DAR #30: Mary E and the Horrible, No Good, Very Bad Birthday

DAR #30: Mary E and the Horrible, No Good, Very Bad Birthday

Please note: You will have a test Friday on literary (used broadly) references and allusions in this blog. I imagine that English majors may be at an advantage. One example: To what children's book does the title of this entry allude? Open note, open blog, open innernets.


Two years ago, I had the worst birthday ever. I was almost a year from brain surgery, unable to work, and beginning to learn which disabilities were probably permanent. In my year on medical leave, I participated in a university program for administrative certification. Kathy, the leader of the program, is a visionary, a compassionate person, who made adjustments to help me get through. When she asked at the end of the summer what I needed and I told her I needed a cot because it took too much energy to sit up so long, she arranged for a cot to be in the room where we took classes. Apparently ,though students often sleep in class, providing a cot was unusual.

I planned not to attend class on my birthday because an environmental education group was leading the seminar, and I suspected I would not be able to participate without hurting myself, but Kathy talked with them about my disabilities and said they would plan activities so that I could participate. I was skeptical, but agreed to try it.

For an opening activity, the thirty or so of us sat auditorium style. At the front of the seating was a piece of rolled up newspaper. I don’t really remember the details, but the objective was hit someone with the newspaper and that person had to run to the front and try to get back to their seat before you took their seat. Aside from not seeming like much of an activity to prepare me to be a school leader, I could hardly walk steadily and my only option in participating was to opt out, which I did by making it clear with my body language that I did not wish to be hit. My friend Keisha sat beside me and asked me how I felt: “Irritated.”

Debriefing the activity as a group, Keisha asked me to share my thoughts, and from that point forward the class was about me, something I didn’t feel comfortable about, though I did think the class should be about serving people with disabilities, me being the current example. Finally, my friend Angela offered to take me home. A relief. I’d had enough.

The next day, I wrote an essay about the experience to share with fellow students the next week. I couldn’t really see just re-entering as if nothing had happened, and I wanted my peers, who were exceptionally kind people, to think about working with folks with disabilities. I wanted to be clear that I thought an “opt out” option was not an adequate alternative. So the next week I shared this essay:

Living with Disabilities: Reflections on Teaching and Leading

Ten months ago I had surgery to remove a tumor from my brainstem. During that surgery I had a stroke. This surgery left me unable to walk or to use both of my eyes at the same time. Now I’m walking with a cane and wearing a patch so that I can function with double vision. Formerly an athlete, an avid walker, biker and hiker, I am now a person learning to live with my disabilities.

My primary emotional response since the diagnosis has been gratitude: for a loving partner-a rock in my life, a family generous with care and support, communities and circles of friends and colleagues who seek to help me use my skills and experience meaningfully, professional care-givers, health and disability insurance, the flexibility of administrators and directors in helping me continue my education and work in schools as I recover, and a faith that cradles me and gives me hope.

I am participating in an administrative internship at the state university and working in an internship in my previous district—at a small high school—while I am on medical leave. I have been working for eight years in schools with large percentages of students with disabilities—physical, emotional, and behavioral—and with students and their families otherwise struggling in this world: poverty, violence, jail, gangs, drugs, immigration, learning English. Though of course I thought about inclusion before my surgery, my disabilities and my continuing roles in education have me thinking differently about inclusion and education for all.

Please don’t single me out.

“How can we as a community help you to feel safe?” asked my instructor of the day. By nature a reserved person, unaccustomed to being the center of attention, I cringe when others dwell on my disabilities—even though I believe in their good intentions—especially when it seems an afterthought. If others don’t plan for me, I don’t want to be there. I wonder about students who must publicly explain why this class or this activity isn’t working for them and how to make it more effective for them. I especially wonder about students who are criticized or disciplined for not participating when they may be unable to participate. I wonder if this is especially difficult for students whose disabilities are not physical and therefore not obvious.

Inclusion doesn’t mean creating plans that create the alternative that allows a student to opt out.

In one of my university courses last week, a well-intentioned instructor said that some of the activities I could participate in, and when I needed to opt out I could. The first activity of the day included a type of tag where students run around and hit each other with a rolled up newspaper. My option was to put my hand on my head to indicate that I should not be hit. This class was not created for me. I needed the instructor to create real options for my learning, not just the option of opting out. How often have I had students who have not participated because I didn’t think of an option for them?



