Jessie Flips: About Kingston

line up for Able Artists Forum

On November 21 and November 22 of 2012 I went to Kingston with Shara Weaver, Renata Soutter and Liz Winkelaar from Propeller and it was really fun. We went to present at the 2^nd annual Able Artists Forum for artists with disabilities, hosted by H’Art in Kingston. We talked about Propeller and integrated contemporary dance.

I LOVE to stay in hotels

Both Shara and Renata got a drive with me and my mom to Kingston and we listened to Justin Hines’ music and we talked. And when we were in Kingston we stayed at the Marriott Residence Inn. It was so amazing. Shara and Renata were next door in room 310 and it was like they were our neighbors. Liz and David stayed with my mom and me in room 308.

Kingston Old City Hall

Then we went into the space where the forum was going to take place: in downtown Kingston at the City Hall. It is a really old building and just a walk/wheel away from our hotel. We took a look around and Renata talked to the tech person who was helping us about the CD that we were using and we looked to see if the ramp and the space was okay to dance in. Earlier that day we went over our speeches, and it went quite well. Then we went back to the hotel to rest before the show.

Shara, me, Renata checking out the space

Then we went back to the hotel to rest before the show.

I like to write to relax.

Shara was really, really tired! They just came back from Calgary before doing another performance in Ottawa and then driving to Kingston! She even put her pajamas on to rest! 

Some of the other artists who were there included a visual artist with a mental health disability (Don King from Different Strokes), a musician who is blind (Barbara MacDougall), the famous Justin Hines, who was very inspiring, and then 3 dance company/artists. So, as well as us, Propeller, there was Melissa Addison-Webster who is doing performance art in Toronto with people with physical disabilities and who are part of the deaf culture. She talked a little bit about how long it takes to create a piece and to make sure that everyone has the support they need to participate. She has lots of energy and is very creative!

Renata, Liz, Jessie rehearsing on the carpet

There was also Menka from des pieds des mains in Montréal. She talked about setting high professional standards and she showed two videos. One was a dance piece, and the other was interviews with the artists about being an artist. Some of her dancers and performers have Down syndrome. I met some of them last year and we went out for food and a beer after the show and we had a great time. It was great to hear other artists with Down syndrome speak. It was in French, but there were subtitles.   

That night after the presentations were over we socialized and talked with people. It was really fun and really exiting, I talked with Menka from Productions des Pieds Des Mains. In Montreal there is a post-secondary school for artists with intellectual disabilities. They work on drama, speech, music, and dance, and they get jobs in movies and theatre. I’d like to go there and to dance with Menka sometime. But I don’t speak french.

Another amazing moment was when we went out to tea with Melissa Addison-Webster with Renata, myself and my mom, my mom and I had a Veggie burger to share and it was really good. I even had a beer. Melissa Addison Webster is a performance artist. She is way talkative and she asked me lots of questions about my life and my boyfriend and we laughed a lot. That was fun.

Shara, me, Menke (back) then Liz and Melissa

Shara, Renata, me outside H'art

And another highlight about this trip was with H’art of Kingston On the last day we visited and went in and spoke to the students, but it wasn’t planned. I spoke about performing and teaching and advocacy. There were a lot of adults and students with Down syndrome and other disabilities there. They are all artists too. And there was a great idea: Shara and Liz thought it would be great if I went back next year to teach a workshop. We’ll work on that! So that’s a goal. My mom and I also want to go back to visit and to talk with Katherine Porter (she started H’Art) about IPSE, Inclusive Post Secondary Education. They have a program there with Queens University.

Now I have to go finish editing my talk for the transition fair on Saturday.

Retro Jessie: Life With Jessie 9: Dancing at Dinner [1995, 5 years old]

I am ready for school to start. It’s been a long hot summer and I am tired. Tired of doing battle with a very stubborn 5 year old. Dan says she comes by it naturally and looks at me sideways in a knowing manner. Okay. Okay.

But my greatest fantasy is to wake up, see Jessie’s smiling face, say good morning, and have her say good morning back. Instead, the first words out of her mouth, to me, are “NO!” It doesn’t’ really matter what I say, I just provoke this automatic response in her. She has also taken to stamping her foot, turning her back to me, and sticking her noise in the air in an attitude of “you can’t make me do anything!” I am exhausted with my very concentrated efforts at patience and consistency. And when I lose it  . . .  well, I know what the Queen of Hearts in Alice in Wonderland is based on. That overwhelming and irrational cry of “OFF WITH HER HEAD” is a very good likeness of me around dinnertime at the end of a long, hot summer day.

