Swim Team is a feature documentary about the sense of community and joy three youth with autism experience swimming on a competitive team called the Jersey Hammerheads. It’s also the story of their parents and their extraordinary efforts to support children who have been written off by professionals and shut out by other families. The film was part of the ReelAbilities Film Festival in Toronto this month. BLOOM interviewed director Lara Stolman. BLOOM: Why was it important to you to do this film?
Lara Stolman: I’m the mother of a child with autism myself. I was searching for swimming lessons for my son and I found this amazing story.
BLOOM: That’s so interesting, because I assumed as director that you didn’t have experience with autism. Lara Stolman: I don’t think I would have seen it the way I saw it, and I don’t think I would have been granted the access I achieved with the families, if I hadn’t been the mother of a child with autism.
When my son was little he had no fear of water. When he couldn’t swim, I was worried he would just wander off and jump into a lake or pool and drown. I found Coach Mike and his wife Maria and they told me about their plans to start their own team. So from a story standpoint, I was there at the beginning, which was great.
BLOOM: The film includes many private and candid moments with the boys and their parents. For example, in one scene Robert, who is 16, learns he has autism. How did it work out that you were present for those?
Lara Stolman: I appreciate that question. It’s part of a documentary filmmaker’s job to gain the trust of the subjects. But in this case it was much easier to get to that point where everyone was comfortable with me, and willing to let me come into their lives with cameras, because of who I am as a parent. We had so much in common from day one. BLOOM: Some of the most moving parts are when the parents talk honestly about raising their child with autism—including how isolating it is for them and the pain they feel when their child is excluded. What did you learn from the parents?
Lara Stolman: Being a parent of a child with autism I came in knowing a ton, but I still learned a lot. One of the reasons I felt so compelled to make this film was that as much as I had in common with these people, there was something I didn’t have in common: their positive outlook and their willingness to have high expectations.
I had come from a place where professionals said so many negative and terrible things about my child’s prognosis. I don’t think that’s unusual. Doctors tell parents of kids at the age of two or three that your child is never going to college, your child will never speak, your child will never take care of himself. When you hear that repeatedly, it’s extremely discouraging and defeating and can really impact the whole family in a negative way.
When I met Mike and Maria I was so struck by how positive they were. They heard the same negative things, but they persisted with their high expectations with their son. They wanted to see if their high expectations would rub off on the other kids and I believe they did, and they rubbed off on me too. I changed as a mom. I learned the importance of not giving up on your child, setting those expectations high, and not letting the other people around you give up on your child.
BLOOM: So many of the film’s scenes are magical because they’re shot underwater. How did you do that?
Lara Stolman: We had a director of photography who wore a wet suit and encased a camera in a water-proof casing and she swam with her camera. I also used GoPros and we experimented and placed them in different ways and had the boys wear them themselves. BLOOM: The parents articulate really hard parts of their lives. Did their experiences mirror yours? Lara Stolman: Now we’re really getting inside the story. No one has asked me this and I’m a little apprehensive. Of course I did all the interviews. I was on the other side of the camera, and I decided what questions to ask and which questions to edit into the film. I decided how to structure those answers into the film and how to fit the story into the film. My experience influenced it all.
I thought there were very important things that needed to be communicated. The film needed to communicate how hard parents work at helping their children when they have challenges, and how they’re working round the clock. All of the parents in this case had full-time jobs and one was going through a divorce.
It needed to show that sometimes financially for families it’s a burden or a hardship or impossible. It was important to convey that the services and supports aren’t sufficient, and that it can be very scary for parents when they think about what’s going to happen when they’re no longer around.
These kids are generally excluded or ostracized from so many things other families take for granted. The film was about a swimming team, but it could have been a film about a marching band or a theatre group. The point was that these are things that, if you’re a family with typical kids, you know they’re available to your family. And it’s not just for your kids, it’s for the family.
Sports is like the town square. Families can interact with one another and meet one another. In the midst of all of that is a lot of important socializing. If your child is excluded from those kinds of activities, you’re also excluded and isolated as a family. This swim team provided a much-needed sense of normalcy and community that these families hadn’t experienced.
