Where Do I Even Start????

Yes, it HAS been a while.

Just over a year ago I took on a new job... actually a new carreer, and to be honest with you, it ate my lunch. I did fine at work... during the day... at my job. But when I came home at night I did not have two brain cells to rub together.

But... I did have a dear daugther with a rare and devastating condition (let's talk about that later, shall we?) A college kid... other issues... and a husband with a commuter job.

Advocacy took a back seat.

In fact Advocacy sat in the 'way back' and I just threw graham crackers at it when it sounded hungry and hoped for the best.

It seemed like it had to be that way. I needed to survive these changes.

But what the heck has been going on while I was away?? We have been SLAMMED!!! I am not pleased.

As one of my favorite characters (in the only movies I ever really watch... sigh...) says "Prepare to meet Mrs ANGRY EYES!!

Do NOT ever tell me again that fictional stories  popularized by the media don't have anything to do with the treatment of people with disabilities--especially cognitive disabilities--ever again.

Ever.

Read this article... go ahead. I will be here when you get back!

This article says that a judge in Texas cited Of Mice and Men (a story by John Steinbeck) as justification for executing a man in Texas with a low IQ for a crime in which he played role.

Executed.

Dead.

On the basis of fiction.

Was he the mastermind of this crime? Um, no...

Were the supports in place to help him interpret his circumstances and make appropriate life choices on a day-to-day basis?

Obviously not.

Marvin Wilson could not possibly understand the ramifications of what happened.

AND the supports to make him successful were clearly NOT in place,

Despite this, the people who should have been helping him are alive and he is dead.

(And some will tell you execution is actually MORE expensive than a life sentence, but I digress...maybe only  for people who have someone to appeal???)

So... Fiction matters. Tropic Thunder matters. The "R-word" matters.

In fact they could be a matter of life and death.

I am right. Just accept it.

People, better educated and with more power than you or I will ever have, are LISTENING to fictions. Are INFLUENCED by them. Are making life decisions for all of us based on them.

Steinbeck's own son put out a statement saying he was appalled that his father's story was being used to justify the killing people with disabilities.

Frankly, I hated Of Mice and Men in high school.

Because it was effective.

And horrifying. Great writing, horrible meaning.

But Sr. Margaret Mary said that the point was NOT that people with intellectual disabilities are dangerous, but that there are situations that could make you question your accepted mores... and she was NEVER wrong. Really.

Yet, if it had come out during my daughter's lifetime I would have been first in line at any protest. I would have seen it as dangerous and would have taken my lumps for saying so.

I read.

And people without subtlety always end up with power.

And yet I was not part of this discussion. I was distracted.

Good heavens.

Forgive us Lord, for our treatment of Marvin Wilson.

Forgive me for not doing my job to ensure Your mercy and justice are heard.

I am sorry. Amen.

Unexpectedly Effective Advocacy: Strategic Use of Information II

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make information one of the most effective tools in your advocacy toolchest. I wrote about the setting some parameters about what to present and what not to present to support your goals a couple of weeks ago.

Now, you do NOT need to be perfect or understand EVERYTHING to advocate. And doing SOMETHING is always more powerful than doing nothing, but as a community we have full lives and want to get the most impact for any of our advocacy efforts. We don't have time or energy to waste--we need to think strategically.

I was pondering this at work this week and I thought something I learned as a nurse might help... When nurses are learning to adminsiter medications we are taught a little 5 item checklist that helps us keep track of what we are doing. When giving meds nurses need to make sure they have:

-The right patient
-The right drug
-The right dose
-The right route
-The right time

We call this little list the 5 Rights (clever, huh?) and when I think about it, this little list has some parallels in advocacy.

The right patient. It is obvious (I hope) what this means to nurses--and their patients!

In the case of advocacy I think this would mean consider your audience. Who are they? What do they want? What are their responsibilities? What do they know? What do they worry about?

Are you talking to self-advocates, parents (new or seasoned?), professionals, activists, college students or children? Or someone else entirely...

Adjust your presentation accordingly. Your examples, use of jargon and demeanor may need to change to meet the needs of a different audience--don't give the children's presentation at grand rounds at your local medical center.

