Living in an ableist world: Josy Story

Living in an ableist world – how would Josy promote disability rights after the Fellowship?

“We are not living in a world where there are disabilities, but a world full of ableism where people see disabilities as diseases.”

Josy

Fellowship Program 2020 >

Introduction

Growing up with spinal muscular atrophy (SMA), often a fatal diagnosis, Josy spent the first 17 years of her life in hospital, and has used a wheelchair and relied on life support machines. She has experienced firsthand the immense stigma that people with diverse types of disabilities face in Hong Kong. “There are not many doctors in Hong Kong who specialize in rare diseases, hence, not many resources are allocated to develop drugs for these patients,” she says.

Other than the prejudice against people with disabilities, the families of people with disabilities also face a number of challenges. The needs of caretakers are often neglected. “It is even harder for caretakers. Unlike Hong Kong, many corporations, for example, in Taiwan will give subsidies to the caretakers. It is all about changing the mindset of our society as many mistakenly perceive people with disabilities as incompetent, whether at work or in their daily life. This is one of the quintessential issues for the disability community,” Josy asserts.

It is especially hard for people with disabilities who are also recipients of government funding. In order to meet the requirements of a fund like the CSSA or Community Care Fund, some caretakers would not be able to work as they are required to take care of their family members with disabilities at home. Otherwise, their salary may be higher than permitted by the income test. Families are often left with no choice since they cannot apply for other government subsidies. “But I can see things get better as there are more advocates talking about disability rights,” says Josy.

joining fellowship

Despite the long and challenging process of lobbying, Josy and her family along with a few other parent advocates successfully fought for the first treatment implementation for SMA several years ago. Through this journey, Josy understood advocacy can be stressful. So, it is important to build a community that shares a progressive vision of disability rights in Hong Kong.

After being nominated by a member of the Resolve community, Josy joined the 2020 Fellowship Program on Disabilities and Empowerment through nomination from a member of the Resolve community. “There are not many Fellowship Programmes I know of that focus on disability rights. I have heard of programmes on social leadership but they are not specific to people with disabilities,” she says.

Even though the Fellowship went virtual due to the pandemic, Josy thought that online spaces were actually more accessible for her to express herself. “I felt more comfortable to share my ideas and personal stories to other fellows. I really like the session when we get to share our rivers of life,” she says.

To Josy, what Resolve offers is the opportunity to connect with a community where everyone shares similar values and visions. The workshops and discussions are intersectional and interactive, which inspired her to think in a broader perspective. The speakers who are from different walks of life are knowledgeable and professional as they offered tips and advice on how to be a social justice leader.

“Through Resolve, I can meet people from different backgrounds, whose occupations are not only limited to the nonprofit sector. The Fellowship broadened my horizons and inspired me to think about how to help my SMA peers using different approaches,” she says.

Josy is thankful as she created new connections and met great friends here. “I developed close friendships with my other fellows, Kathleen and Hei Ching. What we shared were not just values towards social justice and passion for creating a better Hong Kong, but we also talked about our personal life and discussed philosophical questions. Another fellow also told me they could assist my project in drafting funding proposals,” she says.

“I also appreciate the Resolve team and their work. The team members are very helpful and I am grateful to have met them all. They utilized their network to support us and help find solutions to many problems. They advised me to get support from other stakeholders, such as reaching out to the University of Hong Kong for resources. I also learned that there are many opportunities to mobilize resources in our society,” she says.

“Alicia is like a friend to me despite the fact that she is my mentor,” she says. When Josy spoke to me about her relationship with her mentor, Alicia Lui, she joked about how she is motivated by Alicia’s friendliness and open-mindedness. “There are not many people out there who can accept me for who I am, but she always welcomes new ideas and patiently gives me advice based on her own experiences,” she added.

After seeking guidance from Alicia, Josy found a sense of direction. Now, she hopes to encourage people with disabilities to seek a better quality of life and realize their needs for leisure and entertainment.

At first, Josy encountered obstacles in her social justice journey due to the outbreak of COVID-19. As many news sources considered the impact of the pandemic, the voices of people with disabilities were often sidelined. One of Josy’s biggest takeaways from the workshops was how to attract more people to listen to these voices. During the Fellowship, Josy started to discover new ways to tailor her message, such as meeting people through Zoom and advocating for disability rights in a whole new pandemic world. It gave her opportunities to connect with different stakeholders online, whether through emails or virtual calls.

“There was a bottleneck in my social justice project. As the circle of SMA is small, we often shared similar experiences and values,” Josy says. “That’s why I needed some new perspectives and stimuli to develop my social justice initiative,” she added. After the Fellowship, Josy became much more aware of the other needs of people with disabilities.

“Without Resolve, I wouldn’t think of founding an NGO.”

Her plan is to enhance the well-being of people with disabilities so that they could enjoy gaming just like everybody else. After completing her studies at the University of Hong Kong, Josy plans to gather funds to set up her own nonprofit.