Wait, I'm suffering?

I'm poking around the internet trying to see what people are saying about selective mutism--hoping to find something positive, in fact. The domain "selectivemutism.org" belongs to the Selective Mutism Group, and I don't have anything major against them, but this language from their values/mission statement was disorienting to me:

SMG exists because of a belief in the social responsibility to bring about progress for all individuals who suffer from selective mutism. We believe that there is an obligation to foster awareness and understanding so that children, adolescents and adults affected by selective mutism will have access to the help they need to overcome their anxiety and reach their full potential of personal growth and participation in society. 

Personally I'm not suffering from selective mutism right now, I'm enjoying it--ecstatically embracing the chance to finally communicate at critical moments via typing rather than mouthspeak, knowing that doing so puts me in the middle of a proud and loving disability rights movement. I suspect this organization is doing many great things for my fellow selective mutes, but implying that we "suffer" from our communication needs is not one of them. It seems like it would only encourage (at least some of) us to feel stigmatized/embarrassed/unsafe using accessible communication techniques, which is a shame  disaster.

I may be reading too much into this, but I also think there's an implication in the second quoted sentence that selective mutism somehow stops us from "reach[ing] [our] full potential of personal growth and participation in society." For me, I've experienced the opposite--selective mutism has helped propel me to do things like read a personal monologue on stage to an audience of hundreds, ask dozens and dozens of people at a festival if they get consent before sex while tabling for rape prevention, and help NAMI give in-service trainings to teachers on childhood mental illness. Writing on whiteboards to professors in college because mouthspeak failed me was a form of vulnerability that increased our connection and ended up being an excellent accidental networking strategy--I can't say that social anxiety as a whole didn't damage my ability to form relationships during my school years, but selective mutism itself doesn't damage one's ability to make social connections.

You might be reading this and thinking, "What? But being unable to speak by definition keeps you from fully participating socially!"

My answer: "Only if you don't have a keyboard or anything to write with, or the people around you won't accept that form of communication, or you don't think the people around you would accept that form of communication." (Replace "keyboard or anything to write with" with non-mouthspeak communication form of your choice if desired.)

If a shy person can't get a word in edgewise, it's because they're surrounded by people who aren't trying to include them in the conversation. If it's socially unacceptable to communicate one's personal communication needs, it's because the dominant group has issues.

Personally, I think that schools and families should pay attention to whether or not a child is socially isolated, and then figure out how to get that child included. Maybe a more outgoing child who's of the nurturing mindset should be recruited as a mentor, or maybe there's an extracurricular activity the child can be involved in. Nonverbal communication should be explicitly accepted, and the child's opinions solicited. Adults should also be treated with similar consideration.

Decent people do this all the time in social settings. Someone notices that a discussion has been conducted between a few noisy people and walks over to a quiet person to ask them their thoughts. A group wants to go to a bar after a party, but one attendee's under 21, so everyone stops to discuss a mutually satisfactory compromise. Someone really wants to go to a meat-heavy restaurant, but their companion believes in animal rights and would be pale and nauseous just being there, so they go somewhere else instead. Growing up my needs and preferences weren't accommodated in this basic way, which I'm sure contributed greatly to my anxiety--I simply didn't expect a comfortable place to be made for me in society, so every next step was something to be feared.

In turns out I was wrong. I've reached a point in life where my needs are met by the people around me, most of the time, and my feelings and thoughts certainly matter to them. Yes, even (perhaps especially) my boss. Currently I still have some fears, even selective mutism related ones, prominently about whether or not doctors will accept typing as a means of communication. I've usually been damagingly semi-speaking around them, so that I'd answer tersely or tell them what I thought they wanted to hear because I was too anxious to be honest, and they were too dismissive/rushed to relate to me in a way that would help me reach the truth. But if they won't accept typing or otherwise react negatively to it? That's not me suffering from selective mutism. That's me suffering from prejudice.

I'll end on a quote from someone whose words have empowered me more than any therapist: Alyssa of Yes, That Too:

It bothers me when people think of including people as above and beyond because if it's above and beyond, it's not expected. It needs to be expected. Not just for the kid I taught to throw forehand siting down today: his leg will heal. For everyone. Disability is part of the human experience, and the way we live needs to reflect that. People with disabilities need to be able to participate, and the question shouldn't be "Can this person participate?" but "How can this person participate?" - See more at: http://yesthattoo.blogspot.com/2013/06/that-wasnt-being-superstar-no-really.html#sthash.K3CYU8NM.dpuf

Things I want you to know about selective mutism

1. Finding and using effective means of communication is far more important than being able to mouthspeak.

I can mouthspeak almost all the time nowadays, so much so that my coworkers and casual friends don't have any idea I'm a selective mute. But I still can't tell my doctor all my health concerns or my lover all my sexual worries and needs via mouthspeak--and worse, in high-stress situations like these I can often fumble out some mouthspeak, just not the things I really need to say, maybe even their opposite. That can result in serious emotional and/or physical injury.

