Poster Child

1. Childhood struggles with disability shape identity and self-perception

"I had learned to manage my disability by putting on a determined smile and believing that with the right adaptive strategies—the right clothes, the right attitude, and a sense of humor—I could adjust to any situation."

Early experiences shape self-image. Emily Rapp's journey with proximal focal femoral deficiency (PFFD) began at birth, leading to multiple surgeries and the use of prosthetics from a young age. These early experiences profoundly influenced her self-perception and approach to life.

Adaptive strategies and resilience. To cope with her disability, Rapp developed a range of adaptive strategies:

• Maintaining a positive attitude and determined smile
• Using humor to deflect attention and discomfort
• Carefully selecting clothing to conceal her prosthetic leg
• Developing a strong work ethic and drive to excel in other areas

These coping mechanisms, while initially helpful, ultimately contributed to a complex relationship with her disability and body image that would take years to unravel and address.

2. Overcompensation and the pursuit of perfection as coping mechanisms

"I was the superachiever; the poster child for what a person could accomplish with guts and determination."

Striving for excellence as compensation. Rapp's disability led her to pursue extraordinary achievements as a way to prove her worth and overcome perceived limitations. This manifested in various aspects of her life:

• Academic excellence and overachievement
• Intense focus on physical fitness and appearance
• Participation in challenging activities like skiing
• Constant drive to excel in all areas of life

The dark side of perfectionism. While this pursuit of perfection led to many accomplishments, it also had negative consequences:

• Development of disordered eating habits
• Intense self-criticism and low self-esteem
• Difficulty accepting help or admitting struggles
• Emotional exhaustion and eventual burnout

The pressure to be "extraordinary" in order to be seen as "normal" created a cycle of overcompensation that was ultimately unsustainable and detrimental to Rapp's mental health.

3. The complexities of disability representation and the "poster child" role

"I was proud of my disability when it afforded admiration and attention, but when it required that I ask for help, I felt ashamed."

The double-edged sword of visibility. As a child, Rapp became a poster child for the March of Dimes, which brought both positive and negative experiences:

• Increased visibility and admiration for her accomplishments
• Pressure to always present a positive, inspiring image
• Conflicting feelings about her disability as both a source of pride and shame

Navigating public perception. The role of disability representation came with complex challenges:

• Balancing personal experiences with public expectations
• Struggling with the dichotomy of being seen as either inspirational or pitiable
• Grappling with the authenticity of her public persona versus private struggles

This experience highlighted the complexities of disability representation and the pressure to conform to societal expectations of how a person with a disability should behave and feel.

4. Navigating relationships and intimacy with a physical difference

"I had never been completely naked with a man before and, I thought, one thing at a time."

Challenges in romantic relationships. Rapp's experiences with dating and intimacy were complicated by her disability:

• Fear of rejection due to her physical difference
• Difficulty accepting and revealing her body to partners
• Struggles with self-worth and desirability

The journey to sexual self-acceptance. Rapp's first sexual experiences were marked by:

• Anxiety about revealing her prosthetic leg
• Reluctance to remove the prosthesis during intimate moments
• Gradual steps towards vulnerability and authenticity in relationships

These experiences highlight the additional layers of complexity that individuals with disabilities often face in romantic and sexual relationships, including issues of body image, trust, and self-acceptance.

5. Travel and cultural immersion as catalysts for self-discovery

"I felt elated and terrified. In the book were detailed analyses of biblical texts and sociological studies explaining the emotional impact of feeling on the edge of the world or being viewed as a lesser person because of the shape and limits of your body."

Expanding horizons through travel. Rapp's experiences abroad, particularly in Ireland and South Korea, served as critical moments of self-discovery:

• Exposure to different cultural perspectives on disability
• Challenges to her established coping mechanisms and self-image
• Opportunities for independence and personal growth

Cultural shock and personal crisis. The intense experiences of cultural immersion led to:

• Confrontation with deeply held beliefs about herself and her disability
• Emergence of panic attacks and psychological distress
• Ultimate recognition of the need for self-acceptance and healing

These travel experiences, while initially destabilizing, ultimately served as catalysts for Rapp's journey towards a more authentic relationship with her disability and herself.

