Where Do I Even Start????

Yes, it HAS been a while.

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

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

Advocacy took a back seat.

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

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

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

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

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

Ever.

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

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

Executed.

Dead.

On the basis of fiction.

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

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

Obviously not.

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

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

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

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

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

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

I am right. Just accept it.

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

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

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

Because it was effective.

And horrifying. Great writing, horrible meaning.

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

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

I read.

And people without subtlety always end up with power.

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

Good heavens.

Forgive us Lord, for our treatment of Marvin Wilson.

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

I am sorry. Amen.

Aiming at Sarah Palin--but Hitting her Two-Year Old

So infuriating.

I have been away awhile fighting the home fires on enough fronts to make my hair straight (seriously!) But the cultural bias about disability apparently continues...

It was Sarah Palin's son Trig's, birthday this week and Sarah Palin posted a cutesy poem about him on line. In response a political commentary blog posted a criticism--not of Sarah, but of Trig... calling him that ever-favorite R-word because he has Down syndrome...

Political commentary has devolved in this country to the point where namecalling and playground slurs really don't surprise anyone--it's cheap and easy and gets adrenalin flowing. It isn't cute, and it certainly isn't intellectual, but it is 'the way it's done' in 2011. (You might have noticed this...)

Usually though the target is at least an adult... and involved in politics....

 They have removed the post. The author says in his statement that he is just angry that Sarah Palin uses her son as a political pawn. And he might even have a point--children of politicians are always part of their 'package.' The ultimate example that comes to my mind are Caroline and John-John. People might have agreed with him--if only he had made that point.

And let's just say, again, that if Trig had been of any minority other than disability, said author probably would not have resorted to a slur to talk about him... 

H/T to Stephen Drake for bringing this article to my attention.

Note to Self: Never Read the Comments!

I read this post last week about a British woman who was shocked by a comedian's remarks about people with Down syndrome. It is a great post--she has a beautiful daughter and I really like her non-confrontational, explanatory approach.

Naturally, I couldn't stop there. I forgot myself and read the comments--and it was truly painful.

There were many comments  supportive of the woman's experience, but the rest were pretty vile.These are not folks that disagreed with her opinions, these are folks who were furious that she voiced an opinion at all. Disagreement keeps things interesting, but these people didn't say that they saw things differently, they verbally assaulted her.

First there were the folks who feel that people who don' t like something should NOT say so... have you noticed that these folks do not follow their own advice?

Then there were some who needed to blame the victim--her pain is her own fault.

Some shared the comedian's stereotypical view of people with Down syndrome.... and tried to prove themselves right (really???)

Still others made the case that if she wasn't a perfect person she had nothing to say--another group who should show us how this works by example... but they never do, do they?

Lots of forms of  "Just Shut Up!"

Ugh.

My opinion? If someone hurts you, you have the right to say both 'ouch' and 'stop it.' You do not have to just lie there and take it, whether anyone else likes it or not.

Now some might say don't just skip the comments, don't take a stand at all, but I don't agree. It may be small comfort, but there are a whole lot of people talking about disability respect today because of this event who had never thought about it 2 weeks ago...

And, while reading the comments may give you an ulcer, activism actually makes people happier.

Plus, there is a really great disability-blogging community. (We're wonderful... just ask us!)

I hope these small facts will help this mom hang tough!

Words Hit Like a Fist image from Rolling Around in my Head.

R-Word Firestorm

The first time I ever saw self-advocacy I had no word for it. I was in college and I was riding the bus into town to do some shopping and this young guy called someone else on the bus a r*tard.

There was a woman who had a disability sitting toward the front of the bus. She turned around and told him to shut up...

And that jerk looked at her and said, "You don't even know what that word means!"

"I do too! You're saying he's bad because he is like me. Well I am NOT BAD!"

The bully said, "I wasn't talking about you," and got off the bus.

But he was.

Insults are words that give people a little verbal slap. They are individual and specific.

Slurs are the big guns. Slurs not only insult individuals, but burn entire groups of people. They are part of every civil rights movement because they disempower. They refer to gender, race, religion, disability and more. Slurs are so powerful, so forbidden and so tempting... The possibility of hitting someone that hard makes us giddy.

So we create exemptions to make it OK to use the occasional slur. Here are some of the exemptions I have noted over the past week:

*It's OK if you're a Republican. (IOKIYAR)
*It's OK if it's funny--or satirical--enough. (IOKIIFOSE)
*It's OK if you're referring to yourself or your own group. (IOKIYRTYOYOG)
*It's OK in private. (IOKIP)
*It's OK if you call it Free Speech. (IOKIYCIFS)
*It's OK if you're really mad. (IOKIYRM)
*It's OK if you're not prejudiced. (IOKIYNP)
*It's OK if you didn't mean it that way. (IOKIYDMITW)

Have I left any out?

