'Spread the Word to End the Word'

Post by Lindsay Spilker Tate.

Enough said.

Differences Don't Matter

After that heavy duty look at the criminal law, I thought it might be nice to take a step back and look at things from a different angle.

The following poem was written by Jessica Mercola many years ago as part of a diversity contest at her middle school. I found in in an issue of Exceptional Parent magazine back in 2002.

While she wrote about a "she", the sibling in her poem is actually a "he", her younger brother, who is 6 years old, has hypotonic cerebral palsy and profound developmental delay, is non-verbal and non-ambulatory and has the most gorgeous smile and eyes of anyone! [according to Mom and who are we to argue?]

I have brown hair.
She has blond hair. 

I have long hair.
She has short hair.

I am chubby and short.
She is skinny and tall.

I have braces and glasses.
She has freckles and cerebral palsy. 

I can draw, ride a bike and read.
She can't do any of these. 

I can walk and sit.
She has a wheelchair,
and tries to talk
but out comes noises,
silly ones. 

I like to chew.
She likes to go for long walks. 

I am stubborn and loud.
She is sensitive and caring. 

I am outgoing and fun.
She is different and interesting. 

I go to dance.
She goes to therapy. 

I drink from a cup and eat regular food.
She drinks from a bottle and eats pureed food. 

I like to play outside.
She likes to play with noisy toys. 

She doesn't make any choices.
We make them all for her.

I think I have a good life.
Hers could be better. 

Every day I watch her grow,
in sorrow, laughter and snow. 

I hope no one takes her away.
I would be lonely and miss her every day. 

I start every day with the positive
attitude that one day she'll be
just like me! 

I don't care what we are.
I love her anyway. 

I don't care what other people say.
We'll always be sisters and
the best of friends.
That's the way it's going to stay.

Cross-posted at Free Falling

Paralympic Athletes Writing Next Chapter in Human Story

Reading the latest issue of the IWK's Village Voice this morning, I was struck by this piece by Warren Reed, a human rights activist in Halifax.

All 20 of the fastest times in the 2012 Boston Marathon belong to wheelchair racers. In fact, Canadian wheeler Joshua Cassidy (1:18:25) had time for a nap while waiting for Kenyan runner Wesley Korir (2:12:40) to finish. A luxurious 54 min-utes, to be exact. Gravity? The course does drop 425 feet in 26 miles — a barely noticeable three-tenths of one per cent grade — but that benefits runners and wheelers alike.

Meanwhile, the course has some daunting uphill stretches, and dragging an extra 15 pounds of wheelchair up Heartbreak Hill surely offsets any advantage from turning potential energy kinetic.

But this is apples and oranges, angels and pins. One shouldn’t be confused by the artificiality of divisions into thinking there is a single winner of the Boston Marathon, and then some women and then some wheelchairs. They’re all committed athletes, running the same race differently.

People with disabilities have a special perspective on difference — we are, in many ways, defined by it. Many of us embrace our differences as extraordinary gifts.

Some would say Stephen Hawking won a Nobel Prize in spite of his condition. People with more imagination might wonder if it’s because of his condition. Conventional thinkers see him as suffering from Lou Gehrig’s disease. (Lou, by the way, was not a bad ball player.) I’d say Stephen Hawking is a pretty spectacular physicist and that there’s a decent chance his achieve¬ment is connected to his physical characteristics. At the very least, his circumstance provides an unusual perspective on the universe.

You can read the rest of the piece by clicking on the Weekly Update: September 7, 2012 link on this page. I would suggest that you do.

The Art of the Possible

My youngest daughter and I attended the Values, Vision and Action Workshop this past weekend, the first in a series of workshops in the Coming Together ... To Create Change: A National Family Leadership Workshop Series.

Co-hosted by both the CACL and the NSACL, it was billed as an exploration of who "we" are - as a movement, as family leaders and as agents of change.  And although the history of the Community Living movement was discussed - where it came from as a movement and the milestones that have shaped its history - as was the future of where we want to go, at the heart of the weekend was a discussion about creating good lives for our sons and daughters and all people with intellectual disabilities and what is needed to make those dreams and aspirations a reality.

