I Don't Miss It {Ellen Stumbo Writing Prompt}

{from Ellen Stumbo's beautiful blog's writing prompt for this week}

Not one bit I don’t. Miss, that is, advocating and struggling with the school system to fully include Jessie and educate her. While we have other struggles and challenges now that Jessie is out of the public school system and dancing her way through life, I can say that I do not look back in fondness on those years, or at least those moments, marked by the sheer frustration of battling what felt like an immoveable, illogical, uncaring, unresponsive, patronizing monolithic establishment.

Jessie was usually the first student with an intellectual disability to be fully included in regular classes. The early years, I will admit, were often fun. God’s jocular inoculation of my drive and will to the brute force of a system bent on not bending. Those early elementary years were when the team worked best—we all (teachers, parents, school community) had a sense of humour and delighted in the unfolding adventure that was inclusion. We all knew that we really didn’t know what we were doing, but would share the best of our experience, knowledge, and creativity to figure it out. We did know that inclusion was the only thing that made sense and that its difficulties offered myriad opportunities for growth. We figured out what each of us did best, and then did it. We recognized and honoured each other’s intentions and always brought homemade muffins, and the good kind of coffee, to meetings. There were, of course, challenges. As teachers, administrators, and the curriculum changed, we had good and bad years. But it was not until high school that I really needed to work some prunes into the baked goods.

We should have known when, even after the elementary-high school transition meeting—where Jessie’s grade 6 teacher promised to bodily harm the resource teacher (God, I loved that grade 6 teacher) if they did not have the accommodations in place when Jessie started school so that she could continue to learn and grow and blossom into the creative compassionate Jessie she knew she was—the high school had not one single accommodation in place when she crossed the threshold with her friends. But should have known would not have changed our decision to send to Jessie a regular class at the local high school. We quickly rallied allies, friends, and resources to support the school and lead them into supporting Jessie so she could continue to learn and grow alongside her peers. Did it work? Perhaps. In most cases, when we pushed and moved up the ladder of responsibility, we “won.” Principals and teachers were dragged from above to do what was right (in all senses of the word), what was required.   

I think Jessie struggled with finding her place, but in the struggling grew strong and carved a place for herself, identifying her belonging and contribution in a way that convinced her of her own strength and meaning in a broader community. She’s a sucker for a cause, wants to fight for her and anybody else’s rights. Perhaps all the struggling with the school convinced her that even if you don’t win, the struggle is worth it.

Worth it. Yes. But I do not miss it. I do not miss being asked to make a choice between having the curriculum adapted and having an aid. I do not miss a teacher questioning the value of teaching someone like Jessie about cell structure. I do not miss fighting with a school that defends mounting a community play with vigourous use of the word r#tard. I do not miss a point-blank refusal to adapt the curriculum or to follow a written plan (“But if we write it down we will have to follow it!”). I do not miss being yelled at for taking notes during meetings. I do not miss hours spent learning how to write a letter, making sure I take every emotion out of recounting a challenge and stick clearly to only the facts. I do not miss coming home and (WASP ice princess that I normally am) throwing a Cuisinart bowl across the room into the wall and collapsing on the floor with tears and snot and bubbly body fluids cascading out of every facial orifice in sheer frustration at a system so bent on not making inclusion, or learning, possible for my daughter.    

That part I do not miss. I will confess though, that I do miss wearing the Mothers from Hell biker jacket that I have stashed away in my closet. It represents the best part of that journey: coming together with other hellions to battle for the rights of all children—to be educated, respected, and beloved.  

To see what others don't miss, go to http://www.ellenstumbo.com/i-dont-miss-it/?utm_source=rss&utm_medium=rss&utm_campaign=i-dont-miss-it

Not So Very Special Needs

I do not have a special needs daughter in the same way that I don’t have a Down’s daughter in the same way that I am not a special needs mom. Ah, deep in denial, you say. And after all these years!

Not really. It’s just that I have become convinced that all these terms take away from the most obvious of obvious—that our children, from the moment they are born, are children first and an integral part of our families, communities, and society just as they are. And when people ask why disability it not a part of mainstream discussion, I think the answer is, in part, in how we name ourselves.

I believe that Jessie (and every person labelled disabled, or labelled in any way) does not have “special” needs, but very typical and basic needs that sometimes (often) have to be met in special ways. If we allow ourselves to admit to just how typical these needs are (for sustenance, shelter, love, a sense of belonging, an education, and a sense of being valued, to paraphrase Maslow’s oft-quoted hierarchy), we can stop focusing on making the story be about difference and start making it be about diversity. We can stop people in systems from saying it’s just all too much, too exceptional, and there is a place (a special place) for that, and start doing whatever it takes to meet those very basic and typical needs, which sometimes might be in a special place.

Maslow's Hierarchy of Needs

Once we, as parents, shifted from seeing Jessie’s needs as special (hence outside the realm of typical or normal), we became more inspired advocates, enticing service providers, educators, and administrators to see Jessie as her friends and family did—as having very typical needs that we had to get creative in meeting. She needed friends, an opportunity to learn, the chance to be valued in her community, the chance to contribute.

And once we saw Jessie’s needs as typical, our allies and advocates became the world at large, not just other parents of children with so-called special needs. And our (and Jessie’s) world and experience expanded ten-fold. There is some great beauty in the common; in all the variations and striations and unique flicks of the personal that emerge, but do not submerge what joins us. And somehow, when we allow ourselves to let go of how we label the need, but focus instead on how we meet the need, we create a space where we can struggle meaningfully, as a family, a community and a society, with how we can make this happen.

