Sunday, August 31, 2008

Telethons and Pity (Repost)

This is a reposting of last Labor Day Weekend's post on pity. the post is just as applicable this year, as is the blogswarm.

Today is Labor Day, and, to many people, that means it’s time for Jerry Lewis and the MDA Telethon. I had never watched the telethon, and this year I checked it out for the first time. I have to say, I didn’t watch much of it, and it was enough. I am not going to comment on the mission of the Muscular Dystrophy Association (MDA); I am not familiar it. However, I would like to comment on the destructiveness of pity.

1. Pity fosters negativity. The negative aspects of the condition are emphasized and magnified, rather then the positive aspects and enormous potential of the individual's life. Instead of focusing on what a person can do by embracing all their strengths and gifts, pity limits a person.

2. Pity promotes the view of charity rather than the view of inclusion. Charity for pity divides people into 2 groups, the “haves” and the “have nots”. The premise is that the person who “has” will help the person who “does not have,” because the “haves” feel sorry for the “have nots”, rather than because it is the morally appropriate action to do. Unlike pity, inclusion encourages respectful dialogue to discuss ways to adapt to the obstacles of society.

3. Charity often seems focused on making those that contribute to the charity feel warm-and-fuzzy-good about themselves. That is the wrong focus. An action should be taken because it is the right thing to do, because it is fair and just.

4. Although often without consciously recognizing it, the person who is pitied usually has to conform in some way to the giver’s expectations and stereotypes to receive the charity. For example, in extracurricular activities in school, it seems to me that children with disabilities often have to participate in the sport or activity that has the most willing coach or advisor, rather than in the activity that the child likes the best or has a natural affinity for.

5. Pity lowers an individual’s self-esteem. It’s hard to feel good about yourself, when you are seen as a drain and burden on others.

6. Pity towards people with disabilities gives society the false impression that disability and happiness cannot coexist. That isn’t necessarily true, and that simply serves to cause more pity.

7. Another problem with charity for pity is that it can give the impression that once the charitable act has been done, societal responsibilities are finished. A corporation that publicly writes a check to MDA is still obligated to provide an inclusive work environment with fair opportunities even though they likely won’t receive public recognition for those actions.

Check out Protest Pity, The Blog Against the Telethon, for an excellent collection of thought-provoking posts about the telethon from the point of view of people with disabilities.

Friday, August 29, 2008

"Difference is an Artist's Game"

A beautiful video created by Clara Sigmon, a 13 yr old, about her brother David, who has Down syndrome. I found this video via Michelle who says, "it is very powerful and well-written/spoken." I agree! It's 4 minutes long, but well worth the time.

Thursday, August 28, 2008

World Language Survey

Mobility International USA, the organization with whom I traveled to Costa Rica, is conducting a survey to determine how people with disabilities learn a foreign language.

"National surveys show U.S. high school students with disabilities, while increasing in the numbers enrolled in foreign language courses, still lag behind their non-disabled peers in the percentages who study foreign languages. U.S. students with and without disabilities are close to equal in the percentages completing foreign language courses at the higher education level. However, the data does not explain what languages are being studied, how successful the learning experience is, and what are the barriers and benefits for people with disabilities at all ages. Are you a person with a disability from theUnited States who is interested in taking a survey about foreign language learning and disability? The National Clearinghouse on Disability and Exchange seeks your and other individuals with disabilities input and experiences.

Take a 10-minute Foreign Language survey online here:

I took the survey, and they ask questions about my language interests, how I study languages, and travel. It took about 5-10 minutes. Any help you can give MIUSA would be greatly appreciated. Thanks! For more info about the survey please go to MIUSA's newssite.

Thursday, August 14, 2008

"People with intellectual disabilities deserve only one r-word: Respect"

Thanks, Ruth for sharing this beautiful video from The ARC of Virginia and The ARC of Northern Virginia. It sums up the issues well.

Monday, August 11, 2008

Thunderous Dehumanization

3 polar bears, one disintegrating from a broken heart with the words, Sticks and Stones can break my bones, but words will really hurt me

The R rated movie Tropic Thunder directed by Ben Stiller comes to theaters tomorrow. The film coins the phrase “full retard” to describe one of its characters.

Journalist Patricia Bauer prescreened the movie and shares some of her observations:

“Stiller’s character, Tugg Speedman, is presented as a fading action hero who earlier failed in his bid for Oscar glory while portraying Simple Jack, a character with an intellectual disability. Speedman’s portrayal of Simple Jack is featured as a movie within the movie.”
Bauer describes the stereotypical protrayal of a person with a cognitive disability,

“In character, Stiller speaks in a stilted, stuttering, adenoidal fashion, and wears overalls, bad false teeth and a classic institutional bowl haircut.”

