The D Word: What People Who Stutter Can Learn From the Disability Community

About the presenter: Beth Bienvenu is a former disability employment policy advisor, and currently works for the US federal government on issues related to access for people with disabilities. She has stuttered since the age of 7. She is a member of the Rockville chapter of the National Stuttering Association and has presented workshops featuring panels of PWS who have successful careers, talking about how they got there. She lives in the Washington DC area in suburban Maryland with her husband and two cats.

About the presenter: Nina G is the world's only female stuttering stand up comedian. She is also a storyteller and educator and has presented to countless audiences. Nina brings her humor to help people confront and understand social justice issues such as disability, diversity, and equity. She has appeared on the Howard Stern news channel and is part of the Comedians with Disabilities Act. She is currently performing with "Comedians with Disabilities Act," a comedy tour made up entirely of performers with different disabilities and has a Facebook page at http://www.facebook.com/ninagcomedian.

The D word: What people who stutter can learn from the disability community

by Beth Bienvenu and Nina G
from Maryland and California, USA

The disability rights movement has brought a lot of important changes in laws and attitudes toward people with disabilities, and the society in which we live today is much more welcoming and accommodating than it was in years past. This paper explores the connection between stuttering and disability and what people who stutter can learn from the disability community.

Three key disability laws have had an impact on the lives of people with disabilities:

• The Rehabilitation Act, which was passed in 1973, ensures that federally-funded agencies and organizations are accessible to all.
• The Individuals with Disabilities Education Act (IDEA), and its predecessor, the 1975 Education for All Handicapped Children Act, ensures that all public schools accepting federal funds would provide equal access to education and individual education plans for students with disabilities.
• The Americans with Disabilities Act (ADA), passed in 1990, opened up the requirements to prohibit discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.

To learn more about disability laws, see A Guide to Disability Rights Laws (2009) (http://www.ada.gov/cguide.htm). These laws impact all of society. There is still work to do to ensure full inclusion and access, but there is much more awareness and understanding, which helps enable people with disabilities to learn, work, and live full lives.

So what does this mean for people who stutter (PWS)? Do we benefit from disability laws? Should we identify as people with disabilities (PWD)? Can we benefit from the disability label and identity?

Nina and Beth, who both work in the disability and accessibility fields, have many strong opinions on the subject, and they recently sat down to discuss the topic and share their thoughts with the ISAD conference.

Beth: So Nina, we've talked about this quite a bit. Do you define yourself as a person with a disability?

Nina: Yes, I do. But I also have multiple disabilities, including learning disabilities, so disability has always been a part of my life.

Beth: Having learning disabilities and stuttering must have had a real impact on you as a kid. Did you receive accommodations in school?

Nina: I did, but not so much for stuttering. You can get extra time on tests for learning disabilities, but it's sometimes hard to get accommodations for stuttering.

Beth: Do you think that telling your teacher or professor that you stutter can help, or does it hinder?

Nina: I think definitely helps. If they understand that your disfluencies are due to something you can't control, it can help when you give presentations or when you speak in class.

Beth: And that can also help in the workplace for some people.

Nina: Definitely, but I remember when I was back in the eighth grade I got an A minus for a presentation I did, while my friend got an A for doing the same presentation with me and the teacher said that it was because I didn't speak clearly. She knew I stuttered, but it didn't help.

Beth: Wow! I wonder if teachers could get away with that today?

Nina: I don't know, but I do think overall it's good to be open about it, and if you're in college, be sure to talk to your student disability services office, since they can also help. So, do you see stuttering as a disability?

Beth: Yes, I do. But I think it also depends on the severity of the stuttering and the impact on the individual, how much it impacts the major life function of communicating. Speaking is considered a "major life activity", which is part of the definition of what a disability is under the ADA, right?

Nina: Yes, the ADA protects against discrimination based on an impairment that substantially limits one or more major life functions, such as walking, hearing, seeing, learning eating, breathing, and yes, speaking. I have a joke I like to use in my stand-up routine with the Comedians with Disabilities Act, which I perform with a guy who uses a wheelchair, a guy who is a little person, and another guy who is blind. I tell a story about people who come up to me and say, "hey, you shouldn't be in the Comedians with Disabilities Act because stuttering isn't a real disability". What I say in response is that according to the ADA, a disability is a physical or mental impairment that can potentially result in having to deal with jerks.

Beth: I love that joke, because it gets so close to the real definition (which is: "a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment") and it so closely captures the experience that we all share.

Nina: Right! What we as people who stutter have in common with the disability community is that, yeah, we may not have problems walking, talking, or getting into buildings, but we do have to deal with the attitudes from others that can hold us back from getting a job, meeting new people, speaking up in class, and so on, just because we speak differently from others. Just like the store owner who won't put in a ramp or the bully that makes fun of the kid who is deaf, we have to deal with people who mimic our speech, employers who won't give us a chance, or teachers who give us lower grades on our presentations.

