Rare Conversations on Important Topics

The year 2024 is officially declared the Year of the Family in Russia. Family values form the basis for raising comprehensively developed individuals, strengthening the society, and establishing the basic moral principles that underpin intergenerational relationships. However, even within this value system, there are still topics that remain partly taboo.

Today, we address one such topic — sex education for children and youth.

In Russia, there are very few specialists willing to talk to children about their physiological maturation, bodily changes, and attraction to others. Sometimes schools take on this educational role, sometimes parents do, but in most cases, children learn about these matters on their own, through trial and error. Yet, it is crucial for children to know the names and functions of their body parts and the differences between friendships and intimate relationships. An open dialogue on these topics can help ease the growing-up process, preserve psychological health, and, most importantly, protect against potential abuse.

But do children with intellectual disabilities need such education? Those who are nonverbal, have poor interpersonal skills, or who will always be children mentally, even when they are physically adults?

Veronika Grigorieva, the founder of the Williams Syndrome Charitable Foundation, firmly believes that developing sexual awareness and discussing sex education is necessary for everyone. Veronika is also the inspiration behind Rare Lessons — Russia’s only project focused on sex education for children with mental disabilities.

VG: “The foundation is a personal story for me; my daughter has Williams syndrome and will soon be 16. When she was born, very little was known about Williams syndrome in Russia. To make sense of it all, I started creating programs to support parents and unite families raising children with the same syndrome. This led to the establishment of the Williams Syndrome Charitable Foundation and the community around it in 2012.

Veronica with her daughter. Source: Veronica's personal archive

As my daughter grew older, I naturally thought about the need for sex education for her and other kids with intellectual disabilities. While gathering information, I came across a frightening statistic: children with mental disabilities are four times more likely to experience violence than other children. This shocked and scared me. That’s when I realized we had to take the solution into our own hands.”

Williams syndrome is a rare genetic condition occurring in about one in 20,000 newborns. It affects boys and girls equally, regardless of birth conditions or nationality. People with this syndrome have a distinctive appearance, often described as an “elfin facies,” and exhibit general developmental delays with some areas of intelligence being well-developed. They are typically very sociable, have a good memory for faces, possess a large vocabulary, and often have absolute pitch and excellent sense of rhythm. However, they struggle with visual spatial tasks and abstract thinking.

 Today, about 20,000 people in Russia live with Williams syndrome.

 VG: “People with Williams syndrome often experience early puberty; for instance, girls may start menstruating at age eight. Another characteristic of the syndrome is that children are very open and sociable.

One early description of Williams syndrome referred to it as ‘autism in reverse.’ Carriers are hyper-social, always seeking eye contact and communication. So it turns out that even among people with mental health conditions, people with Williams syndrome are in one of the most vulnerable positions and have a high risk of experiencing abuse.”

In 2020, the CSS Charitable Foundation held a competition to provide financial support to organizations helping children in challenging life situations. Following a decision by independent experts, the Williams Syndrome Foundation was one of the winners. The Rare Lessons Project aims to create a series of short videos to educate children and teens about growing up and bodily changes, personal boundaries, types of relationships, childbirth, and more.

Preparations before recording. Source: Williams Syndrome charitable foundation archive

VG: “After receiving a grant from CSS, we got to work. Initially, we envisioned a series of classes where young people with intellectual disabilities could ask personal questions to experts and receive answers important for everyone. We wanted an open dialogue between a sex education specialist and young people with special needs.

However, we faced resistance from parents who didn’t want their children to ‘tell the whole country how they shave their armpits,’ as one family put it. Additionally, new amendments to the law on the promotion of pornography came into effect in 2020, making such conversations legally challenging.”

Faced with these obstacles, the foundation shifted from an “open dialogue” format to an “accessible monologue” format.

VG: “Together with psychologists, sexologists, and educators, we wrote simple, clear texts about puberty and growing up, intended to be presented by actors in a friendly manner. However, even within the creative community, we encountered significant shyness, as many actors refused to discuss intimate topics.”

Of the five videos in the Rare Lessons series, only the final one focuses on sex; the others are more akin to lessons in anatomy and psychology, presented in an accessible language. The actors’ reluctance to participate startled the team quite a lot and underscored the societal taboos and excessive inhibitions surrounding these subjects.

One actor recommended the foundation team contact Ekaterina Finevich, an actress involved in the Russian stage play based on of Eve Ensler’s “The Vagina Monologues”.

The play delves into women’s relationships with their bodies and the world around them, based on interviews with over a hundred women of various ages reflecting on their bodies, desires, fears, and joys. In Russia, the play is being performed under the title “She is Us”.

Ekaterina responded with understanding and enthusiasm and invited her colleagues to join.

Ultimately, the Rare Lessons series for special needs adolescents, their parents, parents of neurotypical children, and educators was delivered by remarkable, talented actors.

Ekaterina Finevich while recording one of the lessons. Source: Williams Syndrome charitable foundation archive

The Williams Syndrome Foundation team was highly pleased with the project. 

VG: “These videos can serve as a tool for parents to discuss sex education, personal safety, and self-esteem with their children. These are crucial areas that need nurturing and support in all children without exception.”

The videos have already been viewed by more than 3,000 people, with the most popular lesson titled “Who Needs Sex and Why?”.

The video series is available on the official YouTube channel of the Williams Syndrome Foundation.

Dear parents, please take a look and discuss with your children if you find these materials suitable for your family.