Sunday, August 31, 2008

Blog Day 2008

According to Britt Bravo at Have Fun-Do Good today is Blog Day and part of the festivities is to share 5 blogs with your readers--outside of your usual arena so here goes:

37 Days: Wonderful writing about life--what would matter if you had only 37 days left. The author, Patti Digh, will be guest-blogging here in September (she has a new book out called Life is a Verb and it is wonderful!)

Nesting Place: Lots of ideas about decorating without tons of $$ or perfection.

Write to Done: Essays about improving writing skills.

Indexed: daily Venn diagrams about life--quirky and insightful.

A Year of Crockpotting: yum!


Saturday, August 30, 2008

Blog Carnival #44: Superlatives: Serendipitest and Sarah Palin

Blog Carnival #44 is up.

Well, since yesterday morning I have been busy making up words to describe the situation that the disability community is suddenly in…

Of all the words I have tried, I think “serendipitest” is my favorite! As in, the 2008 Presidential Election is the serendipitest situation the disability community has ever been in! (My son says my poetic license is about to be revoked!)

But seriously folks—is this not an amazing opportunity?

For those of you who slept through yesterday, Sarah Palin, the governor of Alaska—who has a child with Down syndrome—has been named as McCain’s running mate in the 2008 presidential election.

So now we have a candidate whose stance on disability is detailed on his website, and the other candidate who has not posted a position on disability, but is running with the parent of a child with a disability… hmmmm….

Whether you favor the Democrats or the Republicans in this election, these candidates and the publicity that will surround them present a GREAT opportunity to increase exposure and understanding.

Already today the national press has exposed the country’s ignorance about disability in general and about Down syndrome specifically. We have heard the all kinds of ‘person last’ and ‘person missing’ descriptions. We have heard ever-so-objective reporting about Down syndrome using words like “afflicted” and “suffering with” (bleah!)

And, in a failed attempt to be Relevant (with a capital R) Katie Couric and her co-newsperson discussed whether having a son with Down syndrome made Mrs. Palin unfit for office.


I am not at all sure that being the parent of a baby with a disability QUALIFIES a person for office by itself, but I am quite certain it doesn’t DISQUALIFY them…..

They had to say something… I guess.

Folks, this is a “sticky” moment. We have laid groundwork with years of building inclusion in our communities, we stirred the pot a bit with visible protests of Tropic Thunder this summer. The world is ready to hear from us.

I wrote a post on making waves a few weeks ago: well the waves are rolling in, if we stand up now we can surf our way to some new understanding. Presence, and Credence, builds Influence, which leads to more Presence…..and more Credence… yielding more Influence… and so on!

To the credit of the National Down Syndrome Congress and National Down Syndrome Society they put out a press release with accurate information about Down syndrome and person-first language yesterday.

Last night I saw video of institutions in Serbia—do you think having the parent of a child with a disability running for a national office could show new possibilities to people in other countries?

It could if we used it that way.

If you have been planning public awareness campaigns, release them now.

If you formed some new relationships during your protest of Tropic Thunder, pull folks back together and plan some next steps.

Self-advocates and parents and professionals alike: flood your newspaper with letters and essays.

Publicize your regular events—especially the fun ones—wouldn’t hurt to fundraise now either!

Yup, I’m going with serendipitest!

Picture from here.

Tuesday, August 26, 2008

Interview with Kathy Z.: Transition

Try This Tuesday

My friend Kathy Z. has a 21-year-old son with Asperger’s syndrome and she has dedicated much of the past several years navigating through the thorny process of transition. She has agreed to share some of what she has learned with my blog—perhaps other people will find information here that will help them on their own journey.

This information is great for people whose kids are near transition age, but it is also good information for people with small children--while the details will change before your child is this age, a 'big picture' view of your child will help inform the decisions you make everyday. This shouldn't overwhelm you, just give some direction to your thinking.

So, where do we begin?

A lot of the preparation for transition from high school to the world of adults with disabilities begins years before the actual transition occurs, somewhere between the ages of 18 and 21. Start by asking yourself: what happens when the school bus doesn’t stop anymore? We need to approach transition from two directions: work done in collaboration with the school, and work done by the family at home.

The work of fostering independence begins at home. Difficult as it may be, picture your kid as an adult, and try to envision where she will be living and what she’ll be doing as an adult. A lot of kids expect life to go on the way it has without any real expectation of what might come next or that there might be choices. It is really important to teach our kids “visioning,” that is, picturing themselves in different scenarios. In many respects, this is no different from the things we do for our “typical” children.