I go to bed at night with parenting books trying to figure out my options. The most appealing is a long holiday by myself, which is just about as likely as winning the lottery. So I find solace in other mothers of five year old daughters. We remind ourselves that five is a difficult age as our daughters strive for independence and separation. We trade ideas on how to give them responsibility that they can manage without causing anyone bodily harm and brainstorm natural consequences. We all agree on one thing. When our daughters reach adolescence, we’re leaving home.

My biggest battle with Jessie has to do with her sense of time, or lack of it. As a toddler, I didn’t expect her to fully grasp the concept. After all, wasn’t it her job to explore every diversion between home and playgroup or the park? The double acorn, the crooked front steps, the feel of grass as you lie looking up at the sky and can’t  figure out why your mother is closing her eyes and counting to 10. Playgroup starts when you get there. Isn’t that the way the world works? Oh, if only it did. Any transition, any movement from one location to another could last as long as three or four hours if we went on Jessie’s schedule. And then she would miss so much—like school, playing at the park, and swimming lessons.

Jessie loves swimming. This summer she took lessons every morning and finally mastered this breathing thing. Fearless as she is in the water, flailing and grinning with wide open eyes, it has taken her a long time to realize that you take a big breath before you put your head in the water.

But when you finish swimming you have to get dressed and go home. Well, I guess you don’t have to, but hanging out in a locker room for a couple of hours every day is not my idea of fun. I guess I’m too driven, in too much of a rush to get on to the next thing. But I would like, just once, to be able to go from point A to point B without having to plan for each step in order to avoid a battle with Jessie over: getting out of the pool, getting into the locker room, not going in the whirlpool, getting in the shower, getting out of the shower, going to our locker without climbing inside very other locker (there are more than 100 of them), putting on each piece of clothing, and so on . . . One day I followed her lead and we got out of the locker room two and a half hours after her lesson. And while I’m willing to do this sometimes, there is no such thing as sometimes with Jessie. If you change the routine or don’t follow the well-mapped out plan and forget to be consistent you are right back where you started—prodding, reminding, ignoring, coercing, and on really bad days, yelling.

Sometimes I feel like giving up, but I don’t because I want, so much, for her to be independent, to do the things that she can do by herself. And the look on her face, when she gets her bathing suit on by herself or gets the paints out, is worth every one of my own personal battles with frustration, anger, guilt, and exhaustion.

This summer seems to have been extra hard on both of us, and when Dan comes home from work, I just want to go to bed with a good book and dissolve into somebody else’s world.

But dinner is the time for us to be together as a family, share moments of our day and reconnect. It’s  a time I would like us to savour and enjoy. It doesn’t always happen. We’re tired, it’s hot, Jessie wants to play trolls with Dan, and there’s Mom with this image in her head of the happy family around the dinner table.

It’s Dan’s turn to do battle with Jessie about staying at the table until she is finished. I’ve given up.

For the seventh time she pushes her chair back from the table and just as we are about to tell her that her place will be cleared, she says “I will dance for you.”

Dan and I close our eyes, weighting the consequences. We should say, “You can dance if you are finished your dinner,” we should be consistent, we should follow through. Instead, Dan turns up the volume.

We sit and watch Jessie dance. She sways and moves her shoulders and turns and pirouettes. Her eyes are half closed as she listens to the rhythm of the jazz and is moved by it. Some of her awkwardness is transformed into a delightful quirkiness that is both cute and very serious.

As I watch her dance in the fading summer light, I realize with a pang how much she has grown. She’s developed her own way of moving, of listening to the music that is this life around us. My only hope is that we’ve given her enough courage and comfort to always want to dance at dinner.

The music stops. She bows and looks at us expectantly, defiantly, with pride. Waiting for us to clap. We do. Not because the dance is finished, but because it continues.  

Be Out There, Two: The Ripple Effect

Last month Jessie was invited to speak to a group of students at a school-age daycare program about acceptance and inclusion. One of the program staff (TW) had been in the audience when she participated on a youth panel (of “difference makers”) at a conference. While she has spoken often in the context of performing and has been invited to present to government audiences on employment and on the arts, she had never been the “headliner” (read only presenter) for a group of students. We made sure that she arrived at the right place at the right time with a speech/presentation that had gone through at least one round of edits (with us) and had been rehearsed at least three times in the living room.

The audience (a group of about 35 or so children between grades 1 and 4) was wonderfully attentive and the whole experience was great for Jessie. But the wonder of it all for me was played out first, in the reaction of one of the students with Down syndrome and second, in the ripple response as shared with me by one of the staff.

