The Cultural Dynamics of Being Asian and Disabled

Photo of Tiffany, an Asian woman with dark hair below her shoulders, leaning against a tree. She is wearing a hat and a red top. Her arms are crossed, and she is wearing a splint.

This year will mark 24 years of my life since becoming disabled. Through my work, my disability origin story is quite public. At the age of 9, I became disabled as a result of a car accident that also took the life of my dad.

What I am learning is that my story is not only a disability story; it is also a story of what it means to be the daughter of Asian immigrants.

I’m the first-generation daughter of a Taiwanese immigrant and a refugee from the Vietnam War. When my dad was alive, I was scared of him. He had a temper that would come out in physically and verbally violent ways. I remember tossing bits of steamed vegetables in the toilet because I didn’t want to think about what the repercussions might be if I didn’t finish my dinner. A therapist has described the impact of these experiences on me as complex, developmental trauma. I realize that this has everything to do with cultural dynamics and intergenerational trauma that would still exist even if I hadn’t become disabled.

But also, more of us are disabled than you think.

At birth, I was born with a congenital heart defect known as arrhythmia. I had to wear bulky heart monitors throughout my adolescence until I had a surgical procedure done in high school called an ablation that “fixed” it. Looking back, I was born with a disability but because you couldn’t see it, it was hidden away because in Asian culture, disability is seen as a source of shame.

The reason why my dad lost control of the car was because he had a seizure. His seizures were never acknowledged or discussed, nor did he ever claim a disability identity the same way I have. Again, because you couldn’t see it, it was hidden away.

Asian Identity and Mental Health

I only started labeling the car accident as “trauma” in 2015. In 2017, I went to a therapist for the first time ever for an unrelated traumatic incident that happened in 2016. I was diagnosed with post-traumatic stress disorder (PTSD) related to the car accident in 2019. That’s a 22 year treatment gap.

My mental health was never discussed. My parents, along with many Asian parents from my generation, had to overcome many hardships to get to the United States, so the thinking was that I should not have anything to complain about and should be grateful for the sacrifices that they made.

Studies have shown Asian Americans are three times less likely to seek mental health support. This is rooted in a culture that perceives mental health conditions as causing shame to the family. 

After my dad died, my mom would tell people that he was away on a trip. So I started telling people that he was away on a trip, too. It was another way to avoid bringing shame to our family, and it felt like a form of collective gaslighting.

Asian Identity and Physical Disability

Having a physical disability added another level of shame to my Asian narrative. Within many parts of Asian culture, disability is a taboo topic and disabled people are seen as outcasts, based in an antiquated trope that disability is some form of punishment, represents a shameful family, and I deserved what happened to me. While my dad and I technically both had non-visible disabilities before the accident, I now had a visible disability that I tried my hardest to hide and not talk about for a long time. I wore long-sleeves all the time, even in the humidity and heat of Washington, DC summers. When well-meaning people asked me about my arm, I would burst out crying. I was experiencing so much pain and these emotional outbursts were my only outlet. After a while, people stopped asking, but the stares continued.

Coming Into My Disability Identity

During my senior year at Georgetown University, I was a resident assistant participating in a diversity training where we asked to cut out slices of a “pie” that represented our social identities based on how important they were to us (e.g., race, gender, religion).

My identities as a woman and being Asian were large slices on my pie, and disability was almost half of it.

This was the first time I had seen disability included as part of a discussion about identity and it made me wonder why I had neglected to acknowledge part of my own identity.

When I glanced over at my neighbor’s pie during this exercise, I saw that being “able-bodied” (the term used in the exercise, though I would update it to “non-disabled”) was the thinnest slice of his pie. It wasn’t even something he thought about. If people aren’t aware of something, then they wouldn’t even think to include it.

This exercise inspired me to start Diversability, a movement to celebrate the diversity of the lived experiences of disability through the power of community. We wanted to reframe disability narratives away from ones that were rooted in shame, victimization, and pity and move to ones that were rooted in pride, identity, and empowerment. 

This was also the first time I shared my disability story publicly, and through our work as an ecosystem builder, connector, and talent incubator, I’ve met many other incredible people with disabilities around the world. We were hosting events around the country and building a community around an identity that was often equated with social isolation and social exclusion.

I had never considered myself a disability advocate, but I became one that year.

For a while, my work with Diversability paralleled my own personal journey. I was learning to talk about my story from a place of vulnerability, strength, and power. 