• Talk to your child about what they want to do when they grow up.
• Ask your kid what type of place they want to live in. When you visit someone who lives in an apartment talk about what it would be like to live there—the same with other types of places.
• Talk about what kind of home life they would want and who they would want to live with.
• In your travels through the community, point out people at work and ask your child if they would like that kind of job, or something similar.
• Pay a lot of attention to your child’s interests and strengths—individualize!!!!! Explore any career opportunities those interests may feed into.
• Encourage your child to become part of the community and foster a sense of responsibility. Look for volunteer opportunities.
• Remember that almost no one starts out with their ideal life: we all experience Plan A, Plan B, and “when all else fails”! Teach your child to work towards their goals on a step-by-step basis.

Ask your child what their goals are: in most instances you’ll find that they are no different than anyone else’s: a home, a family, and a “good job that pays reasonable money” as my son succinctly put it.

Many people who work with our kids limit their own vision to entry-level jobs where they expect our children to stay forever. Your child may have a progression of ideas or may want to change jobs at some point in their lives—you can teach your kids to look beyond and ahead. Our kids with disabilities often get few opportunities for dreaming and may have difficulty with the concept of time. They need practice.

Show them as many options as possible and get them in the habit of imagining changes. Their life will change anyway as they get older and their families get older—it’s inevitable. Like everyone else, they need the opportunity to THINK about it.

What other skills are important?

Foster independence as much as possible: teach them the life skills they will need to be as independent as they can when they become adults.

Among life skills to consider are:

• Self care and hygiene
• Social skills
• Relationship skills (for many types of relationships)
• Self-advocacy
• Problem solving
• Organization and schedules
• Budgeting/finances
• Home maintenance

What else do we need to consider?

• When your child is a teenager you need to be sure that your child is qualified for services through your region’s Developmental Disabilities Services Organization (in NY, called the DDSO, handily enough)—this should happen while your child is still in school. Qualifying (at least in NY) gives you access to family training, service coordination (which gets you help with all aspects of your child’s life!) and Medicaid reimbursement.
• Investigate agencies also, find out about their rules, restrictions and options and other possibilities and funding streams. You want to be sensitive to system-driven or consumer-driven philosophies and other possible agendas. For example, some people like a religious connection and some people do not.
• You also want to look into SSI, guardianship or its alternatives, and trusts.
• It is important to note that adults with disabilities are not entitled to services the way children are entitled to an education. Qualifying will probably REQUIRE negative documentation. So for this, you will put away all of the strength-based work you have done throughout your child’s life and use a deficit-based, needs-oriented approach. This is hard to stomach, but like any label, it is just a doorway to services.

Any other advice?

Transportation is the most important part of any plan! You can have the best job and interests in the world, but if your child can’t get from point A to point B it could all fall through.
OK, We have talked about what we need to do at home, what should we be collaborating with the school on?

The work done at home is more extensive and more difficult, but in the long run, the skills you teach and the services you put in place are well worth the effort.

Most people are familiar with the IEP process, and in many respects, this is the easier of the two approaches as you have the might of law and entitlement on your child’s side, and therefore support from school personnel. You begin early assuring that your kids’ education meets their needs and, thanks to IDEA, schools are required to begin planning for transition at age 14. Some things to consider:

• Don’t just think of this year’s goals, always include long-term goals.
• Put things that you think might be helpful in your child’s IEP.
• Investigate and consider alternative programming and schools. One size does NOT fit all.
• Enlist the help of school personnel to brainstorm vocational opportunities. As your child comes closer to graduation, ask for a vocational assessment and request work/study opportunities.
• It is also important to remember that your child does not have to graduate in 4 years so you have time for vocational work, etc. By law, schools are responsible for your child’s education until graduation or age 21.
• Work with school personnel to foster independence as much as possible.

[Note from Terri: It really is never too late to begin these things. Anything you gain today that you didn’t have yesterday is progress. And, even if these things aren’t all checked off at age 21, it is ok—people learn and mature throughout their lives and so will your child. Do you actually know ANY adult alive who had it all together when they were 21?

It is also important to realize that there are lives and choices for people who cannot make any of these gains. The amount of independence a person has with these and other skills determines the supports they need to have in place, NOT the quality of their lives—and don’t let anyone tell you otherwise!]

Back to Kathy:

What else?