I will admit, I did not come to this on my own. It was actually the other parents in our original school community (a small, creaky, no-gym public school with sometimes fewer than 100 students and principals at the tail-end of their career) who kept pointing out that Jessie had the same needs as their kids, just sometimes we needed to meet them in a different way. This included the parent who taught Jessie how to climb up the down part of the slide when the teacher was not looking (because that’s what kids did, and Jess had trouble with timing), the one who made sure she had lunch duty in Jessie’s classroom so she could start games and make sure that Jessie was included, and the one who forgave the biting incident in junior kindergarten and invited Jessie to his son’s birthday party anyways. 

And when the principal changed and with him the supports for Jessie, it was the other parents of so-called typical children who were my allies and advocates as we did battle to remain at the school. These other parents were, and continue to be, my teachers. They keep me honest, they ground me, and when I so badly need it, they fill me with laughter. They remind me that we are none of us so special as not to belong to each other. And that is good. 

Unreasonable Canadians: Judith Snow

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 Judith Snow.

Judith is so unreasonable, she dared to break out of a long-term chronic care institution with the help of a group of friends that evolved into a unique circle of support known as the Joshua Committee, and went on to pave the way for individualized funding for attendant care, get an MA, advocate for inclusion and change, teach and mentor families and individuals to name and reach their dreams of living in community, have a play written about her, go kayaking,  become a visual artist, and in her most recent incarnation, start a unique visual arts program called Laser Eagles.

"Red" copyright Judith Snow, http://www.lasereagles.com/assets/thumbs/d90aa_judith_red_8x10.jpg 

I first met Judith at a week-long institute on inclusion at McGill University in Montreal, when Jessie was only two years old. Judith held me spell bound and in great awe as she shared her vision, her acerbic wit, and her sharp, and I think brilliant mind with those of us gathered from around the world to leran more about inclusion and to support each other in the journey. 

Find out more about Judith by reading any of her provocative and insightful writing. What she is saying is so simple (listen) and radical (listen with your full attention). 

Creating What I Know About Community 

The Quiet Voice  

Stories andHealing 

Or order Behind the Piano and What’s Really Worth Doing and How to Do It from Inclusion Press. Circles of support and person-centredplanning really started with Judith. So we owe this highly unreasonable Canadian a great debt!

Retro Jessie: Life With Jessie 10: Happy Endings [1996, 6 years old]

Part 10 of an 11-part series about Life With Jessie (written in the early years), first broadcast on CBC radio in 1997/98 and re-shared here as part of 31 for 21. The series will be re-shared and posted here on the weekends through the month of October 2012, as part of the 31 for 21.

Jessie is six years old. She has lost her first tooth, can write her name if you help her with the s’s, mastered the tuck jump, told me to change my attitude, and is learning to read.

One day last month, as we were approaching the school yard, Jessie looked up at a street sign and stopped. “Mommy. Look. I know that word! It says school.” She beamed from ear to ear. “School. I know that word!” She had stopped underneath the sign that said “School Bus Loading Zone” and the delight in her eyes mirrored a sudden revelation that she could read not only the word, but the world.

Nothing, however, quite matches my pride as I watch her learn. She has a sight vocabulary of at least 100 words and we just moved into families of words: the “at” family, as in cat, hat, mat, and bat. What amazes me is her ability to play with word order and meaning. The unrestrained delight in her eyes as she turns a simple sentence into a silly one by switching one word and then waiting for me to laugh.

I spend my evenings cutting out pictures, writing words in bold black print, creating books, and making up games. That Jessie would read was never a question, at least not in our minds. Our house is filled with books and if any child had it in her genes to read, it would be Jessie. Reading and writing is what both Dan and I do for a living (if you could call it that) and for sheer pleasure. But I never thought it would be this easy or this much fun.

Some people would say, well, ya, sure, but she’s high functioning. I’m getting tired of that phrase. Sure, integration works for her because she’s high functioning. High functioning . . .  just exactly what does that mean? Sometimes it means that it’s more difficult for other kids to figure her out. Because at six, kids are into mastery. Who’s better than who. And there’s a general order that they have figured out that is closely hooked to age. When you lose your first tooth, when you turn six, all these rights of passage are tightly tied to the ability to do something. To read, to ride a bike, to draw a figure, or write your name.

Pushing Jessie on her tricycle the other day we met Tim on his two-wheeler. “Why are you pushing Jessie?” he asked. “Because she’s just learning,” I replied. Tim looked at me for a moment, then up at his Mom for support. “She can’t ride a bike? But Jessie is six!” This is inconceivable to him.

If Jessie were just always behind, if her effort and difference were just a bit more pronounced, I sometimes think the other kids would have an easier time of it.

“How come Jessie can read?” asks Tess one day at our house. She was a little put out because she’s used to being better than Jessie at most things. Having finally figured out that even thought Jessie turned six before she did, Jessie was really like somebody a bit younger, she now had to reassess her whole world because Jessie could do something that she couldn’t. I could see her little face struggling with this new view . . .  exactly where, then, did Jessie fit in? That is the million dollar question, and the best “educational opportunity” any of us will ever have.