Sharing my story allowed me to uncover other parts of it, especially around the dynamics of how my Asian culture played a significant role in how I saw myself as an Asian American woman with a disability. I learned that I felt alienated within my own Asian cultural group because of the stigma attached to my disability. 

Embracing Disability

After the car accident, it was time to grow up. I buried my feelings behind a smile and tried to “get over it” on my own. I now call this internalized toxic positivity. If I wasn’t in school or in my “bedroom prison,” my mom was driving me to doctor appointments, physical therapy, acupuncture, surgery–whatever she could try to do to fix my arm and in her eyes, give me a better life. As a result, all I saw was that I was broken and the only way out was to be fixed.

Looking back, I can’t help but feel a little angry that my cultural background meant that a nine-year-old girl couldn’t have the space to openly heal. I feel angry that I grew up with the harmful narrative that something was wrong with me. I couldn’t just be myself, though I just wanted to be a kid.

Sometimes I reflect on my story and think about how far I’ve come. I think about how 9-year-old Tiffany in the hospital bed after the car accident would feel if she could see who she became.

In 2019, I had started wearing a wrist splint on my injured arm to help with its usability. My friend Jeff offered to ask his artist friend Forest Stearns if he could add some personality to it.

When I first started on my disability advocacy journey, I would often talk about how I felt like my arm–and disability more broadly–was the elephant in the room. Fellow disability advocate Xian Horn would add that we needed to hug that elephant.

When I opened the box, I was a little surprised. Forest had used all the space on my splint as his canvas. My splint now has an illustration of nine-year-old Tiffany hugging that elephant in the room, with the word “proud” written across one of the straps. It felt really loud and big. I had spent my whole life not playing on that level.

This splint felt a little bit like my middle finger to the world.

It was a statement to say that I knew people were looking and I wanted them to look. Channeling the Harry Winston quote, “People will stare. Make it worth their while.” Our disabled bodies are beautiful.

These days, I’ve been thinking about how excited I am to show off my splint—this piece of art—to whoever will listen. I want you to look at my splint. I want you to look at my hand.

These moments I get to share my hand feel so special to me because I am honoring myself and the things I carry in this body. It feels like the best kind of self-love to give my hand its time in the spotlight.

It’s about time.

But the more that I share this story with people, I’m reminded of a bigger picture. Elephants are seen as a symbol of power, strength, loyalty, and unity. They are the largest land animals on Earth and one of the most unique-looking as well. They are big, gentle, and born to stand out.

All of this seems so meaningfully symbolic to me of where I am in my life. Even though my mom still sees my work as “monkey business,” I’m proud. My journey makes me proud. My disability makes me proud. Who I have become makes me proud.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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It’s Time to Recognize Climate Change as a Disability Rights Issue

An image of a city skyline. One half is brown with dry brittle ground. The other half has a blue sky and lush green grass.

“What are you doing here?”

I’ve been thinking about my answer to this question over the past few weeks. I’m the founder of a social enterprise focused on disability inclusion who was one of the 50 World Economic Forum Global Shapers selected to attend Former U.S. Vice President and Nobel Laureate Al Gore’s 36th Climate Reality Leadership Corps training. Many of my peers who joined me there are working on some incredible projects addressing the climate crisis, from consulting climate-tackling startups in NYC to starting a recycling program in Kazakhstan.

I felt a little out of place.

Why me? Why was I selected to be here?

Global Shapers with former U.S. Vice President Al Gore at the 36th Climate Reality Corps Training in Pittsburgh, Pennsylvania October 17–19, 2017

On a local level, I’ve been thinking about the Northern California fires and their impact on San Francisco’s air quality. San Francisco also had its hottest day on record in early September at 106 degrees Fahrenheit.

But where does the disability community fit into all of this?

When issues like discrimination, access to adequate healthcare, unemployment, and poverty are among our top concerns, climate change tends to be an afterthought. When we are fighting for basic human rights and equality, how do we have time to think about climate change?

Being concerned about and fighting for climate justice is a privilege.

What I learned was that we–the disability community–are the ones who need to be at the forefront of this movement. When it comes down to it, climate justice is about people and climate change is a human rights issue. Climate change impacts vulnerable communities like mine  the most. Opportunity and justice cannot be an afterthought.

Here’s what we know:

The scientists agree, climate change is real and causing problems for us.