The right drug. Again, it's fairly obvious how this applies to nurses. Advocates can translate this to "right message." Presenters--whether at IEP meetings or before congress--want to have a consistent pro-disability message.

Bobby Silverstein, famous for advocating for disability rights and his role in writing the ADA when he was on Sen. Tom Harkin's staff, gives this framework for issues that are pro-disability. He says pro-disability policy lead to greater:

-Equality of opportunity
-Full participation,
-Independent living and
-Economic self-sufficiency. (Bobby Silverstein, 2003)

Right dose. Patient tolerance for medications are very individual and specific. Too much of a medication can kill....too little will not be therapeutic.

The disability advocate needs to consider this thoughtfully. When we explode or over-do in our advocacy we can kill our issue with our audience... but if we do not say enough or say it strongly enough it won't be effective. Fortunately, there is a whole spectrum of possible responses between those two extremes. Attention to this issue alone can increase the effectiveness of your advocacy immediately!

Right route. Nurses need to know if a med should be given by mouth, injected or rubbed on the skin--these are not interchangeable!

Advocates need to consider whether their particular audience will respond most to 'heart' or 'head' messages. Or a combination of the two. What media should be involved? Consider using story. Author Robert Putnam points in his book Better Together that stories have the "...possibly unique ability to express thought and feeling simultaneously..."

Right time. Suffice it to say WHEN you take your pills matters. Some need to be given on an empty stomach, others need to be given with food, or close to bedtime, or not...

Advocates also need to consider WHEN they approach their audiences with their messages. Sometimes you must respond when the iron is HOT--the issue is burning now and being heard NOW is necessary if you want to have an impact. Other times it is best to strike when the iron is COLD--when the issue needs a long term approach or shouldn't be handled at the same time as some other burning issue.

For example, when the movie Tropic Thunder came out disability groups needed to put together a visible response immediately--protesting it a month later would have been useless. But working with the studios to increase their understanding and their working relationships with the disability community was a long term project that needed to be handled over time. (In fact we are starting to see the effect of those efforts now!)

I think having a framework for handling information strategically could be useful whether you are working on an individual need, or trying to change the world. Not as a formula, but as a framework for considering your options. Give it a try, let me know how it goes!

Picture from here.

Media, Disability and Opportunity

Let me draw some lines here.

This Tropic Thunder protest:



Led to this:



Yes, I have posted this before, but now Dreamworks will be including it in the Tropic Thunder DVDs and possibly shown in theaters as well.

It also led to this issue of The Bridge from The Advocacy Center in Rochester.

And this nomination:



Led to this local news piece:



Sue assure us that she did NOT say what they say she said about poor government programs--and she did NOT say that she joined the our local Down syndrome group to get those services (which is a good thing since our group offers support, education and networking opportunities, and not services!)

Now,

We could spend our time quibbling over and claiming (or even demanding) credit for the doors that have opened so far...
Or we could go through the doors while belittling the efforts of those who have opened them...
Or we could spend our energy gatekeeping who can or can't go through the open doors or by pulling them closed behind us...

But let's not do these things, OK?

We have some exciting opportunities here folks. Let's not waste them. Let's build on them. Let's find ways to do this together--the possibilities are exciting.

PS: Big treats coming up soon! Here's a hint:

Midnight Lessons: Rosa Parks and Tropic Thunder

I work the ovenight shift and a while back while I was filling my teacup with some very necessary caffeine one of the patients wheeled her way into the dining room. I asked her if she wanted something to eat, and while she waited for me to get her tuna sandwich and gingerale, two of the CNAs I work with walked by. They were laughing and one said to the other, “I’m not going to the back of the bus!”

They walked through and when I gave Mrs. R. her sandwich she was chuckling. She said that nowadays everyone understands that being made to sit in the back of the bus is wrong—it’s become such a common understanding that people just mention it in regular conversations. She laughed and said, “When it first happened you never would have known that it was going to take off.”

“Really??” I said.

“Yes,” she said. “There was Rosa Parks getting arrested, and all of the actions and riots and everything.

