Susan Whatley, MDA Health Care Service Coordinator in Nashville, Tenn., (right) and Jan Blaustone make a presentation about MDA at Beech High School, while Polo the service dog takes a break. Photos by Rick Lance

In one sense or another, we're all educators. Children soak up their parents' words and actions. Older people remember history as they lived it and recall their experiences in stories and photographs for younger generations' benefit.

MDA summer campers enjoy their week at camp, all the while educating the counselors and volunteers who witness their daily pleasures and challenges. The role of an educator is especially important for people with disabilities, whether it's a role sought out or one dictated by circumstances.

Every day people affected by neuromuscular diseases are educating those they come in contact with, whether they know it or not.

As I go about my daily routine of work, grocery shopping, errands and play, I can't help but notice that people are watching me. Many ask questions and make comments: "What's wrong with your leg?" "Did you have an accident?" "How long have you been like that?" "I have a friend who had a bad leg just like you."

Or they ask about my scooter: "Hey, Hoveround!" "I wish I had one of those." "Can I get a ride?" "Is it fun to sit in that thing?"

I also field questions regarding my service dog, Polo: "Isn't that just great that he can help you see and drive?" "He's so nice. But, you know dear, he shouldn't be inside here." "How does he tell you what we're saying?" "He's just like those little horses — only they wear booties, right?" "Is he tame or will he bite?" "Does he do tricks?" and the ever-popular, "We love dogs. Can my child pet your doggie?"

I take on the role of educator when I respond to these questions. Sometimes I want to ignore these stares and comments but more often than not, I smile and say a few words that somewhat satisfy strangers' curiosity or clarify their misconceptions.

On rare occasions, while substitute teaching, I get an opportunity to answer students' questions with a minute or two of exchange. But what about the rest? What's the best way to reach the general public or the kids I don't teach on a regular basis? How is their curiosity answered in a world in which they don't normally associate with someone like me?

I've found many opportunities to educate and raise awareness about disability issues and neuromuscular diseases. For several years I've been speaking in conjunction with Community Health Charities of Tennessee. This organization makes presentations to companies, agencies, and state and county employee groups, urging audience members to make charitable contributions through payroll deductions.

They want to know that their hard-earned dollars are spent wisely, and I love reassuring them that this is indeed the case.

CHC spotlights health-related charities, including the Muscular Dystrophy Association. When I show up and speak for 10 or 15 minutes about what living with limb-girdle muscular dystrophy is like and how the group's contributions to MDA affect my life, I leave feeling confident that I've enlightened the crowd and raised a few dollars for MDA in the process. It's a win-win situation and one of my favorites.

Unlike the younger people I encounter in schools, the corporate and employee groups ask me very few personal questions. They tend to ask more about MDA and how it affects the lives of those it serves. Understandably, they want to know that their hard-earned dollars are spent wisely, and I love reassuring them that this is indeed the case.

In addition to addressing "where the money goes," I also point out that much of the durable medical equipment that MDA assists us in purchasing is rotated to other users through MDA's loan closet program. I explain that neuromuscular diseases are progressive, and our needs change almost as fast as youngsters outgrow their shoes and underwear. I'm glad to explain that MDA has a resourceful way to recycle much of the equipment it invests in.

Another educational opportunity is talking to students of all ages in an "official" MDA capacity.

About seven years ago Susan Whatley, MDA's Health Care Service Coordinator in Nashville, Tenn., received a call from a local elementary school asking if MDA would speak to a particular class about muscular dystrophy. It seemed that a boy with Duchenne MD was having some problems answering never-ending questions from students regarding his transition to a wheelchair.

Susan asked me to join her in presenting this new "lesson" to the boy's class. (Since then Susan and I have partnered with many schools in our region, several of which have asked us to return each fall, so I guess we're doing something right.)

On this particular morning seven years ago, I began by asking questions of about 25 fourth-grade students.

"How many of you think the Braves will win the World Series? Raise your hand." Every hand flew into the air. "Who likes recess better than math?" Arms flailed in unison. "How many feel that pizza should be served in your lunchroom more than once a week?" Again, arms soared and giggles continued.

I carried on until I noticed that the boy using a shiny new wheelchair wasn't attempting to raise his hand any longer.

"Boys and girls," I explained, "you've just learned your very first lesson about muscular dystrophy. If you were affected by this disease, you would no longer have the arm strength to raise your hand in class." Suddenly, the class grew silent, and I knew that when I left this room, the youngster with Duchenne would be more comfortable with his curious classmates and compassionate teacher.

When a student is affected by a neuromuscular disease, it's only natural that other students ask

Kids ask tough questions like: "Why did Jimmy get this disease? When will you get better? How long will you live?"

questions. I went on to answer the group's questions about why this boy, in kindergarten the fastest runner in class, was now falling a lot, had trouble carrying his books and sometimes needed assistance in the bathroom. His friends were concerned. They wanted to help but they also needed to know how to play and how not to play — why a bump or a push could lead to an unavoidable fall and possibly injure their buddy.

I learned something, too, that day. Nothing brings me more satisfaction than answering these kids" tough questions so their friend and classmate won't have to. (Some kids, especially as they get older, handle the questions very well for themselves.)

With the candor of children, these kids asked tough questions like: "Why did Jimmy get this disease?" "When will he get better?" "Will Jimmy die from it?"

And every time I visit a classroom, they ask me equally tough ones: "When will you get better?" "Can't you take medicine to make it better?" "Will I get muscular dystrophy, too?"

