The song “Wonder” by Natalie Merchant is one of my favorite songs. I regard it as a disability anthem. Here is the music video of the song in which the singer and many women and girls sing along to the music. The women and girls are a variety of ages, body types, and races. At least one of the people in the video has Down Syndrome. I love everything about this song. It is joyful, it centers the narrative on the disabled girl/woman’s experience, and it pokes back at the abled people–doctors and journalists– who are so fascinated by her.
“A diagnosis is just a tool to get you what you need,” said a good friend of mine, by way of his therapist. His statement particularly resonated for me because for a long time I’ve been a woman without a diagnosis. This article is about why I am finally OK with that.
First of all, it’s not entirely true that I don’t have a diagnosis: I’ve been given many different diagnoses by many different doctors. Some of these labels are simply descriptions: atypical facial pain, idiopathic neuropathy. Some of the labels don’t really fit me or have that lovely word “Syndrome” at the end of them, and I’ve become so aware of that word I eventually started telling people, jokingly, that I simply have Syndrome. Some of the labels given to me were taken away later, misdiagnosis: “you don’t actually have asthma, you have paradoxical vocal fold movement!” (a voice disorder that mimics asthma).
I have learned some huge lessons from all my time spent in the medical-industrial complex: doctors don’t have all the answers, and that a good doctor is one who says, “I don’t know.” Also, chasing after a diagnosis, endlessly, is a game with steeply diminishing returns. You might get a diagnosis that is wrong. You might never get one at all that gets you what you need, especially if what you need is outside the medical system entirely. I spent hours and hours with doctors and nurses, trying out dozens of medications, and in the end I accomplished very little. Meanwhile I invested all kinds of desperate hope that the next specialist might be able to help me. I am not advocating giving up hope: I am advocating having realistic expectations about the medical system. Investing all my hope, time, and energy in finding a diagnosis and/or treatment for my ailments was not effective nor enjoyable. Years later, I am basically in the same state of health that I was when I first got sick.
I have reached a place where I am quite comfortable not having a diagnosis. I’m sure the medical system does not agree with nor support this stance. Everyone must have a label, otherwise how will they know what box to put us in, which specialist to send us to?
I say about myself that I have chronic pain and illness. I have a disability. If people want to know more than that, I will tell them about my experiences, my feelings, my activities as a disability activist, the way I live my life. Many people seem to want a label, and for a long time I did too: something to say to the pharmacist, the people at work, my extended family; something simple, something people could understand. People understand things like migraines, like diabetes or anemia.
There are certainly concrete benefits to having a diagnosis: If I had a diagnosis I could use Google to learn more about my illness. I could perhaps find support groups populated by people with my same illness. I could perhaps get government disability benefits. These things are not impossible to get without a diagnosis, but they are harder to find. There are, for example, support groups and counselors for people with chronic pain, which my medical system eventually referred me to.
But what I really needed to find was the social justice community. What I needed, and eventually found, was disability identity. Right here are the tools I need to help me live a life with pain and illness. Here is a supportive community, coping techniques, theory, friends. A person doesn’t necessarily need a diagnosis to live here. ?
At My Local Convention, the Access team made a big push toward improving microphone usage this year. This is separate from things we normally do such as marking off chairs for lip readers. Below are revised documents that I wrote to the concom, arguing for an investment in this cause.
I. Hearing impairment is common.
“According to the US Dept of Health and Human Services 1990 and 1991 Health Interview Surveys, approximately 20 million persons, or 8.6 percent of the total U.S. population 3 years and older, were reported to have hearing problems.
“The elderly were more likely than any other age group to have hearing problems (Figure 1). Persons 65 years and older are eight times more likely to have hearing impairment than persons ages 18-34 (i.e., 3.4 percent of the population ages 18-34 have hearing impairment, compared to 29.1 percent of the population 65 and older).”
Therefore: Hearing impairment is likely to be common at our event.
II. Microphones benefit everyone, thus are an element of universal design.
Hearing is difficult in noisy, crowded situations such as cons, even for those who do not have hearing loss. Factors such as sinus problems can temporarily affect hearing. Mics also benefit those with attention difficulties.
Mics save speakers from having to strain their voices or having to shout. They are a confidence builder for people– they help teach people to value their own voice. It is a professional asset to know how to use a mic properly.
III. Like other aspects of our con: Having good access for hearing will create an environment that will attract people to us; having bad access for hearing will create complaints and disappointed people.
In short: We all benefit from having better microphone usage at our event.
IV. Known barriers and difficulties:
–Mics are expensive
–Cords get in the way and knock things over such as the water glasses. (Proposed solution: cup holders)
–People don’t like using mics or don’t know how to use them well
–Mods don’t always repeat audience questions/comments
–Smaller programming rooms don’t have mics (aren’t wired for them.)
–Write on back of name tents: “PLEASE USE THE MICS”. Name tents sit in front of every panelist.
–Create signs, tape to each panel table to remind people to use the mics. We borrowed the word “Sonorous!” which is the voice-amplification spell from Harry Potter for these signs (we’re a science fiction convention.) The signs had an image of a mic with a green circle around it and text that read, “four inches from your mouth because we’re loud and proud!” (or something like that)
–Buy, borrow, scrounge for more mics. We borrowed six from a college, and rented 2 additional mics on top of our normal number.
–Train mods to enforce this, get them to use mics and repeat audience questions. Repeating audience questions not only allows people to hear the question, it also permits people who are lipreading to maintain their gaze in one direction! Our convention has a “mod squad” training which was effective in this regard.
–Have access volunteers raise their hands in rooms to ask/remind people to use the mics. In this way volunteers can speak up for others who may have trouble speaking up for their own needs.