I have been to many different workshops on various disability-related topics over the years and while all most have been valuable, I have found that the vast majority have tended to consistently fall short at the end of the day.  Although powerful stories and valuable information are often shared and many possible solutions are brainstormed, there never seems to be any concrete action plan created.  Instead, we all go home and individually return to the task of slogging our way through the fight of trying to ensure that our loved ones are meaningfully included in society.

And that is where this workshop felt different. 

But before we got there, I would like to share with you a realization I came to Saturday evening; namely, that for me, personally, the Saturday afternoon  program could have easily been renamed "The Art of the Possible".

Totally Illegal Not Legal ...

Not at all legally- related but very cool, I think.

Check this out.

The world's first ultra-accessible family fun park/amusement park specially designed for children and adults with special needs. Grand opening is April 10, 2010, San Antonio, TX.

Morgan’s Wonderland ...

• Located at the former site of the Longhorn Quarry
• 25 acres in size, and is the first Ultra Accessible Family Fun Park in the world!
• 8-acre lake stocked with a variety of fish
• Controlled entry and exit
• Features RFID locator wristbands and touch-screen display monitors so parents and caregivers can keep track of family and friends
• Fencing around lake edge as well as security fencing around the park’s perimeter for added safety

Activities & Amenities include:

• Specially designed air-conditioned/heated and oversized ADA-accessible restrooms
• 3 playscapes
• Train rides with wheelchair-accessible cars
• Ultra-accessible carousel
• Amphitheater
• Catch-and-release fishing
• Water cannons & remote-controlled boats
• Gymnasium (basketball, volleyball & tennis)
• Special Event Center for up to 700 guests
• Walk and Roll Path around lake
• “Around the World” – themed rest areas
• Water Works - water play area
• Off-Road Adventure ride
• Music Garden
• Swings (several types including wheelchair swings)
• Sand Circle™
• Sensory Village™
• Garden Sanctuary with Memorial Wall
• Several rest stops, picnic areas & pavilions
• 2 first aid stations & infant feeding room
• Braille signage, 3-D park model & service-animal rest area
• 2 gift shops
• VIA Transit Center

All that plus Morgan’s Wonderland is free of charge to everyone with special needs. And designed for individuals (both adults and children) with a broad range of cognitive and physical special needs, it offers many unique features such as braille signage, a 3-D park model and a service-animal rest area to make the park accessible to those who are hearing and visually impaired.

Go ahead and check out Morgan's story. But I would really suggest you watch this news story on the Park. Then you'll really get it.

Makes me want to pack up the family and hit the road south, it does...

The Beauty of the Games

The beauty of the Special Olympics isn't found in the ceremony and pageantry. It's not in the visiting dignitaries or those waiting to be introduced on the main stage. It's not even in the medals (purty as they are).

No, the beauty of the Games lies in the fact that it's the one place in this world of so-called "normal" that these youths and adults not only get to just be themselves but are celebrated for being themselves. Where, for once, they are not trying to 'fit in' to what everyone else thinks is acceptable, appropriate behaviour. It's the one time a year when they are celebrated for who they are. And celebrate they do.

I will never forget the first time I attended the Games, three years ago. The one thing that struck me so much on that occasion was how every single athlete was roundly cheered through to the finish. How that very last swimmer, who could still be a very long way behind after his fellow athletes had finished the heat, was still cheered just as heartily on to victory as was the first-place finisher. Cheered on to his victory.

And yet it's not just the athletes who flourish in such an environment. Rereading one of my favourite books this past weekend, I came across what struck me as the perfect words to describe why the Special Olympics are so vital, not just for the athletes but also for their families.

In the chapter aptly-titled "Acceptance", Barbara Gillis writes:

We all need people who see us as good and competent parents and who do not blame us for wrong is 'wrong' and difficult about our child. We all need places to go where people look past the fact that our child doesn't talk or doesn't respond to our directions. We need people who admire his physical beauty and his curiosity, or who recognize how clever he is in his mischief. We all need to go where our family is accepted as it is, and delight is taken in us and each of our children. And we all need people who show us the way, leading us by their example to the confidence or pride we have been struggling for. An ounce of this love can offset a pound of criticism and hostility. In its presence we open up like a day lily to the sun. If it isn't there, we have to find it...

