Thoughts on Inclusivity

In 6th grade I started at a new school. My teacher  was cruel and sarcastic. He made me read out loud even though I had an accommodation not to because of my stutter. He mocked me and taught the other kids to be impatient and mean. He cared more about getting a laugh than hurting someone. Once during free reading time he stopped by my desk and yanked “Island of the Blue Dolphin” out of my hand and said there was no way I could be reading that book. He asked me to read part of a page out loud. I blocked on the first words and he laughed saying he “didn’t think so.”

I’ve recounted this story many times as an example of terrible teachers and ignorance of stuttering but I think what bothers me most about the event is the assumption he made; that my stutter indicated I was less intelligent than I actually am. I think this is common among people who stutter. I’ve heard variations of this mentioned a lot. 

During the conference I had one particular poolside conversation about how frequently we hear some version of, ‘just because I stutter doesn’t mean I’m not smart.” And how this statement privileges stuttering above other disabilities such as intellectual disability and how that perpetuates enmity within our community. Why do we as people who stutter feel the need to separate ourselves from other disabled communities?

Abled society treats people with intellectual, cognitive and/or developmental disabilities with a lack of understanding of their humanity. They are denied rights to autonomy, dignity, family, justice, life, equality, self-determination, community participation, property, appropriate healthcare, and access to voting. Moreover, there is an unfounded belief that people with intellectual and/or developmental disabilities cannot and/or do not contribute to society. 

One workshop I attended that seems particularly relevant here was one on Intersectionality. While I know it’s not perfect, The LGBTQA+ community serves as an example of inclusion by trying to build their identity as a whole. I’ve heard many individuals identify as LGBTQA+ rather than their single letter. As a whole they don’t seem to exclude a subset of their community as less desirable. I believe the disabled community can learn from them.

As fellow people with disabilities we should have a keen awareness of the prejudices and maltreatment of people with cognitive and/or developmental disabilities. Who better to advocate and embrace this subset of our disabled community? If we don’t bring them into the fold who will? It’s time we stop saying that just because we stutter, doesn’t mean we’re not intelligent. 

 

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Tattoo

The other day I finally got a tattoo about my stutter. As you can see in the picture, it’s a flying barn swallow. I chose it to symbolize the freedom I’ve gained from accepting my stutter, but also freedom from all the negatives I associate with it:  fear, avoidance, self-loathing, and the abuse I experienced as a child from my step father. Making this sense of freedom permanent has been a pressing part of my stuttering journey. My hope is that this bird is a constant reminder about how far I’ve come and how I never want to go back.

This is the second tattoo I’ve gotten from the artist Evan Morgan–actually my second tattoo ever.  After years of thinking about getting one, I knew Evan would be the tattoo artist I’d use because my husband got a gorgeous sea monster from him. Finding out that Evan stutters cinched it. Getting a tattoo is already a weirdly intimate experience: the proximity, the sensations, the length of time. To have the artist also be a person who stutters made that intimacy even stronger. Not only do we have a similar shared history, we were free to talk without any fear of judgment or misunderstanding.

While he was working, Evan said something about the pain of the tattoo process that I think could also be applied to stuttering; “If you expect pain you’ll find it but if you just expect sensation and ride through you can have a rich experience.” It’s true, some sensations of stuttering are intense, some can be uncomfortable but many are just sensations. I’ve even found some stutters pleasurable or amusing

I hesitate to draw any more similarities between tattoos and stuttering because one is totally voluntary and the comparison doesn’t seem fair. But, like stuttering, tattoos can also elicit a range of responses from others. Other tattooed folks and other stutterers are often the kindest and those who are the least familiar, the most unkind.

Lastly, while tattoos are personal they are also often for everyone else to observe. I may not always want to spill out my whole story for anyone who asks, but I hope to use this tattoo to open up conversations about stuttering and perhaps educate a few.

Stuttering & Alzheimer’s

My dad and I have never had the best or closest relationship. He left my mom with 3 kids when I was 4 years old and moved into a dingy little mobile home on the edge of town. I would learn later that he’d had a affair, but I also know he and my mom weren’t very compatible. 2 years later my mom moved us a few states away and while he had visitation rights, I didn’t see him all that often. We used to spend a month in the summers with him though, and I have great memories of those times.