For Jessie continues to be an enigma, a child who is and is not a peer. She knows her colours in French better than most of her classmates, can recognize a variety of birds, can read many of the signs around the classroom, but she can’t  ride a bike, doesn’t run very fast, and still grabs toys as a way of getting attention. She can, however, do the “Macarena,” a kind of line dance that’s a bit hit in the school yard. And while the Macarena might never show up on her IEP, it’s an important part of her education. An education that she could never get in a segregated setting.

The hard part is not so much in the day-to-day things, but in the things that go on outside our immediate lives. The undercurrent of cutbacks, legal battles, dealing with therapists, preparing for grade one, making myself clear.

There is an air of desperation these days, that makes me very nervous. People are losing their jobs, school boards are claiming that they can’t afford the services our children need. Never mind that integrating children into their neighbourhood schools actually costs less than putting them in a segregated setting. Parents are being told that their child can get an integrated placement, but they can’t promise any supports. But without supports it’s not integration, its dumping.

Jessie would never survive and thrive the way she is without supports. I am so proud of Jessie, of her classmates and her teachers, and of the school community. But there are moments when I get this weird vision that Jessie and others like her will only be this weird blip in time, this strange generation of kids who grew up and went to school together and learned something about meaning and value and caring. I shake my head and clear my eyes. I cannot believe that what we’re doing in not right, is not a step forward, and I can’t bring myself to think that at some point Jessie or the children following her will be forced into segregated settings. Settings that maximize their difference, that deny them the day-to-day opportunity to make friends, to feel good about what they have to offer the world. It’s not that we don’t struggle with how she fits in, it’s that we’re taking the chance to figure it out. Whitout that struggle, we would not have the moments that make it all worthwhile.

The best moment, the moment I would trade all others for, is the moment when, hidden in the closet behind a sheet and amongst the pillows and stuffed animals that I was ordered to supply, Jessie and Claire got the giggles. Singing funny troll lullabies in their own imitation of how a troll would sing, they began to giggle with each successive phrase as each one topped the other in silliness. Nestled there among the pillows in the dark cave of the closet, they wriggled and giggled and I stood quietly in the hallway, holding that moment to my heart. They are so few and far between and I want, more than anything, Jessie and her friends to know what these moments feel like. Moments of connection and delight. Moments when Jessie’s sense of humour and playfulness are appreciated and treasured.

That night, as I was tucking Jessie into bed, she turn to me and said, “Mommy, I like happy endings, do you?”

I do Jessie, I do.

Jessie and Claire went through elementary, middle, and high school together. Claire received funding to do a documentary about Jessie, and has gone on since then to study film in Toronto. Here is a link to this first short documentary, done in 2007.

  

Jessie Flips: About Being in a "Regular" Class

Two weeks ago Michelle asked: “. . .  I have a question for you about when you were in the regular education classes—aside from how the students treated you at times, how did you yourself feel sitting in the regular education classes? Was the work too hard? Was it over your head? Did you understand what was being taught? Did you have modified work? How did it make you feel if you weren’t doing quite the same work as your classmates? . . . I’ve been told that during some of the time in the regular classroom the teachers/administrators feel like since the work is too hard for her right now and she’s not doing 3^rd grade level work, that it’s just making her feel bad about herself and as she gets older will cause low self-esteem."

Hi Michelle this was a great question I’m glad you asked. Here’s my answer:

In the regular education classes I felt fine and comfortable. Sure, the school work was hard but I had asked them to adapt the work to my strengths and to my level. The work was exactly the same they just modified it. And it actually made me feel like I can learn. It really helped me a lot. And I learned a lot of new things. I remember in Geography class in high school, we were learning about different kinds of rocks and the work wasn’t adapted so I raised my hand and I asked my teacher to try to adapt the work to my level. Then the next day in class we all used all sorts of visuals that my mom had made to help me learn, and it was really fun. 

This should NOT make you have low self-esteem, or make you feel bad about yourself, you need to adapt the work and if they can’t do that then what you should do is to fight for it. And if the work is too hard try to strike up a compromise where your kid / child can learn. And if they have quizzes or tests then you can use those regular pullout sessions to the resource room as extra time for your kid or child to finish the quiz. Then when they’re done, your kid or child can go back into the classroom.  Your child or kid is learning. No child should be denied the adaptations to learn. They need to learn. They have the right to have an education.

In a segregated classroom it’s hard to learn, in a segregated class you’re not really learning and you’re not really making new friends, and your separated from your friends that you grow up with and play with. But in a regular class you are learning, in a regular class you are making new friends and being with your old friends. In a regular class you feel a sense of belonging and being connected with all the students. In a regular class you work all together. Other people can learn from your strengths and gifts.

Nancy’s says: if they are saying the work is too hard for her, then they have identified what they have to do—modify it! The first response should be modify, not remove. Inclusion is NOT and never has been about everyone doing the same thing or working at the same level. 

This seemed to be something I had to reiterate with Jessie’s teachers: OF COURSE she won’t be doing the same level work in every area. She is not in a classroom with her peers because I think she is exceptionally bright or because I think that she doesn’t have an intellectual disability. She is in a regular classroom with her peers because I think that is the best place for her (and her peers and her teachers) to learn and to create a learning community. 

The bottom line is that including all students teaches all students (those included and their peers) that all persons are equally valued members of this society, and that it’s important and worthwhile to do whatever it takes to include everyone because everyone has something important to contribute. There are always exceptions and variations, but I think the starting point has to be inclusion. And inclusion only works when we accept that we have diverse learners in our classrooms and diverse people in our society. 

