have the social power to define their condition as within the boundaries of normality, that is, as little more than a manifestation of the simple fact that in the normal course of life, people come in a variety of shapes and sizes and physical and mental conditions. (19, the bolding is mine)

What a privilege to be considered "normal." And not just in relation to dis/ability.  I took these photos at Walgreens the other day -- a classic example of normalizing Whiteness (and objectifying Women of Color).

What we do with people considered not behaviorally "normal," Mr. "Killing" being a very good example of one, is put them in prison.  Obviously, I understand that Mr. Killing is likely a danger to those around him and that it would be irresponsible for those of us with more mental/moral? wherewithal to let him just do his thing.

But again, normal is socially constructed when what's actually normal is variance.  We've (in the United States especially) eschewed the latter notion in favor of demonizing/obsessively punishing deviation from dominant norms.

If Joaquín were here (in my blog, which would be weird), he would argue that Mr. Killing made a choice, and that we all have choices, and that some of us are just bad.  And so when people believe that, that it's possible for a baby to come out bad, then we'll just have to agree to disagree right there.

But if you're with me that all of us are born basically good*, then come with me:

Mr. Killing isn't inherently bad.  He's definitely not "normal" -- My guess is that there's some mental illness going on there, by mainstream standards.  But he's part of the human spectrum.  He is.

So how do we deal with that?

Fourth thought: What if Mr. Killing's mental illness got treated with the loving support and collective persistence with which mine has been treated?  By "normal" standards, obviously, the manifestation of mine -- crying so much all the time -- is a lot less ugly than his -- killing and missing killing.  But what if we suspended our dominant senses of normalcy, took up the reality that variance is what's normal, and took responsibility for this Mr. Killing being a part of our human community?

What if prisons operated under a healing rather than a punitive paradigm?  I'm not talking about "rehabilitation" the way it's traditionally used in conjunction with prisons.  I'm talking about what if prisons were sources of health care**? (And what if the stigma of mental health care were removed to the extent that mental illness might be regarded as urgent and as treatable as, say, cancer?)

I just wonder how that'd be different.

Fifth thought: Architects came up with the principle of "universal design." It's the idea that you build a building so that it's accessible to everyone from the jump; you don't design the building and then add the ramps on.  Educators took up the term to think about designing learning experiences that all kids can access.

I once had a student do a research project on universal design and make this playground.  I wrote about it here.  Note the title of the post.  Hell.

What would a health care system designed under the principles of universal design look like?  Radical given our current state of affairs in the US, sure, but I really don't think I'm asking for too much.

---

That train of thought stopped when we got to our classroom and got to work.  But then, at the end of class, one of the incarcerated teachers and I were talking, and he told me that he'd had a really hard week: His best friend of fifteen years had hanged himself.

He'd died of depression.

My friend is sad, but he prefers to use the term "disgusted."  Prison officials knew, he said, that his friend was suicidal, because (1) the friend had attempted suicide before, and (2) my friend had reported his recent behavior to the guards.  Real shitty health care providing, right there.

(I've never wanted to hurt myself, but I have thought that it would be really nice if I could just get some terminal illness so that I could go to bed forever and people would leave me alone.  Or I've thought that I wouldn't really care if the plane I was in crashed.  And when I told my doctor that, she expressed concern and commenced a really thorough treatment plan.)


---

Just because I was curious, given how mental illness seems to be all but disregarded as a thing, I looked into how the criminal justice system deals with mental disability.  (And I'm not really certain how the distinction between mental illness and mental disability gets made?) Well it is, by the way, illegal (as of 2002) to execute a prisoner with "mental retardation" -- cruel and unusual punishment, the Supreme Court found.  But different states define "mental retardation" differently, and vary on whether to give the responsibility of deciding whether a person who's been convicted is "mentally retarded" to the judge or the jury.  Oh great.  I'm sure that system is working really well.

---

* Over the last couple of years, Ron has helped me to revise this "everyone's born good" thesis of mine, to one more nuanced: He says, "We're all more sacred than we realize, more broken than we realize, and more salvageable than we realize.  In that order."  So that complicated my point here a bit.

** And oh don't I know how shitty mental health care (and diagnosis) is and has always been.  

candor. ha.