As I sat at the side of the room listening and watching I tried not to pay too much attention to Jessie (that just made me too nervous), but instead focused on the children’s faces and their responses to what she was saying. The moment that almost made me weep was right at the beginning when she said “I’m a dancer . . . and I also have Down syndrome,” and one young girl’s face just lit up as she gasped in recognition, tugging on her friend’s arm and pointing to herself. “Me too,” she mouthed. “Just like me!” This young girl with Down syndrome could barely contain her excitement that this speaker, this dancer, this competent young woman, had Down syndrome just like her. That moment was pure gift: that Jessie could show this girl that she was not alone, and that this young girl could feel a connection and a sense of pride in herself AND in having Down syndrome.

The second wonder was when TW thoughtfully shared the repercussions of Jessie’s talk at the Centre. She wrote: ". . . honestly it is us who would like to thank Jessie for her Courage, Determination, Confidence, Willingness, and Inspiring uplifting Personality [caps hers!]. We loved having Jessie here to speak and the experience went exactly as I hoped. Jessie is extremely inspirational and moves me and others in so many ways. I want her messages to be heard.

I have to share some of the impact of the visit. One of the children is working of a story called ACCEPT, While other children who normally have nothing to do with M [a student with Down syndrome], took time to speak and include her in play. This makes my heart sing.

Several sang, danced and celebrated the joy of music. Including everyone. So many of the children shared experiences of feeling left our not accepted or not belonging.

We hope to continue these discussions and continue to be the change so that everyone feels valued, accepted, included and heard."

This is the gift of Being Out There: that we share ourselves with the world, and in doing so, transform it.

This is the talk that Jessie gave:

Hi everyone. My name is Jessie Huggett, I’m 22 years old, and I’m a dancer, an advocate and a public speaker. I like music, singing, writing songs, dancing, and ice cream! I also have Down syndrome.

Down syndrome is something you are born with. You know how our bodies are made up of millions and zillions of tiny cells. Well, inside EACH cell are even smaller things called chromosomes. Most people have 46 chromosomes in each of their cells. But people with Down syndrome, we have something extra! We have an extra chromosome, so we have 47 chromosomes in each of our cells.

It sometimes takes people with Down syndrome a bit longer to learn to do things. But we all have ways we are different. And we all have ways that we are the same. This can make life fun and exciting. Or it can make life difficult.

When I was your age, at school, sometimes I felt ignored and invisible. And sometimes It felt like I didn’t belong. I got left out because I was different. It made me feel angry and hurt.

But I want to share a funny story with you about that. It’s about how I met my best friend. This story was set in elementary school at recess time. I wanted to go on the monkey bars and when I tried it the kids were laughing at me because I couldn’t do it very well. I got so mad I sat on someone. And that someone—Rachel—became my best friend. She understood why I was frustrated and angry. It made her mad too. So she included me in lots of games and we invented new worlds where everyone was included.

Now, I don’t want you to go and sit on someone! But maybe, if someone is left out, you can be like Rachel. You can be understanding and include them.

Rachel and I grew up together. We liked the same things: writing, acting, stories, and inventing. She taught me how to play the flute and I got her interested in dancing. And she joined the dance company I was with: Dandelion Dance. And through that company I created a dance called “I AM.” The dance talks about inclusion and the barriers. I am going to show you that video now. [ show video]

Inclusion is really important. Friends of mine in England say “The only real disability is loneliness.” I think this is true. It doesn’t matter if you speak or sign, if you walk or roll, if you’re a girl or a boy, or where you are from. The important thing is that you have friends and you have a voice.

I created I AM for a dance company called Dandelion Dance. Dandelion is a dance company for all women ages 13 to 17. We all create our own dance pieces about world issues that are important to us.

When I got too old for Dandelion I joined another inclusive dance company called Propeller Dance. Propeller is a mixed ability company. In Propeller we have a wide variety of dancers of all abilities some use wheelchairs, some are able bodied and some have guide dogs. We all dance together and we all create and perform. Later this year Propeller is coming here, to perform for you!

Both Dandelion and Propeller are really inclusive. That means everyone is respected and valued. We need MORE inclusive places. Places where everyone can belong. And it can start with YOU!

Each and every one of you is special. You have a gift and a talent and I want you to share that gift with the world. And help other people share their gifts. We’ve got to listen to each other. If you want to change the world you’ve got to start small. And it starts with you.

