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2024-11-22

"My Ordinary Daily Life, Whose Poem and Faraway" Rare Disease Exhibition Debuts with Artistic Curation

The exhibition "My Ordinary Daily Life, Whose Poem and Faraway: Lowering 30cm, Walking into the Life of Chondrodysplasia" is being held from November 12 to 17 at Nangang Bottle Cap Factory, with free public admission. This exhibition uses dynamic experiences, installation art, documentary photography, archival records, films, daily living aids, and mobility support across seven thematic sections to vividly and comprehensively present the life circumstances of individuals living with achondrodysplasia. The aim is to increase public understanding and support for rare disease communities. Additionally, there will be public guided tours every day at 3:00 PM, inviting the public and school groups to actively participate.

Vice Director of the National Health Insurance Administration, Chen Liangyu, Experiences a 30-Centimeter Reduction and Steps into the Life of a Rare Disease Patient with "Achondroplasia."

What is Achondroplasia?

Dr. Lin Xuanpei, the first director of the Rare Disease Center at Mackay Memorial Hospital and a professor at Mackay Medical College, explains that achondroplasia (ACH) occurs in about 1 in 25,000 births. The majority of cases are caused by a genetic mutation, meaning that although both parents' genes are normal, a mutation occurs in the fibroblast growth factor receptor-3 (FGFR-3) gene during the formation of sperm or eggs. This mutation affects cartilage growth, resulting in short stature, with an average adult height of only around 130 cm, and disproportionately short limbs.

In addition, patients often suffer from a condition where the foramen magnum (the hole at the base of the skull through which the brainstem and spinal cord pass) is too narrow, which can compress nerves, affect breathing, and lead to hydrocephalus and other complications. The risk of death in the first year after birth is about 2%-7.5%, which is six times higher than in the general population. Even as adults, they are at risk of developing lumbar spinal stenosis, which can compress nerves in the lower limbs, affecting mobility.

Dr. Lin stresses that “With the continuous improvement of the modern medical system, as long as patients undergo regular check-ups and receive necessary treatments, these risks can be significantly reduced.”

Three Mountain Creative's Chen Yifeng and Ru Yun’s Gu Wanru Collaborate on an Art Curating Project, Inviting Wu Zhuohao from Caozhi Huangdi Earth Formation and Cheng Liyu, Architect from Chengsi Architecture Firm.

 

Yang Fangmei, the Mother of a Patient and Chairperson of the Patient Association, Hopes the Art Exhibition Creates a More Friendly and Inclusive Social Atmosphere.

Yang Fangmei, the Chairperson of the Chinese Taipei Achondroplasia Association, has a deep personal connection to the disease. Twenty-seven years ago, her son, who was less than one year old, was diagnosed with achondroplasia due to abnormal limb and head shape. She has walked this journey alongside her son and other association members, experiencing first-hand the unfriendly school environments, verbal bullying from classmates, and the resulting long-term lack of self-confidence. As an adult, her son also faced setbacks in his job search.

Yang Fangmei, the Chairperson, has a profound understanding of the misunderstandings and inequalities that patients and their families may face. She expressed that she hopes the art exhibition will open a dialogue between the public and the rare disease community, fostering empathy and perspective-taking, and creating a warmer, more welcoming atmosphere for rare disease patients.

Exploring Rare Diseases: The Exhibition “My Ordinary Life, Whose Poem and Distant Place: Lowering 30 cm, Stepping into the Life of Rare Disease 'Achondroplasia' Patients" Free Public Exhibition at Nangang Bottle Cap Factory from November 12 to November 17.

Exhibition Highlight 1: Step into the 30 cm Lowered Red Carpet Pathway and Experience the Daily Life from a Shorter Perspective

Former curator of Songshan Cultural Park, Chen Yifeng, and Ru Yun’s Gu Wanru have collaborated on curating this exhibition. The team explained that the exhibition’s theme, "My Ordinary Life, Whose Poem and Distant Place," not only raises a public question but also reflects the "ordinary" that the rare disease community aspires to, which is worthy of deep reflection. This includes the desire to live without being stared at for their height or appearance, to experience school, work, and daily life without setbacks or limitations due to illness, and the hope for fair healthcare policies and medical equity. As part of this, the exhibition features a central 30 cm lowered red carpet pathway, inviting visitors to lower their height and enter a restricted, semi-open space to experience the daily perspective of achondroplasia patients, and the discomfort and unease of being subtly observed despite wanting to remain low-key.