“And all around the country, folks were saying that even if they were allowed to sit in the front of every bus in the country, it wasn’t going to change prejudice. With all the serious issues that prejudice was causing (and still causes)—people were quite literally dying, you know—many people thought that fighting about bus seats was a waste of time.”

“I never knew that,” I said.

“Oh yes, the Civil Rights movement was quite split over it. Some people used it and said their fight—whatever it was—was a fight for respect too, just like Rosa Parks. Some people ignored it or put it down—those folks made themselves a harder road, but that’s the way people are.

“There were so many Civil Rights efforts going on around the country, but Rosa Parks having to move to the back of the bus was something EVERYONE could understand.”

Mrs. R. finished her sandwich and went to bed (after telling me about her years as a teacher and about her sons and grandsons that make her quite proud.) and I went to look up Rosa Parks on Wikipedia (Well, not right then, but when I had a chance!)

The article about Rosa Parks was interesting—what an upright and committed woman she was. My patient’s perception of the Civil Rights movement of the time wasn’t reflected there, but that might just have been her view, I really don’t know.

It is interesting to me to think about that conversation and the Disability Rights movement—especially in the last year or so. Until the last couple of years—with a few notable exceptions—the Disability Movement has been a pretty tentative thing.

There are many reasons for this:
-Uniting is hard—we all compete for the same funds.
-We want to be pleasant and grateful so as not to be de-funded or otherwise abused.
-We are busy leading within our organizations—we don’t have the time, energy or know- how for outreach.
-We can’t agree on styles of protest.
-We don’t agree on what’s worth protesting.

These and other issues weakened us.

Lambs wishing really hard that the lions would become vegetarians is the image in my mind.

Not an empowered approach!

Over the last couple of years it seems the disability movement is coming of age. We have come to recognize that we have more than hopes for fair treatment—we have rights. And we can do more than wish about these rights—we can expect them. This has changed our approaches and I for one am very pleased to see it.

I don’t know if the country-wide response to Tropic Thunder will be ‘sticky’ enough (read The Tipping Point and Made to Stick) to help the disability movement progress as it could, but it seems to have the potential in many ways: diverse groups have united for the first time, they have drawn a line in the sand, people around the country have gotten on the bandwagon—the relationships and the momentum built here could be used to bring us all forward.

In Rochester I am excited that diverse organizations are gathering to talk about respect for people with disabilities. That they are thinking in new ways, planning new respect initiatives, making new connections to build the expectation in our town that the voice of disability will be heard. No one is talking about the barriers or the systems—we are looking for the things we can agree with and do to build what I refer to as Presence, Credence and Influence.

The Tropic Thunder protest was not just about a movie or a word. It was about disrespect. The disrespect that allowed this movie to be made this way is the same disrespect that makes teachers feel that more corporal punishment for people with disabilities is acceptable. That disrespect is the same disrespect and disregard that allows neglect, abuse, system vs. consumer-driven living and all manner of other indignities.

At a fundamental level our society sees disability as diminishing and the people who have disabilities as lesser beings—or superior beings—either way, not as one of “us.” And historically people can accept truly horrible treatment of "thems."

It is time that this stopped.

This summer people heard voices saying this for the first time—in a place where they all go, about something they can all understand. This can become a launching pad or a stumbling block.

For myself, I’m hoping it’s a launching pad.

Picture from here.

Blog Carnival, Tropic Thunder and other Bits and Pieces

Thing one: Blog Carnival #43 is up at cherylberyl. I didn't write for it this time, but I wouldn't miss reading it!

Thing two: Check here to see the follow up on the story of Rudy Wallace who I wrote about back when I started this blog. There has been a little justice--nowhere near enough.

Thing three: Free Words Hit Like A Fist cards here.

Thing four: here are some more bloggers weighing in on Tropic Thunder:
Lovely and Amazing
5 Minutes for Special Needs
Equal Not Special
Tristan and Chanelle
Beneath the Wings
Wheelchair Dancer
The Special Parent
Evergreen Digest

The visible solidarity that the disability community has established (for the first time) has the potential to potentiate our other efforts to establish ourselves in our communities. Our next steps, now that we have raised a few waves is to sustain the energy. This is done by building on the relationships you made in your community through this effort and by initiating the next wave of presence/credence/influence.