Beth: And those attitudes can also cause us to hold ourselves back from doing the things we want to do, or achieving the things that we want to achieve.

Nina: Exactly.

Beth: So regardless of whether we see ourselves as having a disability, what can we learn from the disability community? What can we gain from the label of disability? Why would someone want to use the label?

Nina: Well, there are the instances when we want to be protected by the law, like if we are discriminated against in the workplace, in getting hired, in getting served in stores or restaurants, or receiving accommodations in schools. The cases won in courts for people with disabilities trickle down to benefit the rest of us, so all of the case law is really important. And that's why I think we should look at the disability community because they have been fighting for these rights for a long time.

Beth: Right! Disability rights activists have fought tirelessly for the right to education, work, and independent living. And they helped change attitudes and perceptions about people with physical, mental, and cognitive differences that we as PWS benefit from. And look at how things are changing now regarding perceptions of disability, like all of the attention on the Paralympics this year. South African athlete Oscar Pistorius running in both the Olympics and the Paralympics has done a lot to open people's eyes.

Nina: And so many other positive stories are making their way into popular culture, like the show "Push Girls" on the Sundance Channel, which features beautiful women, who happen to be wheelchair users, living and working in Los Angeles.

Beth: And also look at all of the returning military service members with prosthetic limbs. You see them all over the place, wearing them with pride, not hiding them the way previous generations did.

Nina: Exactly. People with disabilities are wearing their disability with pride, not as something to be ashamed of, but something that marks them as unique and part of the diversity of our country. As having something to offer society.

Beth: So that's why I see being a PWS as something not to be ashamed of, and we should take pride in our accomplishments, that our stuttering makes us stronger and more resilient. And that's what we have in common with the disability community, and that's why I feel it's important to see stuttering as a disability.

Nina: Right, but not everyone in the disability community would agree with that. After all, we can get into buildings without problems, we can see and hear, and our disability doesn't directly impact our health or lifespan.

Beth: True, but we can be denied promotions or jobs because of our speech, just like people with other disabilities. And we also suffer from the same misperceptions about our abilities and intellect. And that's why we need to educate people about stuttering the way disability advocates educate people about disabilities. It's not something we can control, and we can benefit from accommodations and understanding to help us fully participate in education and work. Just like people with other disabilities.

Nina: Right, we need people to understand that too. Just as with other disabilities, we're not asking for special consideration, just a level playing field.

Beth: Exactly, and I see that acceptance of other disabilities and willingness to accommodate. Working in the disability field, I see employers willing to provide ergonomic keyboards and text-to-speech software. I see people in meetings stop and listen intently when a person with quiet speech due to cerebral palsy tries to get their attention and put in her two cents.

Nina: And in my job I see some professors who give extra time on tests to students with learning disabilities, not just because they are required to by law, but because they know it's the best way to ensure that these students can fully participate in the evaluation of their knowledge.

Beth: I'm glad to know there are some who do! And I also see companies like Apple installing accessibility features into their products so people with vision disabilities can fully use them. It's not pity that motivates that behavior, but an attempt to level the playing field and ensure full participation for everyone. And it's this open-mindedness about disability and the opening of perspective and that can benefit PWS. If people can go out of their way to accommodate them, they can accommodate us. But they need to see stuttering as a disability, as something that is protected under law, and something that, with the right attitude and accommodations, doesn't limit our ability to be successful and contribute to society.

Nina: That's so true. These changes in how people approach disability can benefit us too.

Beth: So, to wrap up, do you want to say anything else about disability and pride?

Nina: Just that we need to focus on what we can be proud of. There's so much shame associated with stuttering, and I think what I've learned most from the disability community is to be proud of who you are and what you have accomplished. A big part of this is self-acceptance, which stuttering support groups like the NSA can help with, because you can be around other people who stutter who are role models. When I first started doing stand-up comedy I typed in "stuttering comedian" and Jody Fuller's name came up and I thought, how could I not be proud of that? It is amazing, and it helps to inspire me. People with disabilities often cringe at being called "inspirational", but among other PWS or PWD, we really can find inspiration in each other because there is usually someone already doing what you want to do, and they can pull you up the mountain that they already climbed up. And I think there's a lot of pride to be had in that.

Beth: It's so important to help each other. I once heard a speaker say that when someone has achieved a level of success, they need to "send the elevator back down" to help others achieve as well. One way of "sending the elevator back down" is for PWS who have been successful in their careers serve as role models of people who stutter and have a good career, to show young people that it can be done. Thanks for talking with me, Nina. I hope this helps people see disability in a different way.

Nina: And stuttering in a different way too!