Human beings have a natural reaction to feel curious about things they do not know. Children — before learning society’s rules about being polite and reserved — are just beginning to expand their minds. This time is critical for developing awareness about people with disabilities.
To determine the most effective teaching methods, O&P Business News spoke to those with firsthand experience discussing amputation and other disabilities with children.
Open doors
Patti Garofalo’s first child, Annie, was born a left transradial amputee.
“It was a shock, and so we decided that we needed to find some other families like us,� Patti said.
She and her husband found a family with a young girl, who at 13 years old was well adjusted to her limb difference. After asking questions Patti said she knew were silly — “Can you ride a bike? How do you sharpen pencils? Do you have friends?� — the girl told the Garofalos that she wished she had met someone in her situation earlier in life.
“That was pretty impactful for us,� Patti said. “We decided we were going to make that happen for our daughter, so that wasn’t one of her regrets.�
Patti began reaching out to the amputee community. At an event held by the Helping Hands Foundation, a support group for families with children with upper limb differences, she watched children use both arms to accomplish tasks and found in that a lesson for non-amputees.
“I think when a kid is born without a hand, you kind of assume they don’t have an arm, as a two-handed person. So when I was trying things out, I’d always put my arm behind my back, versus thinking of the arm as a tool to assist the hand,� she said. “It was an eye-opener.�
A couple of years later, the Garofalos moved to Massachusetts and Patti joined Helping Hands, first as secretary and eventually as president. Through the organization, Patti has opened several doors to amputee advocacy for Annie.
Peer education
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For years, Annie has served as an example to young children in Helping Hands, through her carefree attitude about her disability and her willingness to explain tying shoelaces and zipping jackets with only one hand.
She even began educating others about disabilities early in life. Patti recalled a day Annie spent playing in the sandbox at the playground. Annie met a playmate who asked question after question about why she was missing her hand. She put down her pail, looked at the girl and said, “It’s like you have glasses and red hair and that’s how God made you. I have one hand and that’s how God made me.”
The little girl finally understood and they continued playing together.
“She was 4 and a half years old and she was doing that. It worked,” Patti said. “[As parents we] have to discuss uncomfortable situations with her.”
Annie, now 16 years old, still spends time explaining her limb absence to children, and adults, who have questions.
“Though people do stare, I understand their curiosity and would rather them ask questions than continually stare,” she said.
She finds that parents often discourage their children from drawing attention to her arm by asking about it.
“Children are more accepting and open than adults seem to be so I feel it necessary not only to educate children, but hopefully the children will also help to educate the parents,” Annie said.
More important, she said, is making the point that her disability is not about things she cannot do, but how she works to accomplish things.
“People tend to perceive all disabilities as a hindrance instead of a difference,” she said. “I do my best to promote a view of disabilities as a difference by showing all that I am capable of, and how I can accomplish the same tasks in different ways.”
Adults and children
When Mona Patel, LCSW, was a college student, she was hit by a drunk driver on campus, leading to a right forefoot amputation, and eventually a transtibial amputation.
Patel’s amputation, combined with her career as a social worker, keeps disability at the forefront of her mind. She also serves as a member of the Amputee Coalition of America’s (ACA) Volunteer Outreach Team, helping amputees in Texas, Oklahoma, Louisiana and Arkansas come together with others who understand the daily struggles they face. Through her advocacy, she ensures that both her daughters, who are 4 years old and 6 years old, are aware that all people are different — not just those with disabilities.
“They come to work with me sometimes, and they see people missing one, two, three, sometimes four limbs, and it really doesn’t phase them,” Patel said. “They feel comfortable asking them questions, like how they are feeling, and [my children] are becoming more compassionate individuals because of the fact that I have this issue and that I do this work.”
Seeing her own children benefit from her openness about her disability inspired her to reach out to other children, beginning with her daughters’ classes at school.
The little boys in the kindergarten class hunch down on the ground, level with her prosthesis, touching it and her other foot, she said. She takes this opportunity to initiate conversation about her disability.
“It’s harder for them to articulate the questions they want to ask me, so I’ll help them — ‘Do you want to know what happened? Or why I have it?’ And they say yes, and I tell them I was hit by a car,” she said.
In her older daughter’s class, Patel takes the lesson further by removing her prosthesis and demonstrating how it works.
“It’s an invaluable lesson that these kids can be exposed to,” she said. “It’s an open environment for them to be able to ask questions and know that it’s okay to be different and to look different.”
In the classroom
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One way for amputees to address their disabilities with non-amputees, and keep control of the situation, is to prepare a story ahead of time. The same holds for parents of young amputees.
