FEATURE/Taiwanese lawyer leaves enduring legacy in championing disability rights

By Sunny Lai, CNA staff reporter

On a rainy Tuesday morning in Hsinchu, hundreds of people clad in black, including many in wheelchairs, gathered from across Taiwan at the public memorial service for lawyer Chen Chun-han (陳俊翰), a stalwart of disability rights who passed away at the age of 40 during Lunar New Year.

Chen, who had lived with spinal muscular atrophy (SMA) since childhood and died following suspected cold-related complications, was mourned by many, including President-elect Lai Ching-te (賴清德), who referred to him as an "angel" and said the ideals and values Chen persistently advocated for "will be carried forward."

Despite being only able to move his eyes, mouth, and one pinkie finger, Chen had worked tirelessly to advocate for the rights of the disabled.

Chen was particularly dedicated to promoting independent living, a philosophy that encourages people with disabilities to live independently by ways such as enhancing accessibility in public areas, fostering self-reliance in daily life, and advocating for supportive policies within the society.

He also advocated for amending the People with Disabilities Rights Protection Act, to ban discrimination in all aspects of life, including employment and housing.

In addition, Chen tried to convince the government to expand free medication coverage for SMA patients under Taiwan's National Health Insurance (NHI).

SMA patients' struggles

Currently, the requirements for the approximately 400 SMA patients in Taiwan to access medicines under NHI are stringent, said Lee Wei-te (李威德), secretary-general of the Taiwan Muscular Dystrophy Association (TMDA).

The government prefers to provide medicine only to those with a higher chance of improving their physical conditions, therefore it sets a high threshold with a mobility test called Revised Upper Limb Module (RULM) assessment for patients to qualify for insurance coverage, Lee said, noting that the price of medicines is a concern for the government.

According to information provided by the National Health Insurance Administration (NHIA), an intrathecal (into the spinal canal) injection known as Spinraza costs NT$2 million (US$63,300) per dose, and patients require injections every four months throughout their life.

The NHI's stringent criteria for qualifying for coverage means less than half of those with the rare neuromuscular genetic disease are eligible to receive medicine that could alleviate the decline of physical functions in their bodies.

Chen's influence

By proposing initiatives, attending government policy review sessions, and even running as the legislator-at-large candidate for the ruling Democratic Progressive Party (DPP) in the Jan. 13 elections, Chen tried to use his influence to improve the circumstances for individuals with disabilities, including around 300 of his fellow SMA patients who still do not get free treatment covered by NHI.

"I was born and raised in Taiwan and I wanted to do more for my country," Chen once said of his decision to pursue a career as a human rights lawyer in Taiwan after returning from the United States, where he was eligible to work as a lawyer and have access to SMA drugs.

After Chen's passing, on Feb. 15, Huang Yu-wen (黃育文), director of NHIA's Medical Review and Pharmaceutical Benefits Division, informed the press that the manufacturers of Spinraza and Evrysdi, two types of SMA medicine, have applied for an expansion of coverage to include all SMA patients under NHI.

Huang told the press that the NHIA has scheduled an expert meeting on the issue in March and that the earliest approval date of the expansion would be in the first half of this year.

Lee believes that Chen's contributions in the past and his recent passing can be part of the reason why the authorities recently appear to be more open to exploring ways to expand coverage.

"Many people are urging the NHIA to expand the coverage of SMA medications, allowing more SMA patients to access appropriate treatment. I believe these voices may have a certain impact on the decisions of NHIA, prompting them to prioritize the needs and rights of SMA patients," Lee said.

However, it remains to be seen whether the NHI will approve coverage for all of the patients.

More than the 15 minutes of fame

Although Chen had been nominated as a DPP legislator-at-large candidate in the elections, he remained relatively unknown to many Taiwanese people. It was not until the controversy sparked by Chinese journalist Wang Zhian (王志安), who mimicked Chen's voice and used a derogatory term to refer to him on "The Night Night Show with Hello" on Jan. 22, that Chen was catapulted into the spotlight.

But for people who knew Chen, he wasn't just a fighter for disability rights, he had a profound influence on their lives.

A new perspective

"His presence has given me a different perspective on disability," Chang said.

Louis Chang (章至鈞) felt overwhelmed upon hearing that Chen, whom he had known for more than 20 years, had passed away.

"He was in a situation where he could slip away at any time, but he didn't. After many years, it has happened, and we feel that we are at a loss," the 41-year-old said, reflecting on the moment he learned of the passing of his former classmate from National Hsinchu Senior High School.

Despite the shock, Chang hurried to Chen's home to express condolences to his family. He warmly embraced Chen's mother, a familiar figure from their high school days who always accompanied and looked after Chen during lessons.