Video from The Arc of Virginia and Blueberry Shoes Productions

Tropic Thunder Protest: We Did It!

Well, we did it! Rochester joined the ranks of localities where the people with disabilities and the people who believe in them stepped up and were seen. I think it went well—not quite the way I expected, but well.

When we arrived at the theater the news stations were already there and the theater’s manager met us. He told us that we could not be on their property and that he had already called the police. Some of our membership were comfortable with the idea of civil disobedience, most weren’t (I wasn’t, but who knows? Maybe someday I will be…never thought I would ever do even this! I was a nervous wreck before I got there—now, I feel empowered!)

We moved to the road at the edge of the theater’s property which turned out better anyway because we were off to the side at the theater—where we moved to everyone who entered or left the grounds had to deal with us… (Should I send the theater a thank you? What is proper etiquette for something like this?)

There were 35 of us still there when I finally remembered to ask people to give me their contact info…

We handed out a bunch of The National Arc’s fliers on hate speech, engaged with some folks in conversation, interesting conversation. Some people were very receptive. Some weren’t.

One guy said we shouldn’t have been protesting, that our being there made him want to watch the movie. I said that when he did he would hear our voices in his head. He agreed that was true. Would he have our voices in his head if we weren’t there? He said probably not…

He also told us that we could buy a ticket for a different movie and then see Tropic Thunder… I didn’t know you could do that!!!

I tell ya, I was learning every minute.

Parents of toddlers were marching with self-advocates who have been arrested numerous times for civil disobedience. People from the University of Rochester/Strong Center for Developmental Disability and the Transition Project marched with advocates and self-advocates from several different agencies. It was very good.

This experience has given me a very interesting view of the adult agencies in our area—everyone is much more multi-faceted than their corporate reputations imply. This is good to know. Very good to know since my daughter is 14.

My own family was amazing—I was very proud (still am!) My daughter made signs, my son handed out fliers, my other daughter carried a sign and made her own chant, “We Want Respect!” (I love it!!!) My husband did everything--handed out shirts, got beverages, handed out fliers, talked to people, you name it, he was on it. (Yes, I did hit the family jackpot, thanks for asking!)

My new answer for "It's just a word!" is:

THEN YOU WON'T MIND NOT USING IT!

It being no big deal and all....

We were on 3 news stations (here) and in a community newspaper… (One tv station's video doesn't work, and one didn't post their video, but I will link if that changes)

I found out the blogger who writes Not Dead Yet is from Rochester. Yes, a real Blog-Celebrity was there!!! I love when that happens.

The picture above is of the protesters wearing Words Hit Like A Fist T-shirts and carrying signs. Other people took lots more pictures—which I hope they send out.

Note to future protestors: emptying your camera’s memory card before the event is good. Emptying your memory card AND charging your battery would be better! Or so I imagine.

See, learning every minute!

Because this group of diverse and committed believers were there yesterday, I hope other Respect Initiatives in Rochester over the next months will have new context. And the protesters want to meet to create some…

So who has some ideas for some good Respect Initiatives?? Join us, we’d love to have you!

Tropic Thunder in Ra-Cha-Cha

Well, let me just say that trying to plan a local response to Tropic Thunder is making my hair gray and I am NOT amused! (Now these moviemakers are REALLY in trouble!)

Gives me great admiration for the hippies—they made a big splash and did it without the internet. Amazing.

I am working hard on this, and I get a little tired of swimming all day in unfamiliar waters. I am a nurse, nurses do not write press releases!

It is summer, the time is too short, no one has enough time, every agency has 30 other people they have to ask for permission, etc, etc. Everything is complicated and inconvenient. (Yes, I am whining… isn’t that what blogs are for??)

Then something else comes out about the movie and I am renewed.

Yesterday there was a review of the movie in the Rochester paper—it was an AP review. The reviewer, Christy LeMire, called the scene where people with disabilities are eviscerated (complete with catchy slogans) “the funniest and MOST INSIGHTFUL” scene of the movie.

Insightful. People believe that folks with disabilities are ACCURATELY characterized in that scene. Stiller believed it, this reviewer believes it.