Be Out There

photo and page copyright Hannah Beach, I Can Dance a Better World

One of the things that I have learned over the years with Jessie, is that just being OUT there in the community—going to the library, walking to school, using the community centre, drinking coffee at the local coffee shop, sending her out for movies or bread, or just to the bank at the corner—is the best inclusion strategy there is. While the goal might sometimes look like getting books or doing the banking, I have come to see that the “real” goal (i.e., the most meaningful goal) is connection, to become insinuated into the warp and woof of this multi-textured tapestry that is community.

This has often meant letting go of certain outcomes (such as learning to do up buttons, or ensuring total safety, or getting the exact movie that we wanted, or paying a reasonable price for bread), but being open to experiencing others (such as learning how to sneak up the down part of the slide without the teacher noticing, or a complex people-based safety net that returns your daughter when she escapes the house without you knowing and heads off to the river, or her being a shoo-in for a coveted volunteer position at the library, or being asked to preach at church in front of an adoring congregation).

Over the years, Jessie has taught me that to be out there is critical: to life, to living, to loving, to contributing. And only IF our children are out there, if we take a risk to let go of some of our expectations and let the world (and God/the universe/or some other un-nameable higher power) help determine outcomes, is it possible to live a good and meaningful life. A life filled with giving and receiving, freedom and responsibility, loving and being loved.

So we committed ourselves to getting her OUT there and continue, as her world expands, to see the unexpected outcomes create new possibilities and connections that nurture her and nudge her into places we might not, on our own, lead her.

As she gets older, being out there also means that she is much less dependent on us for her sense of self. Which is a good thing! As I can be a bit of a naysaying witch master (you call THAT putting your clothes away?) at the best of times. Being out there also means that she builds circles of support and meaning that are rooted in her daily pursuits and passions.

When Jessie registered for the Introduction to Public Relations course, we had a few goals in mind. These included learning to: take notes, track assignments, participate in college-level discussions, negotiate the Centre for Students with Disabilities, take a new bus route, take tests, and begin to find her way around the college campus. Her goals included: being a college student, learning about public relations, being a college student, eating in the college caf, and, being a college student.

Instead of waiting for the perfect circumstance (an inclusive and supportive program and structure), we jumped in with what we thought might be enough to sustain the experience and trusted that the universe might just bless us with a few surprises. And it has.

Jessie has had the experience of a wonderful instructor who fully includes her in all discussions and who seems completely and naturally comfortable with Jessie as a full-fledged member of her class (what does that tell you that we did not assume that this would be so?). While the mark on her midterm is still an unknown (they get their marks tonight), it seems a smaller part of her education and definitely a smaller part of her experience. She has made new friends and contacts . . . eager to share her accomplishments with each other. This is the e-mail that came in the other day:

Good morning all! [sent to class list]
I was enjoying a lovely commute in to town this fine spring morning and what lovely voice did I hear on CBC radio? Our very own classmate, Jessie! Here is the link to the full segment: [click here to link and listen to the CBC morning show item]. Jessie, I recognized your voice and passion for dance right away. Awesome job! Talk about great public relations for such a wonderful initiative!
X

It’s so wonderful to have peers and people with whom to share your accomplishments!

For those interested, I've included a brief clip from the video of the dance that Jessie created below; Hannah’s full website can be found here.



I wonder . . . what unexpected consequences have you had from being OUT there?

Off to Camp

We just dropped Jessie—along with her sleeping bag, rubber boots, and a bag of clothes—off at the buses leaving for Camp Misquah. She’s been looking forward to a full week in a lakeside cabin with friends and high-energy counselors. Misquah has certainly become a traditional part of her summer life.

Country Gal, Black Belt Belle, Lady Lyrics, and Jessie

While some of the campers waved a tearful goodbye to their parents, Jessie made a beeline from our car to the check-in location and then bounded off to find friends and returning counselors. We were really only there to schlep her bags, I guess. She was, however, happy to wave at us from the window as the bus departed and we parents and caregivers were left, a bedraggled lot, to head out variously to delightful vacations of our own or much needed house and garden repairs.

I always feel a bit anxious at the empty space that yawns open after we drop her off, and have, over the years, found different ways adjust and cope. Today Dan and I decided to go straight to the grocery store.

On our way there I told Dan that I was feeling quite sad. “It’ll pass,” he said. I wondered how long it might take and if my sadness would ruin our time together. By the time we entered the store and I got to the produce section, I was feeling anxious. Jessie, the touchstone of my days, was gone and I wasn’t sure how it would all unfold. Would I be able to focus on anything? Would I be kind and loving with Dan or keep thinking about Jessie and her life and her future and whether she had remembered to change her underwear?

