The 20th Anniversary of the ADA is This Summer And Yet.....

Barbara sent me to this link. And it is appalling. A young boy who uses a walker visited the playground at The Galleria Mall in Dallas in 2010 and the security staff REMOVED HIS WALKER from the play area because it is supposedly a hazzard. (The playground equipment is NOT a hazzard, but his means of mobility IS...)

These security guards are 20 years behind in their profession. Yes, that's right--the ADA has been the law of the land for 20 years (this July.)

In Dallas, Texas (not some tiny town.)

Lovely. Who else has a chance??

So, what can we do?

• If you live in Dallas, a phone call or letter to the mall's administration letting them know that you find this unacceptable and a suggestion that all of their security guards receive training about the ADA and their responsibility in upholding it would be lovely. Bonus points for anyone who writes a letter to the editor!
• There are many Galleria Malls around the country. A call or letter to the mall administration in your city referencing this incident in Dallas and asking what sort of ADA training is required for their staff (and suggesting where they can get some if  you happen to know!)

Situations like these are why I wrote my 'manifesto' ... and they are the reason this blogger, and this blogger are in Washington this week.



Twenty years is long enough to wait for access, rights and respect. This little guy should grow up in  in a world without this blatant discrimination--and we can help.

Leave a comment if you decide to take some action!

I've Gone and Done it Now

I have written a manifesto. It's short as manifestos go... and I think fairly low on scary ramblings (edit, edit, edit!!! :)

Here it is:

I believe in the Disability Rights Community.

That is to say, I believe that disability is a natural part of the human experience that is often misunderstood by our culture and I believe in the people with disabilities and their allies who recognize that human beings are undiminished by disability. I support these people who strive for respect, recognition and rights.

We are a minority--there are very few of us.

We are extraordinarily diverse--in diagnosis, in capacity, and in interests. A linear approach where we will all take the same steps at the same time is not for us.

Yet I believe.

I believe because there is an ADA and an IDEA--there wasn't always.

I believe because the Paralympics exist--and any gets televised. More than last time (and there will be more next time, if we work on it.)

I believe because the Community Choice Act, the CLASS Act and Medicaid are all discussed in our nation's capitol.

I believe because I have seen kids and adults speak up for better treatment--for respect.

Because disability advocates met in the White House

Because movements started by people like Ed Roberts and Justin Dart continue against the odds.

There is Closed Captioning and Assistive Tech and Dragon Naturally Speaking and voice output apps for iPhones.

Do I think any (or all) of these things are ENOUGH? Are we DONE??? Have we created the situation where people with disabilities have a fair shot at a decent life throughout our land??

Umm, no.

Can I follow, jump into and address every single disability related issue? Do I even want to?

No.

But I believe. And if your work advances the understanding that ALL people with disabilities are complete human beings and full citizens NOW (not once they've jump throught some normalizing hoop), I claim that we are on the same team.

So, if you encourage moms, parent your own babies (or teens, or adults), train youth leaders, promote sports, take on the bioethicists or the lawmakers or health practitioners... (or if you are one of these!)

If you try to to improve the lives of people with disabilities one word at a time, one conversation at a time, one story or history at a time, one potluck at a time, or one protest at a time....

If you promote equity, understanding and inclusion through activism, authoring, through caregiving or on the airwaves...

If you focus on children, or teenagers, or adults or the elderly, or parents, or professionals... advocate, self-advocate, or allies...

If you work with acquired or lifelong diagnoses, if your issues are cognitive or mobility, or illness related, or if you know most about blindness, or paralysis, or amputations, or deafness, or autism, or aging--or something else entirely, I AM FOR YOU.

If you advance functiion or philosophy or legislation... from within systems or against systems...

Or any combination thereof...

I believe in you and in what you are doing!

We may never be unified, but we can unite. And where I can unite with you I will.

The world IS different for people with disabilities today than it was even 10 years ago. While our approaches may never be the same you will NEVER hear me say that you are wasting time, I will not minimize your efforts or concerns. You won't hear me call your work PC or useless. We may not always have the same priorities, but we will find ways to work together.