–Long term: get mics into all programming rooms
–Look into wireless mics if possible
–Address the “I’m shy” issue which often prevents folks from using the mics (and/or other resistance). Personally I believe that microphone use can be “normalized” so that nearly everyone simply does it the way we all put on seatbelts, when they are available.
Microphone use: pretty good, but myself and others definitely encountered able-bodied privilege in the form of people claiming their voices are good enough, loud enough, and gosh darnit mics just aren’t natural. In smaller rooms, mic use was worse than in larger rooms. Some people were “mic hogs” (not good at sharing or passing microphones); therefore more mics would be better for 6-panelist panels. Some people gestured with the mics or held them too far from their faces. I believe this shift in culture will take several years but we are off to a good start.
“To choke”, used as a metaphor in performance, means to freeze up, to fail to perform, to be overcome with stage fright or other emotions and simply stop moving. To become “choked up” with emotion, a phrase familiar to many of us, means to feel emotion so strongly that it is difficult to speak. It is a feeling of the throat tightening and words stopping.
These are natural, normal phenomena that most people feel once in a while.
I have Selective mutism (link goes to Wikipedia) which I classify as a disability and also believe to be a natural and normal phenomenon, albeit a rare one, affecting an estimated 7 in 1,000 people. I am currently seeking treatment for it which has me thinking about selective mutism more than I usually do, and its impact upon my life.
Selective mutism is mostly seen in children and adolescents, and it is important to understand that it is a failure to speak, not a choice not to speak. It is not a reflection upon the child’s parents; it is a disability. The child would like to speak but cannot, in certain environments, to specific people, or about certain topics, due to extreme anxiety. This disorder can extend into adulthood, which is the case with me. I was never formally diagnosed or treated as a child.
There are specific instances from childhood and adolescence that stand out in my memory, and others that my family still talk about, that are good examples of selective mutism in my life:
I did not speak to my preschool teacher the entire year (but talked freely at home)
I did not talk to store clerks
I went to junior prom and did not talk to anyone due to anxiety
I did not talk much in church/Sunday school and did not make friends there; although I made friends freely in other venues
What I have trouble talking about now: Basically anything that is associated with a lot of emotion. Here are some examples:
Sexuality, being queer
My chronic pain and illness
Conflict with friends or family
I have trouble calling people I don’t know or knocking on doors, although I don’t think this is uncommon for shy people
I am sometimes uncomfortable being asked to keep secrets or not to talk about things because it reinforces this anxiety
One article I read recently said: “You can’t get a kid verbal until you have social comfort” (http://www.selectivemutism.org/news/people-magazine-spotlights-dr-elisa-shipon-blum-director-emeritus). This resonated quite strongly for me, because as a queer person in society, who was closeted (to myself) for a very long time, it is rare that I am socially comfortable. I have certainly learned many coping techniques. But it is hard to speak when you are not comfortable with yourself, and when society makes you feel unsafe. I cannot talk about selective mutism without talking about my experience of being queer, and being closeted. They are tied together. Activist Mia Mingus says, “intersectionality is a big fancy word for our lives.”
What does selective mutism feel like? People talk about a flight or fight response to danger. This is a third response, a “freeze” response. The body senses danger, although the source is unclear, and the body freezes. Talking is impossible. Even thinking becomes different, slowed, unclear. “How can I get myself out of this situation?” is usually what my brain is focusing on, but often that thought is in conflict with some other need or desire like wanting to be at a party or needing to answer a question directed at me. It is a terrible feeling, a deer-in-headlights feeling. I want to escape, but I can’t figure out how, I can’t figure out what is even going on. As I have learned more and more about this I have learned to simply feel the anxiety, feel it in my body and my throat, and not try to think so hard, try not to focus on words, which often do not work well for me in times of high anxiety.
What helps? Getting away from words and looking at images helps. Doing things that root me in my body helps, such as holding my hands under hot water. Writing out whatever is bothering me helps tremendously. And, importantly, I need to notice when it is happening. I have had this all my life; it’s my normal, after all, so I don’t always notice when I’m being anxiously quiet or peacefully quiet. I don’t always notice if there is something important in my life that I am not talking about. I don’t think this is just a selective mute thing: in a repressive culture, there are plenty of important things we just don’t talk about, for all sorts of reasons. This might be because to speak about them makes the thing more real; to speak might make other people uncomfortable or angry or bored; to speak might make myself vulnerable, because someone could use my words against me. Speaking is dangerous, and silence is a naturally protective stance. The body knows this, the throat closes.
Thankfully, the fingers don’t, the fingers can still type. Writing about my life is practice for talking about my life. It is worlds easier.
Speaking is a political and personal act. I want to get better at it, I want to value my own voice and what I have to say. I am taking baby steps in this direction. I am, strangely enough, good at public speaking as long as I don’t have to talk about myself, or something too personally connected to myself. I do better at speaking when my role is defined, such as in academic or club environments. I have read interviews of actors and other performers saying similar things, that the stage or screen is the only place they are comfortable speaking, because they are playing someone else, not themselves.
In all the reading I have done about selective mutism, on blogs, in scientific articles, on awareness websites, all the focus is on diagnosis, treatment, therapy. Don’t get me wrong, I think these things are great. But what I don’t understand is the lack of discussion on how to live well with the disorder. The social justice model of disability has taught me many things, and one of those things is that I don’t necessarily need to be cured. I can seek accommodation for my disabilities and live well with them. Why not teach kids with SM sign language? Why not let them type or write their responses to questions? Why do we privilege speech so highly? Other forms of communication are just as useful, and sometimes better. There are many forms of self expression. Words are just one kind, and speech is just one iteration.