Do they work? Do any of these exemptions actually de-slur the words???

No, they don't.

It's just not OK. (IJNOK)

Picture from here.

Wrong Again: This Time About Palin and Limbaugh

If you ever want to know how things are going to play out politically, ask me and then know it will be the opposite. Honestly, last year I was certain that President Obama would make more than a behind-the-scenes apology after his Special Olympics dis. And I was equally certain that Rahm Emmanuel wouldn't. And I certainly couldn't picture Sarah Palin tsk-ing a Republican...

And of course I was wrong on all counts. I should have learned, but I didn't.

This week I KNEW for sure that NO mom would EVER put up with the level of POISON about people with cognitive disabilities that Rush Limbaugh spit out on his program this week.

Wrong, wrong, wrongety, wrong, wrong!

Not only did Sarah Palin put up with it, she joined in. She called Limbaugh's vehement spewing of the r-word over and over again "hilarious" and "satire."

I never saw that coming.

Of course, I do realize that disability issues don't give anyone a lot of political traction--if we were that powerful or respected these issues wouldn't even come up. In fact I have mentioned this to everyone who said that Sarah Palin was using her son with Down syndrome as a political prop. I told people that Trig really wasn't going to get her any clout, but with him she might change the world.

And, I realize that Sarah Palin does have a tendency to jump into things she doesn't understand and then quit when they get hard: things like talking to reporters and governing Alaska, for example.

Still, I believed she would hold firm for disability respect because she is a mom.

I predicted that she and Rush would plot something out where he would say that he wouldn't ever be "PC," but would that he would defer to a mother's righteous rage.

Good thing I didn't bet money.

So how will this play out?

Will people see this as another episode of Sarah Palin quitting when the going got tough?

Or will folks see this as proof-positive that disability issues don't pertain to them, and as permission to carry on the traditions of disrespect like a bunch of playground bullies?

Or will people be horrified that when the chips were down a mom, any mom, chose Rush Limbaugh over her own baby?

Or was merely giving birth to a baby with a disability enough for everybody?

At our house we have tons of family stories about how we look out for each other and how we stick together no matter what, how will this event play out in the Palin family stories?

This time I'm not even going to guess.

Read all about this event here. And did you notice this?

Picture from here.

Rush Limbaugh Brought Tears to My Eyes Yesterday

Caution: Watch this video at your own risk. I heard it unprepared yesterday and it actually brought me to tears. I am only posting it because when I mentioned the incident to a couple people yesterday they didn't believe me...

My daughter has Down syndrome. I'm not a wimp. I stand up and handle lots, but the furnace blast of abject hatred in Rush Limbaugh's broadcast took my breath away.

On his radio program Limbaugh praised Rahm Emmanuel for calling liberal Democrats r*tards... and that was just the beginning...

Limbaugh yells the r-word over and over again, to ridicule liberals, to mock people with disabilities who deign to say "stop it" when something hurts them, and to deride the disability activists who met with the administration at the White House Wednesday about respect for people with cognitive disabilities.

Crass.

Cruel.

Limbaugh's tone leaves no doubt. He believes people with cognitive disabilities are nothing:

Beneath contempt... Completely valueless...

Emmanuel's incident was bad enough. Limbaugh's diatribe made Emmanuel look like an absolute saint.

Yesterday Limbaugh stated on his website that he was just quoting Rahm....

In admiration?

Or because he is 6?

Well Rush, as my mother would have said:

"If Rahm Emmanuel jumped off the Barge Canal Bridge would you jump in after him???"

Way to think for yourself AND take responsibility.

Sarah Palin said Emmanuel should be fired for his remark--a remark that took months to even hit the newspapers... She made statements about Rick Perry's blatherings in Texas yesterday as well...

She has herself a dilemma now. This guy is supposedly her buddy--and he hates her kid.

What's she gonna do? Not for nothing, but mom to mom? I'm hoping for a full-on mama bear smackdown.

If my family, my friends and loved ones have to swallow this bile, this better be a giant step toward respect.

Surprise, Surprise: More R-Word

Yet another public figure resorts to maligning people with cognitive disabilities when the chips are down... there's a shock.

Two thoughts:

First, isn't it fortunate that Mr. Emmanuel chose the r-word and not the n-word or hate words about some other minority to spout when his intellect deserted him?

Political careers have ended over those.

