Brightening up the lives of disabled kids

J.T. Leaird ‘02
Massachusetts Hospital School

The mission of the Massachusetts Hospital School is to provide medical, rehabilitation, recreation and educational services to children and young adults who are physically disabled, assisting then in developing their maximum potential in all aspects of life.

My placement within MHS was assisting the art teacher, Katy Richardson.
Spending all day every day doing artwork with this population left me with vivid visual memories. The photos in this book are to show you the faces I fell in love with over three months, and to give you an idea of the range of creative projects the kids were involved in and the ways we helped the students to feel successes in such a physical medium despite their physical disabilities.

Imagine having legs with such underdeveloped muscles that you have never been able to use them. Imagine not knowing what it feels like to stand up without the aid of a machine that sandwiches you between two boards and holds you there with countless Velcro straps, to support you in an upright position. Imagine the muscles in your arm being so tight and misformed that you can’t unstretch it from the elbow. Or that all of your limbs are so spastic that you have no control over when you will be calm in your chair and when your arm will fly out and hit someone or some wall or some table. Imagine catching a cold and ending up in the Intensive Care unit. Imagine being a popular able-bodied high school senior with good grades and a long-term boyfriend and to one day have a brain aneurysm that leaves you unable to speak, confined to a wheelchair, and your only method of communication a DynaVox speaking computer.

Then imagine having a positive outlook on your life– being upbeat, smiley, and quick to tell jokes. Imagine playing on a nationally ranked basketball team, having the lead in your school musical, singing “Leaving on a Jet Plane” at the student talent show, and having your art exhibited at a gallery in Harvard Square. These are the kids I met at the Massachusetts Hospital School. All of them were my age or younger, all of them had gone through about ten times as much hardship as I have seen, and most of them have attitudes more positive than most of my friends at Dartmouth.

A couple summers ago, I fell into working with physically disabled kids and adults, at a summer camp called Camp Jabberwocky, on Martha’s Vineyard. I clicked with them and loved it and decided I was interested in teaching Special Ed. I ended up with this internship placement because my camper at Jabberwocky graduated from MHS and his mother suggested I used my Off Term to try out teaching there. It was the perfect opportunity for me, going into it knowing that I had three months to immerse myself in an institutional Special Education environment and see whether I could handle it. I knew I loved working with the disabled in a purely recreational setting, but I had no clue whether I’d love teaching in a classroom, with rules, and bells ringing, and within an institution, dealing with bureaucracy, and forms to fill out constantly. I had no clue what specifically I’d be doing and no idea how to get to the school from the train station in the suburb of Canton in the snow. Nevertheless, on the morning of January 3, 2001, I took the T to the Commuter Rail to a taxi and showed up in their lobby.

I remember sitting on a couch in the corner of the school lobby, waiting for the Head Teacher to get out of a meeting with parents. I watched as the automatic door slid opened and closed and kids wheeled themselves out of the school, towards their cottages and into the school for class. They all looked at me, interested and confused, and kept going. I remember looking around and a big yellow sculpture of a Volkswagen Bug catching my eye. I found out later that it was made entirely of Rice Krispy Treats in art class by two of the Elementary school groups of kids. I watched two older men transfer a student from a wheelchair to an adapted tricycle and leave for a bike ride around the grounds. I got up and looked at the pictures on the walls—all graduating classes of MHS, with the graduation year. I found my camper from Jabberwocky in one of the pictures. I remember that reassuring me that I was in the right place.

When I met with Jane Lawless, the Head Teacher, we sat down and talked about my interests and the school’s needs, trying to find the best fit for where I could be the most useful during my time at the school. Hearing that I was an English modified with Studio Art major, she immediately hung onto the Studio Art part and took me on a tour of the school that ended with meeting Katy Richardson, the art teacher. Jane told Katy that I was the new intern at the school and that I’d be spending most of my time as an assistant in the art room. Right away, Katy exclaimed, “What a gift!” and this gratefulness continued throughout the term. Sometimes I wondered how what I was doing could possibly be making enough of a positive difference to merit such praise, especially since I had been praised since the first day I was at MHS, before Katy even knew me. But I came to realize very quickly that any available set of hands is always in hot demand at MHS, and that Katy had been asking for full-time help for years, so the immediate thanks were understandable.

The Massachusetts Hospital School is a public residential school for kids aged 7-22, from all over the state, with severe physical disabilities. The three largest groups in the population are students with cerebral palsy, muscular dystrophy, and spina bifida. It is a huge complex, with a school, five residential “cottages” where the students live and eat, a Recreation building with a pool, gym, weight room, school radio station, and Snack Bar, a track, a barn and stables, and all the medical resources the students need. Thirty students are “day students” and are bussed in every morning from their towns and leave in the afternoons. The other 120 students come to MHS every Sunday night and get bussed back home on Friday afternoons for the weekend. Every aspect of the grounds is designed for their wheelchairs; there’s an entire department at MHS called Adaptive Design to make gadgets that allow students to write, move, and communicate more independently. The Philosophy Statement of MHS begins, “At the Massachusetts Hospital School (MHS) we believe that the patients/students we serve are first of all persons, and second, persons who happen to be physically challenged. MHS, therefore, utilizes an individualized, holistic approach to assist each patient/student to assume a rightful place in society with as much independence as possible.”