I think being fully included all the way through school gave Jessie two key qualities: resilience and a very strong sense of herself as a valued member of a community. While you could call it self-esteem, I think it goes much deeper and stronger than that and is related to her place in the world. 

Retro Jessie: Life With Jessie 8: School [1995, 4 yrs]

Jessie is in junior kindergarten at St Margaret Mary’s school. What a simple straightforward sentence. I can say it and people nod and smile. Off to kindergarten—how fast they grow, how cute, how wonderful. Off to kindergarten, like I’s just another step, one that happens naturally, without effort.

But, just like Jessie’s first step, it has not happened without a great deal of effort, angst, and emotion. Generations of effort, angst, and emotion in fact. Because if this were 1964 not 1994, Jessie would never have been allowed in our local school, would never have had the chance to play and learn with her neighbours, and would probably not have shouted “I’m not your friend anymore, at me when I told her it was time for bed. Oh the delights of integration!

I look at the picture of Jessie’s first day at school and cry. There is nothing in the picture itself that would make you cry, just a proud little girl with her backpack standing on the front steps, ready, just like any other child for her first day of kindergarten. She has not yet got that ticked off look that she gave me when I was hovering too close at snack time or helping her to line up for recess. The look that said—get out of here mom, I know what I’m doing and you’re bugging me.

And while Jessie knows what she is doing and is perfectly confident about where she belongs, I still cry when I look at that picture. It represents five years of struggle and growth. Five years of questioning our own values and figuring out what we believed in. Five years of getting to know Jessie and finally realizing that all we wanted was for her to have the ability and opportunity to feel at home in, to have a sense of belonging, to a community.

When Jessie was born and we were told that she would have to go to a special school, a segregated school for children like her we didn’t question it. Let’s face it, school was the least of our concerns at that point. And while it’s still true that Jessie belongs in school with children “like her,” what has changed is how we define “like her.” Like her doesn’t mean other children with Down syndrome or a developmental delay. Like her just means other children—her peers (some of whom may, or may not, have a disability or even Down syndrome), her neighbours, her friends.

We’ve learned to look at Jessie’s needs, not just her special needs. And the ones that take precedence are those that will contribute to her sense of self and belonging. Those that will give her the chance to lead a challenging and rich life and will allow her to share her very unique gifts.

When she was small, I was committed to the idea of integration for Jessie and for anybody else who had the courage and energy to fight for it. I knew that integration meant that Jessie would be able to reap the benefits (and the heartaches) of being a part of our community.

But maybe the point is that our community, our schools, need to have the chance to reap the benefits (and the heartaches) of having Jessie as a full-fledged participant. The focus shifts from just Jessie and her needs to include our needs as a community. While Jessie needs to feel a part of our family and our community (and that’s a pretty basic human need) our own family, our friends, and our neighbours, deserve the chance to re-evaluate and strengthen their own feelings of acceptance, love, understanding, and self-worth.

I’m passionate about this issue, not just because I love Jessie, but because I‘ve seen and felt the effect she has had on others, myself included. She offers us the chance to build caring, creative, and fearless communities from within. The problem is, some people see inclusion as a product. It works or it doesn’t. But it’s not a product, it’s a process. And like all processes it can be messy.

Those first few weeks of school were hell. Not that anybody would have noticed, because I was so very careful about being nonchalant, relaxed, easy going. I felt this tremendous pressure to just kind of go with the flow and keep all doors open. Jessie is the first child at St. Margaret Mary’s with a developmental delay and I wanted to make sure that I appeared relaxed and comfortable enough for everyone else to take their lead from me. But underneath I was a seething mass of tension and fear.

What if . . .  the kids make fun of her, no one understands what she’s trying to say, she pushes all the time, they don’t tell me what’s really going on in the classroom, they don’t give her enough time to respond . . .  But St. Margaret Mary’s has lived up to its logo: the little school with the big heart. Soon everyone (all 115 students and 6 teachers) knew Jessie and all the other children in junior kindergarten. Her peers and big buddies run to greet her when she enters the school yard and they don’t even seem to mind that she won’t look them in the eye. When Jessie pushes, she gets pushed back; when she grabs a toy in the sandbox, Alex has figured out that she just want to join in and finds a way to include her.

The big joke in junior kindergarten this week is “1,2,3,4,5,6… banana!” All the kids are saying it and I’m sure none of the parents get it. But when it was Jessie’s turn to do the calendar, she began to count the days, got a little bit lost, and then turned to her classmates, grinned, and said “banana!”

When I see how the other children in her class and in the school have just taken Jessie in as part of their lives, I begin to relax a bit. And thank God for great teachers like Betty Clough. Great, not because she knows a lot about special needs or Down syndrome—which she didn’t before Jessie entered her class—but great because she knows a lot about children, and cares about them. I get the feeling that together, we’ll be able to figure things out and make this year a success for Jessie, her classmates, and the school. 

Retro Jessie: Life With Jessie 7: To Barbie or Not to Barbie [1994, 4 years old]

I look around my office and see the paraphernalia that surrounds my desk. The stuff that lets you know that motherhood has invaded every part of my life. Sure, there’s the computer, the overstuffed filing cabinet, and the rolodex. But there’s also the vacuum cleaner, the old diaper pail, and tacked around my planning board a number of bright bold pictures drawn by my four year old daughter Jessie.

