Updated: Mar 11, 2022
“I’m trying to undo the whole question of gain or loss. Stuttering just is. If it’s a gain to me, if it’s a loss to you…What do we do with that? How do we learn to accept people and accept ourselves apart from that hierarchy of progress and gains, which are inevitably linked to ideologies about what we can produce for other people and for the national economy?”
Dr. Abena Ampofoa Asare (Courtesy Photo)
It’s been almost exactly one year since I started this blog. Each time I sit down with someone to talk about his or her story, they inevitably make reference to someone else I need to connect with—a person who changed their perspective about stuttering.
Such is the case with Abena Asare. She was introduced to me through Barry Yeoman (“Self-Advocacy and a New Generation of People Who Stutter”), who had also quoted her in his Baffler essay, “Stammer Time.” Yeoman told me that Asare’s insights about how stuttering had made her a better teacher were wise and spot-on.
Asare, an author and associate professor of Africana studies and history at Stony Brook University in New York, shared her unique viewpoint about stuttering on two different StutterTalk podcasts in 2009, but a Google search didn’t reveal more recent interviews related to stuttering. I wondered, for such a dynamic voice within the New York stuttering scene, where had Asare’s online presence gone?
When I asked Asare this very question she said, “I feel like my voice and my story has been out there but perhaps not specifically in the stuttering community.” She has been busy this past decade writing two books in her professional field and expanding her family (Asare, author of the books Truth Without Reconciliation: A Human Rights History of Ghana and (When) Will The Joy Come?: Black Womxn In the Ivory Tower, is now a married mom to two young children). Additionally, she moved from Brooklyn to Long Island, and has found it difficult to find the same stuttering presence in this less-populated part of New York. Nevertheless, she has remained involved with the NYC stuttering community while watching it become a more representative entity that she applauds.
However, while she embraces stuttering as a positive part of her identity, she offered surprising perspectives on why she doesn’t always resonate with the language of “stuttering gain” (the advantages that come with stuttering; Constantino, 2016). During our conversation, Asare—a gregarious and passionate speaker—wondered whether this search to tally the social value of stuttering really undoes the ableist notion that an individual’s value is tied to their achievements. She also pointed out that racial, ethnic and gender inequities within the stuttering community have created and perpetuated narrow perspectives on the stuttering experience.
Much more on this to come. Let’s back up and start at the beginning.
Asare was born in Ghana to parents who were both pastors in the Methodist Church. She also has two older brothers and a younger sister, none of whom stutter. Asare has been stuttering since she was a toddler, when she first learned to speak. At that time, her family employed a housekeeper who also stuttered. Her parents explained to her that she most likely learned to stutter by imitating the housekeeper’s speech. She commented, “It never seemed to make much sense. It seemed like if I had started [imitating stuttering], I would be able to stop it.”
In the early 1980’s, when Asare was four-years-old, her family moved to a small, rural town in Massachusetts. Her parents helped the tiny Methodist church there grow from just a few members into a booming congregation. She described her parents as having a “very obvious light” that attracted new churchgoers and also helped her family gain acceptance in an overwhelmingly white community. Though this acceptance didn’t come without restrictions: “We were welcomed and accepted on very particular terms. We were often treated in a way that let us know our place.”
Asare detailed memories from her elementary school days, such as teachers asking how her family had traveled to the US from Africa (“Was it by boat or plane?”) then seeming incredulous that they could have traveled by plane. Had they lived in “houses or trees,” and did they wear “regular” clothing in Ghana? These questions were asked of a young Asare publicly in front of other students, demonstrating racial bias and misperceptions about African culture that seemed absurd.
Yet her parents weren’t taken aback by these confounding attitudes. “My mom and dad had educated themselves about US history and race, and I can remember as a child they would make us watch Eyes on the Prize and explain, ‘This is your history now; you are a Black person living in the USA.’” Her parents understood how important it was to prepare Asare and her siblings for the racism they would encounter in this new country, a racism she recalled being aware of even as a child.
The simple fact that she and her Ghanaian family existed in this little American town was attention-getting. As the pastor’s family, everyone knew who they were and they were all under a spotlight. Never mind that Asare also stuttered—not that it stopped her! She laughed out loud frequently during our interview, musing at the idea that she might have tried to conceal her speech. “My personality was one in which I was going to talk and be outspoken,” she said. “There was no world in which I wasn’t going to talk!”