Bauer tallies the number of times slurs are used in the movie and finds (approximately):

“Number of repetitions of the word “retard” or its variations: At least 16 in the “full retard” scene alone, not counting the uses of words like “idiot,” “moron,” “moronical,” “imbecile,” “stupid,” “dumb” and “the dumbest M*****F***** that ever lived.” All are used to describe the character of Simple Jack, who is described in an introductory segment as a “mentally impaired farm hand who can talk to animals.”

Number of repetitions of the word “nigger”: Once, said by a black character criticizing a character pretending to be black.

Number of uses of other racial/ethnic/sexual epithets: None observed.”

According to the New York Times a Dreamworks spokesperson says that the movie is a satire of the excesses of Hollywood. I’ve always been annoyed by the portrayal of persons with disabilities by temporarily able-bodied people in pursuit of Oscar or Emmy nominations, and I would truly love to see a film that satirizes the Hollywood portrayal of PWDs. However, I’m finding it hard to believe that Ben Stiller is really making a sophisticated societal satire in the vein of Mark Twain’s Huckleberry Finn. Mr. Stiller’s past films, seem to have the common theme of going for crass and crude humor, although the joke is on the zipper mishap or fart or whatever, not on an entire group of people. And, it’s not like Dreamworks is advertising this movie as a societal satire. According to Bauer,

“Early promotion of the film described Simple Jack as a “retard” and an elaborate DreamWorks marketing website that was taken down this week in response to complaints carried the tagline ‘Once upon a time … There was a retard.’”

The Dreamwork website is not advertising Tropic Thunder as a societal satire, but rather quotes critics who call the movie a “knockout of a comedy” and “the funniest movie of the summer.” So, I forgive me, Mr. Stiller and Dreamworks. I’m not buying it. Your movie is not a critical satire of Hollywood’s portrayal of the full diversity of humankind. It is another movie that slurs and hurts a large segment of our population for the sake of a joke or two.

I know some people, like one of Bauer’s commenters, would say, “Get a sense of humor!” At the root of this point is the belief that cognitive diversity is not a part of humankind, and making fun of this “other” group is no big deal. And since when does one group get to tell another group that they cannot be offended by slurs, epithets, and derogatory stereotypes? Do whites get to tell blacks to not be offended by slurs? Do whites get to tell native peoples to not be offended by dancing Indian mascots? Do men get to tell women to not be offended by curse words or sexual innuendos?

I’ve written before about the pain the word “retard” causes. Like all outrageous and socially unacceptable racial and sexual slurs, this word inflicts deep pain. Dave Hingsburger over at Chewing the Fat writes a powerful letter to Mr. Stiller explaining how much it hurts to see and hear the R word.

“You hurt me a second time today, Mr. Stiller. I am writing to tell you, to hold you responsible. I arrived home and saw on a website that it is now possible to buy tee shirts with the phrase 'full retard' on it. You are responsible for this Mr. Stiller, you wrote those words, you chose those words, you went public with those words. It is you, and only you, who must bear the consequences for your actions.”

“Full retard” t shirts?! More satire, right?

Autistic has an on-point video about the power of words.

Addendum: Thanks to Ruth for this link to a statement of solidarity "recognizing the dignity of individuals with intellectual disabilities" and signed by many organizations including The Special Olympics, National Down Syndrome Society, and more. Check it out.
A 2nd Addendum: Checkout 2 stories on NPR. "If one group laughs at the expense of another, we don't call that humor, we call it humiliation," explains Leonard J. Davis, Professor of Disability Studies at the University of Illinois. And Timothy Shriver, chairman of the Special Olympics explains why the r-word is hate speech.
Picture credit: Human Policy Press

Wednesday, August 06, 2008

Not Today… I have an appointment…

a red desk calendar turned to the month of June, with the days x'd off

I haven’t been in the blogosphere much this summer. Early in the summer, I had a death in my family. But mostly I feel like I have been swallowed up by the appointment gods.

