More on the R-Word

You may already know that Sen. Michulski introduced legislation to ensure that future federal legislation uses person first language a couple of weeks ago.

What you may not know is that this story has been playing out in my region as well. This summer one of our county legislators was recorded calling another an 'r-word' during a roll call vote.

Nice, huh?

In early August there was a cross-disability press conference and a protest at a meeting of the County Legislature where I spoke. Here is what I said:

Recently someone in this chamber was recorded using the r-word... and sadly, no one was recorded saying, "Hey, we don't use that word here!"

There is no minority who would accept this sort of disrespect, and the disability community should not have to either.

It was a mistake, I know. And before my daughter was born with Down syndrome I can't say that I "got" disability either. My life experience has taught me a lot.

Fortunately you do not have to wait for life to gift you with disability for you to become aware and respectful of disability issues.

There are many ways you can learn about disability and many actions you can take to improve yours and our community's awareness:

*You can seek training from any of the many agencies that support people with disabilities in our area.

*You can support agencies and people with disabilities personally and through legislation.

*Most of all, you can get to know people with disabilities. Without them your knowledge of the strengths and needs of our community is incomplete.

If you follow these steps a mistake like this will never happen here again, and the disability community and those that love them will thank you.

In closing I would like to quote Eunice Kennedy Shriver who founded Special Olympics and died yesterday. These are the kinds of words we want to hear from our leadership about disability:

"You are the stars and the world is watching you.

By your presence you send a message to every village, every city, every nation.

A message of hope.

A message of victory.

The right to play on any playing field? You have earned it.

The right to study in any school? You have earned it.

The right to hold a job? You have earned it.

The right to be ANYONE's neighbor? You have earned it!"

Thank you.

This week the Monroe County Legislature is slated to introduce Person First Language Legislation stating that future legislation will be crafted using person-first language. I wasn't able to be there last night and I don't know what happened.

I'll let you know how that goes!

(The video is a bit long, but really worth watching!)

Interview with Patti Digh author of Life is a Verb

You read the book review (go do it now, I'll wait) now read the interview:

Yes, I sat on the veranda sipping iced tea with Patti Digh while conducting this interview--at least virtually. (Actually I sent her and e-mail from my family room couch and if I was in my PJs at the time no one needs to know--lovely thing this internet. Though I would have enjoyed the whole veranda and tea thing!)

Patti writes one of my favorite blogs, 37 days and her book from the blog, Life Is A Verb has just been published.

* I am a daily reader of your blog. Your focus on intentional, inclusive living really hits home for me. Do you feel your principles apply to people who are extremely busy or overwhelmed? Do you think intentional living adds value to any life? How? Where does intention affect burn-out?

I think being mindful is especially important for people who are extremely busy or overwhelmed. Otherwise, it's easy to be mindful, isn't it?

Most of us exist in a state of overwhelm. I know I do. In those moments—as in all moments were change is needed—we need to consider the possibility that the change that is needed is often counterintuitive. That is, often the change that is needed is the exact opposite of what we believe is needed. So, when I'm stressed and have too much to do, I believe the answer is to work faster and let relationships falter because I don't have time for them. What if the change that will help most is to slow down and foster deeper relationships instead?

* I know that in your professional life you work with companies to improve their diversity. Do your diversity beliefs extend to people with disabilities? How do you feel including people with (cognitive) disabilities affects organizations/communities? What do you see as barriers or possibilities?

I have been active in the disability community for a long time. As a former board member of many national disability advocacy groups and as a longtime member of the President's Committee on Employment of People with Disabilities, I am a vocal advocate for people with physical and cognitive disabilities. I've written a lot about inclusion as it relates to people with all types of disabilities, including the ways in which our language frames our beliefs about and engagement with people with disabilities. Speaking about wheelchair-bound people evokes a different sense of that person's humanity, for example, than does people-first language like a "man who is a wheelchair user." In the first phrase, a wheelchair is a prison and the person in it is believed to be a victim while the people-first language evokes a full human being who uses a wheelchair to move about in his or her daily life. It is significant, the difference. We need to move toward people with disabilities and ask them how best to engage with them rather than move away from them in fear that we will offend them. We need to see them as people first.

*Tell us about your work on the President's commission: Which president? What was the name of it?? How long? Who with? What were you able to do/learn? What surprised or affected you about this experience?