It was by no means easy, though, standing out all the time. Stuttering added to her sense of being singular and it made her conscious of how she was being perceived. A competitive, bright, and perfectionistic child, Asare described her stuttering as a curse, one that made her feel “ashamed.” She wished she didn’t have to read scripture at church and that she could skip out on the Christmas play. When she spoke, she felt a pressure to be the smartest person in the room, to override what people might automatically think when they looked at her or heard her stutter. “I needed to stake that ground. My race, my gender, my stuttering—I had to create a space for me to shine.”
Asare didn’t talk about stuttering with her family, but she kept a personal journal for all of her wishes and hopes. She also found solace and comfort in her daily prayers to God. Asare had a deeply personal relationship to her faith and asked if God might lift the curse of her stuttering. She recited her former prayer to me: “Dear God, is this the year when I’m finally going to overcome stuttering? It’s time for the miracle, please help me!” She didn’t hold out any expectations, but still hoped she might wake up one day to find that her stuttering had disappeared.
In spite of her fervent wishes, stuttering persisted. She never sought speech therapy, but she learned a few tricks to get through hard stuttering moments, including word-switching, tapping her fingers, and using a different cadence or rhythm when speaking. Asare also felt that if she could manage her emotions she would be more fluent, so she tried deep breathing in an attempt to calm any feelings of anxiety. Additionally, she practiced her speech at home, reciting out loud. She would marvel at how well she did, speaking alone in her room. Then when asked to speak in front of a group she would inevitably stutter, and the feelings of shame and disappointment would come flooding back. She just wasn’t able to show off the fluency she could achieve on her own.
Asare was careful to point out that she never went to an overwhelmingly sad place because of stuttering. She played piano and soccer, made friends, excelled in all of her academics, and believed in her worth regardless of stuttering. Eventually, she attended boarding school and then Brown University, where she studied English and Africana Studies.
She summarized her feelings about stuttering during these young adult years: “I had a great experience and I still stuttered the whole time. It seemed like everybody in my world knew that I stuttered because I stuttered a lot, but I never talked about it. I don’t think I had the language because it was so wrapped in shame for me, and when people would bring it up I would see it as an affront or an insult.” Asare explained further that she saw stuttering as an “ugly thing,” like an unsightly birthmark, so why speak about it?
After graduating from Brown, Asare got a job at Harvard as a research assistant. She was finally her own person, with a car and a steady income. Being an independent adult meant that she could choose to seek help for stuttering, so she did an online search and discovered a nearby stuttering support group. This option felt accessible. It was a low-cost, drop-in alternative to individual speech therapy. She attended her first group in Cambridge and “loved” it. The group introduced her to a world where she could finally talk openly about stuttering.
Not long after this experience, she applied and was accepted to a PhD program at NYU. Before departing Cambridge for grad school, she asked the Boston-area support group for help finding a new group in New York City and was connected with a group led by AIS (American Institute for Stuttering). While continuing her self-help journey with AIS in New York, she learned about self-acceptance and the iceberg analogy (Sheehan, 1970). Asare was also exposed to fluency techniques such as gentle onsets, voluntary stuttering, and pull-outs. She and other group members would get together to practice these techniques during the week. Asare had discovered a new perspective on stuttering, one that involved community and was free from shame.
Asare described her sudden immersion in the stuttering scene as an eye-opening time, but it was sometimes an isolating experience. She was one of the only Black people in the group, and also one of the only women. It was a predominately white, male community, so she once again stood out from the others. She observed that a degree of assimilation was necessary in order to build the deep friendships that seemed to be one of the best parts of the NYC stuttering community. “There were a few people of color in the scene when I was there,” she remembered, “but it was much like my childhood in that they would be accepted or embraced based on how well they fit into mainstream culture, which was a largely white, middle, upper-class, and heavily male culture. It didn’t always sit right with me. There was a way that people of color were dealt with to make the group comfortable, and this was not a group that would ever talk about racism, or exclusion, or gender dynamics. It was just about stuttering.”
This was problematic for bringing in potential newcomers. Race, culture, class, and gender needed to be addressed because a large swath of the stuttering population was being left out of the conversation. She also noted that the few women in the group often faced sexual advancements from the men, creating an environment that didn’t always help foster a safe and welcoming support-group space for women and/or LGBTQ folks.
Asare participated in the group as she was able, while also working to complete a time-consuming PhD program. She was disappointed in the barriers that pervaded even the stuttering community, but appreciated the relationships and viewpoints she had gained. After finishing her degree she moved to Long Island, where she launched her career and family. Meanwhile, she continued to stay in touch with friends in the city, and attended stuttering support groups and conferences occasionally when she visited.