The times we were with him were always about doing stuff: camping, boating, skiing; never about real communication. Even though we both stuttered, He never talked to me about it. As a child I was happy for this. My mom, stepdad and speech therapists made me feel like I wasn’t even trying to work on it. It was my personal weakness that would suddenly not be an issue when I was with my dad.

Years later I moved to Chicago which was only a short train ride to my hometown and we saw a lot more of each other. Our relationship strengthened quite a bit and we really started to talk about things. We often sipped wine and talked for hours about politics, books, history and philosophy.   At this point I was completely covert about my stutter but much more aware of his. It made me feel uncomfortable. It was the last thing I wanted to talk about.

Fast forward even more years and we find ourselves in the same town again. About 5 years ago he received an Alzheimer’s diagnosis and it became evident that he was losing the ability to care for himself. When we moved him here he could still do some cooking and didn’t need us around every day. Even though I read everything I could find, I had no idea what caring for a parent with Alzheimer’s would really entail.

Over the past few years, the intersection of stuttering and Alzheimer’s has made communication increasingly difficult for him.  He has lost his huge vocabulary, and struggles to come up with the names of people and everyday objects. When he does have an idea of what he wants to say, he often loses it if he gets stuck in a stutter. I know he is frustrated and depressed about it.

I regret not pushing him to talk about stuttering while he was able. There was a small window after I accepted my own stutter and before Alzheimer’s stole his ability to comprehend where we might have had a real conversation.  It’s hard to say how it would have gone, but perhaps it would have opened a door to more frank discussions now. Stuttering is threaded through our whole lives and experiences together but it has left us in very different places. I can mire in my own regrets, but that isn’t very productive so I will just have to accept that it is what it is.

I don’t have a good way to end this and I will most likely write more as time goes on.

 

Spreading Awareness

It’s International Stuttering Awareness Day once again! This year I REALLY wanted to attend the NYCStutters one day conference, but with parent/teacher conferences last week and a tight schedule at work this week, I just couldn’t make that happen. I also couldn’t make the zine I had planned happen either. I waited until too late to try to figure out InDesign and even with the help of my daughter and husband who both have experience in graphic arts and layout, we couldn’t get it to work. My apologies to those who submitted work. There was one really amazing comic submitted by a young girl from chicago that was so great I got permission to share it here.  Kudos to Stella M. She has a serious future in stuttering advocacy and comic arts!

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Despite all the disappointments, I did get to participate in a stuttering awareness day activity with the American Institute of stuttering. We set up a table on the Atlanta BeltLine near the AIS office and spent the day educating passers by on stuttering. We couldn’t have asked for a more beautiful day and most everyone we talked to was responsive and learned something about stuttering. We even had a few folks hang out and talk to us for a while.

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Reflection on NSA Chicago 2018

All year I’ve looked forward to the National Stuttering Association conference because it would be held in downtown Chicago at the Sheraton Grand Hotel.  Leading up to the conference I was sure I would have all sorts of emotions once back in my former home town, especially ones involving my old covert self vs my new stutter-positive self. But surprisingly this didn’t really happen. The thing is, I didn’t go to any of my old haunts. The conference was held in River North– A place I very rarely ever went over a decade ago when I was living in the city. I also did a lot of the touristy things I was too ‘cool’ to do back when I lived there. If I’d had a few more days (and could time travel), I’d have loved to show my friends Wicker Park as it existed in the 90’s: Earwax, The Empty Bottle, Milk of Burgundy etc.. But those places are gone– at least the versions I used to know.

Unexpectedly this conference turned out to be much more about stepping outside of my comfort zone rather than stepping back in. For instance, I was sad to not have a few of my conference besties there, but that pushed me to reach out to new people. Many casual acquaintances were solidified into friends-for-life, and I met so many incredible first-timers and folks I’d never talked to before. Having the opportunity to introduce old and new friends to places like Navy Pier, Water Tower, Millennium Park and Chinatown created memories to last a lifetime.

I have to admit that I didn’t participate in as many workshops this year. Our creative writing group held ours for the second year in a row, and it went really well. I also got a lot out of one focused on Mindfulness and one on the cultural impacts of stuttering. But the workshop that stood out the most for me involved building up resilience through repeated tasks that increase in difficulty at each level. Fluency may no longer be a goal for me, but I believe this method can be applied to avoidance reduction and desensitization very well.

