The New R-Word: RESPECT!

Tomorrow, March 7, 2012, is just one of 366 (this year) days you can share your commitment to using and embracing a new R-word: RESPECT. It is also the annual pledge activation day TO SPREAD THE WORD to end the word (R#tard).

Our minister, Christine Johnson (see her blog, The Art of Ministry) joined us at Jessie's PATH last spring, and offered to help her craft a basic speech and to provide her with a venue for speaking (one of her life goals): the pulpit! She invited her to do so as part of a drive to examine our inclusivity at church and in the Sunday school, where we challenged ourselves to look at how committed we are to including everyone of every race, socio-economic status, gender, sexual and gender orientation, ability etc., ... in our ministry and community.

Jessie was delighted to speak out about the R-word, and with a little bit of help from her friend Rebecca (sister to Rachel, daughter of my bestest friend Cathy, and wonderful voice coach and violinist) crafted the following, which she would like me to share here, leading up to this very important day.

Hi. My name is Jessie Huggett, I’m 21, I have Down syndrome—Down syndrome is when you have an extra chromosome and there are lots of things that go with it, including intellectual disability—and I am a member here at Glebe St. James.

I believe that words have the power to hurt and to heal. Here are some healing words I like: Gifted, creative, love, inclusion, forgiveness, friend, power, belonging and equality.

As for words that hurt, there is one word in particular I really do not like. I have a really hard time saying this word because it is really hurtful. The word is “r#tard” or “r#tarded.”

This word, the R-word, has the power to hurt people with disabilities just like me. It makes us feel as if we don’t matter, but the fact is we do matter. Because we have a voice and we need to be heard.

Most people in the community or in society don’t usually say this word deliberately intending to hurt your feelings—they use it in casual conversations. But it DOES hurt.

I encourage you to stop using the R-word. I also encourage you to spread the word to end the word. Let other people know that it is an offensive word and they shouldn’t use it.

At the end of the service we will have computers all set up so you can join the thousands of others around the world who have pledged not to use the R-word. Instead, use words that promote respect, acceptance and inclusion. Thank you.

When the service was over, congregants and visitors went for coffee and to pledge. I was never so proud of a community! So, if you yourself have not pledged, go right now to http://www.r-word.org/  and do so!

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.