Over the next decade, she watched some of these friends take strides to change the landscape of the stuttering community. She spoke admiringly of one individual in particular: Roisin McManus, a nurse practitioner and co-founder of the NYC Stutters Conference, who has volunteered with StutterTalk, the National Stuttering Association (NSA), and FRIENDS (where she currently serves on the board). Asare credits McManus for pushing toward greater transparency about unequal gender roles within the stuttering community, as well as leading the charge for recruiting more representative, inclusive and diverse voices into the fold, creating a space where everyone can thrive.
Asare was also aware that the language surrounding stuttering was shifting from a reductive take on stuttering (medical model of disability) to the more affirming social perspective, whereby disability is rooted in the limitations and stigma imposed by society. As someone whose professional work is focused on advocating for justice issues, particularly for people existing on the margins, this change marked a compelling step forward. Asare saw this new disability framework as being intertwined with issues of equality. Carving out an equal space in society for people with disabilities meant “helping people to become more free without the need to become more fluent.” Stuttering could exist, and just be, without any reductive qualifiers attached.
At the same time, there was also an idea put forth that stuttering could be viewed advantageously, from a perspective of “stuttering gain” (Constantino, 2016). People who stutter undoubtedly experienced hardships related to stuttering, but also gained relationships, conversations, and insights that would not have been possible without stuttering.
While Asare acknowledged this view as being just as valid as the reductive one, she felt differently. “I love [Constantino’s] work about gain, but that’s not how I frame it when I think about disability because I’m trying to undo the whole question of gain or loss. Stuttering just is. If it’s a gain to me, if it’s a loss to you…What do we do with that? How do we learn to accept people and accept ourselves apart from that hierarchy of progress and gains, which are inevitably linked to ideologies about what we can produce for other people and for the national economy?”
Our conversation took a surprising turn here. Asare became visibly impassioned when talking about how regarding human differences neutrally preserves humanity, whereas placing positive or negative values on our self-traits dehumanizes. She asserted that we need to be able to see people apart from what they contribute or produce. By considering our own characteristics neutrally, we are modeling the message that humans are all on the same level ground and this in turn furthers both justice and equality.
She went on to say that ableism (defined as discrimination in favor of able-bodied people) and ableist institutions have a history of valuing differences and diversity only insofar as they benefit or serve said institution, either economically or image-wise. This does little to address the root causes of continued ableism and racism, and also forces an individual to consider their disability, race or difference in terms of metrics of gain rather than recognizing that aspects of self-identity can simply exist without the need to be assigned positive or negative value.
I’ll admit that her views blew me away. I had assumed that when Barry Yeoman had referred to how stuttering had made her a better teacher, it was under the umbrella of the stuttering-gain narrative. Now I understood that it was because she was modeling diversity for her students; diversity of thought, race, speech, culture, and values, without posturing that any of these qualities were better than theirs. She was modeling true equality. “Every semester I have students who tell me, ‘Thank you for stuttering and being open about it.’ I’m glad that helps them, but I don’t see it as any better than if I were fluent. This is just what I’ve been given. Let me play out the hand that I’ve been given, fully, the best that I can. How can what I’m doing help them be more free to accept the hand that they’ve been given?”
She continued, “That’s what the disability rights movement has taught me: We need to see people apart from what they can produce. Apart from their value within this particular economic system. We have all accepted this belief system and narrative that our purpose as human beings is to be cogs of production and that we are worth only what we produce, and we are expecting to be loved because of that. So I believe it really starts with self and working on how to see yourself apart from your achievements. Isn’t this the premise of ableism, that our worth as people in the world is based on the fact that we can do something, even if that something is stuttering? We are still trying to tie our worth into something we are doing, and all of that has to change.”
As I’m writing this, I don’t know how to expand upon this idea any better than Asare herself. It is vulnerable to share, but I cried after our interview just thinking about how freeing her message was—to recognize that there is no quality of self that is inherently better or worse than any other person’s. I felt a self-acceptance and connection to humanity considering her words.
So what now?
Asare had some final words of wisdom that generally aligned with other interviews I have done for this blog: find other people who stutter, a self-help group, or a space where you can stutter freely and extend grace to yourself and others. Let your children, family and friends see you and hear you exactly as you are. Teach them that authenticity is the greatest gift we can bestow on the world. It will help other people know they’re not alone in their struggles.
*For more on Abena Asare, visit her website at: www.abenaasare.net
*This article was co-published in partnership with Friends: The National Association of Young People Who Stutter on 3/11/22 and also appears on their website at: https://www.friendswhostutter.org/abena-asare-on-how-a-stutter-neutral-perspective-disrupts-ableism-and-furthers-equality/