Reframing invisible and visible disabilities | Sophia Hotung & Jessica Chan | TEDxTinHau Women

Key Concepts

• Achondroplasia: A form of dwarfism characterized by a full torso, shorter limbs, and a petite stature.
• Rollator: A walking aid, similar to a walker, with wheels.
• Temporally Abled Bodied (TAB): A term used within the disabled community for individuals who do not currently identify as having a disability.
• Not Abled Bodied (NAB): A term for individuals who are disabled.
• Invisible Disabilities: Health conditions that make an average day harder but are not immediately apparent to others.
• Chronic Illnesses: Long-lasting health conditions that may not have a cure but can be managed.
• Agency: The capacity of an individual to act independently and make their own free choices; the feeling of being independent, heard, trusted, and respected.
• Accessibility: The quality of being able to be reached or entered, or of being able to be used or understood by everyone, especially people with disabilities.
• Candid Conversations: Open, honest, and direct discussions about needs, expectations, and limitations.
• KCARE Framework: An acronym (Complete, Accommodate, Response, Empathy) providing a guide for inclusive interactions with disabled or differently-abled individuals.
• Neutrality in Perception: The idea that disabilities and differences should be viewed as neither good nor bad, but simply as they are.

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I. Introduction: Shifting Perspectives on Disability and Difference

The presentation, delivered by Jessica Chan and Sophia Hotong, challenges conventional perceptions of disability. It argues that disabilities and differences should be viewed neutrally – "not good, not bad, they just are." This core message is introduced through an analogy: just as it would be "unhinged" to pity someone for liking the color purple or patronize them for wearing a bra, it is equally inappropriate to do so for conditions like achondroplasia or using a rollator.

The speakers introduce two key terms from the disabled community:

• Temporally Abled Bodied (TAB): Individuals who do not currently identify as having a disability.
• Not Abled Bodied (NAB): Individuals who are disabled. The presenters highlight a crucial insight: while all TABs will eventually transition into NABs at some point in their lives, there is a collective lack of knowledge on how to act around, talk to, or include disabled or differently-abled individuals. The goal of the talk is to provide examples and actionable takeaways to foster greater inclusivity.

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II. Jessica Chan's Experience: Navigating Life with Achondroplasia (Visible Disability)

Jessica Chan, who is shorter than the average height female, shares her experiences living with achondroplasia, a form of dwarfism. This condition affects approximately 1 in every 35,000 people and is characterized by a full torso, shorter limbs, and a petite stature.

A. Personal Achievements and Self-Assurance: Despite her condition, Jessica emphasizes her ability to "run fast, jump high, lift heavy," albeit on her own terms. She sets personal records, such as running an 8-minute kilometer, and participates in various activities including individual sports, High Rocks, company sporting events, surfing globally, lecturing at a local university, and speaking at TEDx. She found individual sports to be a powerful medium for building community and overcoming fear of judgment and stigma.

B. Addressing Public Staring and Caregiver Responses: Jessica frequently encounters children in public who innocently ask, "Mommy, daddy, why is that lady so small?" She notes that while children's curiosity is natural, the typical adult response of "Stop staring, that's rude" and diverting attention is problematic. This approach makes her feel dismissed.

She recommends a different approach for caregivers:

1. Provide Context: Explain that there are many differently-abled people in the world who look and act differently.
2. Normalize the Moment: Acknowledge that a knowledge gap is acceptable. A simple, neutral response like, "Because she just is. It's not a good thing, it's not a bad thing, it's neutral," helps to normalize differences. This fosters an inclusive world by viewing differences neutrally.

C. The Challenge of Losing Agency: Jessica identifies the inadvertent taking of her agency as her biggest challenge. Agency is defined as the feeling of independence, being heard, trusted, and respected.

• Early Experience: At age nine, when she wanted to rollerblade, an orthopedist told her parents, "If she wants to rollerblade, she can. She's just like anybody else." This statement instilled a crucial sense of agency in her.
• Adult Experience: She recounts an incident at an airport where a woman insisted on helping her lift a 23 kg luggage bag off a carousel, despite Jessica repeatedly stating, "No, thank you, I got it, I can do it." The woman's persistence and subsequent annoyance when Jessica didn't express gratitude highlighted a profound disrespect for her agency. Jessica was annoyed that the woman didn't listen or believe in her capability, leading to a negative interaction for both.

