Handicapped-Politics-Politics of Handicapped
Mythical and Paradoxical Extended Thinking
by Jennifer Chien
（Chinese Culture University social work credit courses）

After reading the article from Professor Wang Shunming, there are some thought and consideration we need to discuss. It started from a series of news from human right lawyer Chen Jun-Han. One of news about the presidential and legislative election on January, ruling party had listed as nominee, lawyer Chen Jun-Han, who had had rare disease (SMA) for non-district legislative committee. Unfortunately, he died suddenly during the Chinese New Year. Of course, as expected, a series of public memorial scenes, our president and vice president were listed as honorary chairs of the Funeral Committee. They attended the farewell ceremony to highlight the lawyer Ching Jun-Han as “Taiwan’s Great Loss”.

The action of high-level treatment of president and vice president showed up at the ceremony at the same in which what do they try to express? It is just the words on surface, or it represents some meaningful ideas that our society should learn from his life experience, or we need some changes to make the rare disease people who can live better and help for our society, community, and country. Moreover, we need to exam from the human right lawyer as “an individual” to all the handicapped people as “system” into the group of disabled “The Convention on the Rights of persons with Disabilities (environment)”. Otherwise, it is our custom which is today’s memorial will be forgotten tomorrow.

Many SMA experts’ studies and research to draw a mind cognitive map in which uses many SMA patients’ experience to include pathogenic mechanism, body function effective, therapeutic mechanism, assistive technology, public designs of movement, receiving education, subtractive care, social development, care experience, family dynamics, recovery resilience, life appreciation, self-control life, dead education, and mental cognition of life courses. Form about all these factors, try to image human right lawyer Chen Jun-Han’s unknown hardship and sadness of being a patient with a rare disease. So, we need to set effective care management system from public sphere’s affirmative action to private sphere’s seeking medical, searching schools, and looking for employment for rare diseases and disabled.

In other words, we could see the public treating handicapped in fair; however, in privately, every rare disease has its own problems when they face the inconvenience of getting to hospitals, going to schools, getting a job, or just simply trying to be alive. This ongoing care management setting on every different rare disease that needs to be seriously to discuss and reform our Disability Rights Protection Act. If we do not fight for their rights, let’s our great loss.

Recently, our president and vice president had shown on the victims of campus and literary giant Sima Zhong yuan’s farewell ceremonies, they did not have any actions or attitudes on campus crisis or culture heritage after their speech. As same as, I believe that lawyer Chen Jun-Han’s dead will be nothing changes. Again, the concept of “handicapped-politics-politics of handicapped” has paradoxical point. In the end, this farewell is just a surface show, or the government will really practice his three human right demands for people with disabilities, we will wait and see what happed. How to initiative handicappers to the civil society advocacy of social model and human right model are the bottom-line approach.

According to attorney Chen Jun-Han has three major visions. First, he wished rare diseases will fully cover by health insurance benefits. I think every rare disease is unique and need to use special budget or funding to pay for. For example, in Taiwan, one in every 84,420 newborns is affected by SMA. In other word, we will have 25 SMA born in every year. Their drugs, new treatment of Gene Therapy are highly cost in which every SMA cannot afford to pay. Although our National Health Insurance Administration, Ministry of Health and Welfare has started to provide benefits for SMA since July 2020, it is based on age.

Currently, the drugs can only be used if the disease is diagnosed within 12 months of birth and the age when treatment is started is until 7 years old. Moreover, one of rare disease is Down Syndrome in which is not fully covered by the health insurance. I believe that health insurance should not cover all the rare diseases because their treatment, mental and physical counseling, all special professional workers all need to help in every unique circumstance. So, every rare disease needs to have their own budget.

Second, he wished we will have a friendly environment for rare diseases. More clearly, he believed using AI to promote equal rights. Trough AI can be used to contribute government information, social service application, and telemedicine. Also, AI can solve chronical or rare diseases in remote areas through telemedicine. So, they can use AI to see the world and interact with people without any limitation. The last vision is The Law of the Protection of the Right of Persons with Disabilities needs to be revised. Obviously, it hasn’t been revised in 17 years.

Recently, the news of The Ministry of Health and Welfare said the law was not included in the submission process this year. Some civil societies call for the law to be included in CRPD. (The Convention on the Rights of persons with Disabilities) Therefore，if the dead of lawyer of Chen Jun-Ha is the huge loss to Taiwan as our president said, their equal rights and human rights of disabled will not be fulfilled and the consequence will be disastrous.