Then, there are my bookshelves. Heavily laden monstrosities filled with novels, biographies, reference books, and, if you look carefully, stand on your tiptoes and peak behind the old copies of Ms. Magazine, Utne Reader, and Today’s Parent, you will find my Barbie collection. My Barbies aren’t kept carefully in cellophane or displayed in neat rows. None of them have been loved much and many of them are missing their slippers or shoes or combs. There Barbies are no treasured. They are the disappeared.

These are not, technically, my Barbies. They aren’t the ones I played with when I was growing up. And I do have to admit to having played with Barbies. Although what I remember most is how much we coveted the GI Joe because he could wrap his arms around Barbie and give her a real kiss, unlike Ken.

Just to show you that I’m not totally out of touch, I do know that Barbie can now do weird and wonderful things with her limbs. I just happen to have a gymnast Barbie right here I think . . . . yup, just behind Gabrielle Roy’s Enchantment and Sorrow. She can move in ways I never dreamt possible when I was eight. But I’m not really sure what to do with her. Her and the other Barbies I have stashed in high out of reach places around my office. This is where all my daughter’s Barbies end up. Disappeared.

I always swore that if I had a daughter, she would not play with Barbie dolls. Our house would be a Barbie-free and gun-free zone. Of course that was back when parenthood seemed like a great chance to do everything right. To change the world by bringing up children free of sexism, violence, cavities, and inner guilt. But by the time our daughter Jessie was ready for preschool, our lives had been permeated by a different kind of struggle: inclusion.

Our daughter Jessie has Down syndrome. In addition to her bright smile, her inquisitive mind, and her love of a good joke, she has one extra chromosome. And that one little extra chromosome has made some things more challenging for her and us. Things like walking, cutting with scissors, doing puzzles, and making friends.

And our vision for Jessie has at its core, a contingent of friends. Friends to laugh with, fight with, never speak to again, go to her first dance with, and be there when her heart is broken. But friendship doesn’t always just happen and for some kids, like Jessie, it needs to be nurtured, practised, and practised some more.

I do know that Jessie loves being with other kids. “Let’s go visit!” is a common refrain, or “We  will have guests?” And she gets so excited when asked to spend the afternoon at Tess’s or Charles’s house. I thought the biggest hurdle would be making other parents feel at ease with Jessie, so they would even consider inviting her over. But that doesn’t even seem to be an issue, because they have now come to know us so well—from spending time in the playground, on the streets, and at preschool together—and they know that Jessie doesn’t require any special care of knowledge. She’ll let you know in no uncertain terms, what she likes and dislikes and she’s a pretty tough kid.

No, the real challenge is teaching her skill and, yes, preschool finesse, required to join in. Because as much as she wants, so much, to join in, she can’t always figure out how it works. Her current strategy is to wave one of her ever present trolls in a child’s face or to grab a toy from them. At first glance, this looks like an aggressive act. But all she’s really trying to do, in the only way she knows how, is to get their attention. It works. But it’s not really the kind of attention she had in mind.

So we practice alternatives. At home, when we’re visiting, at school, in the park. We’ll stop to watch children an talk about what they’re doing. Then, with a little bit of help, Jessie decides what she can bring to enter into play. Tess and Natalie are making a cake in the sand, so Jessie brings two sticks for candles and walks over to join them. Instead of stepping on the cake, she puts the candles in and starts to sing and sign happy birthday. Natalie and Tess move over to make room for Jessie. She plonks herself in the sand, looks at them both, and says “I can play?” They pass her a shovel and the grin that spreads across her face makes we want to climb to the top of the rope tower and shout across the canal “She can play! She can play!”

And play she does. When she has a few cues and understands the game or the rules, she and her friends have a lot of fun. They play dress up an store and bear hunt. They laugh, they fight, they ignore each other, they take turns. They’re friends. And somehow, through it all, they’ve come to know and understand Jessie. They’re more forgiving of her quirky social skills than I am.

But, some of these friends have Barbie dolls. Her cousin, whom she looks us to, has a Barbie. Laura got two aerobic Barbies for her birthday and offered one to Jessie. This was such a wonderful moment, I couldn’t say no. Barbie just ended up stuffed into my bookshelf. Disappeared. I couldn’t figure out how to explain to a four year old that I think Barbie promotes a hideous and distorted version of womanhood, but trolls, trolls are okay.

It brings up an important question though. Where do I draw the line? We’ve worked so hard to have Jessie take her rightful place in the neighbourhood, amongst her peers, but we haven’t worked this hard to make sure that she also takes on all the unwanted by-products of belonging. I never thought that integrating Jessie would involve such difficult questions: To Barbie or Not To Barbie . . .

But at four year old, I think we’ll let her friends teach her about Barbie, because that’s what friends do.      

31/21: Jessie Flips About Inclusion

A while ago Jessie started contributing to the blog by recording video segments on her Flip video camera (hence Jessie Flips) about random topics that meant something to her. When I asked her to share her thoughts about inclusion with others (especially parents of littler ones) for the 31 for 21 challenge, she agreed to start the tradition back up again, but wanted to start by writing something first. Please note, this is ALL hers, including where the new paragraphs start. Fridays will be Jessie Flips days … and you may get a video or something she wrote. If you have anything you’d like her opinion on or you would like her to write about, just post a comment and she’ll start a list.

Hey fellow bloggers!! I’m so excited to be back and to write for all of you again. I hope all of you had a wonderful thanksgiving. Today I want to talk to you about inclusion, but first I want to give you a bit of a background to what inclusion is. All of us have basic human rights and some of those rights are the freedom of protection from harm, the right to play, the right to an education and the right to be included.