Network!!!! Talk to people—officially and unofficially. Pick the brains of anyone and everyone. Brainstorm and ask lots of questions. You are looking for ideas, connections and support.

Strategize about what to ask and who to ask for ideas. People you may want to network with are:
• School personnel
• Agency leaders
• Community leaders
• Friends
• Family
• Legislators
• List-servs and on-line communities
• Your co-workers (your friends’ co-workers, too)

This all seems so confusing—so multi-focal all at once.

It can become overwhelming. So start early and don’t do it all at once. You do need to have both a big picture concept and small steps. I find a visual organizer like mind-mapping or fish-bones very helpful for visioning and for problem-solving. When you have the whole picture in front of you, prioritize steps and start taking steps.

Monday, August 25, 2008

Transition and Tom & Jerry

This has been a post that has been partially written for a long time, and then John Franklin Stephens essay which was published this week—this is what I call synchronicity.

The other day my family came home from grocery shopping and while my kids were getting out of the car and arguing over who was carrying what bags, and who had a key to the house handy and who got to use the computer first when we got inside I noticed that our neighbor was outside and I waved and said hello. We tumbled into the house and started putting the groceries away. About 5 minutes into this process my daughter raised her hand into the air and waved.

“Whatcha doing??” I asked.

“Silly me, I’ve gotta wave at Mrs. N,” she said, and she ran outside to say hello.

Later that night she was telling me about something that she heard at church from Mrs. Cheeseburger.

“Mrs. Cheeseburger?” I asked.

“No, not Mrs. Cheeseburger. Mrs. Foxglove.”

Why did she start with cheeseburger? Because it’s a compound word… It seems a lot of her compound words are filed under cheeseburger or butterfly. Because she knows they’re compound words.

At home we take these glitches in stride—we believe that my daughter is bright and witty and we live here—we have time for her to try things again, time for practice, for retrieving the right information.

It is often difficult to watch my daughter interact with folks that don’t know her. They ask her questions that she doesn’t answer—or answers with something totally silly and after a couple of tries they conclude that she just isn’t a very deep thinker.

Based on this people decide what they will talk with her about, what classes they think she should take and what types of activities are appropriate for her… and they are wrong.

They think they are right, of course. They say, “I have spoken to her myself…” so they think they know. And yet, they don’t.

See, they aren’t in the car with her after the baseball game, or at the dinner table with our family after school. They don’t know that she refers to conversations from church, or chorus, or last week’s party or today’s test for days to come. They don’t know that her gestures when you don’t understand her speech are signs that she learned as a baby and has rarely used since.

Because she doesn’t always engage the way people expect, they believe she hasn’t engaged at all.

Rather than giving her time to figure things out they pile on other questions or other pieces of information and expectations and by then she is totally mired and doesn’t respond at all.

They say “what do you expect, she has Down syndrome?”

This kills me.

She is a great kid with a killer sense of humor and some really astute observations which are lost on most folks. If she didn’t have Down syndrome I wouldn’t care that people underestimate her. I would think I was one of the lucky people with a key to a wonderful secret place and just enjoy it.

But she does have Down syndrome and when people see what they believe are her limitations they rarely even consider that they might not have the whole picture.

And these people have power.

People who misunderstand my daughter can determine her life.

They can decide and create a life for her that matches THEIR assessment of her. They can push her into situations that they believe are at “her level.”

They can feel totally justified in creating a life for her that is devoid of the abstract, they think teaching background information is a waste of time and literacy is a pipedream. They evaluate what they see as her functional level—believe their assessment to be truly reflective of her abilities, make decisions accordingly and THEY ARE WRONG.

They categorize what they see of her skills and then determine what they are willing to invest in her. They try to squeeze a kid who is truly 3 dimensional into their 2dimensional image of her—and they will blame her when she does not fit.

And then when I object to the steamrolling of my daughter like she’s something from a Tom and Jerry cartoon, they tell each other that I think she’s “going to be a brain surgeon.”

This misapprehension appears to be common in disability and it’s terrifically upsetting.

Tomorrow I am going to be posting an interview with my friend Kathy Z. who shares what she has learned going through the transition (to adult) process with her son. This is a terrifying time for our family. We want our daughter to have a life with interest and choice and room to breathe…

So how do we get there from here?????

Picture from here.

Saturday, August 23, 2008

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.

Friday, August 22, 2008

Disability Beliefs and A Wrinkle in Time

Well, it’s been a big week at our house. My daughter started college yesterday. I have been have been extremely emotional at times—happy or just plain sloppy. I really am so proud of her and this IS what I have always wanted her to do (grow up, that is), but… at the same time…

Just put your money in tissues, that’s all I have to say.