On a typical day at MHS, Katy would pick me up at the Commuter Rail station in Canton on her way to work, I’d sign in and pick up my Volunteer badge, and then we would head to the art room, down at the end of the hall and through another set of automatic doors. We had our own little world, separated from the rush of the rest of the school on the covered breezeway between the elementary school and the high school classrooms. The art room is big and bright, with huge windows on two of the walls. In front of one of the windows, Katy has hung a large empty gold frame. Framing the changing outside world, I always thought of it as an illustration of what goes on every day in the art room. What should get put in the frame and displayed is not only the perfect pieces of artwork that show mastery of Cray Pas and paintings that capture what a bouquet of flowers really look like, but real life. The processes that our students took to finish their work, and the way the work came about between them and us and everything that was going on around them were just as beautiful as the work they produced.

There are seven class periods every day, and we would usually have four or five art classes. Katy has almost the entire population of the school—each class comes once a week. I helped lead all of those classes and spent the free periods observing other classrooms, watching Physical Therapy sessions, getting materials ready for upcoming classes, or (at the beginning of the term) framing student work for the exhibit we were in at the Cambridge Art Association in February. The classes we had ranged in size from two to seven students, and the projects we were involved in were different for each classroom of kids. I tried to give an idea of the kinds of things we did with the photographs enclosed. Lots of times, our projects complemented something their teacher was focusing on in class. Other times, the projects were purely fun or seasonal. With the highest functioning kids, we spent a lot of time drawing still lifes and working on perspective and techniques. But everything we did fell under the goal that Katy stated early on in my time at the school: to help the students feel small personal successes every time they are in the art room.

Her philosophy that our job essentially entailed small student successes made sense to me immediately. Maybe it was selfish of me to really enjoy the immediate gratification, but what I liked at MHS was helping these students who really needed help right then and there. I got to watch them appreciate my help and profit from the work I was doing— moving a student’s paints to where he could reach them, squooshing a piece of playdough into and out of a kid’s hand so he could feel the texture, suggesting a different way to mix colors together to get someone’s picture to look the way they wanted it to look. Even helping put smocks on the whole class before they started to work and putting coats on kids before they left for lunch were meaningful, because it helped them to accomplish the things they could work towards only once the logistical obstacles were removed. The work I was asked to do was very real and concrete and that is what I loved about it.

The other way I was able to help the school, I think, was to be new energy, and especially to be young. For a lot of the older, higher functioning kids, MHS is exactly what they need medically and in terms of physical resources, but a very hard experience in other ways because the people the see all day are either the kids who they live, eat, and take classes with all week, or the teachers who are all as old or older than their parents. I got to form a number of relationships with students who didn’t have anyone around my age—someone from outside of the MHS community who would talk to them about different things—to talk to them on the level of peer.

The parts of my internship that made me happiest were the days when I could watch a child feel success from what he or she did in the art room. A seven-year-old girl, Samantha, was working with play dough one day and I was helping her. I asked, “So, what do you want to make?” Sam looked at me blankly. Katy had told me lots of times that, with most of the kids, it is better to give them a choice of three options than to ask questions that required them to generate an answer. A lot of them have speech difficulties that make it easier to point at one of three markers than to say “I want a blue marker” and a lot of others just live in worlds that are, by necessity, very mundane, and have a hard time thinking in abstract, creative terms. So I started suggesting things. Since it was close to Valentine’s Day, I asked if she’d like to make a heart. She looked right at me and said “Dinosaur.” And as if that wouldn’t have been enough to make my day, in the process of making this playdough dinosaur, she told me that it needed wings because it was going to be a flying dinosaur. It looked like a neon colored misshapen ball in the end, but she announced to everyone we saw in the halls as I wheeled her back to class, “Look! It’s my flying dinosaur!”

I found teaching (and specifically, teaching special ed) to be a see-saw of highs and lows emotionally. Days would be packed full of moments like that one with Samantha, and then on another day I would get on the train home in the afternoon frustrated to the point of exhaustion. Those days were basically divided into two sources of frustration. The first type was when I felt like I had not had enough energy during the day to help as much as I could have. Those were days when I felt that if I had only had a little more sleep the night before, I could have focused on a student whose words or yes/no responses I hadn’t been able to understand. Or I was mad at myself for not having had enough energy to take the next step with a project— to have new ideas for a kid who seemed bored with what he was doing. The other times I got frustrated were on days where I knew I had done too much– when I knew that they could have felt more success if I’d paid enough attention and been patient enough to let them do one more thing for themselves. The easiest thing to do as a classroom assistant is to take your student’s project and do it for him; then you don’t have to figure out how he can best hold his paintbrush or work on setting up a cutting board that will allow him to cut the paper for the project. But without exception, a final product that is utterly unrecognizable, but made fully by the student will elicit ten times more pride than a perfect, beautiful piece of art that the student watch a teacher make.

