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.

HomeShare

Jessie generates goals faster than her bedroom floor collects discarded clothes. Her newest goal (as if learning to cook, to clean the bathrooms, and developing a speaking/advocacy sideline were not enough) is to move out by Christmas. (See text message.)

At one point, as I was trolling the internet (because I have nothing better to do) I googled housing supports and options and saw a description of a home-share program. Common in many cities, this is where a person with a disability, once they feel they want to move away from their parents, can go and share a home with another family/couple/person. In order to qualify as a home-share partner (i.e., a person who has someone with a disability live with you in your home), you have to NOT be employed so that any job requirements don’t conflict with the time and energy you are supposed to spend on supporting the individual living with you. In addition, you get paid for it.

I had to read it twice, just to be sure: If you have a young adult with a disability, you have to pay a lot of money for services (because there aren’t enough to go around and meet people’s needs), plus you have to lose money because you can’t really keep your job because you have to teach and facilitate a good life for your son or daughter. But if you don’t have a young adult with a disability and you want one living with you, you have to agree to NOT work outside the home, PLUS you get paid. Hmmmm. What’s wrong with this equation?

Being ever hopeful, I thought of a solution.

I quickly called my friend Claire. “Claire, Claire!” I said. “If we all sign up to be home-share partners, we can all just trade children. We won’t have to try to balance work and teaching/managing our children’s lives, AND we’ll get paid for it!”

Claire wasn’t so sure. She thought that it would be the one time that the government paid attention to what was happening with our children’s lives. She could be right.