Tania Melnyczuk

Diary

My Diary is my catch-all category for posts that don't fit neatly into one of the other categories.

The path forward

The path forward

A letter upon hearing of the imminent launch of your book

CONTENT WARNING: CHILD ABUSE

I am here as the enemy of your friends, your friends who enabled Kerri Rivera and her disciples to abuse thousands of disabled children throughout the world. Perhaps you did not see the suffering. Maybe you were not there. We saw, we saw the pictures of the bloodied strings of intestinal lining on dinnerplates and in jars, we saw the tubes, the equipment, the videos of the children screaming, we saw the symptoms of chlorine dioxide poisoning appearing on their scalp and all over their bodies. My friends spent years trying to get justice and help for these children—unfunded, whilst being called “shills for Big Pharma”. One of my friends received death threats. People doxxed her, called her children vile names, came to her home. She went to court against perpetrators. Very few were arrested. The abuse continues to this day.

Many of the same abusers also harmed their children through ABA. We tried to stop that, and the campaign continues. We were lambasted for it, told we understand nothing about ‘severe autism’, even though we share the testimonies of exactly those people, the ones labeled ‘severe’. I hear you are now against ABA too, and that fills me with so much relief, as your influence will help other parents move away from it too.

Many of the people who followed your friends were monstrous. Many others were merely misguided, frightened and vulnerable people, trying to do the best for their children and not knowing how. I’m friends with some of the ones who left all that. I know some of the ex-bleachers and many ex-ABA people. My godchild is nonspeaking and has a life-threatening seizure disorder. Many of my friends and allies don’t speak, and have high support needs, or are parents and therapists of autistic children and adults who have these struggles.

I’m also here as a biohacker, as are some of my friends. I’m not healthy, but I am as healthy as I know how to be. I support the efforts of parents who try to improve the health of their autistic children, and I share their frustration with the lack of knowledge in clinical practice, when research to support improvement exists.

I am here as all these things, but that is not what brought me here. What brought me to write to you is the thing you call a miracle, Spelling to Communicate. It is a modality which I support because actual nonspeaking autistic people with high support needs say it helps them. I helped to bring Spelling to Communicate to South Africa. I am an activist for the same thing you are now working towards along with your son: communication support for other nonspeaking autistic people.

Will you now change your direction, to stop the abuse of thousands of vulnerable autistic children and adults, or are you and your friends going to continue on your own path with your own personally-branded epiphany, as though we never cared deeply and spent years of our lives trying to bring you these messages about the importance of communication access, and about the harm of trying to cure autism with these bizarre methods? Are we now allowed to talk about the harm, or must all this still be silenced because you’re not really ready to listen to that part yet?


PS: Do you happen to know where Carly is? Remember, her dad wrote that book about her finding a way to communicate, and she became an activist in her own right—until that one day when she had something to say which he didn’t want people to know about, and then…

From Zekwande Mathenjwa to President Ramaphosa

Today Zekwande Mathenjwa, a 12-year-old non-speaking autist from Pretoria, took a major step in his journey as an autistic advocate. His words (communicated by Spelling to Communicate) were read at the Office of President Cyril Ramaphosa of South Africa by Vicky...

read more