Came across a good post titled "Marginalized people are not revolution objects."

By writing this blog, I am trying to change the world for people like me who are suffering greatly not because our impairment requires it, but because no one's told us it's okay to live and work and date and go to doctor's appointments and hang out with friends and talk to family when we can't always mouthspeak. I have my own biases, both as a social justice type who's keen on disability acceptance, and as an individual who experiences conditions with common labels in very specific, sometimes idiosyncratic ways.

But no one else's opinions or choices are mine. If someone else with my same disability labels believes ardently in medical treatment and doesn't want to use alternate communication, their perspective is something for me to learn from and honor. (But most importantly it's their perspective and I have no right to an opinion on it if they don't want to have that discussion with me.)

As I write this blog, I'm trying to balance the ideological points I want so badly to get across because I think they can save other people very real suffering for very little if any cost, with the awareness that they are ideological points, and that promoting any one ideology runs the risk of erasing someone else's experiences and needs.

Forms of Mutism: Question-triggered

I listed several forms of partial mutism in this post. One was topic-specific mutism, and one was mutism triggering on questions with unclear answers. Recently I got to re-experience another pattern that's kind of a combo of the two: Full mutism triggering once someone asks a question.

In this case, I was asked a question that:

• Concerned something highly anxiety-provoking, unexpected to the asker
• Pitched me right into a swirl of doubts and conflicting feelings
• Had a very complex answer consisting of both unusually good things and unusually bad things, covering several intense days of varied emotions and experiences and their fallout

I immediately went mute. Not topic-specific mute, as in I could say things but dodge the question, but completely unable to speak. I went over to my preferred typing device (a laptop) and told stories that fell in the good and neutral emotional registers relevant to the question for a while and recovered mouthspeak after a few minutes, probably.

Once I had my mouthspeak back I was able to do this thing where I focus and exert effort to get myself to speak on the difficult topic and succeed--kind of like taking a big breath before taking the plunge. I told my partner the things that had me worried and said, "Now you know why I went mute when you asked me how my trip went," with a little laugh.

It interests me that I'm often able to mouthspeak calmly and well about something that made me mute after the fact--and this itself is an effective communication strategy as long as I'm managing the situation so I don't get pulled into something I don't want while I can't speak. Since I'm developing my relationship with my new significant other, being able to explain my communication status, what triggered it, and how it affected my behavior in the moment are all good things that help us work together going forward. 

I'm confident that I can always, if necessary, extricate myself from the situation enough to get to a typing device and explain what's going on, but I don't automatically have to do so the moment I lose mouthspeak. I do still want my partner to know that I can't speak when I can't, so I should probably work out a hand symbol in that regard, but there's some sort of empowerment in knowing I can stand there having not said something important but confident that I will explain it in good time.

"Can't Talk Right Now" Card

These days I'm usually only mute around my significant other. Typing, gestures, writing, and him being aware enough to wait until I can speak again have made those occurrences mutism a mostly non-scary, non-frustrating thing. (There are some times when alternate communication is less convenient, out of reach, or ineffective.)

But that easiness has only made me more aware of the times when I need to type but don't feel comfortable just whipping out my phone and going at it. I don't know whether other people will wait for me to communicate with them or get impatient and/or angry--for example, a doctor could see me typing on my phone, think I'm texting, and walk away or yell at me.

I went to the dentist a couple weeks ago feeling good and not expecting to have any difficulties--I trusted this dentist and had no reason to think my teeth would be bad. Well, I got bad news about my dental health, bad news that was also confusing because it seemed like the dentist and hygienist both knew that I was at risk the year before but didn't mention it to me. The dentist was also much more abrupt and empathetic and didn't seem to want to spend time speaking to me compared to what I remembered. You could imagine this strained my ability to speak. Well, I managed to stutter out one of my questions to the dentist but couldn't say the rest--more thoughts on getting communication needs met in health care later, since it's a special situation, but it did remind me I'm not free from all danger living in a world that expects different abilities.

More recently and less majorly, I went to a social gathering and showed up mute. It was mainly my boyfriend's work friends, none of whom knew about my selective mutism unless I guess he's been disclosing more than I would want/expect him to about me. I think they can sense when there's something off about me but don't actually ask about it--I showed up to the same gathering another time unable to balance normally and having other sensory processing problems. I feel like they're giving me weird, wondering looks when stuff like this happens--or they could be looking at me normally and I'm self-conscious. In any case, this time when I couldn't speak, I kind of wanted to pull out my phone and explain what was going on--only I figured that wouldn't be a very effective means of communicating to a crowd (I don't know how to get the phone to read the text in a robot-voice yet). I ended up just getting my voice back after some work in the hall once my SO and I left.

Tonight I decided to do something that'll aid quick communication of my communication status in situations like that. I'm not sure whether I'd feel comfortable using it, but probably easier and less anxiety-producing than typing/writing/miming the details in the moment when I'm already not feeling 100% comfortable.

So, I wrote this on a card:

Can't Talk Right Now I'm a selective mute (arrow to other side) ---->
I may need:

• Something to type or write on

• Time to regain my voice

• Extra time to communicate either out loud or in writing

------------------------Please note that I may be able to say some things but not freely communicate something particularly important by speaking.Anxiety or tiredness may have triggered my mutism.

Now it's in my wallet and will be available whenever I next need to come out to survive a situation! I'd advise something similar to other selective mutes if only because of super-high-risk possibilities like having to deal with police who might otherwise conclude we're uncooperative.