Then the actors in an interview on TV say that the disability community shouldn’t be upset because, in context, this scene wasn’t intended to hurt them. This would be like a motorist telling the pedestrian they just ran over, “You don’t understand, I didn’t mean to hit you, so you can just stop your ridiculous bleeding.”

Stiller also said they had screened the movie several times and this didn’t come up…

I thought screening audiences were supposed to be diverse. Did their ‘diversity’ include disability?

Guess not.

Why not???

Oh yeah, I am renewed.

Up until now the disability community has been NICE about everything—with a few exceptions no one makes waves and we accept whatever crumbs society drops on us. We may complain—to each other—but we have never stood up and said ENOUGH!

And this nicey-nicey approach has brought us HERE.

In 2008 it is possible to make this movie and not even know that people with disabilities might care. To be shocked and annoyed when they do care.

In the disability community internal leadership has been great and the gains that people with cognitive disabilities have made are extraordinary. It is time for us to lead in our communities as well.

Tropic Thunder WILL NOT be the only voice heard about disability in my home town this summer.

Tropic Thunder: Start With a Boycott, but Don't Stop There

If all the guys between the ages of 17 and 37 stayed away from the movie Tropic Thunder everyone would notice. Dreamworks would choose new executives. Actors and writers would be concerned about their next job. Word of the 'flop' would be all over the tabloids and the internet.

If all the people with disabilities and their families stay away from the movie the world will not blink. Not only will they not miss our money, but they won't notice that we are not there.

There is nothing different about people with disabilities staying home. Just another day in segregated America.

Do not invest one cent in this movie--but don't stay home either.

Be present.

We want to develop credence: Do something valuable, something the public can relate to, develop some snappy comebacks, write a good letter, show up at a theater and give witness to your existence. Handle hatefulness with such dignity and grace--and perhaps with such humor--that everyone watching sees you as the good guy.

We want to have influence in our own communities, in the entertainment industry, in society.

You must be sure that Tropic Thunder is not the only image of disability that your community sees over next couple of weeks.

You must be sure that the hateful phrases in Tropic Thunder are not the only voice your community hears.

This week is the fulcrum point: the efforts we make will have greater impact because we make them now.

Take action, start today--sleep next month!

Picture from here.

Tropic Thunder: And So It Begins

Well, the movie Tropic Thunder premieres tomorrow and Dreamworks will ramp up their own efforts to have presence and credence in order to influence everyone to buy tickets and merchandise and videos....

There will be a red carpet event with all the stars in California tomorrow. Jack Black is appearing on Sesame Street this week. There will be lots and lots of magazine covers, spots on Leno, Letterman and every other latenight and early morning show they can get time on. There will be magazine covers and articles in the entertainment section of newspapers all across the country.

And advertising--in the paper, on TV, all over the net... Is there more? I am sure there must be more...

According to Media Dis&Dat there was already an article in the LA times where Stiller explained his efforts to portray the racial issues in the movie as important.

(If only he had made the same efforts with the disability issues.)

Every advertisement and interview and event is an instant of 'presence' which will lend 'credence' which will expand 'influence' which will lead to more presence......etc, etc, etc

The agreed on movie screenings for disability advocates were switched from last week to this week--some think that this is because there is so much wrong with the movie. I expect it was to push our response to this week--adding to their presence.

Will the disability community be there to say that we want the words that are spewed on the silver screen in this movie to stay in the theater?

That we don't want to hear hate language in our communities, from our neighbors, or in our schools?

Will we be there to build our own presence and credence and influence in favor of a safe, accepting community where people with cognitive disabilities are considered people that matter?

Here is an idea sent to me by my friend Jan Fitzgerald--you may remember that she was a guest-blogger here in March:

1. Brad Grey – Chairman and CEO of Paramount serves on the Board of Directors for Project A.L.S. (Lou Gehrig disease)

Somehow I would find it difficult to see Paramount making a sick humor movie about A.L.S., do you? Maybe Project A.L.S. would consider asking Brad Grey to step down, considering the lack of sensitivity this movie shows. Is it a reflection of his leadership?