D. Life Limitations and Core Message: Jessica acknowledges practical life limitations, such as reaching for cups on tall shelves, pushing high elevator buttons, or adjusting task chairs. However, she stresses that the story is less about differences and more about shared humanity. Her key takeaway is that "accessibility is the key." She encourages people to "see people as people, not as labels, assumptions, or stigmas," and to learn from their unique perspectives. She concludes by stating, "My point of view just happens to be around 122 cm tall."

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III. Sophia Hotong's Experience: Living with Invisible Disabilities (Chronic Illnesses)

Sophia Hotong addresses the common misconception that disability is solely identified by physical markers like missing limbs, old age, or a wheelchair. She highlights that these stereotypes often overlook invisible disabilities, which are health conditions that make an average day harder but are not immediately apparent.

A. The Struggle with Undiagnosed Illness and Shame: Sophia lives with seven chronic illnesses, having been diagnosed with her first autoimmune disease at 16. By age 24, four of her conditions remained undiagnosed.

• Internalized Stigma: She initially felt she wasn't "disabled enough" to use the label, fearing she was "stealing the name from real disabled people."
• Hiding Illness: At work, she struggled to hide how awful she felt. When her office organized a charity 5K, she panicked, fearing that voicing her health concerns would appear as an unwillingness to participate.
• The Breaking Point: She ended up in the hospital for a month, undergoing painful tests and receiving scary diagnoses, yet her primary concern was still the 5K and whether she now had a "good enough excuse" not to run. This experience revealed the ridiculous extent to which she had to let her health deteriorate before feeling allowed to voice concerns.
• Becoming Invisible: She states, "In a sense, by trying to make my illnesses invisible, I had become invisible too." She experienced fear, anger, and depression, but the most pervasive feeling was shame. She felt immense pressure to be helpful, look pretty, and avoid attention-seeking, which became impossible as her body needed help, her organs were failing, and she required constant medical attention. This shame led her to suffer in silence, eventually causing her to "disappear from her old life entirely."

B. Re-emergence and Advocacy through Candid Conversations: Sophia's re-emergence from invisibility began only when she started accepting her illnesses, asking for help, and taking it without shame. Her advocacy work led to a frequently asked question: "How do I know that someone isn't faking illness when I can't see it?"

She addresses this, particularly in workplaces where employees might sacrifice health for productivity or employers might sacrifice productivity for tolerance, by advocating for candid conversations:

• For Invisibly Disabled Individuals:
  • Do not sign up for work they cannot do.
  • Engage in candid conversations about adjusting expectations, roles, or compensation.
  • Ask for specific, timely, and reasonable accommodations by discussing adjustments to protocols, schedules, or environments.
  • Accept that sometimes a space may not exist, and have candid conversations about barriers, boundaries, and even goodbyes.
• General Advice: She cautions against blanket advice, as "secretly sick people are not a monolith." Instead, she encourages seeking out more data points and experiences, sharing one's own story, and refraining from shaming oneself or others.

Sophia's ultimate hope is to establish a new normal where invisible disabilities do not render individuals invisible.

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IV. The KCARE Framework: A Guide for Inclusive Interactions

To provide actionable guidance for interacting with disabled or differently-abled people, the speakers introduce the KCARE acronym:

• K - Complete: Before saying or doing anything, see disabled people as whole, complete individuals. Approach them neutrally, without preconceived notions.
• A - Accommodate: It is acceptable to discuss differences, but ensure that the language used accommodates rather than alienates.
• R - Response: Wait for a response. Allow the person you are trying to help to tell you how they wish to be helped, respecting their agency.
• E - Empathy: If someone rejects, dismisses, or corrects you, do not be discouraged, offended, or outraged. Instead, with empathy, try to see the person beyond that single interaction.

The framework concludes by reiterating the most important message: it is crucial to see everyone – both TABs and NABs – as whole individuals.

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V. Synthesis and Conclusion

The presentation offers a profound call to action for a more inclusive society. By sharing their personal narratives, Jessica Chan and Sophia Hotong effectively illustrate the challenges faced by individuals with both visible and invisible disabilities, emphasizing that the core issue often lies not in the disability itself, but in societal perceptions and interactions. The central argument for viewing disabilities and differences neutrally—as simply "what is"—is a powerful paradigm shift away from pity or patronization.

Key takeaways include the importance of respecting individual agency, normalizing differences through appropriate communication, and fostering open, candid conversations about needs and limitations. The KCARE framework provides a practical, step-by-step methodology for fostering respectful and empathetic interactions. Ultimately, the speakers advocate for a world where differences are understood, celebrated, and do not lead to the marginalization or "invisibility" of any individual, thereby creating a truly accessible and inclusive environment for all.