I am proud to be on your team and I applaud the work you are doing in this world!

That is all.

(See my blogroll for examples of all of these types of advocates!)

Lots of Legislation: Walk through the Web With Me

Now the web on this tour is not like the lovely web in this picture... naturally not.

Our web is more like the one that I walked through on my porch this morning--all globbed up and folded on itself and stuck to me...

Now doesn't that sound like fun?

Seriously though, there is a lot of legislation and government activity going on right now that affects many aspects of living with disability. We can have an impact for ourselves or for our kids if we take action now.

First up, of course, is healthcare:

Healthcare coverage for people with disabilities is a very tricky and delicate proposal. And it not only affects people's health... it also impacts potential for employment and often even where a person with a disability can live.

Healthcare, is of course, necessary for people with disabilities and it can also be expensive. Therefore employers are often hesitant to hire people whose high health needs will make insurance more expensive for their company...

Employeers often need not worry though... even if they did hire someone with a disability and offer them insurance the likeliehood is that the person with a disability would be turned down for coverage because their disability is "pre-existing condition."

So then what does a person who needs care do? They sign on for Medicaid.

The care can be ok depending on your state, your town, your caregivers and all, but now you have to stay eligible...

To be eligible for Medicare and Medicaid you can't have more than $2000 in assets to your name.

So you can't work. At least not much...

This is why so many people with disabilities want a public option for health insurance--something affordable that they can buy on their own. So they can separate their healthcare from their employer AND make a living...

Action: Call (800)828-0498 and ask to be put through to your Senator's office. Let them know that these issues matter to someone you love.

More about healthcare:

Under the current payment systems for Medicaid and Medicare funding is guaranteed for people who live in nursing homes and other institutions and not guaranteed except under a variance for people to live in their own homes in the community.

Now living in your own home is more desireable, AND it has also been proven to be more cost-effective... but that isn't where the money goes. This 'institutional bias' forces many people who could live and work in the community to live in care systems they neither need or want...

What is being proposed under the Community Choice First Act is that the "money will follow the person" rather than the current system of the money going to organizations to divvy up the way they choose. This will allow folks who need or want more comprehensive care in a small or large facility to have the funds for them spent that way. And for the folks who want to stay home, the money for their care can be spent on community-based services.

Action: Check out this website and this website. Then go to this page click on the healthcare reform issue and fill out the capwiz. It will take about 5 minutes...

Now, about employment:

As you can see in this article, President Obama has declared that October is Disability Employment Awareness Month.

Creating employment opportunities for the 65-75% of people with disabilities who are unemployed in this country, most of whom live in poverty (see above) will improve their lives...

It will also improve the economy. There are millions of folks who are not participating in the economy either as worker or as customers because of the unnecessary poverty that is foist upon them.

This is NOT the future I want for my daughter.

Action: Pay attention locally for forums, discussions and events. Participate. Get to know the folks there. Pay attention to barriers and help build bridges in your workplace and community.

And the good news:

Not only can you have an impact on a complex and sticky bunch of issues, but it's actually good for you.

Yep, it's true. Read this article.

Now, aren't you glad you stopped by?

Picture from here.

Attention Parents of Young Children with Disabilities: The Fight Club Video and the Community Choice Act

There is a horrible video from an institution for adults with disabilities in Texas where the employees forced the residents to fight for their entertainment. I know many parents of children who say they didn't see it and won't ever see it because it is so upsetting.

In a lot of ways I don't blame them a bit. It isn't that they don't care, it's that they hope to change future of the disability community by putting all their energy into building up their own child and helping them be the best they can be.

I applaud their efforts--I have done (and do) the same myself.

But because of this focus many parents don't get involved in disability issues, don't call congress or sign petitions. And this is a shame.

You know what the worst part about the "Fight Club" video out of the institution in Texas is?

It wasn't Willowbrook. In the legendary Willowbrook expose from the 1970s the facility was run down, the residents weren't dressed and few had had any education at all...

In the Fight Club video of 2009 the place looked decent, the men looked clean and modern and well dressed, many or all had clearly been taught much--they could speak and more.

