About the author: Elizabeth Wislar is a person who stutters and a teacher of students with disabilities. She lives in Athens, GA USA with her husband and daughter. She loves to draw, write, run, cook and read. She is a co-leader for the Athens NSA chapter and writes a blog about being a teacher who stutters.

Stuttering is one of my essential qualities. It is as important to me as my gender or identity as a Chicagoan (though I no longer live there). I don’t remember a time when stuttering wasn’t present in my life. It has followed me everywhere, sometimes as an annoyance and more recently as a friend. It permeates every aspect of my life. I would venture to say that stuttering is something that personally defines me.

At conferences, in support group meetings, and on stuttering websites I often hear people declare that “stuttering doesn’t define” them.  Many people feel it is important that the fluent world look beyond their stuttering and see the person underneath – and I agree. To be defined only by our disabilities can be extremely limiting, however, is it really possible to identify as a person who stutters and not have it be a thing that defines you? What if we think of the word ‘define’ to mean something other than limiting? We need to look past the idea that definitions set boundaries. Could we think of ‘defining’ as giving us a framework with which to see the world and have the world understand us? Definitions help us better understand and build meaning in our lives.

Perhaps it would be helpful to think of identity in terms of not just our personal definitions but also our collective definition. After all, people who stutter do have many shared experiences.  A collective definition or collective identity is key in forming a unified group. This group is responsible for shaping what the world knows about the people who form it. People will know us through our collective identity as people who stutter. We are our own best representatives. When we act in unity we can accomplish our goals more effectively. This is key to maintaining our sense of groundedness in the face of discrimination.

What do we want to do with our collective social action? Foremost, we need more education and social change. We can do this through writing, art, Public Service Announcements, podcasts, and insisting our voices be heard and our wants be represented through radio, television and social media. We need to find fluent allies to join the cause and to work together with us. We need to reach out to Speech Language Pathologists (SLPs) and training programs and bring them information. We need to find other people who stutter in the most remote parts of the world and let them know they are part of a large and wonderful group. We need to give them the support they need to help them find their voices, be that through empowerment, therapy, self-help and support groups, or some other means. We need to make sure everyone has equal opportunities for education and employment and fair treatment under the law. By building reciprocal bridges to other disenfranchised communities and sharing what we know and have learned, we can achieve our collective goals.

Much of the work of forming a collective group is already done. There are many organizations of people who stutter worldwide – even an international association. Meetings of people who stutter are held every day. It is through these organizations, associations and small meetings that we can begin to work collectively toward a world that better understands our experience and helps us move forward.

One place to start is at the local level. Local support group meetings can be a great place to mobilize interested individuals. Consider adding a social action event to each meeting agenda. This could be as simple as simple as a few volunteers passing out stuttering awareness information at a street festival. Or it could be more involved, like pitching a story to a well known podcast or writing an article for a popular magazine. Many conference workshops and presentations begin by a few interested individuals coming together. These actions will help us show the world what it means to stutter.

Because stuttering is such an important part of my life, I see it as my duty to help the world understand stuttering and the struggles and joys that come from being a person who stutters. I fear that perpetuating the idea that we shouldn’t let stuttering define us is keeping us isolated, and hinders our ability to share a collective experience. It is this collective identity that will help us create societies that understand stuttering.