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I No Longer Dream of Being Normal

10/30/2018

3 Comments

 
PictureSource: NYC Stutters

On Sunday, October 21st NYC Stutters held its annual one-day conference exclusively for people who stutter.  


As I spoke with other attendees at the end of the day, I began to understand more deeply the discomfort I commonly feel in stuttering spaces and how this relates to the larger disconnect between stuttering communities and the world of disability justice. Several folks, responding to my comments as part of the intersectionality roundtable, described their perspective that stuttering is the only thing keeping them from fulfilling societal expectations of normalcy.

These comments have stuck with me since the conference, because they have helped to explain for me why so many people I’ve met through the self-help model of stuttering community have a seemingly singular focus on striving for the privileged status of fluency, a goal I’ve never quite understood. For folks who hold privileged identities in all or most other aspects of their lives--people who are thin white cisgender straight men, financially stable, college educated, speak English as a first language, documented citizens, non-immigrants, Christian, and are not otherwise disabled (no matter their personal opinion on labelling stuttering as a disability)--stuttering is the one thing separating them from the normative ideal we’re told to pursue. This makes more sense to me now.

When I describe myself as a professional hot mess, I’m similarly talking about all the ways in which privileged status is categorically out of reach for me. As a dysfluent, Autistic, chronically ill, queer & trans wheelchair user, there are just too many ways in which I fail to appear and behave in the manner our society prescribes. I also know that as a white person, I’m given many more opportunities to be taken seriously than people of color ever are. And this is why I talk about shifting our perspective toward critique of the standards themselves instead of critique of those who fail and are failed by them.

As I have grappled with acceptance of and pride in each of my identities I’ve had to let go of concern about the impact to my image in the view of others, much in the way I imagine more privileged stutterers do when they speak of overcoming their dysfluency. I am certainly not immune to the pressures toward compliance and assimilation, it’s just that after so many years of hating myself for trying and failing to fit in, it seems more productive to expand our views on who we take seriously as a society, who we care about and see as experts of their own experience, than it is to continue to devalue and harm those who don’t meet such narrow definitions of normalcy.

And this is where I find the missing link between stuttering focused communities and the larger world of disability justice. So much of what I’ve observed in stuttering spaces is influenced by the dream of assimilation. It’s what underlies most (if not all) of stuttering-focused speech pathology, it’s what pushes stutterers to pursue yet another form of treatment. It’s even evident in the movement toward acceptance, in the campaigns for people to accept that stuttering is a permanent part of their lives but which do not call for any meaningful societal change. It’s behind the Even Though statements I’ve come to expect from privileged stutterers: “even though I stutter, I’m intelligent” or, “even though I stutter, I’m good at my job”. These are statements that assert all the ways a speaker fits in, mitigating the one in which they don’t.

But what about stutterers who are also intellectually disabled, or who can’t work because of discrimination or health, or who stick out in more ways than they fit in? Disability justice holds that our individual liberation is bound up with that of others, that we cannot successfully campaign against the way we’re treated because of our speech if we’re not simultaneously fighting against every type of oppression, including ableism in all its forms. It seems like some folks see the goal of awareness campaigns and public education as expanding society’s definition of normal to include dysfluent as well as fluent speakers. But what do we achieve in granting normalcy to only the most privileged among us?

A question was raised at the end of the day - what can we do that will positively impact the majority of stutterers who won’t ever attend a conference or access a self help group? My mind goes immediately to civil rights work, to testing and clarifying the rights afforded to stutterers by existing civil rights legislation like the ADA and IDEA, and to increasing the visibility of stutterers in cross-disability campaigns for access, justice, and change. But none of these things are possible without learning and adopting a disability justice framework.
While I am quick to critique them, I don’t want to discount the potential power of self help spaces for stutterers. When I first began to examine my relationship with my speech and develop my dysfluent identity, attending a local group was a critical resource. I’ve forged powerful and long lasting friendships through such groups. It’s just, once I’d accepted my dysfluency, I wanted to move on to larger scale discussions. It takes some folks longer to reach acceptance, and for that I’m glad these spaces continue to exist. I’m glad that at my first local meeting, I had role models in those who had already found answers to the questions I was asking. My dream is that we as a community can have groups and conferences that exist alongside advocacy work.