And still they were victimized.

Like every other parent who watches that video my very hairs are standing up on end, screaming, "NO, NO, NO... NOT my child!!!! Please no..."

The sad truth is that to create the world we want for our children with disabilities we have to do more than bring them up. We must participate in creating the situations that will receive them.

We must get them ready for the world AND get the world ready for them.

The good news is we don't have to kill ourselves doing this. We don't have to make it our full-time (or even part-time) job. There are many, many ways to be heard and make a difference without becoming overwhelmed--honest.

First: get yourself a decent source of information. You don't need to watch all of the videos and read all the hours of congressional testimony yourself, but you need to pay attention to someone who does.

The National Down Syndrome Congress, The American Association of People with Disabilities, The Arc and more have government newsletters and send out action alerts to let folks know about the important issues.

Second: Read the e-mails you receive. Or at least a percentage of them (LOL!)

Third: Take an action. Make a phone call, write a letter, fax something. These are all short actions that add up to big impact. If you feel the need and have some energy to invest, join a committee or visit a legislator (or more than one.) Don't burn yourself out, just pick an action and do it.

Fourth: Forward the e-mail to your friends and family and ask them to help.

Right now there is a problem with Medicaid. It easily covers institutional care--it wants to pay for care to be given in institutions or nursing homes. It does not cover care in individual homes. (They call this institutional bias.)

This is a problem for people with disabilities (who get medicaid when they are unemployed, or considered uninsurable by their employers' plans) and for older folks who want to stay home as they age.

Now, care at home in neighborhoods is better. No one drives past an institution of any kind and wishes they could live there.

It is cost effective. They estimate that community living costs around 1/3 less per person than institutional care.

And if the nightly fighting from the Texas video had been happening in a neighborhood home SOMEONE would have heard it and complained.

Call your congressmembers. Tell them the Community Choice Act matters to you.

Creating the future your child will thrive in begins at home--and in the world.

We can do this together.

Let me know how it goes!

Timing is Everything: The Texas Institution Scandal and HR 1255

Over the last few months there has been lots and lots of exposure of problems in the institutions that "serve" people with disabilities in the state of Texas.

First came problems at the Denton School, an institution that houses several hundred children and adults with cognitive disabilities in .

Then after lots of investigation the oversight committee came to the conclusion that the large institutions that have proven more dangerous AND more expensive than smaller, community-based living situations do not need replacing, they need new names and a PR campaign...

Better lives through spin.

Then came the Iowa Turkey Farm Debacle--21 men from Texas who were found to be spending their nights in a run-down former factory and their days allegedly in indentured servitude to a turkey packing company...

And this week it turns out that the carers at Corpus Christi State School and possibly at others have allegedly been holding a "Fight Clubs" where they wake the residents at the schools in the night and stage fights between them. Allegedly the carers goad the residents, laugh at them and film them--there is investigation to whether there was gambling involved...

And this week an action alert came from NDSC that Rep. Barney Franks has introduced legisalation that will limit the ability of Protection and Advocacy agencies to bring class action suits against institutions where abuse, etc of people with disabilities has taken place....

ARE THEY KIDDING??????

Action Needed:

Contact your representative and ask him/her NOT to cosponsor or in any way support H.R. 1255. Call the capitol switchboard 202-224-3121 and ask for your Representative's office. (To find your Representatives go here.)

Talking points are as follows:
*This legislation is not needed and would harm individuals with disabilities.
*It would harm the efforts of parents and advocates to work for community services and support needed to live in the community.
*It would limit the efforts of lawyers to represent our constituency.

Picture from here.

Stuff for Activists

First, please go and vote for the Medicaid Waiver/Waiting List on change.org. There are 2 more days left to vote and we are about 2000 votes away from being in the top 10 which will give exposure to disability issues in new ways. There are 2 days left...

Next,head on over to JFA to see what the AAPD has brought to the Obama Transition team and to see about country-wide celebrations of the inauguration (that WILL be accessible!)

Then head over to Disability Studies and see the other stuff Penny has pulled together.