Global temperatures have been increasing. 16 of the 17 hottest years on record have occurred since 2001. The largest source of global warming pollution is the burning of fossil fuels to drive cars, generate electricity, and operate our homes and businesses.

Extreme weather has created unprecedented heat, flooding, and drought, which puts a strain on my community’s well-being. Mobility, hearing, learning, or seeing disabilities can create specific needs that require extra time or consideration in an emergency evacuation, especially as accessible options become limited.

Alex Ghenis from the World Institute on Disability, who has done a lot of work on the issue of climate change and disability, mentioned that there isn’t much research available around concrete numbers related to climate change’s impact on our community, but is hopeful this will change as more resources are dedicated to climate research.


Extreme heat events cause more deaths annually in the U.S. than all other extreme weather events combined. Some members of the disability community are especially vulnerable to extreme heat events due to increased sensitivity to keeping our body temperatures cool enough. For example, people with multiple sclerosis have been shown to experience greater pain and fatigue on hot days, and some people with spinal cord injuries don’t have the ability to sweat as a means of cooling down. As such, extreme heat poses physical danger to many disabled people.


Climate change does not cause hurricanes to form, but the hotter surface water temperatures make the hurricanes stronger. This poses a strong threat to the safety of the disability community. For instance, in 2005, almost half of deaths from Hurricane Katrina were people over age 75, with over 10% of total deaths occurring in nursing homes. Most of those individuals had medical conditions and disabilities that made them vulnerable to the extreme weather conditions. More recently, hurricanes Harvey, Irma, and Maria were even more intense, creating heavier downpours, causing sea levels to rise, and staying in place longer. These hurricanes have left millions without electricity (34% of Puerto Rico is without electricity more than two months after the hurricane), which is especially problematic because so many disabled people need electricity-powered medical equipment to survive.


The same extra heat that causes more water to evaporate from the ocean, causing bigger downpours and floods, also pulls moisture even more quickly from the soil, causing longer and deeper droughts. This causes food and water insecurity in many parts of the world. Because of other social factors like the disproportionate number of disabled people who are caught in an endless poverty cycle, the disability community is especially vulnerable during these shortages.


Hotter temperatures have also caused wildfires to increase and intensify. More than 5,000 homes and businesses have been destroyed by the Northern California fires, making it the most destructive wildfire in the state’s history. Many of the hundreds of people who are still unaccounted for in the fire area could be some of our community members, who lack a strong support network. Recovery efforts in the aftermath of the wildfires include the establishment of the Richard Devylder Disaster Relief Fund by the California Foundation for Independent Living Centers for survivors who lost their critical mobility and accessibility devices in the fires (wheelchairs, scooters, walkers, canes, hearing aids, communication devices).


Extreme temperatures and disasters have caused and will continue to cause some regions to become uninhabitable, leading to pressure to migrate and creating climate refugees, driving people into already crowded cities. Displacement negatively impacts our daily lives, because we need access to health services and long-term medical, financial, and social support. Moreover, displacement can cause psychological distress or trauma.

And if we are not able to migrate, we are often part of the vulnerable communities that are left behind. That’s when we see environmental injustice and racism, where our communities are placed in the proximity of environmentally hazardous or degraded environments, such as toxic waste, pollution and urban decay.

Where you live is the most important social determinant of health.

It impacts the kind of food you eat, your water supply, and the air you breathe. Everyone’s (disabled or not) pulmonary function is affected by air pollution. There are places where smog, ozone, and fine particular matter from unconventional natural gas development (fracking) and coal have drastic health impacts, like increased cases of contaminated water, asthma, bronchitis, and pneumonia and decreased life expectancy. Air pollution also affects mental health and cognitive ability, especially in children.

What can we do?

Over the course of my time at the Climate Reality Leadership Corps training, I came to realize that environmental issues and disability rights go hand in hand. Extreme heat, air pollution, and lack of green spaces impact our physical and mental health.

And finally, it made sense why I was at the training. My community needs to be here. We need to be represented. These conversations are happening, and we need to have a seat at the table. We need to have a voice.

Here are some everyday things we can do:

  • Do your research. A good place to start is at New Earth Disability, an initiative of the World Institute on Disability.
  • Talk to others about the realities of what is happening in the world. Our country’s top leader is one of the biggest critics of climate change. But this is not a political issue. This is about the future health and prosperity of our communities. If you’d like to educate groups on climate change, join me as a Climate Reality Leader.
  • Advocate to your elected officials at all levels to make energy efficiency and conservation efforts a priority by contacting them or attending a town hall.
  • Encourage your company to reduce its carbon footprint, from ensuring building standards and codes are enforced to incentivizing employee behavior to go green.
  • Think about your own environmental impact. How can you bring a climate change overlay to what you’re doing and push yourself to expand your impact?