I was distracted and wandered behind Dan as he put lettuce and bread and cheese into the cart. I drifted down aisle 1 and thought about how I might not have to fight over my computer for a whole week. That made me smile.

At aisle 4 I remembered that we needed some salad dressing and it occurred to me that for a whole week, we could actually put tomatoes in the salad (Jessie doesn’t like tomatoes).

At aisle 9, I was madly flinging packages of black licorice and Junior Mints into the grocery cart to accompany Dan and I to all the movies we were going to see together.

Nine aisles, that’s all it took. I guess I’m just a resilient kind of gal!

Dancing Through Canada Day 2011

On Friday, July 1st, we headed downtown just before noon for the Canada Day celebrations and to get Jessie to Major’s Hill Park for the flash mob that she was involved with doing a choreography to “Like a Waving Flag” by K’naan. (Flash mob = group of people who assemble suddenly in a public place, perfrom an unusual or artistic act for a brief time, then disperse, often for the purposes of entertainment and/or satire see also random acts of culture for some really fun flash mobs). Emphasis on MOB, as we got stuck on the wrong side of Wellington St. when Kate (hold on to your fascinators everyone) and Will were due to pass by on their way from Parliament Hill to the Governor General’s. I have no pictures of that famous couple because we were squashed on the edge of a steep set of stairs along with 30 million (sorry, apparently the official count was hundreds of thousands) other sweating, red-maple-leaf-bedecked tourists and natives (as in native to Ottawa). Also, I wasn’t really interested in photographing them or getting near them and our brush with the royal couple was purely circumstantial—we were trying to get through the Wellington Street madness to join the Majors Hill madness so Jessie could be on time for the flash mob.

I will be kind to us all and not give you a complete blow-by-blow (let's just say some words were said that were not majestic and we had to hoist Jessie over a three-foot metal-pronged fence, going against the crowd) description of our journey. Suffice it to say that we made it, and the video (see below) is the proof!

Then we went home to gather up our strawberries (what is Canada Day without strawberries?) salad, and elderflower water to join the extended family descending on my friend Cathy’s house (Rebecca and Rachel are her daughters and the stars of many previous posts) for dinner. The gaggle of youth that had collected then headed out for a night of swing dancing hosted every Friday night by the Ottawa Swing Dance Society. Accessorized appropriately with large bottles of water. I do bless the Gray’s every day for their unique and delightfully inclusive group of friends, family, and acquaintances.

Living the Dream in L.A.

I called Dan and Jessie in L.A. yesterday morning to see if they were surviving. The last time I spoke to Dan was a hurried call the morning they arrived (after flying across the country all night and not really sleeping) when he asked me if it was okay to give Jessie Pepto Bismol and if it was normal for Jessie to ask why she was vibrating. Huh? I just said yes, okay for Pepto-Bismol and anything is normal for Jessie on the road and then went back to my Lenten readings thinking L.A. is in the desert right? So Dan gets the wilderness, I get the honey, and I’m not going to ask any more questions!

When Jessie answered the phone, she exclaimed, “I’m living my dream!” I guess the Pepto Bismol worked!

It turns out that the day before they had walked along Hollywood Boulevard and when they got close to Grauman’s Chinese Theatre (where all the stars' hand and other prints are) there were buskers in weird get-ups and loud music blaring. Jessie looked, listened, and then—decked out in her new bright pink sparkly Hollywood t-shirt and sunglasses—began to dance, doing her hip-hop choreography to some Rihanna tune. She refused to look at Dan, who was madly miming for her to stop, and just sucked up the attention as people stopped to watch and then looked around for a hat or some other receptacle in which to place money. When they saw Dan—who had by now surrendered and was filming it on the Flip (we try to chronicle all our daughter’s forays into madness)—they asked if he was her father, and then complimented him on her dancing.

According to Jessie, all their plans for the day were thrown to the wind and they were going back to Hollywood Boulevard. This time she was going to make Dan bring his baseball cap. They’ll either get rich, or arrested. Yup, she’s living her dream.

Jessie Flips: About Her Creative Side

Jessie's latest Flip, about how important the arts are to her.

Links for the organizations she is talking about: Propeller, Ottawa School of Speech and Drama, and H'Art of Ottawa.

Jessie Speaks: About Dance

I love to dance it's one of the ways that we can all express ourselves. And we get to see who we truly are. It's a blessing, gift and talent that god gave you. In my opinion dancing is relaxing and it can help relieve stress. You can believe in yourself. For me it's hard balancing school life and dance life i just wish that it would balance out. The more I’m educated the more I want to dance, teach and perform.

