A member of the board of the New Hampshire Branch of the International Dyslexia Association, an esteemed author of articles on education advocacy and the mother of two sons, Suzanne Heath discusses how and why she connects policymakers with the information they need to make a difference for children with LD.
What brought you to the issue of learning disabilities?
Suzanne Heath: My kids had issues in school. I was familiar with the special education system, and it was not working as efficiently as it should. In the course of getting my child what he needed, I learned more about things that I thought could be improved, and that's what I've been working to do.
What made you feel like you had the power to go beyond your local school?
Suzanne Heath: I think the key to advocating for a child is making the system he or she is in better. In order to get an education for your child, sometimes you work with a teacher, sometimes you work with the school district, sometimes the school board, sometimes Congress — it's all part of the same thing.
The thing that brought me to that conclusion was when the head reading specialist in my child's school told me that she felt bad that I was concerned about the reading program, but she really didn't think I had to worry because by the time "these kids" got out of high school they were almost always reading at a sixth grade level. Now, knowing 10-20 percent of the population has some reading difficulties, I realized that my son was not the first child who ever had a reading issue, and he certainly wasn't going to be the last one.
There had to be something in place other than deciding that kids either couldn't read, or could spend twice as long and learn half as much. And it wasn't a situation of uncaring people. It was an uninformed system. So that, in a way, led me to changing the system.
When I started, it wasn't that they didn't have the skills to bring a child to grade level; but systematically it was okay to have so-called "reluctant readers" in the classroom, and to keep them back while other students went on to the next grade level. That's the thing that I'm aiming to change.
How did you start? What's the first step to being an effective advocate?
Suzanne Heath: If you're going to get what your child needs, you need to know what your child needs. You're going to have to read, and go to conferences, and go on the Internet, and find out what you need to know because you haven't had that job before. You have to learn it. So I put books in the library. I told people the books were there. I would send a pile of flyers to the pediatrician, to people who had evaluated our child outside of the school system, and to other parents so that they could put them into their network.
If I found good information, I sent it to somebody who needed to know it. When I met someone who needed information, I continued to keep up the contact. I guess what I try to do is provide information for people who can use it.
Anytime somebody--senators, congressmen, the governor — comes up with a policy that I think has a hole in it, I write and say, "This won't work because of this." Sometimes those people are in my state; sometimes they're not. I'm sure that many of my letters don't get read, and quite a few don't get answered.
Did you start out looking up all of your state and federal policy makers and sending each and every one of them letters, or did you start gradually?
Suzanne Heath: I started gradually. The first thing I did was get a copy of the state and federal law, because that's the game plan that I thought we would be operating under once my child was in special education.
At first, I didn't know how to use the Internet, so I asked a friend to show me. I would say that the Internet is critical to anything I've done, and it's critical to what anybody else can accomplish. As far as looking up state people, I really didn't decide to target people in the state, but when I had something that I thought wasn't working right, I would find out who to write to and write to them. You also have to spread the resources that you have to other people, other parents, at the same time using them yourself. It's part of doing what you can, when you can. The big things you do are no more important, and no more difficult, than the small things you do. If you drop off a stack of flyers at the laundromat, or the tutor, or the library, you may have wasted your paper, or you may have informed five people about where they can start looking for resources.
Can a busy parent with a full-time job be an effective advocate?
Suzanne Heath: Yes, yes. They definitely can. I have put anything I wanted a parent to have on the Web site of the New Hampshire branch of the International Dyslexia Association. You can take those flyers and put them anywhere. Mail them, and send them to a group of your friends; people who might use it and also pass it on to three more people.
There really isn't a wasted effort. People need to see things a few times, before they take a real look at it. I might talk to somebody five or six times, and I might get the brush-off. But then that person might read a magazine article, and then it won't be about a foreign subject. It will be about something they've heard about. Even using the correct vocabulary when you are at an IEP meeting is critical. When they talk about "best practices," you talk about "research based." When they talk about "measurement," you talk about "objective measurement." It's just little things that you throw out there. Just don't quit. It helps if you're an obsessed person, but even if you're not, there are things you can do.
So what is it that you do now?
Suzanne Heath: Well, I'm on the board of directors of the New Hampshire Branch of the International Dyslexia Association (http://www.nhida.org). I served on the board of directors of the Council of Parent Attorneys and Advocates. I do some writing for Wrightslaw.com, and I've written a book with Pete and Pam Wright about the No Child Left Behind Act.
Is it important to work through an organization?
Suzanne Heath: I think you have to belong to an organization that is well connected with the disability you are trying to learn about. Get information about their Web site, their conferences, their publications. They usually have a newsletter and put out some information about training. I would do this even if I could not afford to go to the conferences or the trainings because you need to know what's out there. Membership costs are low, and you need the contacts and the information. A lot of times conference presentations are available on audiotapes that you can buy from their Web site after the conference. Sometimes you can send for the materials that were used at the conference. Several parents can get together and drive to a conference instead of flying. But you need to know, from an independent source. You need to become an expert. To do that in any other field, you would do research and get training, and you need to do it in the parenting field too.
At this point, are you close with legislators? Or are you still removed and you keep on sending information?
Suzanne Heath: I keep sending the information. That's another reason I think people should be members of a national organization. Here are lots of resources for free newsletters and legislative alerts (including NCLD's LD News and Legislative Action Alerts). They tell you what the issues are, so that when you write, you're not just responding to what was on the nightly TV news, you've got the whole outlook of how this situation is being looked at by disability organizations all around the country.
Do you put personal experiences into your letters?
Suzanne Heath: Occasionally, if I think that there's a personal experience that ties directly into the issue, I will. I always tie what I want done to something. Sometimes it's national statistics; sometimes it's a personal story. There are enough national statistics out there, that instead of telling your child's story, you could tell the story of 5,000 children in your state, just by telling that statistic. But I do see a value in tying it to something personal, because when you are in it, you have the knowledge of how that statistic got to be that bad.
What is the most satisfying part of the advocacy aspect for you?
Suzanne Heath: Well, the task I took on was to raise my child first, which required getting him a good education and protecting his self-esteem. And in accomplishing those things for him, I learned other things. I also learned how many other people are in my exact same shoes. And how many children are in the exact same shoes. And it would just seem wrong to me not to pass that information on to other people who can use it.
You look at the drop-out statistics, and the prison statistics, and drug use and suicide, poverty, homelessness, incarceration, and you look at the corresponding numbers of those people who have learning disabilities, and the connection is incredible, and that needs to be stopped. It's kind of a background belief of mine — people can accomplish a lot if they do what they can, when they can.
How do you measure success?
Suzanne Heath: My big win is that my son is happy now. And he is proud of himself. He can do the work, and he knows he can do it.
The only real victory will be when we can go through the prison population, the homeless population, the unemployment population and not see that a huge number of those people have learning disabilities. You can also go through the Fortune 500 companies and pull out chief executives who have learning disabilities. A learning disability means you learn in a different way from the mainstream, and that's about all it means.
This Profile in Advocacy originally appeared in the LD Advocate's Guide.
