Robert Ethan Saylor: The Tragedy Continues (A Blog Crawl)-with updates...

The death of Robert Ethan Saylor in a movie theater in Maryland on January 12 sickens and saddens me... and keeps me awake at night. He was a young man with Down syndrome who didn't leave a theater when told to by an employee... so their security guards threw him on the floor where he asphyxiated... There is, of course, more to the story, but these are the essential details.

First, I find it horrifying that anyone would be thrown to the floor for not getting out of a chair... anywhere... ever.

Second, I find it horrifying that the security people involved claim that they did not know that they should approach people with disabilities calmly, using simplified language and allowing lots of processing time... They were reportedly off-duty police... they certainly know this about working with elderly people...

And I am very sure that they know that handcuffing people face down on the floor can cause asphyxiation... because that is fairly common knowledge whether or not their 'perp' has Down syndrome.

Third, I am sickened that this young man died crying for his mom... while his carer tried to de-escalate the situation (and was ignored)... thinking that he was being beaten up by thugs... with observers who did not intervene for him apparently...

I could be this mom... my daughter could be trusted to wait for me... I could go to get the car... and someone could yell at her for some 'crime'... this yelling absolutely would flood her mental engine... she would NOT understand what they wanted... she would either shut down or yell depending on how scared she was... and I would find her on the floor under cops... dying. So she can NEVER be alone??? And not because of criminals, but because of law enforcement? This simply cannot be. (And... we do tell her to self-advocate when attacked...)

Fourth, the medical examiner ruled his death a homicide. The Grand Jury said he asphyxiated because of Down syndrome. Ummm, no he did NOT. Down syndrome does NOT cause asphyxiation. SITTING ON people with Down syndrome can cause asphyxiation... Without these guards' actions this young man would be alive--unasphyxiated.

Fifth, when approached by NDSC and F.R.I.E.N.D.S. (a DS support group started years ago by Ethan's mother) who asked for an independent investigation, the DOJ responded that they were waiting for public outcry... UGH.

Department of Political Smarminess would be a lovely new name. Justice is not about outcry, it is about RIGHT--do not sully the word.

I am including posts below so you you can read more. Some include information from Regal Theaters. Some are petitions. Please read, learn and generate some outcry.

NDSC
The Unknown Contributor
DOJ Assessing Death of Man Removed from Theater
Down Syndrome Uprising
Calm, Common Sense and Compassion Would have Saved Ethan's Life
Exactly Where I'm At
IDSC
Words Hurt or Heal
Petition Posted by Ethan's Mom--Sign Me!
Noah's Dad
About.com: Special Needs
Age of Autism
Concave Bed, Concave Life
With a Little Moxie
A Typical Son
The Chronicles of Ellie Bellie Bear
Peacock Panache
Ethan's Mom on The Daily Show??--another action to take!
The Arc
suncoastmama
Learning through Love
The Bates Motel
Cowgirl Up
Big Blueberry Eyes
Down Syndrome Uprising-Call to ACTION-- Actions galore...get to work!! :)
Enjoying the Small Things
Trial Run--New... addresses, letter to cut/copy/send (and well worth a read!)
Chasing Charlie





More to come!

Partners in Policymaking

Partners in Policymaking, an advocacy training program for adults with developmental disabilities and family members of people with developmental disabilities was started in 1987 by Colleen Wieck and the folks she worked with in Minnesota. This extraordinary group of people felt that if parents and self advocates had the appropriate skills and information, they could improve the lives of people with disabilities in their communities, in their states and the nation.

In the US Partners in Policymaking is federally funded through the Developmental Disability Act and administered through each states DD Council. In NY it is funded byt the Developmental Disability Planning Council and directed by Joyce Steel of The Advocacy Center.

I applied to be in Partners in 2002 and was accepted so one weekend a month for 8 months I made the 4 hour trek to the state capitol (Albany) to take my course. There were lessons on public speaking (“the microphone is your friend!”), person-first language, building life-visions, inclusive education, housing, community-building, the legislative process, rights, advocacy skills and more. We learned to speak publicly, to present testimony and to be attentive to each others strengths as well as accommodate each others' needs.

