Make Room For The Stuttering

Who Gets To Make The Choice?

Posted on: June 14, 2011

I have never written about how I feel about stuttering being a disability. I have been asked about it and I have talked about it, both with those who stutter and those who don’t.  I know disability can be a very contentious subject, because some feel strongly that stuttering is a disability and others feel if it doesn’t limit their life, then it’s not.

I believe that my stuttering is not a disability (there was a time it was). It does not substantially limit my ability to speak or communicate today, as defined by the American’s With Disability Act  of 1990 (ADA), which was amended in 2008.

These days, I speak and communicate very effectively, even on the days when I stutter a lot. There was a time when I did not. I was so afraid of stuttering publicly and being judged, that I often opted out of speaking situations, or avoided. That fear was very disabling to me. I felt invisible.

The ADA definition of disability also means whether a person has a record of an impairment or is “regarded as having an impairment”, whether or not the impairment impedes a major life activity. Which in the case of stuttering, would be speaking and communication.

It’s this part that I want to speak to – being regarded as having a disability. I recently had a conversation with my supervisor about upcoming changes in my job assignment. My current position has been abolished effective June 30, and I have been laid off. I am hopeful that another position will be available for me to remain within the same organization.

My supervisor mentioned that the grant funding has changed direction. The major initiative of our grant will focus on ensuring access and equity of services and programs to special needs populations. This will include not only groups with disabilities, but also economically under-served groups.

My boss mentioned that I would be perfect for this position because of my disability. I was offended by how he said this. I don’t consider myself disabled, and am bothered that my boss obviously does. This is not the first reference he has made about stuttering as a disability.

Last year, when he did my annual evaluation and went over it with me, he said, “aren’t you proud of me that I didn’t use the term “disability” once in your evaluation?” And the year before that, after my first public speaking event at school, he commented, “you didn’t have to try to climb the mountain and ride your bicycle up it also all in the same night.”

When I had asked him what he had meant by that, he further explained, “if you knew you were going to butcher the kid’s names, why didn’t you ask someone else to read the names for you?” I remember writing about this before, and also remember how angry I felt by what he said.

There is a good chance I may get a position serving special populations (which I have been doing indirectly for a long time anyway). I will need to be an even louder advocate for those who can’t always advocate for themselves. I have been thinking a lot about where I stand on my stuttering being a disability.

Because I am known to stutter, therefore, I am obviously “regarded as” a stutterer, which fits the definition of disability under the ADA. But I don’t consider myself disabled. And my boss’s perception of me having a disability, while certainly not bad, somehow doesn’t sit right with me.

A friend of mine said that I should label my stuttering as a disability if I plan to move along with my small business. That it will net me more opportunities, being able to use the term “minority owned” business. Like getting two for the price of one. Being a woman and disabled would possibly steer more business my way.

I definitely don’t like the idea of “using the disability card.” But I know some people do, to move forward in life.

What do you think of this? Whose choice should it be to consider one’s stuttering a disability?

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20 Responses to "Who Gets To Make The Choice?"

Pam – You know this is a subject that I’ve spent a lot of time thinking about. It’s interesting that you bring up the ‘regarded as’ by others concept and how that impacts their perceptions and how they great us. I think this is one area in which, legally, PWS can have grounds for discrimination cases. But otherwise, the disability label is murky because it’s different for each of us — mentally, emotionally and speech-wise. For some of us it’s disabling because we haven’t come to terms with it. For others it may not be. In the case of employment discrimination or getting a job accommodation, it may be necessary to fall back on the label. But in the case of getting special privileges or benefits, it may not be. I haven’t used my speech to gain anything, but I do use it as a way to show my colleagues and constituents that I do have an understanding of what disability is, based on my experience with my stuttering. I have not faced the challenges some of them have, but I have felt the effects of having a funcitonal limitation.

Good luck with getting another position in your organization – they’d be crazy to lose you! And also with your business!