Days after the visit that stirred memories of the past, Chang told CNA that Chen was a normal classmate back in the day: "We gossiped about our classmates, like if someone had started dating, and we joked about using his wheelchair to go faster on sports day. It was all very natural."

Chang, who now works in advertising, said he knows some words or phrases used back then should not be said in this day and age, but he thinks it was "valuable for Chen to have these kinds of interactions... when he was treated no differently from anybody else."

The two kept in touch after graduation, and Chang went on to witness Chen achieve more and more in life.

Chen was the top scorer of the Taiwan bar exam in 2006. He got the chance to study for a master's degree in law at Harvard University in 2012.

He returned to Taiwan after obtaining his Ph.D. in law from the University of Michigan in 2022 and was a postdoctoral scholar at Taiwan's Academia Sinica.

Chang also witnessed his friend's physical condition deteriorate significantly in subsequent years.

Like many others, Chang had once pitied individuals with disabilities, but the impact of Chen's presence in his life challenged this perception. Chang came to recognize that people with disabilities often demonstrate a strength that far surpasses that of non-disabled individuals.

"Learning to recognize the strengths and address the weaknesses of the disabled are equally important," Chang said, noting that it was rare for him to have the opportunity to learn these lessons at such a young age.

"His presence has given me a different perspective on disability," Chang said.

Unanswered questions

"There were so many questions I still wanted to ask him, but now, I'll never get the opportunity," Wang said.

 At 23 years old, John Wang (王宣翰), unlike Chen, still knows very little about the disease that has led to him being classed as having a "profound physical disability."

Unable to freely move his limbs, Wang uses his mouth to hold a pen when writing and his tongue to touch his phone screen, but neither of these facts hindered him from excelling throughout his academic journey.

After graduating from National Hualien Senior High School in 2019, Wang went on to study law at National Taiwan University (NTU), as Chen did, and is currently a fifth-year student preparing to take the bar exam and the exam for judges and prosecutors after graduation.

"When deciding whether to study law [in the future], I realized that my long-held dream of becoming a judge or prosecutor might not come true -- I wavered at that time," Wang told CNA, recalling the hesitation he felt during his first year of high school in 2016.

"Profound physical disability" was once a disqualifying condition for the physical test in the examination for judges and prosecutors in Taiwan, Wang explained.

But after learning about Chen's academic and advocacy journey, Wang realized that regardless of whether he gets the opportunity to be a judge or prosecutor, there is value in a person with disability deciding to study law, which strengthened his resolve to give a judicial career a shot.

Wang said the provision designating "profound physical disability" as a disqualifying condition was eventually removed in 2018, paving the way for him to pursue his dream of becoming a judge or prosecutor.

Having met Chen twice during talks at NTU and Soochow University last year, Wang said that he exchanged contact information with Chen and once dreamed of the opportunity to become his student or research assistant.

"I felt I was just getting to know him, and I was curious as to what the blueprint of the society, legal framework, and institutions he envisioned was," Wang added.

"There were so many questions I still wanted to ask him, but now, I'll never get the opportunity," Wang said.

Motivated by Chen, Wang said he has developed a greater sense of commitment to the cause as there are not that many people with disability with similar expertise working in law.

"I know that there are certain things and issues, perhaps only I can tackle, only we can tackle... and who knows when someone else will be there to do it," Wang said.

Paving the way for change

"He wants to pave the way for Taiwan's future in the direction of disability rights," Lee said.

Lee Wei-te recalled his first encounter with Chen in 2005: "His wheelchair had a table in front and a book holder -- I found it weird and wondered why he would bring a book to an event."

Never did Lee anticipate the return of this avid reader from the United States, as happened two years ago, or for him to become a TMDA legal advisor, giving legal advice to members and representing the TMDA in conferences about disability rights, including one hosted by the Control Yuan on the discussion of the Convention on the Rights of Persons with Disabilities (CRPD).

Lee added that at the end of last year, Chen had informed him about his involvement in a Ministry of Labor project to translate the content on the "Job Accommodation Network," a website set up by the United States government that provides guidance on disability employment issues.

"He mentioned that he would come to see me and discuss some matters with me... but he was always busy, and we just couldn't schedule a meeting," stated Lee.

"I feel that he has been working very hard in this area, whether it's about the employment of people with disabilities, human rights, or other related matters...While his time back in Taiwan may have been relatively short, the impact he had is clear," the 58-year-old said.

"He wants to pave the way for Taiwan's future in the direction of disability rights," Lee said.

Lee recalled the last conversation he had with Chen's mother before Lunar New Year. "She mentioned he had a 30,000-word article pending. I couldn't help but think, 30,000 words? That sounds exhausting!"

"If Chun-han were still alive, I would tell him to set aside some time and come barbecue some food with me," Lee said.

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