Dance with Alana, Part 1: The GPS [hijacked]

In which Nan starts to write about a single day, reads it to Jess, gets reprimanded for the use of the word “schmooze,” and Jess takes over the blog.

Another day, another performance, another good-bye! That’s June. That’s Jessie’s life. The only thing that makes it easier is the GPS Dan bought me as a present. I just plug in all the addresses (dress rehearsal here, year-end party there, quick meal on the road here, performance over there) and my true life’s calling as a chauffeur is actualized.

Yesterday presented a bit of a challenge, as Jessie had to go from the Dandelion year end/good-bye pool party (staying only an hour when the party was continuing on past dinner and into the evening) to the rehearsal and performance for a dance studio--Dance with Alana--where she has taken up hip hop. I had tried to talk her out of this performance, knowing that the year-end Dandelion party would be a highlight (it was beside a pool and they were doing spa stuff in addition to eating a delicious dinner with cake!). But her genes (the performing ones, not the Down syndrome ones) dictated that ‘the show must go on.’

Of course, I sent Dan in to pull her out of the pool party—I made the excuse that I had to program the GPS. It’s just way too hard to do ALL the things you want to do without some activities conflicting with others, and its just way too easy to blame Mom (moi) for the conflict or the necessity of leaving. So when I have the chance to put Dan in the line of fire, I do.

We did get her out of the idyllic oasis—believe me, I would have loved for her to stay and maybe even find a way to invite myself in—and headed downtown to drop her off at the university for the rehearsal. Unfortunately, my GPS wasn’t able to account for the Franco-Ontarian Festival, the Fringe Festival, a large group of unruly children wielding drums and banners, and the closed parking lot, which precipitated me yelling at it (notice the “it” and not my family, yet) as it intoned “Recalculating….. recalculating … recalculating….” and I drove around in circles trying to figure out where to park. Jessie added her own refrain of “But I’m going to be late!!!!” while Dan grumbled, “You know, I can take the GPS back if you don’t like it.” At which point I stopped the car in the middle of the street, turned the GPS off, and told them to get out. Nicely. Really. “But …,” starts Jessie. Dan looks at me and just whooshes her and her dance bag out of the car saying, “We’ll meet you inside.”

I did find a parking space after only 3 more times around the campus. It was far enough away for me to have composed myself by the time I got to the theatre. Jessie was in the dressing room, dressing and schmoozing
. . socializing with other people. Jessie was having a great time rehearsing and keeping the vibe going. Her attitude-stricken dance moves were amazing. As I saw the performance I thought to myself, “Wow, these people are amazing dancers and performers.” When I saw Jessie’s hip-hop piece I thought that Jessie did an amazing job with the dance. She has some serious attitude in the dance.

Okay. So that last part is Jessie as she decided to take over the computer and the blog, even the “attitude-stricken dance moves.” Which is why I am trying to convince her to do her own blog. There’s my “Life with Jessie” and then there's “Life BY Jessie.” I know which I would prefer to read!

When I decided to start this blog, I did promise Jessie that she would be able to vet what I wrote, and that I wouldn’t write about anything she didn’t want me to write about, as this is, after all her life! At first she wasn’t very interested, except to know that I was writing about her (which she thought was pretty cool). Then I loaded Google Analytics and brought her in to see how many people were reading the blog (okay, it was less than 5, mostly friends, but still bordering on fame to her). Hmmm. She liked this part, especially where she got to click on the map and see where the people lived.

Then she decided that she wanted to read what I was writing (because I leave it up on the family computer) and she took great exception to me using the word “schmooze.” (Too close to “booze”; she thought I was saying that she was drinking back stage, which, she informed me, she definitely was Not. Phew, glad we got that cleared up). Then I went to help with dinner and when I returned she had taken over the computer, erased the last paragraph I had written, and put in what she thought I should have written. I like her version better. Maybe she’ll get her blog up and running yet!!!

RETRO JESSIE: Art and Disability [June 2008]

In the Press
June 2, 2008 (yup, 2 years ago!)This in another “in the press” week for Jessie. A radio interview about the upcoming Propeller Dance performance at the National Arts Centre 4th Stage and a TV interview. Propeller Dance is one of the performing groups that Jessie belongs to (the other being Dandelion Dance Company). Propeller is an all-abilities/integrated dance company that includes persons with a wide range of abilities—including those with intellectual and physical disabilities)

Jessie has had her fair share of press, when I look back at it, for all her dancing and performing, and she has an uncanny ability to speak about what moves her. I forget, sometimes, just how articulate she can be. There is a proud Mom factor here, but also, when I step back, a wonder at what she reveals. That she speaks from the heart and somehow finds the words to express her joy and her intention. She blows interviewers away and absolutely loves the attention.