Hey Beth, yeah, I know you have spent lots of time thinking about this.I haven’t really, until my boss brought it up again, in this manner.
I agree that legally, discrimination is possible under ADA. After all, that is what I argued myself 5 years ago. I feel I was discriminated against because I stutter. The employer at that time thought I couldn’t be effective because of stuttering.
These days, I do not feel disabled – but if someone treated me differently or denied me something just because I stutter, I would stand up for myself and insist that be corrected.
But I think there is a difference, right? Considering oneself disabled vs being discriminated against, in my opinion, are two different things.
Its tricky – I guess. I want to advocate for stuttering, but not be regarded by “someone else” as being less “abled” than anybody else.
Pam

See my post below under Lisa’s post. I think this is my approach to disability this day. I’ve absorbed the “disability pride” that I’ve been seeing in my colleagues and friends.

HI Pam, Boy this one is a good one. There was a time I to thought stuttering was a disability. Years ago when joinning the work force I was always asked to fill out a form saying I was disable. It seem the company I work for got extra tax break for me. Well, after a few years I stop filling those out. Back then I still consider myself disable, but that was me thinking I was. I do not think that today. I do believe some employers do consider anything different in a person is a disability. Have you told your supervisior that you do not consider stuttering a disability? As for you using stuttering to further your small bussiness, I say go for it. Take advantage of it and put it to good use.

Nice column, Pam. Stuttering was definitely a disability for me, and it was amazing what that small disability did to my spirit. As Beth commented, it helped me to understand others better. I’ll be thinking of you in your job search. Hope you can stay in the same place if that’s what you want.

I’m sure I’ve mentioned this to you before but, I was actually forced to declare myself “disabled” in college in order to pass a public speaking class. Naturally, I required more time to get out the required information and my professor would only give it to me if I was classified disabled. It was a really difficult thing for me to do because I’ve never thought of myself disabled or handicapped. My father is disabled – he’s lost both legs to diabetes. I simply require a little added patience in return for my flair.

Yep, you’ve told me that. I find it hard to digest that someone else can “require” that someone declare themselves as having a disability. Thus, the reason why in my case, it really bothers me that my boss thinks that I have a disability.
I love the way you put that – just needing more patience in return for your flair. That you indeed have – flair! Thanks for sharing this – others will appreciate the different perspectives.

That’s why the disability community is trying to take away the stigma from the word and the idea of having a disability. When you take away the stigma, you take away the shame, just as we’re trying to do with stuttering. We say, it’s OK to stutter, just as it’s OK to use a wheelchair or be deaf or have low vision or have Autism. The term “disability” is then a word that is used to ensure that you have full access. You use the word then only to open yourself up to receiving services that have been denied to you by mainstream society — such as extra time in speeches or tests, accessible parking, Braille or large print menus or programs, captioned videos and movies, accessible technology, curb cuts, etc. The word loses its negativity and becomes something that helps level the playing field and ensure access and inclusion.

Good to hear all these voices! People who stutter aren’t disabled, their listeners are. I recently gave a TEDTalk on this http://bit.ly/kPwFpE. Please check it out!

I’m in PR, so communication is crucial. I stutter “horribly,” as I once overheard one of my listeners describe HIS experience of talking to me. Luckily communication is more than voice.

That said, the fact is you get to choose only how YOU view your stuttering. Everyone else gets to make their own decision. My idea is to educate them so they become enlightened. One listener at a time.

Sharon, thanks for commenting. A friend sent me the link to your TED speech and I was so impressed. Everybody needs to see this, stuttering or not. I work as a high school career counselor, and I constantly stress that communication is SO much more than voice. It encompasses every tool we use to connect with our listeners.
Thanks for sharing your view. I know my boss gets to choose his perception of me. I guess I just need to get an even thicker skin, like yours as seen in your talk./
Very motivating and impressive.
Glad you also checked out the women’s voices – if you haven’t listened to any of the podcasts, please do so. And perhaps, consider joining me as a guest on the show, so more people who stutter can hear the rest of your story, esp how you got in communications.
Thanks again!
~Pam

Sharon – I saw your TEDTalk as well! Thgought it was great. Someone posted it on Facebook — don’t recall who — so it’s making the rounds. Do you live in Lansing? I’m orignally from Haslett, so I was thrilled to see not only a TEDTalk on stuttering but one from my hometown!