I remember Maria telling me that Mike had never been invited to a birthday party and she’ll never forget the time she tried to invite people to a party for him and no one came. She cried when she told me that story.
BLOOM: I was moved by the interviews with Patty. She would be talking with a smile and then there would be tears running down her cheeks, but she would try to return to a smile. It made me think about how as parents we feel we have to always present a positive face to the world, because disability is so stigmatized.
Lara Stolman: I live about an hour away from these families, but in making this film I definitely became a part of their community and I fell in love with them and their kids. It was really important to me to show that even with a character like Kelvin, who represents a child that needs so much support, that he’s funny and lovable and talented and has things to contribute. BLOOM: What was the most challenging part of putting the film together?
Lara Stolman: I think the hardest part was deciding what was going to be in the film and what we’d have to leave out. We had such great material, and there were such interesting families on the team. But I knew from the beginning we had to narrow it down. I had a clear sense that it had to be two to four characters in order to really tell an indepth story about these characters. BLOOM: What do you hope viewers take from it?
Lara Stolman: I hope it inspires other families to set high expectations for their children, and I hope it inspires professionals to not make prognoses when there’s still so much that’s unknown about autism. I also hope the film serves to open the eyes of people who haven’t had experience with autism to the stigma and stereotypes that are still out there. And I hope it shows that young people with autism can have skills, they can be fun and worthy and valuable members of our community.
It’s so important that cinema reflects our lives. People with autism and developmental disabilities and all disabilities need to see their lives reflected in cinema. I hope this film helps in that respect.
BLOOM: I think it would have been hard for you to make this film if you hadn’t been the mom of a child with autism.
Lara Stolman: I have to say that nobody else could have made this film. As a mother raising a child who’s approaching his transition years, I saw that these were important problems that we should make the public aware of. I was aware of these public policy issues about how do we include people with disabilities—especially developmental disabilities—in our community, in the midst of a history where, forever, we’ve excluded them. It wasn’t that long ago that we shipped them off to institutions. What’s really important for these families is that their kids find jobs, and have some semblance of independence, and the film shows how difficult that is.
BLOOM: And even more so now with the cuts that are being proposed to Medicaid, which will affect so many families of children with disabilities. Lara Stolman: It makes it even more urgent. The president wants to cut all of this aid. That would make a bad situation even worse.
To find out about upcoming screenings, visit Swim Team.
By Louise Kinross Swim Team is a gorgeous documentary about a competitive New Jersey swim team made up largely of Latino and Asian youth with autism. It focuses on three of the team's stars as they prepare for competition. "I'm not like other teenagers," says one of these boys. "I'm autistic. When I'm swimming, I feel normal." We also get to know the boys' parents, who talk about their experiences raising them and their frustration with a lack of school preparation and support as they enter adulthood. The film was shown at Holland Bloorview a week ago as part of the ReelAbilities Film Festival. I'm setting up an interview with director Laura Stolman. Stay tuned!
This summer, 17-year-old Jeffrey Beausoleil (centre) will crawl through mud, scale eight-foot walls and jump over fire. The young athlete has become a regular competitor in Spartan races—running competitions in which participants battle their way through grueling obstacle courses.
Unlike most participants, Jeffrey was born without his right hand and leg. Still, the Saint-Jean-sur-Richelieu, Que., resident has completed six Spartan races since he began training last year, including Sprint races (5+ kilometres) and Super races (12+ kilometres). This summer, he’s aiming for the Trifecta—by attempting to complete a Beast race (19+ kilometres) on top of a Sprint and Super.
Here, Jeffrey weighs in on building confidence, dealing with bullies and why teenagers need to see more role models with disabilities.
BLOOM: Have you always been an athlete? Jeffrey Beausoleil: I played a lot of sports in my childhood, at school and with friends—handball, soccer, volleyball, badminton. But I never participated anything as intense as a Spartan race.
BLOOM: Right. Most people would find a timed obstacle course extremely challenging. I know I couldn’t do it. What drew you to this kind of challenge?
Jeffrey Beausoleil: There were two things. First, the Shriner’s Hospital for Children approached me and asked me to participate as a way to raise funds for them. I said yes right away because they’ve done so much for me. They taught me how to walk. How to use a pen. How to do everyday tasks. And I’m very grateful for that.