I’m Jessie Huggett, I’m 22 years old and I have Down syndrome. And when I was in high school I was the only person with an intellectual/developmental disability who was in the regular mainstream classes. To me high school was a bit of a challenge because other people were laughing at me and judging me because of my disability. I felt alone, I felt as if I didn’t fit in. And the only friends I had were in lunch club. But my mom and I made a group with other high school friends that I had made and we had called it the J-Squad. The J-Squad helped me with socializing and getting involved in extra circular activities where I could and would learn new things and make new friends. It really helped me to fit in, this group really helped me to be more included.

In a high school setting there are lots of difficulties and challenges where people label and judge people with different abilities  but if you ground yourself with friends and you socialize with others you have a solid ground and a solid base where you can stand up for what you believe in, and the people that are behind you 100% will follow in your footsteps.

I highly recommend that your son/daughter should be included in the community and at school. It’s really important that your son/daughter contributes to the community, it is also really important to be social and to make new friends. And to parents out there I suggest you should believe in your child’s gifts and talents, advocate for your child and tell them that anything is possible if you set your mind to it.

Sure, going through high school can be a challenge and is hard but my mom, dad and I are really proud of what we did. We advocated, we fought for my rights and we accomplished lots of milestones. I agree that inclusion is hard, but it’s worth the hard times because it’s important to be equal. We all learn from people of different abilities. If we don’t go to school together then how can we learn from each other?  But if we do go to school together we can make and build friendships and relationships. 

31/21: Unreasonable Canadians—Norm Kunc

A number of years ago, when I was working on a training program for youth advocates promoting healthy and active living for people with disabilities, I came across a great resource developed by Advocating ChangeTogether (ACT). One of their units was based on the quote by George Bernard Shaw (excuse the male-centric, and more than just slightly human-centric language):

The reasonable man adapts himself to the world; the unreasonable one persists in trying to adapt the world to himself. Therefore, all progress depends on the unreasonable man.

The point was to show self-advocates why they needed to be “unreasonable” to change systems and advocate for their rights. ACT gave great examples—such as Rosa Parks, who was so unreasonable that she wouldn’t move to the back of the bus and give a white person her seat; and Ed Roberts, who was so unreasonable that he thought he had a right to go to college even though the University of California told him “we tried cripples and it didn’t work.”

I think we all need unreasonable role models and need to make sure that our children know that they have every right to question authority; that compliance is not the always the gold-star expectation (more on that in another blog post). Here in Canada, where in many ways we are behind our U.S. neighbours in terms of entrenching disability rights into law, we have a great and wonderful tribe of under-celebrated unreasonable people. People such as Norm Kunc, Jack Pearpoint, Judith Snow, Jean Vanier, Dave Hingsburger, Bonnie Sherr Klein, Alan Shain, and Catherine Frazee (to name a few) who are recognized internationally for their insights and work advocating for disability rights and inclusion.

During October, I will share a few of my favorites with you, hoping that bits of their thoughts and writings will challenge and change you, as they have me.

I’d like to start with Norm Kunc, whose writing challenged me to think completely differently about inclusion and “helpers.” Particularly his articles Integration: Being Realistic Isn’t Realistic, where he moves just slightly outside the dominant narrative to show why advocating for integration based purely on “reasonable” arguments just won’t work and does a great disservice to each individual and community of learners; and Hell Bent on Helping—Benevolence, Friendship, and the Politics of Help, where he deconstructs the relationship between those helping and those who are supposedly being “helped.”

Norm and his wife Emma Van der Klift have been working together for more than 30 years, advocating for the rights and full inclusion of people with disabilities in schools, workplaces, and communities. A number of years ago they produced a powerful video that I used for many years in workshops and school meetings.

I dare you to watch this video and not be changed radically—in the true sense of the word, right at the root. Be patient. Watch it. Sit with it. And let me know what you think.

A Credo for Support

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?

Retro Jessie: Jumping Over the Edge [1992]

I wrote this when Jessie was just 2 years old. Mary Anne Kazmierski found a bursary for me to go to the McGill Summer Institute. While the McGill Summer Institute no longer exists, its newer form is still alive and well and can be accessed through the Inclusion Network. This piece reflects the beginning of our relationship with inclusion, community, and Mary Anne and Carl Kazmierski. My how they changed our lives with their ideas, their love, their support, and their willingness to do battle. I will never be as strong as Mary Anne, or as faithful, but I hope that when I get tired, I can think of her and remember the difference one person can make in a community.


The birth of our daughter Jessie over two and a half years ago catapulted me over the edge of a precipice into what felt like a bottomless pit of dashed expectations and hopeless explanations. I had no choice about going over the edge of that particular precipice. Jessie, who had just one extra chromosome, also pushed us into territory marked by unbounded caring, love, commitment, pain, laughter, and fear.

The McGill Summer Institute on Integrated Education brought me to the edge of another precipice. A different precipice—for I now have a choice about whether or not to jump.

I went to McGill out of curiosity. I wanted to sort out some of the questions I had about integration/inclusion and (as any parent of a toddler can appreciate) I want to see what it would be like having adult conversations with real adults for days at a time!

In don’t think it was just the novelty of intelligent conversation that made my experience at McGill such a water shed. Nor was it just the electricity of Marsha Forrest, or the quiet concern of Jack Pearpoint, or the penetrating insight of Judith Snow, or the wide range of emotion and experience of the other individuals who were there, like me, to share and learn. It was all of these things together, and then something else. I won’t call it magic, because you may not read any further, but is was something in the realm of magic—a kind of quiet transformation, an inward exploration that radically focused my attention.