Earlier this week I was completely floored by the simplest thing: my daughter is going to be commuting this semester and was cleaning out her room to make space for college stuff. On the top of the box of things-no-longer-needed was an old, paperback copy of A Wrinkle in Time by Madeleine L’Engle. I dissolved in a puddle.

I loved that book so much when I read it as a kid that I saved it for my own child and now… my child is done with it…

So I did what any person who is working nights, dragging kids to play rehearsals, supporting the disability rights movement and watching a highly stressed daughter get ready for college and crying a bit would do—I curled up on the couch and read it.


There’s a lot that I have always carried with me from that story. I totally embraced that a person doesn’t have to be perfect to be able to make a difference, and that sometimes what seem like flaws can be strengths, and that flawed people can be loveable—I was a pretty introverted teen, I loved this stuff. And I have always wished for a tesseract when I am running late (you’re just going to have to read it!)

But there on in the middle of chapter 5 I found something that hit me in a new way. In the story the kids who are saving the day travel from planet to planet with guides. At one point they land on a planet where they can’t breathe and their hearts try to beat but they can’t expand, and they try to think but their thoughts are flattened out like print on a page…

It’s an emergency and their guides take them somewhere else immediately. The problem was that this was a 2 dimensional planet and people, being 3 dimensional, can’t survive there.

Is this or is this not the experience of disability?

Society takes 3 dimensional people with disabilities and views them and treats them as if they are 2 dimensional—flat, without depth or nuance or value, as if they are merely cartoons of actual people. And then the they create a world of expectations, behaviors and programs based on these 2D beliefs..

The societal prejudices that set this up are endless—we have trouble widening our world view to accept people with any differences as one of “us.”

We can’t value communication unless it is in the form of speech in the language we know, can’t appreciate mobility unless it involves particular leg movements, and won’t recognize learning unless it takes place through reading.

(eg: People can learn about Hamlet from listening to a tape, from a movie, from acting the story out, from hearing about it, from seeing or creating a diagram, but learning is only considered VALID if it is done by reading—this is like saying that words are only considered written if you use a blue pen.)

We write off any success that does occur as a “splinter skill.” We aren’t responsible to respect those.

We trust our 2 dimensional beliefs about people with disabilities so much we consider even just a request for better manners toward them an imposition—indeed an infringement of our rights.

We are shocked when people with disabilities assert rights themselves—to an education, a job, respect, a place to live, and an accessible community.

Even our ‘helping systems’ are often more interested in their own rules and identities than in what would make people with disabilities successful citizens. Even these programs sometimes reflect society’s 2 dimensional beliefs.

My friend was telling me last week about a conversation she had with a young guy she met who has Down syndrome. In their conversation he mentioned that he had just graduated from high school and was starting classes this week.

“Oh, that’s exciting, where are you going? What are you taking?” my friend asked.

“I’m going to learn to be a volunteer.” was his answer.

He is going to a program for the next year or two that will teach him to volunteer.

There is a 75% unemployment rate for people with disabilities and the PLAN is that he will learn to volunteer. This 2 dimensional planning is yielding 2 dimensional results—yet, in 5 years when he still doesn’t have a job society will blame him and his disability.

Now, we spent the day yesterday at college orientation with my daughter. There were about 500 incoming freshmen there and I am certain that none of the parents at that school was leaving their kid there so they could learn to volunteer. Who would pay tuition for just that?

We like that her school has community service as a stated value. We believe that people are more than their jobs. We know that our kids are not guaranteed jobs in their field. And we know that it is a tough economy. Yet everyone at that school is preparing for paid work.

Why do you think colleges are set up to develop careers and programs for people with disabilities are not? Many college kids do not have learning difficulties, yet their programs are clearly work focused… hmmm….

Someone is paying for this guy’s program and the expectation of that program is 2 dimensional: people in this class will learn to contribute—which is good. They will not learn to expect pay (or the respect and power that comes with it.) And later when the graduates can’t increase their independence on $0/hour, this will be seen as the deficit of disability rather than as affirmation that they, like everyone else, need income.

We live 3 dimensionally ourselves and create 2 dimensional options and expectations for people with disabilities and sometimes they can barely survive.

In the book the guides take the kids to a different planet.