Contact Project A.L.S. at info@projectals.org

2. Want a career at Paramount? If not, then let them know by send an e-mail to: Paramount_careers@paramount.com

Post a comment at this spot: http://www.cinematical.com/2008/08/06/faux-tropic-thunder-promo-offends-lots/

3. Paramount, the maker of Tropic Thunder is owned by Viacom. From the investment section of their website it states:

Viacom's goal is to be the world’s leading, branded entertainment company across television, motion pictures and digital media platforms.

If you go to this link: http://www.viacom.com/contact/Pages/default.aspx

From there you are able to send an email.

If it is indeed Viacom's goal is to be the world’s leading, branded entertainment company across television, motion pictures and digital media platforms, then maybe they should stop investing in Paramount and their poor choice of movies including Tropic Thunder.

Thank you, Jan.

Keep those cards and letters coming! (Who used to say that???)

EDIT: Boycott Planned

Read more here.

Tropic Thunder, Tidal Waves and Words Hit Like A Fist

What the disability community decides to do or not to do over the next 3 days will determine the quality of life of people with disabilities—all disabilities for the next 30 years. If you think I'm exagerating check here and here.

This week your agency doesn’t matter. Your diagnosis doesn’t matter. Your philosophy does not matter.

The only thing that matters is whether you can get beyond all of the things that divide the disability community and DO SOMETHING THIS WEEK a in response to the poison that the release of the movie Tropic Thunder is about to spew on us.

If you put your agency, your diagnosis, or your philosophy first—in any way—we will fail.

We have the potential here to gain more than we ever have as a community or lose more than we ever have and it is up to US.

Here is the Terri Theory of Making Waves (I do this as a presentation and it there’s a lot more to it, but this is the condensed version because time is short.)

Visualize this wave starting as a splash and working its way up, higher and higher—I envision it getting wider and broader, til it becomes a tidal wave.

There are 3 essential components:
• Presence
• Credence
• Influence

These components interact and expand the others—without all three nothing changes.

Presence: Be there. Be visible, in, among, belong, be seen, be heard.

Credence: This speaks about the KIND of presence you need to have. You must build something with your presence—poor presence will set your cause back. To achieve credence you must be:
• Assertive. This means seeing yourself as an equal among equals—there is no begging for crumbs or attention or anything else. Assertiveness is respectful and expectant (rather than demanding.)
• Relentless/tireless. Presence to have credence is not sporadic and it does not quit because it meets resistance. It is constant—this matters as much as what you do.
• On message. Your presence must send the right message. You must show by your presence that people with disabilities are individuals with gifts and strengths and rights. As Andy Taylor told Opie: “Act like SOMEBODY!”

Influence: This means act like a leader. In disability we tend to stop at education—education is not leadership.

This will come as a shocker to most people—every time I say it somebody faints, but:

Education does NOT change behavior!!!!!!

If it did no one would smoke, drink or overeat—and I would exercise! Someday I will expound on this, but not today.

Leadership means grabbing your presence and your credence and stepping into the fray to cut out what does not belong and build in what does. Education is one tool—sometimes a good tool, but like any tool it is not right for every situation.

If we walk up to movie goers and give them a lecture about why this is wrong or about the details of disability we will fail. We have lots of educating to do, but NOT today.

Leveraging the power of an agency, or group of agencies can also be an incredibly useful tool for influence. But if we walk into next week’s movie opening as this agency or that agency, or this diagnosis or that diagnosis and we do not unite EVERYONE ELSE we will fail.

Today the tool we need is UNITING, not unity—-we do not need to be the same this week. We need a common banner, a common cause and as much diversity of response as we can ignite. Put your logo at the bottom of your correspondence on this topic along with everyone else’s—people will notice (I for one will be impressed!)

We need small actions and big actions with a common title and we need to leverage those using whatever tools we can find. And we need to do it NOW.

Words Hit Like A Fist—Stop it. NOW!

This would be a great banner. Everyone do something.

Organize a rally at the theater—carry that banner, send a press release, take some pictures or some video and post it on the internet under the title Words Hit Like A Fist. Write a letter to the editor--of your paper, of a national publication--and post it on the internet.

If writing press releases is too cumbersome get yourself some of those invitations they sell at the store and fill those in and send those to the press--doing something is what matters, accept no barriers.