I participated for many years under Bill Clinton's presidency in the President's Committee on Employment of People with Disabilities. We worked on disability issues at a national level, looking for ways to connect employers with people with disabilities for employment opportunities.

What surprised me most were two things: one, that we are often advocates for those things that personally affect us. That is, the employers most open to conversation about employing people with disabilities were those who had personal experience with disability in their families. We must learn to be advocates for people simply because they are human and not because we belong to their group.

And two, I was surprised that the disability community—as huge as it is (our nation's largest minority group)—was so splintered as to be somewhat ineffective. It was a great example (and there are so many in our nation) of the ways in which we can lose focus on desired outcome or intention and focus instead on circumstance (my group's interests first).


* What do you share with your daughters about people with differences? How have your girls responded?

I realized a few years ago that doing corporate diversity training had no chance of being as lasting as raising two daughters who think and talk openly about difference. With each of them, we have engaged in frank conversation about difference, providing them with the tools (I hope) to walk toward difference and not away from it. It started with each daughter reading books about difference—for example, Todd Parr's vibrant books are a great resource—letting them understand what differences exist in the world and how they all provide perspectives that can enrich our lives. By now, Emma knows the signals that I'm about to haul out the flip chart and do a little after-dinner lecture on stereotypes…(smile). It is simply a part of the DNA of our family.

* How does intentional living change lives? Do you feel it has ripple effects in the larger world?

We often believe that change can only happen in large pronouncements. But I honestly believe that local simplicities—the choices I make each day about how I am with you and what I am in service to—are the most profound tool we have for large-scale change. Because I write 37days, I pay more attention. Because I pay more attention, I see meaning in more small interactions. Because I see meaning, I have meaning in my life and I believe that all other humans have deep meaning in their lives. I can extend the same level of humanity to others that I grant to myself as a result. That's big. That's meaningful. That's powerful.

* What are your insights about how gaps between people with disabilities and others can be bridged?

I think we hesitate to engage with people with disabilities because we fear we will offend them. "How does he shake hands?" we ask ourselves. "Can he speak?" we wonder. "Should I help him across the street?" we ponder. How on earth will we know if we don't ask? What if we walked straight into the discomfort? How might that change the quality of our engagement with the world, and theirs? Who better to tell you whether they can shake hands than the person with the disability? Why do we believe we must have all the answers? Sometimes, my friends, the answers are resident in others.

* You talk in your book about the importance of things like pancakes and fun. How do pancakes and fun apply to the life of the disability advocate?

When we think about the question of 37days to live, often the impulse is to radically change our lives. What I am trying to get at in my work is the opposite of that: what if, instead, we lived RIGHT NOW the life we want, so that when we get to that last 37days, we continue living that very same precious life, rather than regret the one we didn't live. What if we continued hoeing the garden we are hoeing in our last days and just punctuated those precious hours with more chocolate chip pancakes instead? What if we played life as an infinite game, one we play to learn, as opposed to playing life as a finite game, one we play to win?


*Are there any questions you wish I had asked or is there anything else you want to say?

Terri, my thanks for your big, important work in the world and for participating in the Life is a Verb Blog Tour.

Thank you, Patti!

Thunder Tropic, Censorship and Other Reflections

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

I just love Abe Lincoln and I agree with him.

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

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

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

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

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

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

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

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

Well it isn’t, so we don’t.

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

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

Love. It.

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

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

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

Other bloggers weighing in on Tropic Thunder:

cripchick

Wheelie Catholic

Special Ed Law Blog

Sweet Perdition

Whose Planet is it Anyway

Blog[with]TV

Mama Bear and Tropic Thunder

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I don’t.

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

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

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

NOT!

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

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

Picture from here.

Disability Identity

When it comes to disability identity I want it all!

I want person-first language. I think there is a pretty smooth flow of thought between the hearing of a diagnosis/label and their stereotypes for most people. I think interrupting that smooth flow with a little humanity is good!

I want inclusive and equal and ever-expanding opportunities for all.

I want both pride about the disability movement and acceptance within it. No trying to cover up the fact of a disability and no ranking of which disabilities are acceptable or unacceptable, worthy or unworthy (and I want a society that also holds these values—and I’d like it NOW, if you don’t mind!)

I think disablist discrimination—all discrimination actually—is everyone’s problem and discrimination against any other group (with or without disabilities) is NOT a solution.

I think that diversity that cannot expand to include people with disabilities is not diverse enough.