“It doesn’t have to be true. It doesn’t matter,” Janet G. Marshall, CPO/LPO, prosthetist-orthotist at Shriners Hospital for Children in Tampa, Fla., said. “They can say, ‘An alligator bit my hand off,’ and then they’ll say, ‘No, not really. I was born this way.’ But it puts the control in their hands, rather than being defensive.”
Shriners sponsors a Care Bear Clinic, where children in kindergarten, first and second grades take a class field trip to the hospital to learn about the children there. Through this educational setting, children are free to ask questions and receive important information about disability so that they no longer are bewildered or frightened by it, Marshall said.
Another tactic that she employs in the Care Bear Clinic to explain disability to young children is to ask them what color their eyes are. When they respond with a variety of colors, Marshall asks why their eyes are these colors, to which they say that they were born that way.
“Exactly,” she said. “Our kids [at Shriners] were born without an arm or a leg. They didn’t ask. That’s the way they were born.”
In 2001, Patricia Isenberg, MS, chief operating officer of the ACA, created a curriculum for educating elementary-age children about amputees. Now available as a free online resource, downloadable for classrooms with or without children with disabilities, this program provides information about people with disabilities and the challenges that they face, as well as an opportunity for them to appreciate the differences in everyone to reduce social stigma.
Derrick Stowell, MS, CTRS, youth activity program coordinator for ACA, said he recommends that parents of amputees present this program to their children’s teachers.
“Results [of the program’s pilot study] showed that the students who were taking part in the program did show improvement in their perceptions of individuals with limb loss,” he said.
Stowell said that he also hopes to work with Annie Garofalo, who previously attended ACA’s Youth Camp, to implement a program encouraging other young campers to teach children about being an amputee.
Labeled Disabled
Maggie Doben, MEd, first grade teacher at Cambridge Friends School in Cambridge, Mass., was a curious child, fed by her parents always taking time to answer her questions. She coupled this natural curiosity with graduate work helping children understand disability, and began developing her own experiential curriculum for young students.
After more than a decade of work in this area, and 2 years of development, Doben released Labeled Disabled in May 2008. The documentary chronicles a year in the life of her first grade students and shows them coming to an understanding about living with a physical disability.
This program shows people with all different kinds of disabilities, from amputees to people in wheelchairs to those who are blind and deaf.
“I actually invite guests to come into our classroom and meet with students and answer questions and interact with them,” she said. “[The students] have an opportunity to satiate some of their curiosities and get accurate answers and information about what life is like with disability.”
These days, Doben said, more schools are working on making their curricula multicultural and anti-biased.
“Disability is an aspect of that that has really been ignored or omitted,” she said. “It is essential that this becomes part of our daily dialog.”
The message Doben wants to relay about all children is that they do not set out to offend by asking questions.
“They will stare and point, and it’s not because they’re trying to be mean or obnoxious. They’re curious,” Doben said.
“Children, when not given answers, make up their own answers, and those tend to be incorrect,” she said. “My hope is that people who live with disabilities, who feel comfortable enough, will offer an opportunity for children to engage in conversation with them.”
Learned innocence
Often, parents cultivate the stigma surrounding disability, sometimes without even knowing it.
“I think a lot of it probably stems from the adults’ fears and insecurities,” Patel said. “They don’t want to expose their children because they don’t know how to deal with it.”
Doben agrees.
“My problem with adults is that we should know and we don’t,” she said. “People say things that are just ignorant, and you don’t expect it from adults. But in many cases, no one has ever told an adult either.”
She aims to break this pattern of ignorance through her work.
“A lot of learning goes on for parents,” Doben said. “They really have to challenge their own stereotypes as well.”
Some of parents’ knowledge, Patel said, comes from their children.
“Their innocence should teach us a lot,” she said. “We have so many opportunities to learn from our children.”
Any parent sympathizes with the fact that there is no shield big enough to protect children from bad things that might happen to them. What makes people different, however — be it eye color, socioeconomic status, or physical or mental disability — should not be considered reasons for shelter.
“This is life,” Patel said. “We have to prepare our children for what they will face in life. Hopefully not personally, but they are going to come across a child in their class who’s in a wheelchair. Are parents going to want their children to shun that child in a wheelchair or not befriend that child? I don’t think so.”
The earlier parents can expose their children to differences, the sooner they will understand that it is okay, she said.
“We are no better than anybody else. We are all the same.”
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Stephanie Z. Pavlou, ELS is a staff writer for O&P Business News.