Go to the ball game instead of the movie—wear a t-shirt that says Words Hit Like A Fist. Send a press release with that phrase in the title and show what real folks with disabilities are doing—rather than going to this movie. Again post a picture or some video on the internet with the Words Hit Like a Fist title.

Organize a letter writing campaign—get together, send the letters, take a picture… you get it…

Send an e-mail to your church leadership, to the parents that you know...to your family... Leave no one out.

Can your kids make a supportive video? Can they put something on Facebook or My Space? What else can you think of?

Your actions by themselves are good. Supersize your actions. Using the internet, using the same banner, using press releases, or whatever you can think of, will give our presence credence and influence.

So, what are you going to do? The future is ours. We can build it or watch it disappear.

If we act today, to misquote a little Shakepeare, this movie will become ‘a tale told by an actor full of sound and fury, signifying nothing.’

If we do not act today this movie will poison the culture in which we live—like nuclear fallout.

As for myself, I am blogging, I am sending out action calls locally and nationally, I have talked to a local t-shirt maker who can make me 100 t-shirts with the “Words Hit Like A Fist” on it by Wednesday and she will sell them at cost which is $4.50… I am sending out a press release from our parent group about an activity we have scheduled this week…and whatever else I can think of…

Is it a lot? Yes. Is it a lot of scary drama? Yes. Am I too busy for this right now? Of course I am.

But you know what? What I invest over the next 3 days will matter to people I love for years.

I am sucking it up, as the saying goes.

Will you join me?

Picture from here.

Thunder Tropic, Censorship and Other Reflections

First: If I remember my 8th grade history right, Abraham Lincoln said, “I may disagree with what you have to say, but I will fight to the death for your right to day it.

I just love Abe Lincoln and I agree with him.

Censorship—the governmental restriction of expression and media—is wrong. Freedom of speech is an essential right which should not be curtailed in any way.

Influencing people to change their personal expression is NOT censorship. It is LEADERSHIP. No rights are stepped on by asking people to choose to ban disrespectful language from their own lexicon out of respect for us.

Leadership from the disability community may be unexpected because our focus tends to be internal, and it may be unwelcome by those who do not wish to change, but I think it is great.

Second: It happens all the time, something goes crashing to the floor and my kids yell, “But I didn’t mean to!”

And all the time I point out that they are responsible for both the intent AND the outcomes of their actions. I am happy—delighted even—that their intent was never to wreck, damage, or injure, but if those things happen anyway they still are responsible both for apologizing and making amends.

(See more of my thoughts on friendly fire here.)

Third: FYI: An actor does NOT have to accept stupidity, being a total imbecile, etc from themselves to portray someone with a cognitive disability. This is NOT what it is like to have a disability.

It appears that many people believe that this is what actors must do to portray these roles, so the disability community should understand this scene in Tropic Thunder.

Well it isn’t, so we don’t.

No wonder so many portrayals of people with disabilities in movies are so bad.

And just when I was at my most frustrated trying to get all of this into one post Dave Hingsburger posted his answer: The business cards you see posted above!!

Love. It.

The idea is when you have been punched in the face (or the heart) with the R-word, give ‘em a card. They aren’t being copyrighted so anyone can make themselves a stack.

Thank you to Dave and his co-workers for this brilliant response.

Go to Dave's post and see the words on the back of the card, here.

Other bloggers weighing in on Tropic Thunder:

cripchick

Wheelie Catholic

Special Ed Law Blog

Sweet Perdition

Whose Planet is it Anyway

Blog[with]TV

Tropic Thunder: What Can the Disability Community Do?

The movie Tropic Thunder, a movie with very negative dialog relating to cognitive disability is scheduled to be released next week. A coalition of disability groups and self-advocates is meeting with Dreamworks studios today.

I am very pleased by the response of our national organizations and I think they should be backed up by a nation full of local responses. I am not sure, at this late date, that the movie itself can be changed, but I am positive that the disability community can have a role in how the movie is received in our home towns.

Watch this video. The speaker is Jon Warnow who helped organized Step it Up 2007 which made environmental goals such a prevalent issue in our country. I thought their strategies could be applied to increase the visibility of disability issues.

