My Bite-Sized Contribution . . .

. . . to the bite-sized blog hop,  hosted by Meriah over at With a Little Moxie, for World Down Syndrome Day.                 

FACT: The only true disability is loneliness. (Thank you Colin Newton & Derek Wilson of Inclusive Solutions in the U.K.) I could parse that out, but since this is a bite-sized blog hop, I’ll just let you sit with that and see where it takes you.

FALLACY:  People with Down syndrome are all so ______________ [fill in the blank, I’m sure other bloggers will be exploring all the many options!]. Blanket statements about any group or experience (i.e., parenting a child with Down syndrome) completely take away the gift of the particular, which is really where God and relationship reside. And the beauty and grace is when the commonalities and links—between and among people—are discovered and explored, not assumed.  

PHOTO: My all-time favorite, as it seems to capture Jessie’s infectious and indomitable spirit (and perhaps might feed one of the fallacies above): 

Plus an additional photo just to offset the fallacy-supporting one: 

Jessie Flips: About Making a Difference

I’m an artist with Down syndrome and I’m in a professional mixed ability and non-profit contemporary dance company called Propeller Dance and we are Ontario’s only integrated dance company. Propeller dance reaches over 5,000 people and we do lots of outreach workshops and we also have community classes. Propeller also has a children’s program on Saturday mornings and we have an amazing staff including Ximena Puente, Shara Weaver, who is the main teacher, then me, Jessie Huggett who is the teaching assistant.

It’s important that people who have Down syndrome are seen as leaders, teachers, mentors and role models. Why? Because we can show them that we are responsible, talented and mature. It shows that we too have gifts to bring to the world.

I have a challenge for you!!

As this is National Down syndrome awareness week, I want all of you with Down syndrome to get involved by making a difference in your community just like I do when I teach. The reason why this is important is because if we all do it, it will be a more diverse inclusive world where ALL of us have a voice.

Thank you.                    

31/21: Unreasonable Canadians: Dave Hingsburger

As part of the 31 for 21 challenge, every Wednesday during October I am celebrating an unreasonable Canadian who has inspired me with their courage and vision—through their writing or their advocacy— for a world where all are welcome, and safe! Today I celebrate Dave Hingsburger.

Dave Hingsburger is so unreasonable, he insists on seeing people with intellectual disabilities as sexual beings. He educates them about healthy relationships and abuse prevention, and gives them the tools and training to educate each other.  

A renowned sexuality consultant, author, lecturer, trainer, speaker, and daily blogger, Dave travels the country and the world empowering people with intellectual disabilities; training the people who support them to honour and teach self-determination and health boundaries; and advocates, designs, and delivers abuse prevention and other workshops that continually sell out. He also works providing direct service to people with intellectual disabilities—as a consultant for schools, parents, and agencies and the Sexuality Clinic at York Simcoe Behaviour Management Services—and is the Director of Clinical and Educational Services for Vita Community Living Services in Toronto. 

Dave writes on many topics and has a keen eye for injustice and stupidity. He also notices some of the simple interactions that make us all stop and rethink our assumptions. He celebrates being and challenges us all to notice the world with a bit more passion, compassion, and outrage. While I have many favorite blog posts, my absolutely most ever favorite about Down syndrome is one that I think should be required reading for all parents. I have his permission to reblog it here, but you can go to the original here or bookmark his blog here. Thanks Dave!

Down Syndrome, Off The Clock by Dave Hingsburger

They make, if not the best, a very serviceable eggplant parmigiana. We don't go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It's perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.

We'd just sat down for lunch when we both heard that pronunciation of the word, 'Mother' that communicates so much. 'Muhhhhh-therrrrrr'. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.

Of course, I listened.

(Realize that I would have listened irregardless of the boy's Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That's what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn't she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she'd had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

'Trouble is you think I have Down Syndrome all the time and I don't,' he said with real frustration.

She stopped again, 'What?'

'I only have Down Syndrome sometimes, when I'm learning something new or if the words are real hard. I don't have Down Syndrome the rest of the time when I'm doing what I know how to do.'

'And you don't have Down Syndrome now?' she asked.

'No, I know how to get my lunch, I buy my lunch at school all the time. I don't have someone with me all the time you know.' he was frustrated, he didn't even realize he'd said something of real importance, to me and to his mother.

'So,' she continued looking at him hard, 'you don't feel like you have Down Syndrome all the time.'

'No, most times I don't even think about it,' he said.

She said, her tiredness seemed to be gone, 'Go ahead, we'll find a table after we've got our food.'

They disappeared from view.

Joe and I looked at each other. I said to him, 'That kid should teach classes to parents of kids with Down Syndrome.'

On our way home, chatting about just stuff, I realized that at that moment I didn't feel disabled, it wasn't part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn't impact what I felt. I'm only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I'm just - me.

31/21: Jessie Flips About People First Language

This is Jessie's answer to a question from Erin last week about people first language. 

I Am Jessie

Language is what we speak, and we can choose what words we say and we can choose our words wisely. It’s wise NOT to use the “R” word, we probably all know that. And call out other people when they do. That’s hard but important.  Once at my church I had talked about ending the use the the “R” word. In general ,most people in the world say this word in casual conversations, and they don’t realize that it’s hurtful and offensive to other people. Especially all people of all abilities. We need to focus on the word Ability. And Respect.  We need to be careful of what we say and how we say it.

It’s just as important to use people first language. That means that the PERSON comes first. Sometimes people think that if it isn’t rude, then it’s okay. But I would never say I am Downs. I’m not, I’m Jessie! Down syndrome is a part of me, but it is not all of me. Here’s a poem  about  how I feel about having Down syndrome. This was long time ago when I was younger. (It was turned into a dance for the DandelionDance Company, we recorded me saying it and my cousin wrote the music for it) and we performed it all across the country!

You can share it. I’d love you to share it! But please say that it was by me. That I wrote it. So you can share it but say © Jessie Huggett, 2004 and say where you found it (at my mom’s blog, until I start my own). And if you do share it, could you tell me about it?

I AM 

I am 

I am Jessie.

Jessie.

I am beautiful.

I am graceful.

I am enthusiastic.

I am silly.

I am helpful.

I am loving.

I am brave.

I dream.

I dance my emotions.

My heart is filled with love.

I have.

I have Down syndrome.

Something extra.

A chromosome.

Sometimes when people look at me,

I feel that they don't see the real me.

They only see some kid with Down syndrome.

Down syndrome is a big part of me,

but it is not all of me.

It's not all of me.

I love to laugh.

I love to have a good time.

I love to fool around with my friends.

I like writing stories.

I like dancing and singing.

And I love people.

Be happy for who you are in your heart.

That is true!

People with Down syndrome should be allowed in schools.

They should be treated equally--equally in their hearts.

They should be involved in sports, like basketball, football.

They should dance and sing!

Sometimes people do not understand me

at all.

Sometimes I do not fit in.

At school sometimes people treat me badly and 

don't understand me.

They see a girl who has Down syndrome.

They do not see who I really am.

My personal feelings are:

be gentle, do no fight. 

And fight for your rights!

I am Jessie

I have 

I have Down syndrome

I have friends and people who love me.

I have emotions and laughter

and people who love me.

I give my gifts,

I give my beautiful thoughts.

I give my lovely dreams.

Come, share with me:

My dreams,

Your thoughts,

Together

We WILL change the world. 

© Jessie Huggett, 2004

(my mom says she would put an audio link in for the whole piece, if she could figure out how to do it!)