The day lily survives the night, closing its bloom, protecting itself until morning, when it again shows its fullness to the sun. We can protect ourselves and exist in the places where people deny our child and us the sun of acceptance, approval or praise. But we and our child must have our sun. We must have people who shine on us and places where we can relax, open and grow.

This past weekend my oldest daughter and our family basked in the warmth of the sun. There are no better words to describe it.

'A Journey of 1000 Miles'

So I attended the AVRSB Learning Disability Conference today.

As I already noted, the speaker, Rick Lavoie, has quite an impressive and extensive resume in the field of special education, holding three four degrees in special education and having served as an adjunct professor at numerous universities. He also served as an administrator of residential programs for children with special needs since 1972 and now serves as a consultant on Learning Disabilities to several agencies and organizations.

This they tell you. What they don't tell you is that he has what describes as "moderate to severe ADHD". Not that you (or at least I) could tell, not until he said it. I had noticed that he looked at his watch quite regularly but the fact that he used a wireless microphone, giving him the ability to move around at will, didn't stand out for me. Not until he mentioned it.

His sons also have ADHD. Which didn't really surprise me given that I've often found that the best professional in the field (be it teacher, lawyer, psychologist) is the one who is also a parent of a child (or himself lives) with a disability.

A few years ago (at the same Learning Disabilities Conference, if I recall correctly) I had the pleasure of listening to Dr. B. Duncan McKinlay, a psychologist who has been diagnosed with both ADHD and Tourette's Syndrome. His presentation was entitled "Life's A Twitch" (go check out his website) and it was an absolutely amazing experience to hear his story and insight.

But I digress.

Rick's topic was The Motivation Breakthrough: 6 Secrets to Turning On the Tuned-Out Child. He's a very good speaker and although I might have appreciated a few less anecdotes and a little more substance, it was an interesting and productive day. I took some notes so perhaps at some point I might be able share some of his thoughts on what exactly does (and doesn't) motivate, not just our kids, but all of us.

Did I mention that he's a very good speaker?

One of the first things I noticed was how he was able to connect with both the parents in the audience and the professionals.

And, it was in that regard, that there was something I really wanted to share with you tonight. But first let me say that I am neither a Republican (thank goodness) nor a Democrat (thank goodness again). Although I have been impressed, on occasion, by Sara Palin, when it comes to issues around disability. For example, if you haven't yet seen this video, I would highly recommend it.

But Rick told the story today of how he was asked to write a newspaper piece during this past US Presidential election with his thoughts on Governor Palin's promise to be a champion for "special needs families" because she "knows what they are going through".

He shared with us his response, which he now has posted on his website, and which I found truly amazing.

As an advocate for families of handicapped children for over three decades, I have taken a special interest in the role that Trig Palin is playing in the Presidential campaign. Trig, now six months old, is nominee Sarah Palin’s son. He has Down Syndrome. Governor Palin often tells her audience that she will be a champion for “special needs families” because “she knows what you’re are going through.

With great respect and empathy, I must say, “Sorry, Governor, but you don’t.” You will…someday. But not now. Not yet.

Trig is – and always will be – a blessing in your family’s life. But, Governor, your journey has just begun. You will understand…someday. But between that day and today, there will be a lot of other “somedays.”

Someday…you and your family will spend stressful hours in a hospital waiting room while Trig undergoes corrective surgery. The doctors will call it “routine” … but that characterization will seem foreign and insensitive to you.

Someday…a relative or “close friend” will suggest that Trig not be brought to a holiday function because “it may be too much for him to handle.” Your relationship with that person will never be exactly the same again.

Someday…some stranger in a store will stare at him and ask an insensitive and intrusive question. Startled, you will give a bland response. But for several days after the incident, you will generate great and clever retorts that you “should have said." (By the way, you won’t be able to recall these “clever retorts” the next time this occurs).

Go read all of it.

And watch your life unfold before your eyes.

Simple Truths

And so we come to the end of one year and the beginning of yet another.

A time when some will care to make resolutions as to what and how they will do things differently in the new year. To be followed by a time when many of those grand plans will fall by the wayside.

May I suggest that instead of New Year's Resolutions, we strive to follow and remember these simple truths.

Simple. Beautiful. Timeless.

Check them out and see if they might fit your life. I know they do mine.