Partners in Policymaking is a leadership program and the presenters on each topic are top-of-the-line. My class heard Deborah Whitfield on person-first language and disability history, Al Condeluci on community inclusion, Lou Brown on transition and employment, Tom Harmon from the NYS Commission on Quality Care spoke about Willowbrook and taught us how to give public testimony, Pat Johnson from NYS CQC as well spoke about New York’s legislature, Jean Tellier spoke about housing issues, Curt Decker from NDRN taught us how a bill becomes a law and about working with legislators. And the list goes on: Rob Davies then at OMRDD spoke about housing issues and rights, Carol Blessing spoke about transitioning to adulthood and Sue Cullen presented on self-determination.

Cutting-edge ideas and principles are taught every year. Some classes have the opportunity to hear different speakers.

Being away once a month wasn't terrible either! It was always hard to disengage from my home life, but they were fine and so was I!

And as good as the presentations were, the relationship that was built between my classmates was by far the best part! I shared my Partners class with and extraordinary group of people. We were a diverse group—many races and religions were represented, there were people who came from the largest city in the country and from towns so small you can’t mapquest them, and we had a vast variety of ability levels.

At the first session, like most people, we circulated the room looking for people just like us to hang with, but as the sessions went on common ground was built and all of us expanded our definition of “just like us” to include everyone else. That diverse group of folks became a support system—-I can’t tell you how many times an issue would come up at home that I would tag to discuss when I got to Albany (and I can’t tell you how much I missed that when it was over!)

We learned to talk so that all of us could understand and we supported each other so we all shone—I helped one of my Partners remember to take his meds and he kept me on time schedules (He still does today. Thank you Jason!)

And those relationships continue today—with our own class and with the other graduates from across the state. In NY we have a graduate website and list-serv and when I am taking up a new project the phone line from here practically burns up with calls to the Partners I know who have experience with my situation in their town. We frequently unite on common issues as well. Among other things we have rallied for IDEA, in support of a family who lost their son who had autism to abuse, and we took part in a phone/fax campaign on burden of proof last year.

Let’s see, have I said it all? Great speakers, awesome content, leadership skill practice, full-immersion diversity training, ongoing friendships and a dynamic statewide network…

And do I have to say that all of this experience is an asset in your whole life?

The only thing left to say is: Find the program in your state, apply, attend, and learn to conquer the world!

(NY’s applications are available now, due March 14. Classes start in May and I’ll be presenting!)

I invite other Partners grads to share additional information and thoughts--just click on the comments button below!

Opportunity

My daughter is a VERY helpful child and rather fond of routines. So when she got home from school a while back she emptied the dishwasher for me.

All the dishes were put away in the cupboards….silverware in the drawer…all drawers and doors shut…’cause that’s how she rolls.

Yeah great, except I had run out of soap, the dishwasher had not been run. All around my kitchen dirty dishes were now mixed with the clean dishes in every cupboard. I hadn’t started supper yet and we had a full evening ahead. I might have cried but my daughter told me not to be a “drama mama.”

We ordered pizza and I began the task of cleaning every dish I own and wiping down the cupboards. Because I had nothing better to do.

Later I sat down with my computer for some well-earned blog noodling. I have a ton of favorite blogs—some about disability issues like this and this, non-profit issues and social change like this and this, some about scrapbooking like this and this and home and decorating blogs like this . The creativity out in the blogosphere is amazing.

Just a few weeks ago one of my friends and I were laughing about the women who post pictures of their tidy organized cupboards—something we agreed we would never be able to do.

Mid-surfing that night it dawned on me, because of my daughter, I had (for one brief and shining moment) designer blog-worthy cupboards!

Now I know disability struggles are often (usually) more daunting than a bunch of dirty dishes. But there’s also (usually) another way to look at things.

My friend Jackie the LEND Family Faculty Member at the Strong Center for Developmental Disabilities at the University of Rochester has this quote from fellow family faculty member, Darla Cohen, on her office wall: “Whether or not you planned to be the parent of a child with a disability, what are you going to do with this opportunity?”

