Ableism, as a reminder, is the discrimination against disabled people in favour of those who are “able-bodied.” Ableism, like racism or sexism, occurs on the individual level (e.g. when we get insulted or ignored in conversation because of how we speak) as well as at the structural level (e.g. society is set up in such a way as to disadvantage us and privilege those who speak fluently). Ableism is a complex thing that takes tremendous work and many years to fight against in order to create more inclusive and welcoming societies.
However, ableism is not just “out there.” It only works because it twists inside the people it targets, in our case, people who stutter. Ableism is internalized from an early age, as ableist assumptions take root in us and we begin to believe them to be true. Assumptions like: we must speak fluently to be taken seriously; we can expect to be made fun of and discriminated against (and there is really nothing to do about it); and, a stutter is not only a problem but is my problem. How many of these things do we simply accept as truth?
These beliefs are, pardon my french, complete bullshit (poke around on our website to see our views on stuttering and ableism). I know this in my head. I know that stuttering is not really about my body and how it speaks, but about ridiculous ideas of what “normal” speech sounds like and cultural expectations regarding how fast and fluent everyone needs to be. I know that stuttering is more about society than about me.
But the thing is, no matter how disgusting and untrue ableist beliefs may be, over time they become a part of us.
How do you root out a part of yourself?
We have lived with lies about stuttering for so long that making social changes to the world “out there” may be easier than not hating ourselves and our speech--those quiet whispers that tell us the negative ways people respond to stuttering really is our fault. A central part of reframing stuttering and resisting the medical model is going to be dealing with internalized ableism and changing ourselves. This is difficult work, but I believe it is possible to overcome these lies about ourselves.
What can we do about internalized ableism? I am certainly no expert as I am still working through the process myself, but here are two ideas:
1) Education—while this ultimately isn’t the most important one on the list, it is still central. I believe it is difficult (as I mentioned in another blog post) to change ourselves in any lasting way when we still accept the medical model of stuttering: the belief that stuttering is a biological and physiological thing. We need to understand ourselves in other ways that shift the focus away from our bodies and onto social discriminations and ableist social expectations. Sadly, the overwhelming majority of stuttering literature assumes the medical model. This needs to change.
2) Community—we need communities that affirm and encourage dysfluent speech. We support self-help groups, but we also need communities that are not based in medical-models of stuttering; communities of dysfluent speakers that can encourage one another enough to imagine their stutters not as individual problems to cope with, but as important and diverse voices in the world.
Among all the things that stuttering is, it is perhaps first a break in communication. Stuttering is an interruption in the regular flow of how words are pronounced--and, just as important--how words are processed by those who are listening to us.
I had a job spraying weeds two summers ago and worked with a guy named Mike: well acquainted with everyone, a story always perched on his tongue, and three decades an employee. Parked in a dusty, stale truck one afternoon, Mike and I were waiting out a bout of rain when it happened. Near the end of my somewhat elongated sentence, he snapped to attention with a simple “huh?” I painstakingly repeated myself, trying not to stutter, and again, “what?” This happened several times. While I had been working intensely at speaking and being understood, Mike had put no effort into listening, hadn't even bothered to try. This moment was filled with the sudden and overwhelming realization that I do not, and cannot, stutter alone. Stuttering is rather accomplished between a speaker and a hearer. Or, if one wants to insist that stuttering is a breakdown of communication, it is a breakdown that occurs between the speaker and the hearer.
If this is true, then why do dysfluent speakers bear the entire load of responsibility for "breaking" communication? Why are we taught to feel ashamed when it takes a little longer to communicate? Why are we taught to loathe our speech (and very often, ourselves) because others don’t want to take a little extra time and effort to listen? If communication is an interaction between speakers and listeners, then the stutterer alone should not be marked as abnormal and disabled. There is a real sense in which listeners who “disable” our speech by refusing to take responsibility for their role in communicating are the “faulty” communicators. We communicate together; and we stutter together.
In that spray truck two summers ago, for the first time instead of feeling shame for my stutter an entirely unfamiliar response was welling up: anger at being ignored, anger at being excluded.
