People on the autism spectrum are boycotting “To Siri With Love: A Mother, Her Autistic Son, and the Kindness of Machines,” a book written in 2016 by Judith Newman, a mother whose son is on the autism spectrum. In her book, Newman says she wants medical power of attorney when her son, who is currently 16, turns 18 so she can get him a vasectomy.
The boycott was started on Thursday by Amythest Schaber, an autistic person who makes Youtube videos and was described in Newman’s book as a “manic pixie dream girl” without consent. The Mighty reached out to Schaber, who declined to comment.
People in the autism community have rallied around Shaber in support of the boycott, criticizing Newman’s views and portrayal of autistic people.
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Others have added negative reviews on Amazon, calling the book dangerous, despicable and ableist.
Since the boycott began, Newman said she has received a death threat but stands by what she wrote. She told The Mighty in a statement that she believes much of what is being said is taken out of context.
“I am going to insist Gus has a vasectomy,” Newman said, adding:
The autistic community thinks I want him sterilized because I do not want the DNA of an autistic person to perpetuate. This could not be further from the truth. I want to be a grandmother! What I do not want is my son having a child he could not possibly take care of. This is my big fear. The truth is, I would never do this unless it was reversible.
But in the book, I said I wanted to have the ability to decide on a vasectomy for him if he becomes sexually active at 18, and I make no apologies about that.
Despite Newman’s protests that people are taking her words out of context, without her son’s consent, Newman is still doing what advocates accuse her of: ignoring her son’s personal agency.
“The decision whether to have children or not is a very personal one,” Christa Holmans, an autistic person who runs the blog Neurodivergent Rebel, told The Mighty. “I’ve chosen not to have children, a choice I made for myself. It would not be fair for someone else to make the choice for me.”
According to Samantha Crane, legal director for the Autistic Self Advocacy Network, someone who signs a medical power of attorney does not lose the ability to make their own decisions. Medical power of attorney gives the supporter (in this case, Newman) the right to assist in medical decision-making. The only time the supporter would make decisions is in a situation when the individual cannot make them, such as during a loss of consciousness.
“I’m not aware of any state in the U.S. in which it would be legal to use a healthcare power of attorney in the way that this passage appears to be describing,” Crane told The Mighty.
Crane said this doesn’t mean involuntary sterilization doesn’t happen in the U.S.
“In many jurisdictions, court-appointed guardians are still allowed to consent to sterilization procedures without informed consent from a disabled child or adult, based solely on the belief that people with disabilities should not have children,” she said. “This is unacceptable and we support legislation that would protect all people with disabilities from this kind of abuse.”
The U.S. has a dark history of forced sterilization with 31 states previously operating eugenics programs. Between 1933 to 1977, North Carolina sterilized an estimated 7,600 disabled, poor and uneducated people — an offense which the state apologized for in 2002. Despite states acknowledging that these programs are wrong, today some parents still attempt to ask courts as well as internet forums for guidance in regards to sterilizing their children.
“Judith’s words take away her son’s rights to choose for himself and endanger autistic lives everywhere by setting a dangerous standard,” Holmans said. “We must not let this type of behavior become acceptable. Autistic people all over the world are joining together and speaking up against non-autistic people who talk over us. We want the chance to make our own decisions, and speak for ourselves.”