Very appealing. But somewhat unlikely nowadays…

Here it’s the planet that must change—the societal view of disability must be expanded… and the rescuers are us.

For this Self Advocates are Becoming Empowered (and advocates applaud.)

All this and I’m only in the 5th chapter…

The picture from here.

Sunday, August 17, 2008

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

Saturday, August 16, 2008

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:


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!

Friday, August 15, 2008

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.

Tuesday, August 12, 2008

Taking Action: Be Encouraged

Give, give, give -- what is the point of having experience, knowledge or talent if I don't give it away? Of having stories if I don't tell them to others? Of having wealth if I don't share it? I don't intend to be cremated with any of it! It is in giving that I connect with others, with the world and with the divine. --Isabel Allende

"Either you go through your life thinking you can change the world or thinking you cannot. If those are the only two options, how can you not at least try?" Matt Allen, ‘the ice cream man’

Daphne Rose Kingma : Language does have the power to change reality. Therefore, treat your words as the mighty instruments they are - to heal, to bring into being, to remove, as if by magic, the terrible violations of childhood, to nurture, to cherish, to bless, to forgive - to create from the whole cloth of your soul, true love

"A ship in port is safe, but that's not what ships are built for."
- Admiral Grace Murray Hopper

We do not need magic to change the world. We carry all the power we need inside ourselves already: We have the power to imagine better. --J.K. Rowling

You have powers you never dreamed of. You can do things you never thought you could do. There are no limitations in what you can do except the limitations of your own mind. -- Darwin P. Kingsley

Creativity requires the courage to let go of certainties. -- Erich Fromm

Support the strong, give courage to the timid, remind the indifferent and warn the opposed."
--Whitney M. Young,
civil rights leader

The only thing worse than being blind is having sight but no vision. -- Helen Keller

Learn and grow all you can; serve and befriend all you can; enrich and inspire all you can. -- William Arthur Ward

If you have time to whine and complain about something then you have the time to do something about it.—Anthony. J. D’Angelo

Our tendency to create heroes rarely jibes with the reality that most non-trivial problems require collective solutions. Warren Bennis

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."
--Theodore Roosevelt,
26th president of the U.S.

If your actions inspire others to dream more, learn more, do more and become more, you are a leader. John Quincy Adams

Human progress is neither automatic nor inevitable ... Every step toward the goal of justice requires sacrifice, suffering, and struggle; the tireless exertions and passionate concern of dedicated individuals. -- Dr Martin Luther King Jr.

People can only hear you when they are moving toward you, and they are not likely to when your words are pursuing them. Even the choicest words lose their power when they are used to overpower. Attitudes are the real figures of speech. --Edwin H. Friedman

Innovation seldom depends on discovering obscure or subtle elements but in seeing the obvious with fresh eyes. Billions of tea drinkers observed the force of steam escaping from water boiling in a kettle before James Watt realized that this vapor could be converted into energy. --Richard Farson

As long as you're going to be thinking anyway, think big."
--Donald Trump,
American businessman

To love what you do and feel that it matters—how could anything be more fun? Katherine Graham

Take pride in women who defy, exceed, or trifle with conventional expectations. Autumn Stephens

This is the beginning of a new day. You have been given this day to use as you will. You can waste it or use it for good. What you do today is important because you are exchanging a day of your life for it. When tomorrow comes, this day will be gone forever; in its place is something that you have left behind...let it be something good. --Author Unknown

Action is a great restorer and builder of confidence. Inaction is not only the result, but the cause of fear. Perhaps the action you take will be successful. Perhaps different action or adjustments will need to follow. But any action is better than none at all.
-Norman Vincent Peale

Excellence can be attained if you…
Care more than others think is wise.
Risk more than others think is safe;
Dream more than others think is possible.

When we are motivated by goals that have deep meaning, by dreams that need completion, by pure love that needs expressing, then we truly live life. --Greg Anderson

When you are inspired by some great purpose, some extraordinary project, all your thoughts break their bounds. Dormant forces, faculties and talents become alive, and you discover yourself to be a greater person by far than you ever dreamed yourself to be. --Pantanjali

For more inspiring quotes click here.

Monday, August 11, 2008

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.

Sunday, August 10, 2008

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

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

Post a comment at this spot:

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:

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.

Saturday, August 09, 2008

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 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.

Wednesday, August 06, 2008

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:


Wheelie Catholic

Special Ed Law Blog

Sweet Perdition

Whose Planet is it Anyway


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.

Saturday, August 02, 2008

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.”


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.