Second, you really can't get absolution for slurs toward seven million Americans and their loved ones from Special Olympics. You just can't.

Especially without meaningful (painful!) penance.

Want absolution?

Do something that matters with the actual community you offended.

And...

Shut. Up.

You can read about the incident here, Special Olympics' response here, Arc's response here.

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!)

Spread the Word to End the Word: 2002 Words

Enough said?

More here. And here.

Changing the World One Conversation at a Time

I like this campaign. I have heard from tons of folks that I should just get a sense of humor, that it doesn't matter, that it won't make a difference, etc, but I like it.

First of all, it's assertive. When my son was little and having trouble with some kids I ended up telling him one day not to cry around mean people. I told him I didn't know why, but crying makes mean people meaner.

It should not be true. I hate that it's true.

But trust me. It is.

Well, throwing your wishes up against those who are enjoying their power has the same effect. Wishing people would just be nice to us and educating the heck out of them to support that wish just makes the bullies enjoy their power more. In the article I linked to yesterday Maggie Hoffmann said "Gratitude is not a viable advocacy strategy." Well neither is wishing.

I am delighted that the disability community is finally standing up and saying "STOP IT!"

Secondly, I have had my own ideas about culture change for a long time which I will write a LONG post on at some point, but let me share this image:

Picture that year in Sunday school (or school, or scouts or wherever!) where that naughty kid ran the show. The teacher or leader tried and tried to get control, but just couldn't.

How'd they do it? How did that naughty kid take the lead?

When I explain this to new charge nurses I call it the Michelangelo Method. (Yes, I made it up, but giving it a name adds credibility, don'tcha think?)

There is a story that someone asked Michelangelo how he sculpted his masterpiece, David. Michelangelo thought for a moment and then told the person that he had the vision that David was in the stone and he just cut away everything that wasn't him.

Well, that's just what that naughty kid did:

*He made a vision--of mayhem where nothing serious got done.

*Then he cut away what did not belong in his vision--by responding every time things got off track (by making fun, threats, or other general naughtiness.)

*And thus, that naughty kid became the leader--no matter who was actually supposed to be in charge.

There are a huge number of possible visions in the world, and there are a wide variety of 'cutting away' tools, some acceptable and some not. But that naughty kid enacted what I consider to be the first step of leadership.

The Spread the Word to End the Word campaign has a vision of respect and they are using the tools of education, media, and more to respond every time and cut away what does not belong in that vision.

They are leading.

And we can help.

Click the pic above to sign the pledge, sign your group up as supporters, get a shirt and join the fun! It's not too late, you have almost a week!

Say It Isn't So, Mr. President

Actually, I know it is so... Last night on Jay Leno the President of the United States bemoaned his poor bowling skill saying that "it was as if he were in Special Olympics or something."

Sigh.

And sensing there had been a gaffe his staff stated to somebody that the President really respects Special Olympics.

Sigh again...

See, here's the deal Mr. President,

I know it was off hand and unintentional. I know you nearly never make disparaging remarks about races, genders, creeds, sexual orientations or other differences. I know that you support people with disabilities in many, many ways. And you never talk about diversity without including those with disabilities.

And that's the point.

Ableism is so ingrained in our society that even our FRIENDS don't recognize it.

It's not that this was the worst gaffe in the world, and heaven knows it wasn't the worst we've ever heard--nor will it be the last, I'm sure.

It does, however, have more.... cachet... shall we say, coming from the president.

I am only speaking for myself when I say this, I am willing to forgive, but I do have something to ask:

Do something about this that matters.

There are a ton of opportunities this month alone to take a stand that could turn this negative moment into something that makes things better in our culture for people with disabilities.

Leverage this error into opportunity. Please.

Tomorrow is 3/21, World Down Syndrome Day, a day to celebrate Down syndrome, (also know as Trisomy 21.)

Too soon?

That's ok, there's plenty more:

3/31 is Spread the Word to End the Word day--a day to unite to ask for respectful language about disability--specifically to teach about the hurtful effect of "the R-word." It is sponsored by Special Olympics and there are cool t-shirts!

There are bills coming before congress soon with the power to build new possibility for those with disabilities like the Community Choice Act (scheduled for 3/24 last I heard), the CLASS Act... and others.

The president of the AUCD gave testimony before the HELP committee yesterday about the value of the University Centers of Excellence on Disability and the Leadership Education in Neurodevelopmental (and related) Disabilities programs that they run.

And that's just what I can come up in my bleary early morning state.

Make a statement, not an apology to a program--great though it is--make a statement that brings recognition and respect to people with disabilities.