The second motivation was more personal. I’d played enough sports like soccer, and was tired of games with two nets and a ball. So boring. I wanted to try something different, something more challenging. The Spartan race, with its obstacles and its finish line felt like a good idea.
BLOOM: Raising funds is an admirable goal. But do you also get anything out of the races on a personal level?
Jeffrey Beausoleil: When you’re on the course, you cycle through a lot of emotions. Sometimes you feel happy and other times you think to yourself, “Why did I sign up for this?” But when I finish the race I’m always in a great mood. Most of the time I cry. I think having a disability makes the whole thing more emotional for me. I feel a sense of accomplishment. At the end of the races I always think, “I can’t believe I actually did it.”
BLOOM: What sort of adaptations do you make on the course?
Jeffrey Beausoleil: Every time I race I ask family or friends to come with me. You need to use two hands for some obstacles, so I can’t do them alone. During my first race, my best friend Michel helped me with those.
People at Spartan races are very open-minded. I’ve never seen anyone doubt me me at the race. We’re like a big family when we run. Everyone believes in and supports one another.
BLOOM: What about outside of the racecourse? How do people typically treat you when they first see you in public?
Jeffrey Beausoleil: Some people are scared of me. Especially younger people, I can tell. Older people ask me a lot of questions—about how I got my disability or what kinds of tasks I can and can’t do. Curiosity and fear are the typical reactions I get.
BLOOM: Have you ever felt isolated as a result?
Jeffrey Beausoleil: When I was younger I did. My friends could go out and do stuff that I wasn’t able to do. I also used to get bullied a lot. People used to tease me. That left me with really low self-esteem and I was scared to approach new friends.
Then, when I was 12 or 13 I got jumped. I was getting off the bus and a group of guys that was standing nearby made a rude gesture at me. I made the gesture back at them, and they came over to me. They took my prosthesis off and they beat me up.
BLOOM: That’s awful, I’m so sorry.
Jeffrey Beausoleil: It’s okay. Weirdly, after that was when I started to gain confidence.
BLOOM: What changed for you?
Jeffrey Beausoleil: After I was beat up, I had a conversation with my dad about my disability. It lasted, like, two hours. He told me that he loved me. And he reminded me I had much more courage than anyone else he’d met. He also made me realize that I can’t change my body. Even if I cry or dwell, I will still have a disability. So it sank in that I had to accept myself. There will be doubters and haters all our lives. We need to prove them wrong.
BLOOM: Is there anyone else in your life that’s helped you build that self-acceptance?
Jeffrey Beausoleil: These days I feel really well-supported by my family and my friends, and a lot of times my peers don’t even realize that I’m different, physically. I’m sort of the class clown. I’m the only one that makes light of my disability. Sometimes my friend will be like, “Yo, come and help me hold this,” and I’m like, “I can’t…I only have one hand dude.” They forget about my disability because we’re so close. And it’s better to laugh about my disability than to dwell on it. At the end of the day I don’t feel like I’m different. Because I’m not. I’m not different. I’m differently abled.
BLOOM: What advice do you have for teenagers with disabilities who are still trying to gain that self-confidence? A lot of people say 'believe in yourself.' But that’s easier said than done, no?
Jeffrey Beausoleil: The biggest challenge of having a disability is to be able to genuinely believe in yourself. Because you're always thinking about how people perceive you. It’s not physically having a disability that’s hard for me. It’s what people will think: will they accept me? Will they reject me?
I’d tell other kids with disabilities, 'Do what you love.' If someone tells you that you can’t, don’t listen. Do it anyway. If you can try out one thing you’re afraid of, you might be more willing to try another thing that makes you scared. Over time, you’ll become more sure of yourself.
BLOOM: Do you still spend a lot of time worrying about what other people think of you?
Jeffrey Beausoleil: I rarely worry about my disability anymore. I’m more concerned about what people are going to think of my outfits [laughs]. That’s a classic teenager thing, I guess.