Pam, you are so talented. Every article you write – so insightful and eloquent. I believe that every organization should fight to keep you. But yes, some listeners have a disability. For example, my stepfather is visiting with us now (with my mother) . Even though I stutter unfrequently and mildly now, every time I have even smallest block, his gaze shifts, he avoids looking at me. Why? I speak fluently almost all the time, but once in a while I still block – why this bothers him so much? he may not be aware of it, but he looks uncomfortable and he avoids eye contact every time I block. This is just so silly. Thank you so much for educating people, thank you for being you.
I can’t wait to meet you at Forth Worth!!!!
Anna

Hi, Anna,
I’m glad that you asked this question. I just started doing some research because I have an acquaintance who stutters and I don’t feel I know him well enough to directly ask some of these questions. As we spend more time together I certainly hope to be able to. Regarding the looking away, I know I just did that a few times in a conversation tonight. And in my case it was not discomfort — it was from the (most probably mistaken) idea that I was somehow “taking off the pressure” to finish the word, giving him time and space to speak without feeling like I was just sitting there impatiently waiting for him to finish. Or something like that — it was not really something I thought about deeply, just seemed like the right thing to do at the time. So, while I can’t speak for your stepfather, I can suggest the possibility that may not necessarily be discomfort, and may be a (misguided?) attempt to help.

Great discussion. i think the problem lies in the personal interpretation of the word “disability”. Many people responding to this thread are throwing the word around as a weapon to wound, calling listeners “disabled”, when infact, listeners are just uncomfortable. The meaning behind it is very clear, the word is seen as durogatory.— Listen to a PWS, their speech is impaired, it is disabled. Does this mean less than?? of course not.

Amey,
yes, we certainly shoudl define what disability means. I use the term disability to indicate limitation. If you cannot do certain things because of your stuttering, it is disabling you. The question of course to what extent. When I was afraid to pick up the phone or asnwer my name – I would consider myself disabled. Now when stuttering becomes so mild, it doesn’t limit my abilities – I can do anything, I can communicate – I don’t see myself disabled. But for some people even very unfrequent blocking makes them uncomfortable. Why? It doesn’t interfere with clarity of the message. It is just something they learned – that stuttering is something to feel uncomfortable about. That any disruption of the flow is speech impediment. This limits their ability to listen and communicate – so why not call it listening disability? It is thanks to such people as Pam, people with listening disability get educated. They slowly learn that communication can be very effective even if you stutter. Then they stop viewing any degree of stuttering a disability, because they start to see that many people are not limited in any way by their stuttering. There was time when there were strict standards of beauty. Now we know that women can be beautiful in many ways. I wish some day we learn the same about speaking.
Anna

[...] Media Coverage Who Gets To Make The Choice? [...]

Sorry I’m late to the party on this one. Another great post Pam!

First off I want to say what a fantastic presentation that TED Talk was. Well done. I might ask my boss to watch it.

Second, I have a fair bit to say on the subject of stuttering as a disability. A couple of jobs ago, when self-identification first came in here, I was strongly encouraged to check the disabled box. I wasn’t forced but my supervisor and I discussed it many times over about 18 months. I did eventually comply because they really needed the stat and stuttering was on the list. That was the boss’ side. My side was “well, yeah but I’m not disabled. I can do everything you can do (except talk fast).”

When I switched jobs I still checked the box because according to their definition I am disabled. I have been passed over and not hired as a direct result of how I talk. I am perceived by society as “different”. I still didn’t feel disabled, I felt strong and happy.

Then I realized feeling strong and happy is not the opposite of feeling disabled. I am different, a part of me functions outside the normal range. Sometimes there will be jerks who assume I’m slow, weak or crazy. The legislation isn’t to label me it’s to limit the jerks. (I’m actually average, strong and sane) Someday people will accept each other as equals despite any differences, until then we need a ref.

I remain confused. I really dislike the label but I acknowledge the unfortunate necessity.

Fantastic post Pam.