I think that hundreds (or thousands) of local responses could patch together and change the world. So, what are your ideas for what can be done? What are you and your friends willing to try?

Will you :
• Write a letter to the editor of a local or national newspaper?
• Hold an event next week like a ball game, dance, rally, car wash, bake sale, race or something else and invite the press so they can see the reality of life with disability?
• Do something on-line? Engage others? Gain Google rating?
• Instead of hosting an event, invite the press into your real life?
• Support a Self-Advocacy group who is planning a response?
• If you are some sort of expert, make some sort of professional response?
• Plan a rally or protest at your local theaters?
• Write your own movie, play, or song that is better than this one?

What are your thoughts? Ideas?

In any moment of decision the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing."

Teddy Roosevelt

My other post on this topic here.

Mama Bear and Tropic Thunder

When my daughter who has Down syndrome was a baby (14 years ago!!!) I was puttering around my house one spring day with the windows open and there were neighborhood kids out running around. In the midst of my spring-clean I heard it. Some kid in my neighborhood called some other kid a ‘retard.’

My poor husband was completely unprepared for the depth and breadth of my reaction—heretofore he had thought of me as a mild-mannered woman! Fortunately, he sat on me until my urge toward violence passed. (See my post below for the benefits of avoiding violence!)We found out the true meaning of the mama bear instinct.

Obviously kids get insulted in their lives, but my kids were so little I hadn’t been through that yet—and they went after my BABY….

Now, of course, they weren’t going after my baby. But they hit her and they hit me too with their stray word-bullet. And frankly, I think getting hit by stray bullets is just as painful as getting hit by the ones meant for you. Friendly fire is an oxymoron if I’ve ever heard one.

The assault on people with cognitive disabilities has gone on always and people have no idea the harm they do.

As I have mentioned here before (a few times!) I am a Partners in Policymaking graduate and a few years ago there was a seminar in our state capitol for Partners graduates. We had a nationally-known speaker who has been a disability advocate his whole life. He talked to us about how to approach legislators. I thought he was great.

During lunch I found that several of my fellow attendees were EXTREMELY upset. The speaker had begun his talk with a summary of the history of disabilities and used words that absolutely broke the hearts of my friends. He was only trying to illustrate that peoples’ efforts had led to progress, but they had thought they were in a safe place and weren’t prepared to encounter name-calling. They were totally stuck on THOSE WORDS.

I tried to explain that the speaker had used those words to show what didn’t exist anymore.

My friend Jason looked me in the eye and said, “That’s what you think!”

The stories that followed made me sick. No one’s child deserves that treatment—no one at all deserves that treatment.

People with cognitive disabilities learn and think differently than average. I have encountered wisdom, insight, compassion, humor and strength in people with disability diagnoses—and the reverse in a good many folks who don’t have diagnoses.

There is a movie coming out this August called Tropic Thunder that bandies the R-word all over the place and describes the experience of having an intellectual disability as being “moronic, stupid, dumb and imbecilic.”

This movie is geared toward teenage boys and has big-time actors. This characterization is buried in lots of crazy antics that teenage boys love.

Do you think these young guys will pause and ask themselves, “Is this really an accurate portrayal of intellectual disability?”

I don’t.

I think they will carry on the tradition of misjudgement and mistreatment of people with disabilities—including their peer, my daughter. Then she too can have stories to tell that will make you sick.

I think they will grow up and make movies just like this one.

So to Ben Stiller, Robert Downey, Jr. and Jack Black—and their many funders and backers I say, “Thanks guys.”

NOT!

PS: Changing language is not enough to fix the world, but language IS one of the components of oppression (just ask anyone from any religion, race, ethnicity, sexual orientation, or gender who have been oppressed—do any of THOSE words show up in this film???) ALL of the components of oppression must be dismantled—language is as good a place to start as any.

PPS: There was another movie a few years back that combined humor and disability that I actually liked. The beginning was really rough—the characters started out just where Stiller, Downy and Black are now—but the characters in this movie evolved and the characters with disabilities were shown as whole individuals. Teens that I saw the movie with also evolved… so I liked it. Watch The Ringer and see if you agree.

Picture from here.