6. The psychological impact of living with a prosthetic limb

"I felt both protective and resentful of my leg that night. I felt that we had weathered some trial together, and through that experience it had become more than just an object, more than an expensive, human-made artificial device designed to make me appear whole."

The prosthesis as both tool and burden. Rapp's relationship with her prosthetic leg was complex and evolving:

• Gratitude for the mobility and independence it provided
• Frustration with its limitations and maintenance requirements
• Anxiety about its visibility and others' perceptions

Emotional connection to the prosthesis. Over time, Rapp developed a nuanced emotional relationship with her artificial limb:

• Personification of the prosthesis as a part of herself
• Conflicting feelings of attachment and resentment
• Struggles with identity as both an amputee and a prosthesis user

This psychological aspect of living with a prosthetic limb highlights the deeply personal and emotional nature of assistive devices for individuals with disabilities.

7. Confronting internalized ableism and the journey to self-acceptance

"For twenty-two years, I had been living as a willing stranger in the country of my own body; the geography and landscapes of its terrain felt foreign, although I'd lived within its borders all my life."

Recognizing internalized prejudices. Rapp's journey involved confronting her own internalized ableism:

• Acknowledging the impact of societal attitudes on her self-perception
• Recognizing patterns of self-deprecation and shame
• Challenging ingrained beliefs about disability and worth

The path to self-acceptance. Moving towards genuine self-acceptance required:

• Confronting deeply held fears and insecurities
• Reexamining her relationship with her body and disability
• Embracing vulnerability and authenticity in relationships and self-expression

This process of confronting internalized ableism and working towards self-acceptance was a crucial part of Rapp's personal growth and healing.

8. The role of family, community, and faith in disability experience

"I loved being alone with Melissa. She was glamorous in a sloppy, carefree way that I envied and admired."

Family support and challenges. Rapp's family played a crucial role in her disability experience:

• Parents' unwavering support and advocacy
• Sibling relationships affected by disability dynamics
• Family struggles with medical decisions and societal expectations

Community and peer relationships. Various communities shaped Rapp's experiences:

• Disability communities providing support and understanding
• School and social groups presenting challenges of inclusion and acceptance
• Religious community offering both comfort and complex theological questions

Faith and spirituality. Rapp's relationship with faith evolved throughout her journey:

• Early belief in miraculous healing and divine intervention
• Struggles with theological interpretations of disability
• Eventual development of a more nuanced, personal spirituality

These various support systems and communities played significant roles in shaping Rapp's experiences and understanding of her disability.

9. Challenging societal perceptions of disability and beauty standards

"I felt like the winner of a beauty contest, although I had received my title for an attribute that was certainly not coveted by others."

Navigating beauty standards. Rapp's experiences highlight the complex relationship between disability and societal beauty norms:

• Pressure to conform to conventional beauty standards
• Challenges of feeling attractive and desirable with a visible disability
• Efforts to redefine beauty to include diverse bodies and abilities

Changing perceptions. Through her journey, Rapp worked to challenge societal perceptions:

• Advocating for more inclusive representations of disability in media
• Confronting stereotypes and misconceptions about disability
• Promoting a broader understanding of beauty and worth

This aspect of Rapp's story underscores the importance of challenging and expanding societal perceptions of disability and beauty to create a more inclusive and accepting culture.

10. The power of storytelling and personal narrative in disability advocacy

"I knew a change was needed, but I was so afraid that if I finally accepted my body, if I dug deeply into my feelings of shame surrounding my disability, then I would be completely ejected from the normal world."

Finding voice through writing. Rapp discovered the power of storytelling as a tool for self-discovery and advocacy:

• Using writing to process and understand her experiences
• Sharing her story to challenge societal perceptions of disability
• Connecting with others through honest and vulnerable narratives

Impact of personal narratives. The act of sharing her story had profound effects:

• Empowering others with disabilities to share their experiences
• Educating non-disabled individuals about the realities of living with a disability
• Contributing to broader conversations about disability rights and representation

Rapp's journey as a writer and storyteller highlights the transformative power of personal narratives in disability advocacy and cultural change.

Last updated: November 19, 2024