The Power of the Stories We Tell Ourselves

I wasn’t long out of nursing school when the dynamic on the floor I was working on went down a poisonous path. They were between managers and somehow all of the staff had turned against each other and EVERYONE blamed EVERYONE ELSE for the situation. No one could see any way to change their behavior unless someone else’s behavior changed first.

A senior manager was called in to help sort things out and this manager told the staff that they not only could change their behavior, but they were responsible to—whether or not anyone else EVER changed. This statement met with blank stares and hostility. No one could imagine how this could work.

To illustrate her point she showed us a video of a woman displaying absolutely HORRIBLE behavior. The woman was stomping around, cursing, threatening and carrying on, it was upsetting to watch. The manager stopped the film and asked us what should be done about this person.

Well our staff was incensed at the behavior they had seen. They said the woman should be spoken to, limits should be set, she should be asked to leave, consequences should be levied, victims should be defended. Our manager wrote all of this down.

Then she told us that the next video we were going to see would probably upset us as well. She said that the gal in the film had just found out that her son was gravely ill, she was having serious financial issues and had just had a fender-bender on her way in.

Then she turned on the video. Guess what? She showed us the exact SAME video.

When she stopped the film again she once again asked what should be done about this woman. As you might imagine, the answers were completely different: Find her someone to talk to… see if she has a ride home… have the social worker share some of her community resources with her…

Of course she pointed out that our answers had changed completely in tone and in content. And everyone said it was because they now understood the woman. Our manager pointed out that we had completely changed our response toward a person even though that person had not changed their behavior first—or at all.

It isn’t the events of our life that shape our experiences or reactions, it’s the story we tell ourselves that makes the difference.

In her book, The Journey of a Lifetime: Leadership Pathways to Culture Change in Long Term Care, author Nancy Fox tells the story of research done by Princeton University psychologists where they tested seminary students to see if they would stop and help someone in need that they passed as they crossed campus. They told the students that they were needed across campus to do a task, some of them they even primed by reading them the story of the Good Samaritan, some they told they were late, some they told they had plenty of time.

They tried many variations and the single determining factor of whether the students would stop or not stop to help someone was whether or not they were in a hurry.

It wasn’t the situation, it wasn’t the need of the person on the ground, it was the story they told themselves in the moment…

This is why, in the book Crucial Conversations by Kerry Patterson et al. part of the preparation for holding ‘crucial conversations’ with others is asking yourself, “Why might a reasonable person be acting the way this person is?” To communicate effectively it is important that the story you are telling yourself sets you up to be receptive and respectful.

You can see the power of the stories people tell themselves play out in a million ways:

• In our town is a grocery chain that I frequent regularly and another I avoid like the plague. In the first everyone there is trying TO help me, it the other everyone is trying NOT to help. One treats their customers as the reason for their business, the other treats customers as if they are a necessary, but annoying evil.
• Last week in NY a man with Cerebral Palsy was left on the bus overnight in the freezing cold allegedly by a driver and a matron who had finished their shift and had other places to be. It seems, instead of telling themselves they were helping a young man get home, they believed they were working a shift—a shift that ended before their work ran out, apparently.
• In other bus-related incidents Dave Hingsburger had two very different bus experiences. In the first he left was outside in the winter weather by a driver who felt he had completed his job by bringing him to the correct address. In the second, a different driver made an extra effort to make the trip accommodate what his riders really needed.
• In my blogroll over to the right there are blogs by many adults with disabilities who assert their passion for living their lives—as they are—with every word they write. Then there is the heartwrenching story of Dan James. His disability was not what was extraordinary in the realm of disabilities, rather, it was the story that he and his family believed about disability that led him to kill himself with his family’s help.
• Back when Burt Holbrook was a child the narrative about Down syndrome was that babies should be given away before they destroy their families, that they should be “with their own kind,” that they could never learn to read or write or work… Look what changing those narrative has wrought for Burt and for others.

Our personal narratives determine the quality of our personal interactions, affecting the narratives of a group is leadership, and affecting the narratives of a culture changes society.

Picture from here. (Well check out the picture, because I love it, but I can't get it to load... will try again later.)

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.

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.

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.

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.