Really great insights Heather. Thanks for sharing. I never knew that you had “that talk” with your supervisor. I can understand why you chose to comply, but I don’t like the idea of you, or me, being part of a “stat” needed by an employer to fulfill a quota.
But I am also smart and realistic, as are you. I strongly dislike the label of “disability”, but now see, from some of the great feedback here, that there was/is a reason such protection exists. I don’t feel disabled, but do know at times I talk differently than most people.
It is definitely a good conversation to have – as we have many perspectives. Do you have something similiar to our ADA law?
And thanks for contributing – love the line “to limit the jerks”. I wish I had the guts to suggest my boss read this!

Very very late indeed (sorry!) and I’m still not entirely sure what to say here, I just figured I should sit down and comment before the delay got really ridiculous.

First, “disabled” is a label which I think a person has to decide whether to use for themselves, and I know from experience how incredibly terrifying and painful it can be to decide that it’s actually a good fit. (I had an epiphany that I was omg disabled!! a few years ago, spent the two weeks after crying at random intervals and took about nine months to actually be comfortable identifying that way.) Labelling people who don’t identify that way as disabled is really, really not cool.

That said, I often get frustrated with the dialogue around disability in the stuttering community and indeed it’s actually one of the big reasons I don’t feel welcome, don’t really participate in the community at all and only sporadically read blogs or comment. I’m disabled – I consider my stuttering to be a disability, yes, but I’m also autistic and consider that to be one as well. I also engage in the wider disability community, have a lot of friends in that and consider my identity as disabled very important to me. And the wider disability rights community is heavily invested in lessening the stigma that’s associated with disability and shifting the focus from lack of ability to lack of access. The definition of disability that’s generally in use by disability rights activists is the social model, in which disability is caused by society – a person may have some impairment (such as, well, stuttering) but that only becomes a disability because society refuses to accommodate it.

And then I come to the stuttering community and generally see a lot of people talking about how they’re not disabled because they’re not miserable and don’t hate their stutter (so I am and do? So someone who’s blind or a wheelchair user – two things which are generally considered disability – has to be miserable and hate their disability?), they accept their stutter and are okay with it (so I’m not? etc.) and making disability all about your personal attitudes when I think those have nothing to do with the issue at all. What it’s about is that, you know, it doesn’t matter how at peace I am with stuttering, I’m disabled because there’s all sorts of discrimination and stereotypes and refusing to make accommodations for our needs and other bullshit happening to people who stutter. I try to be understanding that this view of disability is a pretty radical shift from what you’re used to, but this view of disability is also the one I’m using for myself and seeing so many people take an identity I consider positive, powerful, political and very important to me and turn it into something negative that’s due to having the wrong mindset or not trying hard enough or whatever gets very, very tiring.

Kaz, thanks for taking the time to reflect on this and share such honest and insightful feedback. I don’t think I implied that one can only consider their stuttering a disability if they are miserable and hate their stuttering. I was simply reflecting on how, in my personal case, it offends me to have my boss “label” me something that I don’t believe fits me at this time in my life.
I agree with the belief that one can be considered disabled if society does not reasonably accommodate the impairment.
Most people in my world accommodate my stuttering – they exhibit patience, they listen and ask questions if they are unsure. When someone reacts negatively, laughs or mimicks me, I (usually) educate them and make it clear that is not acceptable.
It was not always like that for me. When i was afraid to stutter publicly and feared societal punishment, I hardly ever talked because of my stuttering. I felt disabled then, unable to communicate. But I don’t feel like that now, because I speak whether I stutter or not.
My big thing is someone else choosing to label me as disabled – I think my boss might even do it to “get points” with management or his peers, like “I hired someone with a disability”. It was never really an issue with me, until he started mentioning it more recently.
That’s a shame you don’t feel welcome in the stuttering community – I sure would welcome you with open arms. I visited your site and listened to your clip, and would love for you to consider being a guest sometime on my podcast, “Women Who Stutter: Our Stories”. Tell your story and get it out there why you feel the way you do about lots of things.
As a disability advocate ( I do volunteer word with adults with intellectual disabilities), I totally agree with you that autism is a disability. Depending on the degree, missing social cues, not relating well to societal norms or nuances, other “symptoms” do indeed qualify as a disability,. because as with stuttering, many people fail to understand, and therefore accommodate, people with autism or aspergers.
I am glad you chose to take the plunge and share your thoughts – everybody needs to hear all the different perspectives. Thanks again!
Pam

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