For someone like me, speaking has never been easy. Speaking about Selective Mutism has been the hardest thing to speak about of all. Nonetheless this is something I feel I have to do, because finding speech difficult (as I do now) or barely being able to speak at all (I was entirely mute in my childhood home for a decade) does not equate to having nothing to say.
iSpeak aims to give people with Selective Mutism their own say about their own condition. We aim to inform the general public, health services, the media, and also academia via our own life experiences. As such we have contributed to (among others) the BBC,
Sky TV (Chrissy B Show) and the
2016 Shape Arts Exhibition. I have undertaken an exploratory academic study on Selective Mutism in adulthood at Chester. And we have published a book called Selective Mutism In Our Own Words, which includes the first-hand accounts of Selective Mutism from around thirty people with SM – teenagers and adults; and a number of parents too.
iSpeak exists to support adults and older children with Selective Mutism, and their parents; and also to challenge misinformation and stereotypes surrounding this anxiety disorder. One of the main stereotypes which still abounds is that SM is a childhood-only condition. Most people who contact us are not children. I am not a child. One of the other stereotypes is that SM is cute and twee and never damaged anyone. In fact, Selective Mutism – the Selective Mutism that I know - is a serious mental health issue, a particularly cruel and disabling anxiety disorder, which robs children and adults of their voices. Teens and adults with Selective Mutism are trapped in silence in public or in their home environment or both - not for a day or ten days or ten weeks or a year. It can be, as it was for me, for ten years or more.
I would liken SM to the reverse Pinocchio effect. Pinocchio, of course, was a wooden puppet who desperately wanted to be a real boy. In reverse, Selective Mutism turns real teens and adults into mute, wooden puppet versions of themselves in given situations. It is an anxiety disorder which robs children and adults of the most precious things – communication, speaking, being heard.
Selective Mutism was always part of my life. I never spoke to my grandparents before they died for instance. My SM became most profound in my early teens after which I could no longer speak to any family member, associate or visitor. The reasons are unimportant. I had only the most rudimentary of sign language to use, in my own home: tea (the letter T with both forefingers), having a bath (swimming gesture), yes (shrug), and no (shrug). Could you spot the difference between yes and no? There wasn’t one. Selective Mutism robbed me not only of my voice for ten years but also my dignity and sense of self. I went unheard and my silence unnoticed year after year; and, predictably, I descended into acute depression and acute stress - mental ill health.
I broke my silence by whisper reading a book to my mother when I was 23. Gradually I increased volume and eventually I succeeded in speaking with full volume in that situation. The story I read, incidentally, was Our John Willie by Catherine Cookson - one of several short stories in a book from The Reader's Digest. The John Willie in the story was, ironically, both mute and deaf.
Teens and adults with SM go about their lives afraid to be heard, afraid to speak, cough, sneeze, make a sound, and many unfortunately (and wrongly I should add) begin to feel their lives are void of meaning and not worth living, as I did myself. What is the point of having a head full of thoughts, when one’s mouth is bricked over and there is no way to get one’s thoughts out? Just as it was for me, very often the outcome for teens and adults is depression and other mental health issues such as acute stress, OCD, agoraphobia, panic disorder, generalised anxiety disorder, and so on.
However, I am, perhaps, testament that even without support there is always a way forward. There is always hope – regardless of a person’s depth of silence, or age. The messages iSpeak provides to any person with SM who contacts us it that ‘you are not alone’, there are other people out there who know and understand exactly what you are experiencing, and regardless of how you communicate (whether it is in writing, via a speech app, or by speaking) ‘you have a voice’.
Read more about Carl's life story and many other experiences too