Pushing my comfort zone probably peaked on the last day of the conference. I’ve always wanted to do something for open mic, but have been fearful of getting up in front of a lot of people.  However, this year I took it a step further and participated in the monologue portion of the closing ceremony. I literally spoke in front of the entire conference!

Over the next year, I hope to keep this momentum going. I want to do more presentations at work, increase my involvement in stuttering advocacy and generally be more social. Stepping outside of my comfort zone seems less of a challenge now and just a place I want be.

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Wasting Time

I wrote this post for the American Institute for Stuttering blog.  Please visit their site and see all they have to offer.

A few weeks ago I was in line at a small independent grocery store that has a nice selection of healthy, prepared lunch items– soups, pastas, salads etc. It was one of the days before the children started back to school and we teachers were able to go out and grab a quick bite. I picked out a TLT (tempeh, lettuce and tomato) sandwich and a container of watermelon chunks. I had a plan to eat it at a picnic table outside while I looked at my social networks.

The lines were long and most people waiting had similar containers of food. In front of me in line was an older woman with a basket full of nail polish and beauty products. I didn’t anticipate her taking too long so I stayed in line behind her even though another opened up.

However, when it was her turn to be rung up, she unloaded each item one at a time and discussed them with the cashier. She had numerous questions. Were the nail polishes xylene free? Were the colors the ones young people like? Would the purple go with an off-white bridesmaid’s dress? Was the shampoo tested on animals? Did the sunscreen leave a residue? She continued her barrage of questions despite the fact that the cashier knew very few of the answers and also despite the fact that there were people in line behind her with food for their quickly dwindling lunch hours.

She fully enjoyed the process of asking questions about each purchase and showed little concern about wasting anyone’s time. And while those of us who were waiting perhaps wished she would hurry up and maybe groaned internally, we didn’t say anything and for the most part, waited patiently.

This experience has stuck with me as I have been forced to ask myself why I care so much about taking a little longer to speak than other people. Although I’m pretty comfortable with stuttering openly out in public, I still go into a low key panic mode if I have to give a lot of information, especially if I feel there is a time limit. For example, I get anxious at the pharmacy when they ask for my name and birthdate. This is frequently made much worse if there’s a line behind me.

The anxiety that comes with time pressure is something I have been working on in my therapy at The American Institute for Stuttering. I want to be clear that I am not being asked to ‘slow down’ to increase fluency. In fact, one of the assignments I’ve had is to intentionally stutter more and longer. I am to essentially waste people’s time. As a kind of desensitization I am supposed to take longer than I need to get out what I want to say. This usually takes the form of either letting a block or repetition last much longer than it normally might or adding a few voluntaries. I have to admit this assignment has been really hard for me. I like to get my business done quickly.  I don’t want to be that woman talking about all her bottles of nail polish! I hate the idea of people getting annoyed by me taking up more than my allotted amount of time.

It’s not surprising that we feel rushed all the time. What Larry Dossey in 1982 termed time-sickness has become a national epidemic. People regularly go over the speed limit, or get frustrated when web pages won’t load instantaneously. Likewise we multi-task in order to accomplish more in less time. After all, time is money. How many lunches have we eaten while checking email or paying bills? We are part of a culture that celebrates overachievers and ambitious high flyers. This obsession with doing more in less time has made us ill. Chronic stress has long been linked to attention loss, elevated blood pressure and increased risk of cardiovascular and other health problems.

I love the idea that extending a block or prolonging a stutter might push against this notion that we should always be racing against the clock. In terms of my anxiety, I have already benefitted from it. Recently, I had a long block while ordering a dozen donuts for my class. Even though there was a line of people behind me, I didn’t get panicked. It also didn’t ruin my day like it might have a year ago. But taking time is not limited to the experience of stuttering.

There is so much good that can come out of slowing down in all aspects of our lives. Along with better health, we can improve our relationships.  We can connect at a much deeper level with others by really listening to what is said and not planning out a speedy rebuttal. When we slow down and take all the time we need, we begin think more deeply and clearly and we open ourselves up to the wonder of the world around us.

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