I have a vivid memory of being at an IEP meeting for Conor years ago, can’t remember when.  I was a little kid, not sitting at the table with my Mom and his teachers, but I was listening.  As a goal for that year, the teachers were suggesting that Conor be able to do the grocery shopping for our family.

(In those days, I very often did the grocery shopping with my Mom.  Doing the grocery shopping for our big-ass family meant two overflowing carts at Aldi and one at Jewel.  It took hours.)

The idea was that Mom would drive Conor to the grocery store and wheel him in with an envelope in his lap containing the list and some money. The grocery store staff would then wheel him around and get all the stuff.  Then, they’d bring him up to the front where the cashier would ring up his cart and take the money from the envelope.  Finally, they’d call my Mom to pick him up.  This was supposed to be a way that Conor could contribute to the family, that he could take on a chore.

Okay, for those of you who haven’t gotten to spend any time with our little man, check it:

My Mom lost her shit at that meeting. 

A couple of weeks ago, at another such meeting, she was thanked for her “candor” in response to another ridiculous goal set for Conor.  This time, the goal is: “With no more than three verbal prompts, Conor will independently eat at least twice per month with 50% accuracy for three consecutive months by January 13, 2016.”   What a serious crock of shit.

I don’t think I blame the staff at his day care center.  He’s able to go to this center (despite Illinois being the worst state in the Union in terms of services for adults with disabilities) because he’s got state funding to do so.  In order to keep the state funding, he’s got to prove that he’s working toward and meeting goals.  Always improving. 

HOLY FUCK, WHY?

He should get the services he needs because he needs them, and they cost what they cost. 

The header of the goals sheet they provided reads, “These goals help me to achieve my dreams and assist me to be as independent as possible.  They are what matters most to me and have been decided by myself with the assistance of those who are closest to me.  My support team will help me in achieving these goals by making sure I have all of the necessary supports and materials to make my dreams into a reality.”  I can see how such a statement might apply well in the cases of people whose ability profiles include more communicative capacity than Conor’s.  But in the case of Conor, how seriously disingenuous.

Conor’s experiences with this kind of “goal-setting” brings into focus for me the broader fixation that education policy-makers and professionals have with fixing people.  When I think, “Holy shit, just let him be,” I must also wonder who else (and how else) is also being done so heinously wrong by the way we approach education.  Onward and upward!

Old movies, why must you hate so?

Last night I watched An Affair to Remember on TV. I'd been meaning to watch it for a while. I generally like old movies like that, even when I don't like them, since the dialogue sounds so funny. Not funny haha, just funny odd. I think it's cool to see how different they are from movies now.

It goes like this: Cary Grant and Deborah Kerr meet on an ocean liner headed back to New York from a nondescript European location. Grant is a world-famous lady-killer on his way home to marry a filthy rich heiress and thus secure his lavish lifestyle; Kerr is the poor-but-beautiful-nightclub-singer-turned-housewife-in-training of some wealthy New York businessman. Aboard, they fall in love, much to the gossipy amusement of their fellow passengers and the ship's photographer who acts a bit like a modern-day paparazzi. (Actually, they really get into one another when the ship is docked for a few hours near his grandmother's home and they go and visit her. What I want to know is where the hell they are supposed to be docked. They get there after at least one, maybe two nights aboard the ship. It's tropical, and you sort of get the sense that her late husband was some sort of colonial official. But what tropical destinations lie two-days' journey away from Europe on the way to New York City? It is a movie, I realize.) Anyway, they decide that they want to be together forever, so they vow to meet one another at the top of the Empire State Building in six months, giving them enough time to break it off with their current beaus and enough time to do some hard work and save some money on their own. When the evening of the meeting finally arrives, he's *SPOILER ALERT* there waiting, but she gets hit by a car as she's rushing up to meet him. He's humiliated; she's in the hospital, unable to walk again; they're both heartbroken. The rest of the movie sorts out whether or not they'll end up together.

That's probably when I should have turned the movie off.

See, now she has to become a teacher (Oh! The horror! What a tragedy!), so she teaches music at a Catholic elementary school. There's an unnecessarily long scene in which she's directing the choir, and all of the lovely little children are singing about resisting temptation, blah, blah, blah, and there are lots of little solos built into the oh-so-cute song so that the camera can close-in on their adorable little up-turned faces. Then, for the first time in the scene that's been going about three minutes, the camera pans over two Black children's faces just in time for them to part through the choir from the back row to the front to do some silly minstrel-like dance and sing-song verse that's totally separate from the song's melody. (Y'know, it's not unlike McCauley Culkin's little "rap" in the middle of MJ's "Black or White" video, now that I think about it.)