The most important thing I've learned this year is that I can reliably communicate via typing in those situations instead. I can't underestimate how important this is. It removed so much very, very real fear from my life, and has made having a non-traumatic relationship possible.

If you or a loved one has recently started losing speech, I don't want you to jump straight to getting it back even if you can. I want you to know how to communicate without it because then you'll be prepared for anything, whether it recurs or not.

2. Ability to speak in a situation isn't all or nothing.

I'm not the only selective mute who sometimes can't speak at all--but has also had other levels, like:

-Inability to speak except to agree with someone else. I've had some really weird phone calls and other conversations with service people who had to guess what I wanted while I ended up agreeing to something completely unrelated because I had no other choice.
-Ability to speak about anything as long as I don't disagree or say something that I fear would displease the other person. This one's really bad in bed.
-Ability to speak and sound normal as long as I don't talk about a certain topic, like sex.
-Ability to speak somewhat but generally just say noncommittal things, like "Maybe," or "I don't know." Also might be able to give a hasty, marginally correct answer like, "Yes" when really it should be a lot more complicated.
-Complete inability to speak unless asked a direct question. I went to elaborate lengths to come out when I was 15 by dressing in such a way that my fellow high schoolers would ask me about my sexual orientation, since I was unable to initiate conversation with them normally.
-Difficulty speaking when asked a direct question that's unclear or makes false assumptions. "Do you want beer or a cocktail?" might provoke silence or a bunch of "Uhhs" if the answer is "I don't drink."

For me this comic was a revelation: Par la Fenetre -- Today's #1 scary thought on anxiety level

It has an anxiety level scale labeled "Inability to speak at all," "Inability to communicate feelings," and "Inability to say 'no'". I think if everyone knew these different levels of mutism were possible and looked for them in critical situations, my life would've gone so much better. As it is, I've spent years building up my ability to communicate that I have these difficulties and work around them (typing--I can't sell it enough).

I think everyone dealing with these levels of partial communication needs to learn to explain them, or just get a card to hand out that explains them. It's part of what we need to keep ourselves safe. Us explaining isn't nearly enough--we need to have people who are actively engaged in working past our communication barriers and looking for warning signs that we might have just agreed to something without meaning it--but it's a huge step forward.

Hello, World!

I'm a 20-something professional who can't always speak.

Until earlier this year, that was a hidden weakness that could shatter me into pieces. I couldn't say things like "No, I'm not in the mood," or "Use a condom."

Then I discovered Autistic blogs and discussions online where other people who can't always mouthspeak talked about using alternate means of communication--often as simple as whipping out a smartphone or carrying a laptop around to talk.

The simple grace of their example is the freedom of my soul. I want to shout it from the rooftops, but I'm a selective mute so I'll blog about it instead.

Selective mutism, though a diagnosable condition on its own, is pretty clearly one manifestation of larger patterns of being in the world. I won't say that it's a symptom of an anxiety disorder because (1) I think that's only one lens that captures only part of the phenomenon, at least for me, and (2) I don't think having different communication needs/strengths is actually a problem--rather, the problem arises when those around the person don't respect those needs or allow them different ways.

So, what are my larger patterns?

I'm a 20-something professional who can't always move. When this was frequent and severely limiting me, in late high school and college, I heard the words "conversion disorder" as well as "depression with catatonic and vegetative symptoms." Since conversion disorder's in the anxiety category, that's more accurate in some sense, but again I think that's also only part of the phenomenon. I think my brain just can't always handle as much activity and emotion and sensory stimuli as I put it through, and uses some degree of catatonia as a way of giving me space to recover.

I had unbearable anxiety most of the time I was in school, usually paired with depression. No, really, my mother says I was a happy child until my personality completely changed, she thinks around the time I started school. Graduating from college into a stable job was the best thing that ever happened to my mental health. My anxiety was both academic and social, intensified by severely inadequate emotional support at home and inheritance by gene and example. Various symptoms of anxiety left their own long-lasting wounds, and I struggled for so many years.

I may or may not be on the autistic spectrum, but I'm definitely neurodivergent and indebted to the activism of my neurokin.

I am currently passing as both mentally and physically able, which can be almost the same thing as being nondisabled, but the gap there's significant. At the very least, I know that I am balanced precariously on the border between "functioning" by society's requirements and being unable to meet those norms that happen to entitle people to things like housing, food, and human dignity, so disability rights struggles are my own.

More? Well, you'll have to read this blog.