Thinking about disability from this perspective is helpful in two ways.

Looking at our past struggles and cataloging the challenges we have met makes us realize how much we have achieved—even when we have felt like we were treading water. Try this exercise:

Divide a paper into 3 columns. Title the first column ‘challenge.’ Title the second column ‘what did I get to learn or do.’ Title the third column ‘what I do now—or could if I felt like it.’

When I did this I realized that I had learned and practiced advocacy skills, learned a lot about education and medicine, had had board appointments, had been the newsletter editor and president of a small non-profit support group, and more. And making a list of all the ways those skills help me (or could if I wanted them too!) was very reinforcing.

This works if you are a parent or have a disability yourself. One of my friends has had really huge challenges around transportation. To address these challenges he also learned lots of advocacy skills, he’s learned time management, to use a cell phone, creative problem-solving, and his way around our city. The transportation issues were a pain and nothing takes that away, but nothing takes away his new skills either.

Facing new difficulties from the perspective of recognizing opportunities is helpful too. It is easy to feel overwhelmed and paralyzed by the level of needs we face—at home, in our communities, in the country, and the world. Feelings of helplessness flood our engines.

Recognition (or creation) of opportunities under duress helps us stand back from our problems rather than under them. It allows our creative problem-solving engine to start.

For example, perhaps the horrors committed around the world toward people with disabilities in recent weeks may be an opportunity…to blog…to write a newsletter article…to start an organization…to pressure the US to sign the UN Disability Rights initiative…

Overwhelming or energizing? The choice is mine.

This is what I have learned from having a child with a disability—well this and not to run out of dishwasher soap!

(Image from here—my own cupboards are back to normal!)

More Horror in Iraq

(Thia is the press release from NDSC and NDSS)


The National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) condemned the use of individuals with Down syndrome by terrorists following dual bombings in Baghdad Friday. According to news reports, terrorists used remote-controlled explosives attached to two women with Down syndrome to kill at least 73 people.

Responding to news of the attack, NDSC Executive Director David Tolleson said, “this tragedy is compounded by the terrorist’s vicious exploitation of individuals with Down syndrome.” NDSS President Jon Colman agreed, noting that “this was not a suicide attack, these women were murdered, as surely as the other victims.”

This is not the first time individuals with Down syndrome have been used by terrorists in such deadly attacks in Iraq. On January 31, 2005, an explosive device tied to a boy with Down syndrome was exploded in Baghdad, in an act condemned at the time by NDSC and NDSS and others around the world.

Both the National Down Syndrome Society and the National Down Syndrome Congress urge the Iraqi government to use every available method to end the abuse of individuals with Down syndrome and to use this tragedy as a catalyst to enact and uphold policies and laws that will protect the basic human and civil rights of all individuals with disabilities.

Nastiness

When you enter the parallel universe of disability whether through accident, illness, or birth—yours or someone else’s—what is most shocking is the level of nastiness you can encounter. It’s mind-boggling really.

I do not intend to be depressing here—you can also encounter a lot that is heartwarming and even miraculous and these are awesome gifts. Talking about the heartwarming is inspiring and really pulls the heartstrings of people who have not experienced disability in a personal, intimate way.

Inspiration is awesome. The folks in the trenches also benefit from recognition of the other situations in our lives and hands-on help to get through them.

Disability means that a part of your body works differently—these differences impact people’s lives in varying ways depending on where, when, and with whom they find themselves and what structures exist in that space.

For example, an allergy is a disability that means your immune system works differently. On a midwinter day out on the frozen tundra, this may not be much of a problem, a surprise encounter with a rose garden on warm spring day—depending on how your allergy affects you—could be an entirely different matter.

Do you have antihistamines with you—or have a friend along who does? Will that antihistamine make you drowsy? Will you be able to get a ride home if it does? Are you with your adult friends or your 4 year old daughter? Is there a nice place with filtered and conditioned air handy? Or a phone?

All of these determine the extent of how disabling your disability experience will be—and it is subject to change.