Exhibition Highlight 2: The Installation Art "EVEN Bench" Highlights the Acceptance and Coexistence of Differences in a Diverse Society

The exhibition has invited Wu Zhuohao from Caozhi Huangdi Earth Formation and Cheng Liyu, Architect from Chengsi Architecture Firm, to collaborate on a unique creation for this exhibition: the abstract narrative "EVEN Bench." The piece is made using laser-cut black iron and water-jet processed stone, joined and overlapped. Despite the different materials, through precise and rational manufacturing and structural analysis, the differing scales and materials come together to form a stable and harmonious work, symbolizing the interdependent and supportive relationships between different groups in society. The smooth, sleek edges of the stone and its rough, primal top surfaces also translate the elegance and habits we are accustomed to when interacting with the general public, as well as the primal state exposed by the lack of experience facing rare disease patients. Wu Zhuohao commented: "A chair is a common daily object, but from a shorter person’s height, it could be one of the many challenges in daily life. Through the height difference and balance design of 'EVEN Bench,' we hope to allow viewers to experience the fairness and differences inherent in life. The homophony of the piece's name also speaks for the rare disease community’s urgent call for 'equality.'"

Exploring Rare Diseases: The Exhibition “My Ordinary Life, Whose Poem and Distant Place: Lowering 30 cm, Stepping into the Life of Rare Disease 'Achondroplasia' Patients” Free Public Exhibition at Nangang Bottle Cap Factory from November 12 to November 17.

Exhibition Highlight 3: A Collection of Everyday Assistive Devices at a "Life Wisdom King" Level

To present the true daily life of achondroplasia patients, the curatorial team, in collaboration with the association, has gathered about 15 special daily assistive devices to share with the public. Taiwanese Paralympic badminton player and also a patient, Cai Yilin, has a special connection to this section of the exhibition. She shared that people with achondroplasia face many challenges due to their short height, short limbs, triphalangeal fingers, limping, or weak legs, making daily activities such as eating, dressing, living, and moving difficult. Parents and friends constantly find innovative tools to help them become more independent and navigate daily life. These tools include magical utensils that can switch between chopsticks and spoons in a second, small tools for clipping toilet paper while using the restroom, grabbers for reaching high places, folding chairs for buses, faucet extenders, and effortless can openers. These ingenious everyday gadgets seem like "life wisdom king" tools. When Cai Yilin competes abroad, she often wishes she could bring all of them to show off to international athletes in the athlete's village.

Rare Disease Foundation: The Health Insurance Policy's Support for Rare Diseases Not Only Stabilizes Society But Also Reflects National Humanity and the Value of Life

Chen Liyin, founder of the Rare Disease Foundation, stated that, according to the Ministry of Health and Welfare's National Health Service’s rare disease report in September 2024, there are 438 people with achondroplasia in Taiwan, with around 70 patients under the age of 14. Behind these numbers are patients who suffer physically and mentally from not growing tall and from serious complications, as well as parents and friends who are anxious and concerned about their children’s future and treatment. These families form a vulnerable group facing rare diseases. Thus, health insurance policies that care for rare diseases not only stabilize society but also reflect the country’s humanitarian concern and respect for life. The foundation hopes that all visitors to the exhibition can exert their social influence, so that "understanding," "respect," and "equality" will become the most beautiful civic qualities and social values in Taiwan.

前松菸策展人陳宜豐與如芸制作谷宛儒此次共同協作策展,團隊表示,展覽命題「我的平凡日常,誰的詩與遠方」。主辦單位/提供

 

Exhibition Title: "My Ordinary Life, Whose Poem and Distant Place: Lowering 30 cm, Stepping into the Life of Rare Disease 'Achondroplasia' Patients

Exhibition Location | Bottle Cap Factory Taipei Manufacturing Building I (No. 13, Section 2, Nangang Road, Nangang District, Taipei City)

Opening Press Conference | November 12, 2024 (Tuesday), 14:00 - 15:30

Exhibition Dates | November 12, 2024 (Tuesday) to November 17, 2024 (Sunday), 10:00 AM - 6:00 PM

Organizers | Taiwan Achondroplasia Patient Care Association

Co-organizers | Rare Disease Foundation, Taiwan Association for the Promotion of Rights of Vulnerable Patients

Event Coordination | PatientsForce, Caching Integrated Marketing Co., Ltd.

Exhibition Curators | Like Art Productions, Gu Wanru; Three Mountain Creative Chen Yifeng

Featured Creators | Grass Field Urban Design, Wu Zhuohao; Cheng Si Architects, Architect Cheng Liyu

Exhibition Design | CCUN Studio, Zhang Qijun

Collaborative Venue | Bottle Cap Factory Taipei Manufacturing Building

Collaborating Organization | GS Exhibition Business Group