The kids are back a few scenes later to visit their beloved teach while she rests at home (or maybe it's in a hospital?). This time, the Black boy gets to open the scene for he children by asking, "Is she going to be okay, Doc?" only to be quickly corrected by the children's accompanying priest, "Call him, Doctor!" How dare that boy not codeswitch!

I googled around a little bit looking for commentary on these ridiculous, racist, and highly removable scenes, but couldn't really find much. There were several reviewers who suggested that the scenes with the children were unnecessary inasmuch as they distract from the shmoopie love story.

And as if that shit weren't enough to make this movie a "not" for me, much of the justification for the lovers' agonizing separation after their fateful missed connection is that of course she can't tell him that she's disabled! How terrible and disgusting and unlovable! Hhhhhhhhhhhhhhh...

more borrowing of other people's writing

from one of the respectable writers for The Daily Illini

(I'm freaking out about these proposed budget cuts.)

Ill. institutionalization should be abolished

Katie Dunne

October 7th, 2008 - 12:00 AM

Imagine that your home is an old brick building that houses 300 people. You've grown accustomed to the stark white hallways and dull living spaces, but you'll never get used to that stench of urine. Meal times are scheduled, rules are posted, and dissent is not tolerated. During the most intimate activities of daily life - showering, using the bathroom, having sex - you are supervised by a complete stranger, and there is nothing you can do about it. Imagine your life without a voice.

There are thousands of citizens in Illinois that don't have to imagine; this is their reality. They are not prisoners. They committed no crimes. They were simply born with developmental disabilities.

In 2004, the state of Illinois spent nearly $350 million (about $120,000 per person) operating public institutions for people with DD. Most residents did not choose this living arrangement and do not need 24-hour care. Many could live in the community with appropriate support and services for less than $40,000 per year.

But Illinois refuses to progress. It refuses to do what makes sense, both economically and ethically. It refuses to close large, state-operated facilities, as many other states have done. Instead, Illinois relies entirely on institutionalization, which leaves us ranked 51st in the nation for providing community living arrangements for people with disabilities (out of 50 states and Washington, D.C.). Providing humane and dignified services is simply not a priority. Legislative victories are far more important.

In 2004, Gov. Blagojevich agreed to reopen Lincoln Developmental Center, which had been closed for poor treatment of its residents, in exchange for votes on his pension plan in the General Assembly.

Lincoln, which was described by the Chicago Tribune as a "monstrous, money-chomping, isolated institution," is a gem compared to Howe Developmental Center in Tinley Park, Ill. Between September 2004 and July 2008, 23 people died at Howe, and autopsies were never conducted. The institution remained open.

The neglect and abuse continued. One resident at Howe was sent to the hospital with a mouthful of cigarette butts and treated for nicotine poisoning.

The federal government soon got involved, federal funding was pulled, and the U.S. Department of Justice launched an investigation of human rights abuses. Finally, three weeks ago, the state declared its intention to close the facility. Twenty-three deaths we can handle, but we'll do whatever it takes to avoid bad press.

In Illinois, people with disabilities are treated as second-class citizens. They are herded into institutions and given remedial jobs in "workshops" that are often far below their ability levels. They are paid less than minimum wage, often less than one dollar a day, which is completely legal based on the Fair Labor Standards Act. (Ironic name, huh?)

So what can we do to change?

The state of Illinois must end its policy of segregation. The ultimate goal of the state should be closure of publicly operated institutions in favor of community-based living options, which are more cost efficient and provide a better quality of life for people with disabilities.

In addition, the state should comply with national standards for care and services. If we follow the federal government's rules, we can maximize federal funding.

"Money Follows the Person," a federal funding program, should be implemented in Illinois. Today, if an individual chose to move out of an institution, he would lose his state funding. If money followed the person, he could use his funding to pay for an apartment, transportation, and a personal assistant. A "Money Follows the Person" program would give individuals more options and allow for greater independence.

