Being visibly invisible - A journey with cleft | Stacey Hussell | TEDxNHS

Key Concepts

• Visible Difference: A physical characteristic that makes a person look different from the majority of the population, such as a scar, birthmark, or condition affecting facial features.
• Cleft Lip and Palate: A congenital condition where the lip and/or roof of the mouth do not form properly during pregnancy.
• Trauma: The psychological and physiological impact of distressing events, which can manifest physically and emotionally.
• Nervous System Regulation: The process of managing the body's stress response to achieve a state of calm and connection.
• Disabled Villain Trope: The media portrayal of characters with disabilities or visible differences as antagonists or evil figures.
• Self-Compassion: Treating oneself with kindness, understanding, and acceptance, especially during difficult times.
• Inclusion: The practice of ensuring that everyone feels welcomed, respected, and valued, regardless of their differences.

Personal Experience with Visible Difference

Stacy, the speaker, shares her personal journey of living with a unilateral cleft lip and palate. She recounts experiencing bullying and feeling different from the end of primary school through secondary school, despite having supportive friends and focusing on her studies. This experience highlights the profound emotional impact of visible differences, particularly during formative years.

The Impact of a Child's Diagnosis

The narrative shifts to Stacy's experience as a parent when her second child was diagnosed with a bilateral cleft lip and palate in utero. While acknowledging that knowing what to expect can mitigate some fear of the unknown, she emphasizes the deep personal struggle of preparing her son for a life she knows will involve surgeries, stares, comments, and potential bullying. She grapples with the perceived hypocrisy of building her son's confidence when she is still working on her own.

Dylan's Birth and Early Life

Dylan was born with a bilateral cleft lip and palate. His birth was medically challenging, requiring intervention due to breathing difficulties. However, upon being placed on Stacy's chest, her anxieties about his appearance dissolved, replaced by a profound sense of his beauty. Despite this, she expresses regret for the anxiety she experienced during pregnancy regarding how others would perceive him. Dylan has undergone three surgeries, and the post-operative distress remains upsetting for Stacy. The family cherishes his smiles, having experienced the joy of two distinct smiles due to his condition. Dylan, now three years old, is described as cheeky and happy, wearing hearing aids and receiving speech therapy. Stacy continues to worry about his future challenges, including the potential for bullying, especially in the context of social media.

Understanding Trauma and Healing

Stacy's journey led her to join online cleft communities during her pregnancy with Dylan. Through these connections, she learned about the concept of disassociation and disconnection within her own body, recognizing that her inability to hide her visible difference meant it wasn't "safe to feel seen." She learned that peer rejection can cause not only emotional but also actual physical pain, a concept that resonated deeply with her childhood experiences.

She explains that trauma impacts the body and brain with both physical and emotional consequences. Her own childhood experiences, including surgeries and societal treatment, led her to live in a state of "danger mode." Through practices like mindfulness, brain spotting, bilateral stimulation, final energetics, and cold water swimming, she has learned to achieve a state of calm, connection, and presence, realizing that life is not meant to be a constant struggle for survival.

Drawing on the belief that trauma contributes to everything, not just extreme events but also everyday emotional wounds from childhood stress and disconnection, Stacy found healing through self-awareness, supportive relationships, and compassion, particularly self-compassion. This understanding of trauma and the nervous system has transformed her self-perception and her parenting approach.

Visible Differences and Media Representation

Stacy argues that children with visible differences are "life's biggest teachers" and have the potential to change the world. She believes her son has certainly changed hers, enabling her to speak publicly. Her passion has become educating and raising awareness about cleft and other visible differences.

A significant area of concern for Stacy is the representation of people with visible differences in the media. She points out the prevalent trope of casting characters with visible differences as villains (e.g., The Joker, Freddy Krueger, Captain Hook). This disabled villain trope exaggerates physical traits to signify evil and stems from an outdated belief that disability is a punishment. She questions the impact on children who consistently see characters with similar appearances portrayed as antagonists. She notes that many of these characters are not even played by actors with lived experience of these differences.

Changing Faces and Societal Stigma

Changing Faces, a UK charity, is highlighted as a leading organization supporting individuals with scars, marks, or conditions affecting their face or body. The charity's findings indicate that in a society that links good looks and physical perfection to success, many individuals with visible differences feel excluded and ignored. Statistics cited include:

• 43% of people with a visible difference experience hostile behavior in public.
• 51% feel self-conscious or embarrassed.
• 38% are stared at in public. These statistics represent real people experiencing isolation, exclusion, and unsafety, often from childhood. Stacy emphasizes that visible differences can occur suddenly, affecting anyone.

Initiatives for Change

Stacy shares her personal initiatives to drive change:

• Smile Journey: Utilizing her photography skills, she offers keepsake photographs to individuals undergoing clinical appointments for clefts, aiming to provide positive and empowering images. She is expanding this to other visible differences and is setting up the initiative at a new hospital.
• Changing Smiles: A personal project to photograph 700 people born with a cleft, now expanding to other visible differences. Her future aspirations include an exhibition and a book, with the goal of populating Google images with positive representations instead of clinical or "scary" images.

Progress and Call to Action

While acknowledging progress in inclusion, Stacy notes that visible differences remain "visibly invisible." She points to positive examples of brands and media that are making strides:

• Audi: Sells dolls with visible differences.
• Pampers and Newbie: Feature babies with clefts in packaging and advertising.
• Films: Wonder and A Different Man are cited for shifting perceptions.
• TV Series: The Apprentice and Love Island have included individuals with visible differences, showcasing beauty, success, and strength.

Despite these advancements, significant work remains. Stacy outlines actionable steps for different groups:

• Parents: Talk to children about faces and kindness early, and provide toys, books, and stories reflecting diverse faces and experiences.
• Teachers: Integrate visible differences into lessons on identity and inclusion, invite speakers, and share real stories.
• Media/Advertising Professionals: Hire individuals with lived experience, tell authentic stories, and cease using visible differences as a metaphor for evil.
• Individuals with a Voice: Use it to challenge stereotypes and be conscious of consumed and shared messages.

Conclusion and Final Message

Stacy's core message is a plea to "don't look away. Start seeing us." She expresses a desire for her son, Dylan, and all children with visible differences to be seen and celebrated, not just accepted, from a young age. She envisions a future where they grow up knowing they are "enough" in all aspects of life. The call to action is personal and immediate: "You don't have to change the world, but you can change who you sit next to. Start there."