I absolutely love this conference, and as much as it can be a politically exhausting space as a multiply disabled person, I love the discussions that start in these rooms. This event is unique in many ways: New York City has the most diverse group of stutterers in the nation, the event being closed to fluent SLPs and family members allows us space to be vulnerable and to define ourselves, and we’re also able to observe and interrogate the ways in which the imposed standards of fluency have influenced our work and, critically, our perceptions of ourselves. 
​ 

I am absolutely thrilled by the creative potential I witnessed on Sunday, and I know that as long as this amazing space continues to exist, this work will continue to develop.

-Erin

3 Comments
Pamela Mertz link
10/30/2018 07:06:07 pm

I am so impressed and encouraged by your boldness and willingness to speak your truth, even though it clearly runs the risk of being controversial. I was supposed to be there Sunday too. I had purchased my registration and a round trip train ticket to NYC. I was greatly looking forward to the conversations that flow when people feel free from judgment and know they can say what they wish without having to censor our thoughts in case we accidentally offend a fluent speaker. I happen to believe and agree that it’s perfectly ok for there to be sacred spaces that are exclusive to people who stutter.

People in marginalized groups absolutely need and deserve space where we don’t feel like guinea pigs and that our primary goal is to educate those who don’t totally understand stuttering so they can “treat” us in the future.

There are tons of fluent SLPs who “get stuttering” because they have made it a priority to meet, interact with and appreciate those of us who stutter. One class on stuttering in a two year graduate studies program will never be enough to adequately prepare clinicians and therapists of the future to really help people who stutter.

Advocacy efforts, fluency enhancing strategies and exclusive spaces for PWS to talk and share really can coexist in our small corner of the world. Fluent therapists and fluent people who Cate about those who stutter shouldn’t feel threatened when PWS want to gather and share experiences and speak honestly about our fears and the stigma created by the ableist majority.

Kudos Erin for putting voice to the positivity gained by PWS connecting with other people who stutter, exclusively and privately. We should all be working together and listening to what can be and is gained when these rich conversations happen. There’s no sides - were really all on the same team. Challenges to the status quo are good when it’s done in a mindful, respectful way.

Keep sharing your perspectives.

Pam

Reply
D
6/21/2019 12:30:45 pm

"So much of what I’ve observed in stuttering spaces is influenced by the dream of assimilation."

Many people who stutter do not want to identify as a PWS because the stuttering voice is discriminated against by a society that values fluency. This is where stuttering self-help groups do most of their good work. Stuttering spaces tend to help PWS see their stuttering voices as intrinsically valuable, deserving of respect and dignity in spite of society's flawed measurement system for speech.

While PWS are used to sharing various things in common with their respective communities (home, school, neighborhood), they are almost always isolated in their experience with stuttering. The stuttering space flips this on its head. In the stuttering space, everyone shares the stuttering experience though every other experience each person brings to the space may differ.

Thus, most conversations in these spaces are deeply rooted in stuttering, not only because everyone present holds strong feelings about their shared stuttering experience, but because it may be the only shared experience (or at least primary experience) of everyone in the room.

Whatever insights we come upon in these spaces are almost always in the highly specific context of stuttering. Things like acceptance, loving one's self, and pointing out the flaws in society's values, are all in the context of stuttering and speech. One might hope that we would generalize our insights about acceptance and advocacy to other disabilities (or conditions, if one prefers that label), but--given the lack of such dialogue in the stuttering space--this may not be the case.

The strength of so many stuttering spaces is Listening. My hope is that we can use this gift of Listening that stuttering has given us to open our conversations to include the experiences among us that aren't shared by everyone. We are quick to recognize the humanity in the stranger across from us if that stranger also stutters. Now imagine that stranger tells you of their experience in another area in which their identity is marginalized by society, whether it be race, gender, sexual orientation, religion, etc. Perhaps we would also come to see the humanity in these identities, recognizing their intrinsic value and treat them with respect and dignity, and become better advocated for one another.

Reply
lilherbie link
12/16/2019 04:15:19 am

This is really helpful thanks alot for sharing dude..



<a href="http://www.lilherbie.com”>Stuttering Programs</a>

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