Recently I’ve actually been trying to stand out. I mean, my body is already different. I don’t want the rest of me to look like just another person in the crowd. I want to own that difference. Besides, at my school they all wear saggy pants and big t-shirts. I’m going for a classier look.
BLOOM: Have there been any upsides to having a disability?
Jeffrey Beausoleil: Lots! On top of doing sports, I love to create music. I think I got into that partly as a result of my disability. Music helps me get my anxiety and stress out. Throughout my life, working on music and listening to it has helped give me a break from my problems.
My disability gave me a strong imagination, motivation. If I wouldn't have had it, I wouldn't run Spartan races. I wouldn’t have gotten into music. Honestly, I would probably be, like, a gamer. So overall, my disability is an upside. And I’m proud of having it.
BLOOM: What are you hoping to do in the future?
Jeffrey Beausoleil: My biggest goal is to be able to work as a DJ. Music allows me to express my emotions. I can describe how I feel and who I am and I never feel restricted when I’m making music.
If I become famous, having a disability will be a good business shtick for me. You don’t often see artists with disabilities in music. So people will be like, 'Oh my God, look at this guy. He’s a DJ and he only has one hand [laughs].'
But seriously. We need people with disabilities in sports, music, art. It would be inspirational to younger people. Teenagers need to see role models so that they can believe they’ll grow up and do the same things. I know it would have made a difference for me growing up. I think I would have become more confident younger.
Igniting Fitness Possibilities (IFP) is a Holland Bloorview program designed to get kids of all abilities active in fitness and sports. It’s offered in partnership with community groups in Toronto for students in Grades 1 through 12. We spoke to Virginia Wright, Holland Bloorview senior scientist, to learn more. Virginia co-founded the program with Kelly Arbour-Nicitopoulos, assistant professor in the faculty of kinesiology and physical education at the University of Toronto. BLOOM: What is the purpose of the program? Virginia Wright: We’re building an inclusive program designed to inspire a passion for physical activity in kids who have disabilities and those who are typically developing who aren’t active physically. There are many programs out there that are integrated, where you bring your child into an existing program and they adjust the program to fit the child as best as they can. We wanted to build the intention and curriculum of our program to be inclusive from the beginning. So in our program manual, you would see that each activity we do is designed with different ways that it can be adapted. Many of the kids with disabilities tell us that they hate phys-ed class at school because it’s adapted only marginally, and in ways that make them feel belittled or singled out. BLOOM: Which children can participate? Virginia Wright: Our current groups have children with physical disabilities who use manual wheelchairs or walkers, as well as children with autism, developmental coordination disorder and intellectual disability. In terms of the children without disabilities, we’re looking for kids whose parents would say: ‘I can’t get him off the couch.’ In the pilot phase, we are looking for kids who can participate independently because we want them to be the centre of the interaction with staff, as opposed to having support workers or families involved. They need to be able to work comfortably in a group, to tolerate noise and stimulation, and to follow three-step instructions. BLOOM: Why is there a need for this kind of program? Virginia Wright: We have lots of great programs at Holland Bloorview, but where do kids go from here into the community? What if they don’t have a rehab centre like Holland Bloorview? We wanted to design an inclusive program we could put into the community in the first place, so all of the kids’ interactions and friendships and activities happen there. We’ve partnered with Variety Village, the Miles Nadal Jewish Community Centre, U of T, the Abilities Centre in Whitby and the Pickering Soccer Club. They’re trying it out and telling us what they like about it. Ultimately the goal is to get programs going across the country. BLOOM: How does the program work? Virginia Wright: The first phase is called Quickstart. It’s 16 sessions for one hour a week after school. We’re helping kids develop fundamental sports skills, movement skills, phys-ed skills and game-play skills in a collaborative, non-competitive environment. The program is run by fitness instructors and coaches who have trained in adapted physical activity, not health-care professionals. We’re teaching the skills you need for games and activities like martial arts or yoga or dancing. The kids work together on a team. So one game might be that they have to get their bean bag down to the other end of the gym, but the rule is that everyone on your team has to have held the bean bag twice. They have to figure it out. At the end of four sessions they have to work together to create their own game and instruct everyone else in how to play it. BLOOM: What is the second phase? Virginia Wright: During Quickstart each participant is assigned a coach. The coach is at the sessions, seeing what you’re doing, facilitating activities and helping you set physical activity goals. The coach helps you figure out what type of activity you’d like to sign up for in the second phase, which is called Give It A Try. In Give It A Try students pick an eight- to 12-week program, usually at the same accessible community centre IFP is offered at. A coach works with them to find something that is a good interest and ability fit. These are regular programs like basketball, Zumba, fencing, soccer or Tae Kwon Do. IFP pays for this program because one of the barriers to families trying new things is being able to afford them. Once they’ve begun Give It A Try, kids continue to receive coaching about developing skills and setting goals for the future. BLOOM: What kind of results are you seeing in kids who’ve completed the program? Virginia Wright: We see large increases in kids' self-efficacy—in their confidence in trying new things and feeling they can do it, and in their pride of setting physical goals and achieving them. We have them fill out questionnaires before and after on their attitudes to physical activity, their confidence and a goals form on what they want to work on. They also do an advance motor skills test before and after and we monitor them with a Fitbit-like device. The kids say they have a much stronger sense of ‘I can do this’ and that physical activity is fun.