The Mom Factor
The Mom factor here tries to deflate her getting too used to it. But also needs to step back to let her enjoy the limelight and remember that as others listen to her, she is breaking down barriers and opening doors for all people with disabilities. She speaks from the heart, and when others listen they stop and wonder at all the spirit and understanding that exists in her heart and head and maybe, just maybe, stop to think about their preconceptions about persons with intellectual disabilities. There is so much there for us to learn from. Jessie is just one voice (of all the voices that we tend to discount), and maybe her voice opens up doors for other voices to be heard.

The Circle Widens . . .
. . . and Jessie is on a high, even this morning as she gets ready for school. I drove her this morning, because she was late and because she has another performance tonight. And in the car she smiled and said “I am so excited about tonight!” Another performance would just exhaust me. But she is excited! That performing part of her certainly comes from Dan, not me! And she just exudes life on stage. And joy and a certain generosity of spirit that catapults energy across the stage and out into the audience. Tonight she and the group perform Underground Wonder —a piece that she has choreographed and I am looking forward to seeing that. In her own words, “it’s about living in darkness underground, caught in the cold and the snow and then breaking free so each of our colours, our beingness can emerge and greet the world.” She does go deep sometimes!

Opening Up Vistas . . . Painting with a New Palette
The Propeller Dance performing group has opened up vistas for her and has given her a space to work with other performers and to create and to perform from her inner sense of joy. For me, the Propeller Dance classes and performing group has opened up a whole area of my heart that makes me look at the world differently.

It also generates a measure of anger, when I look at what an amazing performer she is and how much that is her passion and how the “regular” channels (school) cannot shift the elitist attitude that constricts what is valued to only those who fall into the “established” palette of value. While drama has always been a strength for Jessie, she was not allowed to apply to the high school for the arts (we don’t take kids like her—i.e., kids with an intellectual disability), nor was she allowed to apply for the drama focus program at her own high school —because she didn’t have university or college level English (one of the prerequisites).

What then, or how then, do we foster the passion and strengths of each of our students? And in the arts, of all places, where seeing and being outside the box is often the norm and the place from which many create? This continues to frustrate me, although you think I’d be able to let it go. I can’t, for some reason. BUT, am so grateful for all the opportunities outside school that the community offers for individuals like Jessie and others who don’t fit the mould. She is also lucky to be living at this time and in this place where new arts groups and opportunities are growing and where the wider community is opening up and making room for artistic expression for those with disabilities, who in turn are changing the environment in which we all create.

Connecting to Our Deeper Selves
We connect to our deeper selves through art and performance. To a deep sense of love and laughter and joy and pain. To a celebration of just breathing, of turning in a chair and flying with our arms through the woven ties that sometimes bind us to the ground and to each other and, if we watch and listen with our hearts, to a certain freedom that allows us to fly beyond the lies and the pretences.

Okay. Then there is the other side of our experience. This part tells you that it is all about people. Tis people, tis people, tis people. Jessie also loves to sing. She is a wonderful performer on that front as well. But she cannot, and I mean this seriously, with all the love that a mother has, she cannot sing on key and only recently has managed to keep a beat. By her own admission (through tears, when listening to a tape she made with friends) “why does my voice sound so wrong when theirs is so right?).

So. We have a child who, over the years, has belonged to a number of school and church choirs and who absolutely loves to sing! She stands on stage and it’s hard to take your eyes off her because she exudes joy and her whole body sings with her (if you can get past the off-key part...and usually we hope that the choir is big enough that most people won’t notice that). But there is no doubt that she sings off key. Really off-key.

And Yet . . .
And yet, and yet....the choir and voice director at her school asked her to join the voice program! Jessie came home from school one day to tell me this with pride. I was sure that she a) got it wrong or b) the choir/voice teacher was just being kind and thoughtful. But when we were choosing classes for next year, the high-needs coordinator at school reiterated that yes, Mrs. B thought it would be wonderful if Jessie took the voice/choir class. I smiled and nodded. Jessie beamed! And it is a curiosity to me that the school makes it impossible for her to pursue her passion (and what she is really good at), but will make is possible for her to pursue a passion where she has little talent. Go figure.