I could try to describe who I met there (Inez from Bogota, Sue from England, Chris from the North West Territories), what new information I picked up (MAPS, circles, and PATHs), and what happened (I talked, I listened, I cried) during those two weeks in Montreal, but is seems kind of meaningless out of context. The best I can say is GO! The next best thing I can share is how it affected me.

Through incredibly well-orchestrated community lectures (storytelling really), workshops, group discussions, hands-on learning, and one-to-one sharing, I was challenged to dream and to give voice to my fear. And by doing so my whole perception of our life as a family in a community underwent a radical shift.

From being emotionally sort-of committed to the idea of integration for my daughter and anybody else who had the courage and energy to fit for it, I am now intellectually , philosophically, and emotionally committed to creating a community that can embrace and include all its children. A community that has the ability to celebrate the gifts that each and every one of us bring into the world to share with others.

I ask different questions now.

I used to think in terms of promoting those skills in Jessie that would make her ready to be a part of our local preschool and in the future our local elementary school. Now I’m also asking what skills, what supports our preschool and elementary schools need to work on to welcome Jessie. Maybe it’s not a question of getting Jessie ready for school, but of getting school ready for Jessie an any other child who has been labeled or categorized in order to deny them access to a classroom.

Because it’s no longer about granting access. It’s about basic human rights.

I used to support integration from the point of view of a parent of a child with special needs. Integration then meant that my child would be able to reap the benefits (and the heartaches) of being a part of our community. But maybe the point is that our community, our schools, need to have the chance to reap the benefits (and the heartaches) of having Jessie as a full-fledged participant. The focus shifts from just Jessie and her needs to include our needs as a community. While Jessie needs to feel a part of our family and our community (and that’s a pretty basic human need) our own family, our friends, and our neighbours deserve the chance to re-evaluate and strengthen their own feelings of acceptance, love, understanding, and self-worth. Jessie has a gift to give. The question is: Do you want to find out just what that gift is?

As Judith Snow would say “Walking is a gift. And not walking is also a gift. Speaking is a gift. And not speaking is a different kind of gift. Being able to put your pants on right is a gift. And not being able to put your pants on right offers endless possibilities for different kinds of gifts.”

There are going to be compromises. There are going to be difficult questions. There are not going to be any guarantees. Because inclusion is not a product. Inclusion is a process.

I think it’s the only way to go if we want to try to build caring, creative, and fearless communities.

I’m ready to take that leap over the edge. To commit my energy to fighting for and creating inclusive communities. And it starts right here in my home. I know that I can’t do it by myself, and I’ve found that I don’t have to. That’s the beauty of leaping—it’s amazing how many people are willing to hold your hand.

It’s the only way to go if we want to try to build caring, creative, and fearless communities.

Good Night Mama Kaz

Mary Anne Kazmierski (Mama Kaz) died last week, a short eight months after her husband Carl. Both were vibrant, strong, faithful advocates for people with intellectual disabilities and for life. Carl was strong, pointed, and patient; Mama Kaz strode in and commanded a room. And when she entered, people either ran towards her, or as far away as possible. She was a formidable woman—full of fierce love; a powerful sense of justice; and a tenacious commitment to making schools, teachers, and administrators build inclusive classrooms and treat all students with dignity and respect. Schools hated her, and maybe that’s what I loved so much about her! She went out on a limb where very few were willing to go, pushed back boundaries, and was not afraid to yell “Shame on you!” to a principal who knew that they had allowed a student to be treated hurtfully on their watch.

She was also a very loving and proud mother, and brought those qualities to all her interactions with young people and their parents. She just loved you into being the best you could be and into sharing the best you could be with others.

Her obituary—written by her children Vince, Angie, and Greg (the first student with Down syndrome to graduate from high school here in Ottawa more than 20 years ago)—describes her well. It starts:

"Mama Kaz was called by God late on Saturday, November 5, 2011. After a life-time of fighting for others, mom died after a short, but tenacious fight with cancer. Her response when she received her diagnosis in August was vintage Mama Kaz: "That's no damn good," followed by "Let's just keep on keeping on." She spent her last days on her terms; with friends and family in her extravagantly decorated house, with good food (that she didn't have to cook) being served, surrounded by the sounds of celebration, of song and of prayer. The love that surrounded her was a living testament to her belief that: "if you want to love living, you have to live loving."

When I told Jessie that Mama Kaz had died, her eyes filled with tears and she quietly said “But who will call me to tell me that I’m doing a great job?” Indeed. And who will mobilize us and go in and confront school boards and fight for the very basic rights of myriad children denied not just education, but dignity and respect? And who will support the exhausted single immigrant mom battling with a school board over supports for their child with a disability? And who will encourage the family camped out protesting the school denying their daughter the right to attend the school closest to home? And who will call the father, exhausted from negotiating with the school for basic adaptations, to tell him what a brilliant job he is doing? And who will badger the superintendent and ask him if his priest knows what he is doing? And who will wear turquoise blue anklet boots and a matching Eiffel tower purse to funerals? Who, indeed?

Mama Kaz was one of a kind. She touched everyone she came into contact with in a very unique way. Everyone who knew her has their own delightful and often improbable story, and each story reflects another facet of the diamond that was Mama Kaz.