Igniting Fitness Possibilities is funded by Chillin’ for Kids, the Milos Raonic Foundation, The National Bank, GoodLife Fitness, the University of Toronto’s Connaught New Researcher Award and Holland Bloorview Kids Rehabilitation Hospital Foundation.
Cam Jenkins is Holland Bloorview’s family support fund and accommodations administrator. But in his spare time, he’s a goalie with the Silver Streaks—a co-ed sledge-hockey team that’s part of Cruisers Sports for the Physically Disabled, which operates in Peel and Halton.
BLOOM: What is sledge hockey?
Cam Jenkins: You sit on a sled with two skate blades underneath your torso and a rudder at the front. You have two mini hockey-sticks with picks at the end of the stick, so you can propel yourself on the ice. We’re taught to shoot with our left hand and right hand.
BLOOM: When did you begin playing and what is your disability?
Cam Jenkins: I began at 16 years old and I have spina bifida.
BLOOM: How often do you play?
Cam Jenkins: Right now we have three practices a week, of about one-and-a-half to two hours each. Then as the season gets going we’ll have one practice and one game each week.
BLOOM: What position do you play?
Cam Jenkins: When I first started I played forward and defense. Then I went to a tournament in Ottawa and because I was one of the most mobile in my sledge, they stuck me in goal. I've been playing sledge hockey now for 15 years with a small sabbatical while I went away to college and also lived in Whistler, B.C.
BLOOM: Why do you play?
Cam Jenkins: I like being able to play Canada’s favourite pastime and be part of a team and work as a team to reach a goal. I went to a high school that didn’t have a lot of people with challenges, so at that time it was definitely a way to meet people in my community who had the same challenges as myself.
BLOOM: What does it cost?
Cam Jenkins: It costs $450 a year to become a member, and that includes ice time.
BLOOM: What do you like the most about playing?
Cam Jenkins: I love being a goalie became I’m the last line of defense. I’m either the hero or the goat. If I let in a bad goal I look bad upon myself. But if I make a beautiful glove save and everyone’s cheering my name and congratulating me, there’s nothing like keeping your team in a game.
My favourite part is just being around my teammates and helping them out because I believe that every player can be a part of the team, no matter what their role. I always encourage people to do what they’re good at. That could be blocking shots or being a goal scorer. If you’re not a fast skater maybe your role is to stay in front of the net while the other defenseman runs around and tries to get the puck.
BLOOM: Do you have to be good at sledge hockey to play?
Cam Jenkins: We want everyone to be able to come out and participate, whether they’re doing it at a competitive level or doing it at a social, fun level. We have different kinds of teams based on what you want to get out of it.
BLOOM: What age are the participants?
Cam Jenkins: Our youngest is six and there’s no upper limit. There are 12 to 13 players on each team and each team has a coach, assistant coach and trainer.
BLOOM: Is there anything else you’d like to share?
Cam Jenkins: The Cruisers are all about making sure everyone is included and feels a part of the team. I want to get across the point that everyone has a part on the team.
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