The realization that it takes two to stutter announced a shift in how I would understand my disability and the response of others to it. I realized that stuttering and the shame it caused me could not properly be explained by the mere physical difficulty of vocalizing certain words. Realizing that my manner of communicating is interpreted as abnormal and as a disability by others because it conflicts with a particular set of values and social structures, I came to understand that stuttering is not primarily about me speaking “wrong,” but is rather a form of ableist discrimination. This realization allowed me to reinterpret much of my previous experience, as well as my current identity, relationships, and goals. To say this was empowering would be an understatement.
Much has been written about what stutterers can do to speak more smoothly. We hear the rejoinders: talk slower, try to calm down, think about what you want to say first. These attempts to normalize speech are useless at best because they do not deal with the problem of society and ableism.
Instead of coming up with things that dysfluent speakers can do to normalize, we might do well to think of what smooth speakers can do not to shame dysfluent people.
This blog contains a list of some ideas.
First, it is considered really rude by many dysfluent people when the people they are talking to finish their sentences for them. We have almost all done this and it still needs to stop. Learning to deal with our own anxiety about completion is better than trying to make the conversation fit a given structure or form perfectly.
Along with that is the demand that non-dysfluent speakers work extra hard to be patient and not to judge dysfluent friends. If a conversation is not fitting the expected choreography, the response should not be to become angry or to stress out, that causes more emotional problems for everyone involved. Instead, patience is needed as a new conversation (not the one expected) freely appears.
Miscommunication is an inevitable factor in any conversation. People always confuse meanings, say the wrong word, produce unintended meanings or other glitches come up. Instead of nodding and pretending to always understand what your conversation partner is communicating, it is better to exhibit the trait of honesty and ask what is meant.
Moments of checking in or communications about the communication process (meta-communication or conversation repair) are crucial prosthetic discursive devices to help establish meanings that are recognized by all conversant parties.
This was a post about how to communicate when you find extra repetitions, waiting or confusion in a conversation. These lessons can be applied and thought of broadly.
"What do you mean stuttering is not an individual and biological defect?"
This question comes up a lot. After all, there are entire academic disciplines and professions devoted to understanding stuttering scientifically. The race is on, for example, to find the "stuttering gene" and to understand how the stuttering brain is different than a "normal brain" (the blog the stuttering brain is a prime example). I am not denying that stuttering can be mapped in the brain (although I am highly sceptical that a stuttering gene will ever be found), nor that it has some physiological causes. However, I do believe these are by far the least interesting and important questions we need to be asking about stuttering and communication disabilities.
We intend to explore the history of disability activism in the future on this blog, but for now, consider that disability activists and scholars have been arguing persuasively for over 40 years that what we call "disability" cannot be located only in the body. Rather, disability is a complex interaction between bodies, cultural values, architecture, and social/economic structures. To take a famous thought experiment, who would be "disabled" if every building was designed for wheelchairs instead of for those who walk upright? In such a world those who walk rather than wheel would be disadvantaged or "disabled," hunched over through hallways and hitting their heads. No one is arguing that being paralysed doesn't have biological and physiological causes. Rather, activists and scholars are insisting that "disability" goes far beyond these bodily differences, and results from the social barriers set up by a world that is not designed to meet our needs. If we can think outside of medical models for a minute, disability reveals a lot about how our society is structured: which bodies we think are important, who gets to be heard and why, how time is supposed to be used, and what our bodies are supposed to be used for.
If this work has been going on for over 40 years, why has it taken so long for discussions of stuttering to catch up? The medical and scientific conversations that frame stuttering as an individual and biological defect come from a very particular way of seeing the world. This medical view of the world is certainly useful in some circumstances (if I go for heart surgery, for example, I want to be sure that the surgeon knows what she's doing), but this is not the only, nor the best, way of viewing the world and our bodies. The scientific and medical conversations about stuttering need to be analysed from a social perspective that focuses on justice and rights, and seeks to understand how our societies are set up to value some speaking bodies and devalue, stigmatize, and pathologize others. Our world privileges able-bodiedness, and the medical/scientific view of the world only reinforces these values. This view does not help those of us who stutter; instead, it leads to impossible expectations, stigmatization, and shame. We have to believe that these social values and structures can change, and that we together can make these changes.
We stutter and we're down with it.