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.

The Rule of One: In Which I Tell the Truth About Food

The truth about food is that it is a continual challenge—to eat reasonable portions, to eat at reasonable times, to make reasonable choices for particular times of the day (like, for example, avoiding ice cream for breakfast), and to eat at a reasonable pace. I will not detail what defines “reasonable,” just state that it is a very generous definition.

The truth about food is that Jessie’s difficulty demonstrating self-control around food is limiting her ability to go to certain functions on her own. Because she makes herself sick, or I get calls of concern from her colleagues or mentors.

I will state that we never used food as anything other than food. And we have always enjoyed food—baking, cooking, eating, sharing, preserving. So the root cause of the challenge is something that I am not sure of. I do know that there are certain things we no longer have in our house—like ketchup and nutrigrain bars.

However, we are trying to make certain situations manageable and as easy as possible. So we came up with the RULE OF ONE. When you go out, you can get ONE muffin, you can take ONE sandwich, you can drink ONE soda, you can buy ONE croissant, you can have ONE piece of cake, etc… It covers most situations and is a pretty clear rule. One. Simple, straight forward. Those are things that always work best in the beginning.

And I was speaking to Claire, she of patience and other wise virtues, and she agreed that this was indeed a very good rule. A rule that they in fact use over at their house too. “But,” she said, because we often share our brilliant ideas and the not so brilliant (but certainly creative) variations our daughters dream up, “what do you do when Jessie applies the rule a bit too literally?” Country gal had taken Claire at her word and when she came home from school chose: one muffin, one yogurt, one rice dream, one smoothie, one juice, and one cheese as her snack.

There is no doubt, our daughters keep us thinking and reinventing..

What food rules do you have? And more importantly . . .  do they work?

Take Five: Patience in Five (Minute) and Five (Year) Intervals

My friend Claire has taught me patience. In all our discussions about our daughters (who share an extra chromosome and a day at H’Art studios), Claire has always modeled patience—in waiting for speech to occur, in dealing with school boards, in addressing questionable vocabulary, in teaching healthy food choices, in problem solving health issues, and often, in listening to me rant and rave about our latest disaster/challenge/insight. She is a calm voice of reason and I am reasonably  sure she was a Buddhist in some former life.

So I thought about Claire when reading one of Dave Hingsburger’s posts last week called Profound Rights: The Extra Five Minutes I Need to Think. And I thought about Beth hugging her pastor; and about Sammi participating in class; and about Jessie learning to zip up her coat just last year; and about Claire's daughter, country gal, picking up the phone all on her own (after years of absolutely refusing to even answer the phone or talk on the phone when someone called) and calling a coordinator to ask if she could join a program that she was interested in; and all the other individuals who just need a little. More. Time. To do what they have to do to become who they are to become.

I find I have to remind myself of this over and over and over again, because I forget so easily! We are a society that rushes, that values quick response, repartee, multitasking, and instant oatmeal (not to mention gratification). In the midst of all this, it is sometimes hard to remember to slow down, to give Jessie the chance to process and to grow. In both the short (5 minute) and the long (5 year) term. This perhaps, is one of my greatest challenges and one of her greatest gifts to me.  

When I go out with Jess to engage in some of those daily tasks of living—such as going to the bank or buying groceries or making a transaction at the library—I try to remember not to rush her and to actively tell her that she can take as long as she needs. I also usually remind her kind of loudly (well, not loudly, but not in a whisper) intentionally, hoping that others will hear and will think: Hey, it’s okay to take as long as you need! And will remember that when dealing with her or any other person who might need a little more time . . . such as myself when my hands are full, or a caregiver, or an older person whose fingers aren't quite as nimble as they used to be. "Take as long as you need," seems to be the kind of mantra that we might all need to continue to grow, to keep faith, and to honour our children’s right for respect. It’s the rushing for response that takes their rights away at times, that makes them doubt their ability to make choices, to judge, to decide what is right for them.

I have to remind myself (or call Claire to have her remind me) that patience is a key quality in all parenting, but especially in parenting a son or daughter with an intellectual disability. It just takes Jessie longer to process, to learn, to apply, and to explain what is bothering her. Or to accept help when she so badly wants to do it on her own.

So we have a new rule, what I call the five-minute-plus rule (this, in addition to the rule of one, which I will blog about at some other time), which is not really a rule about minutes or numbers, but about taking whatever time you need and I will always be there, I will NEVER give up! Because I know you need to do it your way, and your way isn’t my way (even though I sometimes forget that, but that’s why we have friends to remind us that our way is not always the best way). But when your way doesn’t work, I can show you my way or we can figure out a way that does work. But I won’t make you do it right now. I will wait for you to be ready and for you to tell me.

Whew. That was long! That’s because I am just learning this rule. That’s because I’m really good at being bossy and impatient and certain that my way is best. It is, truly, a learning process. And I am so glad that Jessie is so patient with ME!