Holidays are stressful

Four years ago, I celebrated my 40th birthday with friends and family with a 60’s flashback party: disco ball, dancing, lava lamps, the Beatles, and peace signs. This year my birthday reminds me of the march of time, of how much I lost ten months ago and of how unsure I am about upcoming years. I know that some of our most struggling students have difficulties during the holidays. These days may be reminders of happier times, of how different their lives are than of those around them, of anxieties about the future. I wonder how often they feel fragile, like I do, and how hard they are working just to do the basics: get up in the morning, face each day, learn something, enter the community, keep it together. I wonder if in our joy we can notice their struggle.



Change is hard.

Simple changes can be hard for me to manage. A few months ago, I was in a district meeting that ended two hours early. This would usually be a cause of celebration, and was for most of the people in the room. For me, however, it meant that the transportation that I had arranged wouldn’t come for two hours and I would be alone in a building that was closing until they came. I thought it would get cold. Fortunately, a colleague took me home: relief except that I would be reprimanded by the city for not being there when my ride came.

Last week, during the state testing in my school, students not taking the test met together for community meetings to learn together and to address ways to improve the school. It was an exciting time for the community and for most students. I watched the stress level of students with disabilities, those who don’t speak English fluently and those who couldn’t find their space in the meetings (especially freshmen) go way up. I also worked with students—mostly seniors—who needed to be disciplined because they were disruptive during the meetings. “Am I in trouble?” many asked as they entered the room. They seemed so relieved when the discussion was more around how to help them participate responsibly than in telling them how bad they were. Because so many of us who are teaching and leading found these experiences exciting, I think we often mistake the difficulty of changing for disruptive behavior that should be punished. We have to plan carefully for those for whom change disrupts their carefully crafted methods of coping.

All means all—especially if “most” leaves me out.

The experiential education session may have worked for my colleagues, but it left me depressed and focused on how much I had lost. I was angry. I was not to be appeased on that day in spite of the good intentions of my colleagues and instructors. I left.

As an educator working hard to teach in meaningful ways, I sometimes felt relieved when a lesson engaged most of my students. I wonder now about students who have not been included all day—or all yea-- or most of their education. I wonder how often they are in the office because they’ve had it with not being served. I wonder how many of them are in the invisible statistics of those students who simply aren’t there anymore.

Laughter is a way of being part of the community.

I have always been a geek, delighted by learning: never the class clown. Friends and colleagues, however, have always commented on my dry sense of humor. Now, as a graduate student in class, I often use humor as a way to participate and to be someone other than just the student with disabilities. I really don’t like to cry or to share my struggles, so I’m more likely to try to make people laugh.

I think about class clowns, about how much they may be struggling and how much the humor allows them to be part of the community, even if the teacher disapproves. I think that the more compassionate students may be laughing because of their compassion rather than out of a desire to undermine the learning in the room, though as adults we often frame this collusion differently. We say, “Don’t encourage this bad behavior.”

What to do

I appreciate the fact that many teachers and colleagues want better to include me and struggling students in activities and to understand our experiences. Their compassion and want to understand is genuine.

Inclusion is hard and there is no magic answer, but I do have a few thoughts for teachers and leaders. 1) Make plans that emphasize inclusion in the community and in choices that include every student in the learning. Start by planning the lesson or schedule for students who struggle or for students with disabilities rather than trying to figure out how to include those with disabilities later. Then differentiate from there. In my current school, for example, the counselor hand scheduled each special education and ELL student before scheduling every other student. 2) Check in with students individually ahead of time (even right at the beginning of class or right before the activity) and not in front of the community in the moment about what will work for them. 3) Whether you are a teacher or an administrator, know that there may be a lot of pain under the surface of students and their families that you will never see and help them to make choices and to participate. Focus on student learning and wonder what behaviors might be saying about that student’s experience. 4) All of us with disabilities need to learn to advocate for ourselves and for our learning. I am not suggesting that we should not hold struggling students and students with disabilities to high academic and behavioral standards. I am saying that we should work to be truly inclusive.