They CAN Handle the Truth: They Should Know About Their Disability | Reagan Warren | TEDxDeerfield

Key Concepts:

• Charcot-Marie-Tooth disease (CMT): A hereditary motor and sensory neuropathy affecting the nervous system.
• Open communication: The importance of honesty and transparency between parents and children regarding disabilities.
• Self-advocacy: The ability to understand one's needs and advocate for oneself.
• Accessibility: Creating an environment that is inclusive and accommodating to people with disabilities.
• Disability Identity: Understanding and accepting one's disability as part of their identity.
• Butterfly Effect: How seemingly small events can have significant and far-reaching consequences.

Introduction: The Butterfly Effect of Disability

The speaker, Reagan Warren, introduces the concept of the "butterfly effect" by drawing a parallel between the seemingly universal experience of losing baby teeth and her personal experience of losing the ability to walk due to Charcot-Marie-Tooth disease (CMT). She contrasts the shared experience of childhood milestones with the isolating experience of disability, highlighting the importance of understanding and addressing the unique challenges faced by individuals with disabilities.

Reagan's Personal Story: Diagnosis and Upbringing

Reagan shares her personal journey with CMT, a hereditary motor and sensory neuropathy. She recounts her initial symptoms, including developmental delays and the eventual loss of mobility. She emphasizes the significance of her parents' decision to openly communicate with her about her condition at the age of seven. This open communication fostered self-awareness, self-advocacy, and a positive disability identity.

• Diagnosis: Reagan was diagnosed with CMT, a hereditary condition affecting her nervous system, leading to deformities in her hands and feet, hip dysplasia, and neuromuscular scoliosis.
• Parental Communication: Her parents made a conscious decision to be open and honest about her condition, diverging from her father's own upbringing where his CMT was not openly discussed.
• Adaptive Strategies: Reagan's parents actively supported her by finding optimal parking spots, providing extra tickets for events, and offering comfort after physical therapy.
• Self-Advocacy: Reagan learned to advocate for herself, knowing what she needed and planning ahead. She keeps her doctors on speed dial and carries lidocaine patches and Advil.

The Alternative Scenario: The Impact of Secrecy

Reagan presents a contrasting scenario where a child's disability is kept secret from them. She illustrates the potential negative consequences of such secrecy, including feelings of isolation, confusion, and insecurity. She argues that withholding information about a disability can lead to a world of suffering and hinder the development of a positive self-image.

• Negative Consequences: Keeping a child in the dark about their disability can lead to feelings of disgust, apprehension, taunting, fear, and a lack of empathy from others.
• Damaging Effects: This lack of awareness can condition the child to believe that their disability is simply who they are and that they must live with it in silence.

The Importance of Open Communication: A Call to Action

Reagan emphasizes the importance of open communication between parents and children regarding disabilities. She shares her mother's warning that not all parents would agree with their approach, highlighting the prevalence of the belief that withholding information is a way to protect children. She refutes this notion, arguing that it is essential for children to understand their own medical history and identity.

• Parental Responsibility: Reagan urges parents to "do everything in your power to tell your kids who they really are."
• Avoiding Feelings of Burden: She emphasizes that no child should ever feel like a burden due to their disability.
• Active Involvement: Parents should not be bystanders in their child's life but should be open, honest, and active in supporting them.

Examples of Open Communication: Specific Disabilities

Reagan provides specific examples of disabilities that should not be hidden from children, including dyslexia, epilepsy, ADHD, asthma, cerebral palsy, and OCD. She dismisses excuses for withholding information, such as the belief that the disability is obvious or that the child will figure it out on their own.

• Specific Examples: Reagan lists various disabilities that should not be hidden from children, emphasizing that it is not obvious and that children may not figure it out on their own.
• Avoiding Dr. Google: She warns against relying on Dr. Google for information, as it may not provide accurate or valuable information.

Addressing the Challenges of Disability: A Realistic Perspective

Reagan acknowledges that knowing one has a disability does not eliminate the challenges associated with it. She recognizes that individuals with disabilities will still face bullying, harassment, discrimination, and ableism. However, she argues that open communication empowers individuals to face these challenges with their "head held high," knowing their strengths and capabilities.

• Ongoing Challenges: Reagan acknowledges that knowing one has a disability does not eliminate the challenges associated with it, such as bullying, harassment, discrimination, and ableism.
• Empowerment: She argues that open communication empowers individuals to face these challenges with their "head held high," knowing their strengths and capabilities.

Conclusion: Embracing Identity and Fostering Support

Reagan concludes by urging caregivers to choose empowerment over silence and shame. She emphasizes the importance of fostering a supportive environment that nurtures a strong sense of self. By embracing their identity and understanding their capabilities, individuals with disabilities can thrive and contribute to the world.

Notable Quotes:

• "The thing about CMT that differentiates it from any other disability is that it's hereditary and I gave it to my daughter. There is nothing I can do to take that away. I don't care what happens to me. It's about my daughter." - Reagan's father, Phil.
• "Do everything in your power to tell your kids who they really are." - Reagan Warren.

Synthesis/Conclusion:

Reagan Warren's TED Talk powerfully advocates for open communication between parents and children regarding disabilities. Through her personal story and contrasting scenarios, she demonstrates the profound impact of honesty and transparency on a child's self-esteem, self-advocacy, and overall well-being. She urges parents to embrace their child's disability as part of their identity and to provide them with the knowledge and support they need to thrive in an often inaccessible world. The talk serves as a call to action for parents, educators, and society as a whole to create a more inclusive and understanding environment for individuals with disabilities.