I want respect including respectful language, rights, safety, opportunity, access and belonging—for all.

I want to belong to inclusive groups, groups relating to specific diagnoses, and coalitions uniting people with many disabilities.

I want the freedom to choose inclusive education AND Special Olympics.

I want people to be unique AND to belong.

No, I don’t think it’s too much to ask! I have only just begun to ask!

(Find the image here.)

Language

Back 7 or 8 years ago I was asked to speak to the staff at a local school about Down syndrome. I started with a true/false quiz and then spent time dispelling common myths, misinformation and replacing their pre-conceived notions with accurate information. I talked about chromosomes and challenges, potential and possibilities and then I opened the floor up for questions.

I answered a couple innocuous questions and then called on a woman in the front row whose hand was up. She looked at me and said, “So, what do I do when a downy…..”

To be honest, I have no idea what the rest of the question was. My ears started to burn and I got completely flustered. A DOWNY???????? Isn’t that a FABRIC SOFTENER????? I nearly died. I could feel my face burn—my ears stayed red for hours.

I don’t know what I actually said to her—I didn’t yell or ridicule her so I think I get extra credit!

From that day to this I begin most presentations by introducing and explaining the use of person-first language. The best defense is a good offense!

Person-first language is the practice of saying “a person with a disability” or “a child who has Down syndrome” rather than saying “the disabled” or “ a Downs child.” It is one more tool in the arsenal against prejudice.

It is extraordinary, but many people do feel that because they know a diagnosis they know the personality, characteristics and even the future of a person who has a disability. I can’t tell you the number of people who told me, before my daughter was even a year old, how placid (or stubborn) she would be, about weight problems and learning issues and what kinds of life she would have—she was a BABY, for Pete’s sake!

By making things a bit more cumbersome person-first language interrupts the flow of our common thinking and helps us focus differently. Keeping the human being in the priority position in our thoughts and in our sentences makes it more difficult to make a disability the center of our relationships. As the case of Katie McCarron illustrates focusing on a diagnosis and losing sight of the human being who has it can be carried to dangerous extremes.

Author and speaker (and fellow Partners in Policymaking graduate), Kathie Snow, has written and spoken extensively on the value of person-first language. She has created a handy reference sheet and she uses a quote from Mark Twain that I just love:

“The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”

Or, as the Bee Gees used to sing, “It’s only words, but words are all I have to take your heart away.”

Grateful?

It's tough to be a disability advocate in Rochester today...

Jason McElwain, a young man from Greece who has autism had an awesome, high-scoring basketball game this weekend that has been seen all over the world was on the front page of the paper this morning. It is an wonderful, heartwarming story and yet...

The advocate in me (and my friends across the country) keeps asking questions like, "if he's a gifted athlete why was he only on the court for the last five minutes of the last game of his senior year?"

If I did ask--and I wouldn't dare--someone would say, "Can't you just be grateful?"

Well...yes. And I am.

Are other gifted athletes grateful to sit the bench and only play the last 5 minutes of their senior year?

Another question: Why haven't any of the news articles (except this morning's by Scott Pitoniak) and any of the TV coverage used person-first language?

I expect that this is because calling him "autistic" from the get-go sets up lower expectations in the reader/viewer which makes his stellar performance a bigger surprise and more exciting. This of course proves both that disability-first language does set up lower expectations and that Jason is indeed a basketball player who also has autism--he is not defined by his disability. In fact, no one is.

I know. I really am grateful.

And, does presenting J-Mac's accomplishment as a miracle let us off the hook? Are we settling for feeling good when we should be challenged? Miracles after all can't be replicated or built upon--just marvelled at... Is that enough?

Grateful.

Then we turn to the B section of the paper to learn that Liftline prices are going up related to zones and distances. Just this week I heard a radio ad saying the "regular" buses will now have one low fare, regardless of zone or distance.

It does cost more to travel from the suburbs to the city than within the city. RGRTA won't charge me more to make those trips, but they will charge more for my friends with disabilities.

Public transportation issues are always thorny, can't we just be grateful?

Are my neighbors grateful to get to leave their houses for work or play? Are they grateful when they are charged more than their neighbors for the same service?

Then back to the front page to find out that creating a center/museum in our city that pays tribute to civil rights activist Frederick Douglas is proving nearly impossible...

I don't have my thesaurus handy. Is grateful another word for frustrated?