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.    

-Josh

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.

-Josh

"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.

-Josh

Hear me out. 

The idea of "accepting" ourselves and our stutter is one we have heard all our lives. It is a way of managing the shame and self-loathing that so-often comes with stuttering, and is the basis of many self-help groups. I struggled with accepting myself my entire life. It was continuous and difficult work since I quite literally hated myself. I cannot count how many "failed" conversations filled with stuttering, facial tics, and averted eyes ended with me walking away, repeatedly muttering "stupid Josh, stupid Josh, stupid Josh" in order to cope with extreme embarrassment and shame. If I ever did come to accept myself it was never for very long.

Acceptance is a bandage for a much larger problem.

Perhaps the very notion of accepting ourselves depends on us first admitting that there is something wrong with us and how we speak. Self-acceptance starts with a concession. Do non-stutterers have to accept themselves, fluency and all? This idea of course seems silly.  It is only because we admit that we are abnormal that we have to start picking up the pieces. While we are often told that self-acceptance is the way to deal with self-hate, I think that self-acceptance actually just puts a different coat of paint on self-loathing. There is still something rotting underneath. Perhaps this is why we struggle with accepting ourselves over and over and over again. But what if there is actually nothing wrong with you, nothing to accept, nothing to fix? 

Empowerment and acceptance are not the same thing.

-Josh