Exit Left

A half decade of sustenance and inspiration—exit left. Saturday was Jessie’s last performance with Tournesol and Dandelion Dance Company. How do I begin to write about that without breaking into tears? Not possible. This transition is even greater than her prom was, or than her graduation from the high school where she the majority of her teen years. As with all of Jessie’s major transitions, I sidestep the full impact by and to-ing and fro-ing with the little details (buy flowers, sew a prop, plan a lunch, pack a costume bag, make sure I have gas in the car) and then, when I have a moment, sit still with the feelings welling up inside and burst into tears of sadness mixed with pride and wonder—at Jessie and her amazing growth into a young woman, and at the people who have blessed her life and made it far richer than anything we could have envisioned by their belief in her abilities, her artistry, and her gifts. No small task when you look at all the barriers she has also encountered along the way—barriers that she has been able to slip under, climb over, or just detour around or break down with the help and support of these “soul guardians.” There is no way that I will ever be able to thank these “soul guardians” enough! (Hannah Beach, the girls and parents in Dandelion, Ms. M (her grade 6 teacher), my friend CG, Rachel (Jessie’s “best friend since elementary school!”), Shara and Renata at Propeller, Janet at church … and the list goes on. It makes me think about what Anne Lamott wrote about all writing often starting out as a thank you to an important person, and as there have been so many important people in Jessie’s life, look for them as inspirations for this blog, even if I will never be able to write well enough to thank them properly.)

Ubuntu.The older I get the more I realize what Jessie has been trying to teach me right from the beginning—it’s ALL about relationships. All learning, all loving, all grace is about relationship. Or Ubuntu: a person is a person through other persons . . . My humanity is caught up, is inextricably bound up, in yours. We belong in a bundle of life. (see Desmond Tutu’s No Future Without Forgiveness, p. 31)

For more than 9 years, Jessie has been taking dance classes with the incredible Hannah Beach at her dance school, Tournesol (sunflower for those of you without French, turning always toward the sun). Six years ago Hannah encouraged her to create a solo about having Down syndrome, which Jessie called I AM and which helped to launch the Dandelion Dance Company (Dandelion needs no translation, just a reminder that dandelion seeds spread far and are difficult to eradicate! And to learn a bit more about Hannah go see the Regional Contact documentary on the Dandelion site). Dandelion has been a major part of Jessie’s life this last half decade and has had a profound influence on her sense of self, her sense community, her sense of belonging, and her sense of her own value. On the one hand, she has garnered much press (print, TV, and radio) and accolades from a wide range of audiences from teachers to policy makers to parents to students (we all love recognition). On the other, she has learned what it means to be an integral part of a community committed to both creating and performing art and nurturing the spirits of those young women involved.

I cannot even begin to imagine what Jessie’s life would be like without this experience: without the relationships she learned to develop with the other Dandelion dancers, without Hannah as a mentor and teacher, without performing and developing her own movement vocabulary, without a place to express and struggle with her own feelings of what it means to be a part of this fractured yet sacred world.

Dandelion and Hannah have been such an important part of who Jessie has become, who she is, that I find it difficult to even conceive of her life without the weekly routine of Dandelion dance classes, rehearsals, performance, celebrations, emails, and just the ebb and flow of girls becoming women. While Jess is lucky in that she has Propeller to “propel” her on and keep her sailing on this artistic journey that she has embarked on, graduating from Dandelion will leave a huge gap in her life and I know she will struggle with this particular emptiness as we move through the summer and into next year. I will need to remember, when she can’t articulate it or even put her finger on it, what kinds of sadness and loss she will be dealing with. And I will need to remember to be patient with her as she processes and grieves. None of us is very good at grief, really. And Jessie’s usually takes the form of extreme anger at, you guessed it, moi! Or extreme anxiety, which means being called into her room in the middle of the night to reassure her that she is not, in fact, dead, or missing a limb.

But for now, we enjoy the celebration of moving on: a roomful of praise from other dancers, parents, friends; a unique painting of sunflowers with a bronze plate with Jessie’s name on it; dinner out and a sense of joy and wonder at the years spent nurtured by this very special community.

Jessie did perform “I Am” for the last time (tears here), and a piece called “The Struggle” about growing up and moving out (large tears here, I will confess that I probably even sobbed). Then we ate cake. That is how all good transitions should go, n’est pas?

Coming soon on the blog: The Struggle (the last dance piece Jessie created for her final performance about growing up and moving on); Up A Notch (the Propeller show Shedding Light); and Retro Jessie: Thoughts on Art and Disability.