Many people with disabilities imagine achieving this independence. They imagine living on their own, working in the community, hiring their direct support staff, and leading a fulfilling life. They imagine having a voice.

The state of Illinois can make this a reality if it reexamines its priorities and makes a commitment to systemic change. Let's stop imagining and give people with disabilities the rights they deserve.

Next stop:

THE ISLAND OF MISFIT TOOOOOOYYYSSS!

My Dad says that all the time, not just at Christmas time. It's from that stop-motion animated Rudolph movie that I've seen about a gazillion times. Jess put it on in the background while we put up our tree and lights. I never realized as a kid how uncool-ly the movie treats disability. Poor, Charlie! Check it out below. Mom, where were you on this one?



But seriously, that's kind of a whack message to send to kids about differently-abled folks (Toys, I know. Whatever.)

shameful

I am reminded by the article below of how grateful I should be to have grown up in the family that I did. (Um, family, before you get all big-headed, you should know I'm talking about Conor, here. But seriously,) we were taught that you take care of those who can't take care of themselves no matter how difficult it may be to do so; because, it's the right thing to do. I wish that kind of thinking were more pervasive.

from today's Wall Street Journal

Hard Times Hit Home for a Band of Five in Illinois
Stuffed Animals are Packed in Boxes; Victor Wilhold's Uncertain Future

by Clare Ansberry

HIGHLAND, Ill. -- Five friends, one blind, another an amputee and all developmentally impaired to some degree, are losing their home here next week.

Community Link, the nonprofit agency that runs the group home, can no longer afford to keep it open. Its main source of funds, the cash-strapped state of Illinois, owes it $1.4 million. Positions have been consolidated and spending has been cut back. Last week, John Foppe, Community Link's executive director and himself disabled, went to the local bank and begged for a new line of credit to make his payrolls. Even if it's approved, the home will be closed.

Highland group home resident JoAnn Webb holds Victor Wilhold's hand.

Movers arrive Tuesday. The five will end up in three different homes spread around the county. Their belongings -- mainly clothes, stuffed animals, puzzles and little ceramic statues -- are being packed in boxes.

The agency is trying to make the move smooth but acknowledges it will be disruptive to everyone, particularly Victor Wilhold. Mr. Wilhold, 59 years old, is the eldest, chronologically, but the most childlike of the five. Born with Downs Syndrome, he is largely nonverbal and functions at the level of a three-year-old.

In the past, when his routine was changed, he grew reclusive, retreating to a darkened closet with an assortment of toys, according to his sister, Mary Harris. "I'm afraid he will go back into his shell," she says.

Over the years, he and the other four residents -- three women and one man -- have formed their own makeshift family. Sometimes they bicker. One is stubborn, another feisty and another is a mother hen. But they also care for each other. If someone is sick and can't go to a movie, the others vote to stay home.

Ms. Harris asked Community Link to keep this little family together in their next residence, but that would mean displacing other people there.

What is happening in this southern, largely rural corner of Illinois is echoed around the state as a history of low funding for community living collides with the economic crisis, forcing drastic cuts. People with disabilities are being moved into larger, unfamiliar settings or spending their days idle because vans no longer take them to sheltered workshops to do jobs for pay.

The residents of the group home in Highland, Ill., which is closing Dec. 2.

"Even in decent economic times, Illinois was not a state that funded people with developmental disabilities to the extent that other states have," says Lilia Teninty, director of the state's Division of Developmental Disabilities.

Illinois came in dead last -- 51st -- among all states and the District of Columbia in providing small residential settings for people with developmental disabilities. In terms of overall spending for community programs, it ranked 43rd.

Community Link hasn't been paid by the state since July for many services. Mr. Foppe and his staff whittled budgets, eliminating small bonuses, rug cleaning and renovation plans.

Although helpful, those cuts weren't nearly enough. Reluctantly, he decided to close the Highland house.

It was the smallest of six such homes, which has meant more freedom, privacy and choice for residents. It was also the most expensive to run for those same reasons. Moving to something bigger is a step in the wrong direction, Mr. Foppe says, but he has little choice.

Having been born without arms and learning to use his feet to drive, eat and dress, Mr. Foppe isn't easily discouraged or frustrated. But he is becoming both. "Even a sponge can only hold so much water," he says.