This is true for all disabilities: I have a friend who has Cerebral Palsy. At her house she can unlock the door, cook, clean, use the computer, the bathroom, the light switches and everything else pretty much on her own.

At my house she can’t do any of those things alone.

This has nothing to do with the 15 minute ride from her house to mine (snarky comments about my driving will NOT be published!) It is because my environment does not accommodate her needs.

This is not nastiness, this is the nature of disability.

Nastiness comes from external sources that purposely or inadvertently sabotage the environments or supports a person needs to have access to their life—thereby making a difference disabling.

There’s my friend’s son who at the end of school last year had developed a group of good student behaviors which he was using in the regular classroom with success. This year the supports he needs to succeed were taken away from him and his classroom teachers told everyone that this is because he cannot learn in a regular class. His student behaviors deteriorated and his family disputed this. He has recently been evaluated and they have discovered that he is able to do much of his academic work at grade level—implying that he was learning in that classroom despite the inappropriate supports the teachers provided. (A similar shift happened to my daughter several years ago.)

Sometimes the reasons for this are the personal paradigms of the people involved.

In the allergy example if you are out with your friend who would never leave the house without a pharmacy, a phone and a full first-aid kit in her purse (because you never know…) your experience will be different than if your are with your friend who does not drive, use cell phones or put chemicals into her body that are not organically and locally grown. And if the people who find you gasping in the rose garden decide that it’s because you’re drunk or deserve it somehow they may well leave you there. Other people’s paradigms can create your reality.

Sometimes there are entire systems that undermine success. The district that wants to get funding for a special class may be vested in filling that class up—regardless of your child’s actual needs, for example. The institution that brings funding to a region may resist efforts to develop smaller community-based housing options despite evidence that those options are more cost-effective and provide better quality of life for their residents.

Other examples are insurance companies that deny things like wheelchairs and hearing aides saying things like “this is not medically necessary inside of your house.” (As if isolating a person in their house is a medically sound decision.)

Insurance is a racket—one mom I know of pays nearly $600 per month for the privilege of being routinely denied things like wheelchairs and standing tables and medications for her son. The only thing she pays more for is her mortgage—and when she wants to she can sell her house and keep the profits… If you are looking for a cause that needs fighting, insurance issues would keep you busy!!! But I digress…

There are examples of nastiness—some of it quite personal, some of it systemic—on many fronts. There are disability rights conflicts about healthcare, voting, employment, education, housing, and more ongoing—today. Check out the current issue of the Disability Blog Carnival to read about people’s experiences with professionals and their tips for success.

Pain. The result of nastiness is pain. It is exhausting, discouraging (that is dis-couraging) and sometimes overwhelming.

To handle the pain we can be thrown into a few modes—some more productive than others!

Avoidance. We accept anything—we take only paths without resistance. We smile and thank everyone for anything or nothing. We tell ourselves that the sow’s ear we receive is just as good as a silk purse (when what we really need is the blue vinyl one that is just the right size and matches our shoes!) We take no stands, we have no conflicts, we make no gains, we put up with whatever we must to feel better, we have whatever quality of life THEY allow us to have, AND an ulcer.

Aggressive Assault. We accept nothing. We fight everything all the time with every weapon we can think of—no holds barred. We are never satisfied because things could always be better. We turn down the sow’s ear, say that the blue vinyl should be silk and the silk purse should be diamond-studded—and if it is then it’s too heavy. We have tons of conflicts, we appreciate none of the gains we might make, we have a miserable quality of life no matter what AND an ulcer.

Advocacy. We speak up. We ask for what we need, we have many strategies—we persuade and negotiate, but if it turns we’re facing a nail we find a hammer. We respect ourselves and others and are proud of the things we achieve. We hold out for the blue vinyl purse if that is what we need—and are happy with it (it really does look great with those shoes!) We know we are never done, but we also know that advocacy is for problem-solving and best friends, hobbies and therapy are to make us feel better. We have a shot at a nice quality of life, and most of the time, avoid the ulcers….

Advocacy can turn nastiness into those heartwarming stories we all love to hear.

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.”