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

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.

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.