Help the disability community by turning this stumbling block into a stepping stone (or better yet, a ramp!)

Picture from here.

Spread the Word to End the Word: Clinically Speaking

When my daughter who has Down syndrome was born I had a visceral reaction to the use of the word "R*tard" as a playground insult (I wrote about that here.)

You can ask my kids, I have always had an extremely low tolerance for namecalling of any kind, but THAT WORD (as my friends who are self-advocates call it) with its ability to degrade its intended victim and a whole class of people with disabilities--usually without the user even knowing it--infuriates me.

And nowadays I think the phrase needs to be re-thought and replaced in every context.

I did not always feel this way. While I knew I could not tolerate the use of THAT WORD as an insult, I was not uncomfortable with its use as clinical terminology, or in 'official' verbage. Until, through my Partners in Policymaking course, I made friends with several self-advocates.

One day over coffee one of my friends told me this story:

Seems she rode her town's city bus to work each morning and when she got on the bus the driver would make a loud remark about her going to "The R*tard Room." After months of this one of the men who also got off at her stop told the driver to stop saying it. The driver replied that it wasn't an insult, it was on the sign over the door. My friend--who doesn't read--had had no idea that that's what the sign said. From then on she cried when she had to walk under that sign and eventually she quit that job.

She couldn't believe her job gave her community permission to insult her.

Clinical Terminology:

It is time for clinicians to change their terminology. I realize teenagers need to feel they are flexing their muscles and need to say shocking things to feel heard, but clinicians need to move on!

Parents and self-advocates across the country are petitioning their governments to update terminology and join campaigns to end the r-word.

Clinicians (with some notable exceptions), on the other hand, are dragging their heels and harrumphing and wondering aloud whether such changes are necessary or wise...

Change already.

Why?

Because the people we exist to SERVE have asked us to. They assure us that those words hurt them.

That is enough of a reason.

We medical professionals are in danger at all times of abusing the status and power that our expertise gives us--here is an opportunity to remember that it was NEVER about us!

Scary Next Steps??

So, in the interest of being responsive on language issues I recently asked a few of my self-advocate friends which terms they preferred. I suggested Intellectual Disability, Cognitive Disability or Developmental Disability.

One of my friends thought 'Intellectual Disability' was code for 'stupid.' But everyone pretty much thought all of the terms were neutral. And then one of my friends dropped a bombshell on me...

"Why do you need any label at all?" she asked.

That question has been ringing in my head ever since... As a nurse NO LABELS makes me very nervous. How would I categorize? How would I treat? How would I evaluate? Where would I begin? How would I.... the questions go on and on....

Yeah, I would have to base decisions on the individual. I would have to evaluate based on the actual--to wait and see how the person actually presents. I would have to base everything on relationship...

And dang if all those don't sound like GOOD things...

HMMMM!!!!

So, if we make this change will further growth someday be necessary?

Probably.

That's what happens in living organisms, isn't it?

Celebu-WHAT???!!!! Are you KIDDING me??

Apparently this week marks the release of the new book Celebutard by NY Post writer Andrea Peyser. A look inside the book at Amazon reveals that the author constructed the title by putting together the words CELEbrity and deBUtante. She added the suffix "TARD" because she wanted to convey to the world her heartfelt appreciation and respect for celebs and debs and her inestimable esteem for people with developmental disabilities and their contributions to our culture.

NOT!!!

She used the suffix "TARD" to convey her utter disdain for celebs and debs AND people with disabilities.

She intends not only to perpetuate the undeserved negative stereotypes that people with developmental disabilities contend with , but to profit from them.

I have to tell you, it makes me sick. Can you imagine if she'd used the final syllables of the "n-word" instead? Why didn't she, do you think??

I am curious what her friend Bill O'Reilly, who conceded on the air this week that his use of the "r-word" had been pretty tacky, will have to say...

You know what would be GREAT?? If Sarah Palin weighed in against this travesty...

Let's not wait for Bill-O or Sarah P. to do the right thing. Go to the Celebutard website, go down to the bottom to the contact us section and share your opinion. Also, if you happen to live where the author is appearing, show up and bring your "Words Hit Like a Fist" cards and T-shirts. Hers cannot be the only voice the country hears about disability.

Edited to add this idea someone shared: Leave a review on Amazon abut the book...

Also, it was announced this week by actor John C. McGinley (Dr. Cox on Scrubs) that March 31, 2009 will be the First Annual End the R-Word Day.

Dr. Cox, Andrea Peyser needs a housecall--and I'm not sure it can wait until 3/31.

Here's some food for thought .