We first met Mama Kaz when Jessie was only two years old, and she found me a bursary and made me apply to go to the McGill Summer Institute on Inclusion. That experience (I have posted the article I wrote about it here) radicalized our lives and drew us into the circle that was fighting for inclusion. It changed the way I thought about Jessie, and about life. And it connected me to people who were rich in their experience of delight and in their understanding of what it means to be human and connected.

While inclusion has come a long way since then, our kids still need champions. Mama Kaz was one of those ‘til the end, and she will be missed. But we owe it to her to keep on keeping on. That means fighting for every child’s right to be educated, respected, and loved for who they are. That means gifting the world with the best in us, so that we may change the world and make it a place more filled with love and laughter. That means reaching out and encouraging others so that they feel strong and connected. That means not being afraid to stand up to the bullies, and encircling everyone in the embrace of love. Not as simple as it seems, but I will try to keep on keeping on, just as Mama Kaz ordered.

RETRO JESSIE: Shhhhh! Don't Break the Rules [February 2004]

A mea culpa to the Anywhere Library Association for the fear and trembling I inadvertently precipitated. It all started with a very simple email request. At least I thought it was simple. And reasonable, given their goal of promoting literacy. It was certainly not my intention to jeopardize the integrity of one of their programs, perhaps even the association itself! All I really wanted was for my daughter to participate, fully, in the RM Reading Program.

The RM Reading Program, according to the ALA website “brings an excellent selection of recent novels to the attention of Anywhere children and young adults. It rewards them for reading by making them judges in a province-wide literary event.” My first inkling of its existence was when our daughter came home excited that her school library was hosting the RM Club. “Mom! I’m going to join the RM Club! There’s these great books! You, like, read them and talk about them. You can email the authors and they email back. And you get to eat pizza!” Pizza? I wasn’t sure how pizza factored in, but the reading part sounded great.

It didn’t sound so great to the teacher-librarian who thought it would not be “appropriate” for our daughter to join. Our daughter is an avid reader and writer (by avid I don’t necessarily mean quick), but she also happens to have Down syndrome. While this doesn’t seem to have stopped her from learning and participating along side her peers, it does sometimes have the effect of reducing otherwise intelligent educators to a just barely contained simmering miasma of fear and preconceived notions about ability and value.

The teaching assistant (may the goddess of literacy bless her visionary soul) was able to convince the librarian that it would indeed be appropriate for my daughter to participate since she 1) loved to read, 2) loved to talk about books, and 3) loved to belong to clubs.

In November we were presented with a delightful selection of 10 Canadian novels for young adults. Parvana’s Journey by Deborah Ellis was my daughter’s first choice, precipitating all sorts of discussion at home about Iran and landmines and the effects of war on children. Run by Eric Walters was next, because 4 of the other participants were reading it and Terry Fox was, after all, one of her heroes. In January she started In Spite of Killer Bees by Julie Johnston, giving a copy to Grams to start a little Grandmother-Granddaughter email long-distance book club.

It was in January that I realized she had read all the easier books (in terms of length and content) and that she might not be able to complete the required 5 by the end of April. Required that is, to vote in RM Award selection. And if you think voting might not be important you don’t know my daughter, who can be quite insistent on having her opinion count.

So I made what I thought was a reasonable request for a child with a developmental disability. Could we set the goal for 4 books instead of 5? It was what I believe the Ontario Human Rights Code would consider an accommodation. But the librarian didn’t agree. The rules stated that to have voting privileges you had to read at least 5 of the books. The rules. Considering our history of breaking rules to make it possible for our daughter to be an active participant in life, the rule bit didn’t phase me. It made me tired, but it didn’t phase me.

I did what any advocate for inclusion (alias Mother from Hell) would do, I wrote to the rule-makers, the keepers of the flame of literacy, the Anywhere Library Association. If the whole point was to promote literacy and introduce young adults to Canadian authors, would allowing one young woman with Down syndrome to vote if she had reached the goal of reading 4 instead of 5 of the novels break the code? I didn’t think so. But that shows you how little I know about literacy or awards.

The ALA Education director was thoughtful enough to respond personally to my request. She assured me that she understood my situation and “heard” me. However, the ALA was not able to make an exception. “After all, these are rules we set and if we officially suggest that readers can vote even if they read fewer than five, we would jeopardize the integrity of the program as this dispensation would spread like wildfire through our membership.” Like wildfire? Whoa, I’d never thought of that!

I suddenly had a vision, perhaps the exact vision that made the ALA tremble: whole armies of adolescents with Down syndrome descending on public and school libraries across Ontario demanding to read 4 (not FIVE) new novels by Canadian authors. How utterly frightening.

She did have other suggestions— I could go back and talk to the teacher-librarian again or find an alternate club at one of the public libraries. Let’s see – I can pull my daughter out of the weekly school club with her friends (yea right, to quote my daughter), or I can make a further annoyance of myself with the school (done that, have the tattoo to prove it).

We do have other options, but there-in lies the rub. Our lives have become quite rich with complicated and time-consuming options that will allow our daughter pursue her quite modest desires (in this case: to read, to vote, to belong). For some reason the most straight-forward accommodations, the ones that will allow her to participate as a valued and equal member of the group, are seen as a threat to the integrity of our public institutions. I’m not sure I understand it. Perhaps that is why I keep coming up with these subversive ideas, ignorant as to their true impact on the basic fabric of Canadian society. Ah well, call me unrealistic. Call me a Mom.