Other than regular physical therapy, I didn’t have too many health related appointments during the school year. As I focused on my first year of college, I had kind of forgotten about the appointment world, that medicalized life. But, now, this summer, I’ve had to pay the piper. Here’s how I’ve been spending my time over the past few months :

An MRI without anesthesia (MRI machines don’t like spasms)
An MRI with anesthesia
Bone density scan
Orthotist appointment for AFO check (Hey! I don’t need new AFO’s!)
Orthotist appointment for neck splint (splint was of no help)
Physiatrist appointment
Two dentist appointments
An orthodontist appointment
An eye doctor appointment
A pulmonologist appointment
Two sleep apnea studies (hard to sleep during those!)
Wheelchair maintenance (although my role was staying home without my chair; my mother went to this appointment and the 3 appointments for van lift repairs without me.)
Wheelchair repair (despite above maintenance, my chair broke at a highly inopportune time – away from home, just before I was to give a presentation at the Illinois Youth with Disabilities Leadership Summit)
Computer training classes to help me learn Spanish Dragon, Spanish Soothsayer Word Prediction, and increase my use of keyboard shortcuts (to decrease neck pain) once per week for several weeks.
A meeting with my Department of Rehabilitation representative
A physical therapy appointment three times a week most weeks.

Because I knew that this summer would be heavy on appointments, I opted out of summer school. Good decision. And, I regularly scheduled recharging time – including a great trip via Niagara Falls for my sister’s graduation in Massachusetts, several family gatherings and some serious downtime – movies, sports, games. Unfortunately, I was not able to work on any projects that I wanted to work on --- frustrating because the busy-ness of school is right around the corner.

During this summer of appointments, I reacquainted myself with the old challenges, annoyances, and vulnerabilities of this aspect of living with cerebral palsy.

Appointments eat up so much time. So much physical energy and so much mental energy. Mentally preparing for the visit, physically getting ready to go to the appointment, the car ride, looking for a wheelchair accessible place to park our raised roof van, waiting in the waiting room. All this before anything is even accomplished. As a person with limited stamina, the time issue alone is major, even though I have learned a few tricks from others. Although health care facilities have accessible entrances, their procedure rooms, exam tables, and cafeterias tend to be one size fits all. Quite a bit of energy goes into figuring how to make things work for me. By the time I get home, my energy is sapped and it feels as though my day has been taken away from me.

Some healthcare and service providers seem completely oblivious to the fact that seeing them is not the highlight of my week. Some, no, many, use the opportunity to tell me about what a difficult day they are having – a busy schedule, an "impossible" job, even another patient who is difficult. While these problems may make a valid impact on their day, I don’t want to hear about it. I often feel the unspoken message, “I hope you are not going to add to my hassles today, David.” And, listening to the secretary’s or repair person’s woes is just a waste of my precious time (see number 1). Just as I am not at this appointment to make someone’s day miserable, I am also not here to make the day pleasant. I am here to meet a need that I have. Simple as that. I am here not because this is how I’d like to spend my day, but because I need some tool or advice to be able to do what I want to do.

There are some unspoken appointment etiquette rules that a patient must follow. And these can drive me nuts. I don’t know if small talk drives everybody crazy – maybe it’s just me or just because I have so many appointments, but I get really tired and annoyed with chitchat. I don’t always feel like being polite and making small talk with providers and staff. If I am tired from other stresses or in a bad mood, I feel like I have to hide that. There’s a performance aspect to many appointments that is difficult to describe – be nice, friendly, and sweet. And if I’m called “buddy” or “honey” by someone who is meeting me for the first time, I just smile. Sometimes I feel an underlying message that being liked gets better care. (This coupled with number 2 above multiplies the aggravation. And, of course, number 1 – my time- goes downhill as well.)

4. APPOINTMENTS ALWAYS LEAD TO MORE APPOINTMENTS. More tests, more procedures, followup appointments, etc., etc. I am learning from my mom to always question whether I really need X procedure and could I return in 6 months instead of 3 months and let’s have Test A while having Test B.

Finally, even though I think I am secure in my identity, multiple appointments could consume my identity if I let them. I have to tell myself that I and my time are worth demanding repair service or prompt attention for a need even when the provider finds the timing inconvenient. Running through my medical history or listing what I cannot do or being poked and prodded and told what’s “wrong” with me is really wearing on the self esteem. I try to keep my guard up, because you never know when an ego blow might come. I have to work to not let myself get sucked into the idea that I am defined by somebody else’s list of my “problems.”

I have to add that I have some wonderful providers and have met some wonderful staff – people who are thoughtful, respectful, and efficient with both their time and my time. I am so very appreciative of them, their expertise, and their attitudes. And I even have a handful with whom I do have a personal relationship. But, even under these circumstances, going to an appointment is never how I’d choose to spend my limited energy. There’s a lot else to do with my life!