The strangest part of my term was the contrast between my life at MHS and my life at home. I had two roommates who were incredibly caring about what I was spending my term doing. I found that the only time I wrote in my journal was during school, when a kid did something that amazed me in some way that I had to record immediately, or reflecting on my day from the train ride home. As soon as I got back to the apartment, I didn’t need a journal because my roommates were so eager to hear about the highlights and the frustrations of the day. One of them had an internship Monday through Thursday, and after about two weeks of my raves about my job, began to come to school with me on Fridays to volunteer with a high school classroom. My other roommate was doing a corporate temp job, as a secretary at a financial company, making a lot of money and having no experiences that helped her to think about her future except to realize that she wanted a job as dissimilar to the one she was in as possible. Comparing our experiences constantly, I realized that my job was the main part of my winter experience, and what she considered her Off Term experience was everything that happened between 5 pm and 9 am each day. I know now that I need to work in a position that I can get excited about every morning. I need to be somewhere that contributes to others’ lives and that makes me feel like what I am doing is important.

I had a lot of friends who’d react to my job by saying, “Wow, what could be more perfect for you? That’s such a J.T. job.” They were right—the job and me were pretty much a perfect fit. And I was always really glad when someone made a comment like that so immediately, because it gave me a renewed sense that the things I have been pursuing in the time my Dartmouth friends have known me are all coming together to make sense. Not everyone, however, understood it. One night, we had some fellow Dartmouth 02s over and we were sitting around and talking about our internships. One said to me, “So, you work with a bunch of retards, right?” I almost choked. I wanted to punch him. Those words still ring in my ears whenever I talk to people about my internship. That comment was particularly ignorant, because in so few words he had managed to encompass all of the attitudes of entitlement and superiority that I can’t handle. So many people believe that since the physical situations kids like the ones I worked with don’t directly effect them, they don’t only not have to worry about them, but they can also treat them as less than human. It was the only time I was confronted with a comment that made so little attempt to hide that kind of attitude towards the disabled and made me so painfully angry.

All the time, though, people tell me that they can’t understand how I can work for and with the severely disabled. I commonly hear, “I could never do that—I’d just cry all day!” and I have such trouble understanding that idea as an appropriate or legitimate reaction to a group of people. So many people who react in this way are people I think of as having such good intentions, yet I think that crying is the biggest disservice that anyone can do for them. In some ways, I think spending time with the kids I worked with, feeling sorry for the way their lives and bodies are and thinking about the difficulties they face, and CRYING about it, is worse than steering clear of them on the street or laughing and staring. My view is: these kids are physically disabled of no fault of their own. They usually have no use of their legs. Often, very little use of their hands. Often a developmental disability in their brains. They get a cold and end up in the hospital. And they are dealing with it—this is normal life for them. If they can deal with it as the ones who life is hard for, who am I to cry and not be able to deal with it as the privileged one?

I am back at Dartmouth now, dorm room walls plastered with a banner that says “Good Luck J.T.! Thank you! Love Room 7″ and tons of artwork that students gave to me on my last day at school. I still miss the sounds of electric wheelchairs whizzing down towards the art room—by the end of my time at MHS, I could tell who was coming based on the sounds of the wheelchair. I miss my class of ten-year-old boys who thought nothing was more fun than making “brains” out of playdough, and thirteen-year-old Cesar who confided in me mid-winter that he wants to be a professional artist and would stop by to borrow paper and Cray Pas for the weekend on Friday afternoons, and eighteen-year-old LeAnne’s daily delivery of the previous day’s newspaper.

It left me with incredible memories, and excited about my future. I know that I want to go into elementary special ed. I know that I love being in the school setting, and especially in a setting where being a special ed kid is normal and being physically disabled says nothing about your abilities in other areas. As for the present, I am trying to keep the perspective that I gained from spending my days with the students and teacher of the Mass Hospital School. I am trying to remember that my ability to walk and communicate are gifts. When I can keep myself from taking those things for granted, other parts of my life seem a lot less urgent than they used to be. Priorities become more clear, and my life makes sense in the context of helping those who need it.

LSO, about my mentor experience:

My Alumni Mentor was Susie Webber Black, a ‘96 who works as a social worker at Mass General Hospital and lives with her new husband in Canton, the town where MHS is. Our pairing was just about perfect. We only met about three times throughout the term, but were in constant contact by email, and the relationship I formed with her was a very positive aspect of my winter. First of all, Susie was incredibly helpful as far as logistics went—before I even moved to Cambridge, she was giving me advice on how I would be able to get to Canton via public transportation (she does the same commuter backwards). More than that, it was just so good to know that there was someone in Canton who was thinking about me and wishing me well on my internship and constantly wanting to hear about how things were working out. Most significantly, with her working in a closely related field (she would be the one to see the types of kids I taught when they went to the hospital and counsel them and their families about post-hospital options), I got a different perspective on service-oriented work. I came to the hospital and she gave me a tour, showing me what her job entailed. She gave me advice on grad school and told me she thought I should teach for a few years before going so that I can direct my graduate studies to exactly what I know I am interested in. I think I will stay in contact with her