Chris Gebke, who runs Community Link's community-service programs, had the delicate task of figuring out where to move everyone. Jane Webb, who is legally blind and prone to seizures, needs a private room so that she knows where everything is and doesn't trip on a roommate's belongings. Her furniture must line the walls. Her shoes and slippers need to be tucked under a desk.

Smoking Break

Lorraine Cousino's family wanted to make sure she could go freely outside in her wheelchair and smoke a cigarette after dinner. That meant moving her to a house with a garage so she would be protected out of doors.

JoAnn Lange wanted a house close to a nursing home so she could volunteer.

Victor Wilhold used to carry dozens of stuffed animals from room to room. Now, he leaves them on his bed. Above, Mr. Wilhold and his favorite bear.

Ms. Gebke met with employees of the homes, reviewing seemingly small but important details. Allen Korte has a special shampoo. You have to let Mr. Korte make the coffee in the morning or he gets upset, she told them.

Even with all the details in place, she worries. Ms. Lange will be leaving her hometown, where her 78-year-old father lives. The highest functioning resident, she learned to use public transportation to volunteer at the local nursing home. She has cancer and her support group is there.

She cried when told of the move. "All my relations are here. I'm originally from Highland. Now I've got to move my routine," she says.

Ms. Cousino says she will miss the neighbors, especially the boy next door. She met him when he was three and has watched him grow into a teenager.

In 'His Happy Spot'

But it will likely be hardest on Mr. Wilhold. His sister, Ms. Harris, says he was shuffled through a series of inappropriate settings after his parents died, including a nursing home for old people. And he was put on medications for conditions he didn't have, for reasons she doesn't understand. He came to the Highland House in 2002.

When he first arrived, he kept to himself and his stuffed animals, carrying dozens of them throughout the day from room to room. Renae Donohoo, who works at the home, couldn't get him into the van without putting a Tigger from "Winnie the Pooh" there first.

"Now he leaves his animals on his bed," she says. "He doesn't need them because he's in his happy spot," referring to the house.

He didn't speak growing up, but lately has been saying a few words. "C'mon old lady, let's go," he ordered Ms. Lange.

The others here are protective of him and have come to understand his gestures. When he taps his mouth, he's thirsty.

Ms. Lange leads him by the hand up the driveway when he gets off the bus, and buys him 3 Musketeers bars. After dinner, Mr. Wilhold accompanies Ms. Cousino to the garage for her evening smoke, opening and closing the door for her and her wheelchair. Of the five, she is the most outspoken, but with Mr. Wilhold she is gentle. Outside, she gives him one earpiece of her MP3 player so they can both listen to Elvis.

"I don't how it will be for Victor," says Ms. Donohoo. "He has his own little room here. It will be a big adjustment after all these years."

Fortunately, she says, he will share a bedroom with housemate Mr. Korte, which should make it easier but by no means carefree. Mr. Korte likes to go to bed early. Mr. Wilhold can stay up. Mr. Korte keeps his room immaculate. Mr. Wilhold doesn't.

This weekend, the five friends will celebrate Allen Korte's birthday with his favorite dessert, chocolate cheesecake. He will sit at the head of the table, as he always does. He will have to adjust to new seating arrangements at his new house.

Write to Clare Ansberry at clare.ansberry@wsj.com

62%

That's the percentage of support for special education programming in Alaska that Sarah Palin cut, or, admittedly, so I hear.

Here's Alaska's 2006-2007 NCLB report card for 10th grade reading and writing. Take a looksee:56.9%. That's how many tenth-grade students with disabilities are not proficient in writing.

50.9% aren't proficient readers.

13.6% is the percentage of "Child[ren] Left Left Behind" by a 62% cut in funding to special education. (Also, just visually, I'm finding the representation of students with special needs, migrant students, and students with limited English proficiency pretty odd. Every other graphic shows how much of the "whole" each "part" is. These kiddies are just, you know, hangin.)

And it's not just about the money. Thowing money at students with disabilities doesn't help them learn. But good, smart, dynamic teachers do. Which means that good, dynamic people need to be recruited into the field of teaching. But a low-paying, low-prestige career like teaching isn't exactly as illustrious as six-figures on Wall Street for enough good, smart, dynamic people. And calling students and teachers failures, and then taking their money away from them, is doing nothing for the allure factor.