"How do you show your son how to play catch?" "Who's going to take care of you when you're really old?" "What will happen to your heart?" "How long will you live?"

Most of the questions I'm asked can be answered through my 15 years of experience living with

High school students are eager to know how they can help MDA fulfill its mission.

MD or from reading MDA publications. When it comes to these hard questions, however, I find myself struggling to say the right thing.

I answer the tough questions honestly but I highlight the positive. I don't know how long I'll live or what I'll die from any more than Jimmy does, and that's what I tell the students. But I also tell them what I do know.

"Without this disease," I say, "my family would be so small! I wouldn't have made all the friends I have now. Polo wouldn't be my service dog. I doubt I would have adopted our son and I'd never really know my strengths."

When speaking to high school students I expand my answers to include what I've learned from and about the disease and what I'm told to anticipate in the future.

When my son, now 13, was a toddler he asked about my muscle weakness and I was honest with him as well. I said, "Some people have strong muscles. Some people have strong minds and some people have strong hearts. I'm lucky because I have a strong mind and a strong heart."

For the most part, questions from kids ages 3 to 7 are much easier to answer than those from children in the middle-school years. The younger ones are much more interested in the mechanics of my scooter than in me: "How does that thing go?" "Where do you put the gas?" "Does it cut grass?" "How come you can be here and motorcycles can't?"

"How do you drive your car in that thing?" "Where do you put it at night?" "How fast can you go?" "Which lane do you drive it in?" "Can I get one, too?"

If these wide-eyed sweeties don't put a smile on your face, nothing will.

Another of my favorite groups to speak with is high school students. In Hendersonville, Tenn., every year a terrific bunch of marketing students from the DECA Chapter at Beech High School asks me to speak at the elementary, middle and high schools. This fall I spoke to 300 high school students and to marketing classes. In this audience, comprising freshmen through seniors, the questions centered on the disease.

Blaustone speaks to a marketing class at Beech High School about the DECA Chapter's assistance to MDA. MDA Program Coordinator Jill Maxon — who was an MDA volunteer in high school — is at left.

"What's the most common form of muscular dystrophy and what are its symptoms?" they asked. "What's the predominant age someone becomes affected by a neuromuscular disease?" "Is it genetic and can anyone be tested for it?" "What does the latest research say, and have you participated in any medical trials?"

"Are there drugs or therapies available?" "Do you think there will be a cure any time soon?" "What can we do to help?"

Smart questions from smart young people. It's because of these bright, caring minds that I have hope there will someday be a cure. When these kids grow up, many will choose careers in medicine, social work, various fields of therapy and other areas crucial to those of us with neuromuscular diseases. (DECA is a national sponsor of MDA, and I'm proud to say that 42 of Beech's 200 chapter members competed at the DECA international level last year.)

When people served by MDA educate the community, the impact can last for years.

Many DECA chapters work with MDA through the organization's Civic Consciousness project.

Beech's Chapter President Sean Logan says, "We chose to work with

"When you become involved with MDA, you feel like you're part of a family that's making a difference."

MDA because of the active role it takes in striving to make the lives better of those who have a neuromuscular disease. Too many people still do not know about MDA or what MDA's goals are. Our goal is to reduce this number of people ignorant of the organization and to increase potential sponsors and volunteers."

Mallory Moulder, national DECA competitor, volunteers at Nashville's Telethon broadcast and agrees that meeting people served by MDA gives her a great education. "It makes me want to work that much harder knowing that someone I met will be affected by my performance."

Younger kids like these at St. Joseph's Elementary School are curious about Blaustone's scooter as well as her disease.

Sean notes that having people served by MDA speak to the public is important.

"When MDA clients talk to community members, there is a larger, more beneficial impact than if I were to speak about MDA and muscular dystrophies," he says. "However, being a high school student enables me to target a younger generation and have them grow up knowing about MDA. I feel that young people are more open to listening and should be the prime target in creating awareness."

Young people also get an important education as MDA volunteers.

Jill Maxon had a friend in high school with a neuromuscular disease. Becoming close to his family, she often volunteered at MDA events and fund raisers. When she graduated from the University of Tennessee at Knoxville with a degree in business, she wanted a career in business, but she also had a burning desire to use her education to help people.

She found a way to fulfill both wishes.

"When you become involved with MDA," Jill says, "you feel like you're part of a family, a family that's making a difference. That's the feeling I had back in high school when I helped out at our Telethon and that's the feeling I get now, as program coordinator for MDA in Nashville."

Interaction and firsthand meetings between people served by MDA and the community prove beneficial in many ways. The younger generation is targeted when an adult like myself goes into the schools or when DECA marketing students volunteer at MDA summer camps and pass their knowledge on. Once acquainted with MDA families, young people not only become more knowledgeable about MDA and neuromuscular diseases; more importantly, they often seem inspired to do more in the fight for cures.

And that's how education pays off. When young people learn about neuromuscular disease from someone who knows about it firsthand, they don't forget. MDA continues to grow with the help of these terrific young people, and it will do so until better treatments and, ultimately, cures are found.

Until then, chances are I'm booked, as are many others, but we'll gladly pencil you in.

Jan Blaustone, MDA's National Personal Achievement Award recipient in 2000, is a Nashville writer and teacher. If you're interested in volunteering as a public speaker for MDA, just contact your local MDA office and find out what opportunities are available.