Let’s hold ourselves, our companies, and our elected officials accountable to commit to talking about this and moving away from fossil fuels toward renewable energy, leaving no one behind.

Our lives depend on it.

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Why Involving Disabled People in Disaster Planning Saves Lives

Emergency supplies including flashlight, radio, and waterbottle. A person is writing on an emergency preparedness checklist attached to a clipboard

During Hurricane Harvey in August, a striking image went viral: Nursing home residents sitting in waist deep floodwaters, surrounded by floating debris, an angry cat in the background. The Harvey flooding victims (and the cat) were rescued, but scarcely a week later, eight elders died in a Florida nursing home in the aftermath of Hurricane Irma because a power failure cut off air conditioning, while in Puerto Rico, electricity interruptions are preventing access to dialysis.

With every hurricane comes a load of stories about nursing home residents, both elderly and disabled, as well as disabled people in their communities suffering extreme hardship, and sometimes death, due to inadequate preparedness. It’s even been the subject of lawsuits, such as Disability Rights Advocates’ (DRA) successful suit demanding remedies after Hurricane Irene. Stanford legal historian Rabia Belt’s work focuses on issues like these, and she’s found that disabled people are disproportionately affected by major natural disasters.

We know that natural disasters happen, whether earthquakes and fires in the West, hurricanes in the South, severe storms in the Northeast, or tornadoes in the Midwest. We also know that all communities include disabled people living in institutions, group home settings, and their own private residences. So why are we failing on disaster preparedness for the disability community?

Rebecca Rodgers, a Staff Attorney with DRA legal, tells Rooted In Rights one problem is a failure to understand the difference between individual and institutional disaster preparedness plans. “There are many things that the government does for all citizens in all disasters, and the government needs to provide equal access to people with disabilities with these services.”

She comments that the needs of the disability community are very-well documented. Some of the issues she’s identified in her work include: Evacuation chairs to help people get out of high rises; accessible shelters to ensure that disabled people have somewhere to go; sufficient accessible vehicles for transport; refrigeration for medication; medical supplies, including backup medications; and access to power for medical equipment. These are things disabled people can’t adequately prepare for even with the most meticulous individual planning.

Governments, Rodgers says, “need to be engaging with the disability community” to learn more about their needs and level of disaster preparedness.

This includes proactive outreach and education so disabled people know what to do and where to go in disasters — and that communication needs to be accessible, provided in a variety of formats for people who may be d/Deaf and/or blind. During disasters, it’s especially critical to offer American Sign Language interpretation by a qualified professional interpreter, as well as captioning.

Lisandra Pagán, a disaster consultant, agrees with Rodgers: Disabled people must be involved in disaster planning for it to be effective and inclusive, and disabled disaster specialists in particular have a uniquely overlapping set of knowledge that communities should explore. She also comments about a third option between personal planning and municipal preparedness: Community Emergency Response Teams (CERT). These volunteer teams come from within the community itself, receive special training in disaster response, and critically know the needs of their neighbors so they can react quickly in an emergency. While they cannot replace an official government response, they can supplement it. Nick Sicora, another consultant, notes that CERT members receive training in situational assessment so they can report to authorities, ensuring that sufficient and appropriate resources are deployed on scene.

Meeting the needs of the disability community requires acknowledging that the community exists, and caring about it.

With disabled people often living in the shadows and struggling to be included in society even when communities aren’t in chaos, this presents a challenge. The DRA’s suit, as well as lessons learned in Hurricane Katrina and later in Superstorm Sandy, may be paving the way to a future when disabled people are included in disaster planning from the start, so the community is prepared to respond to their needs as a disaster bears down.

Notably, in Harvey, the city of Houston benefited from Maria Town, an experienced disabled policy expert and advocate. Town leads the Mayor’s Office for People with Disabilities, which has been proactive about outreach and education for the disability community both before and after Harvey.

No one knows the needs of the disability community like another disabled person.

As Texas and Florida recover from their prospective storms, we’re being reminded that the nursing home industry successfully killed a 2006 bill to require generators at nursing homes, ensuring they wouldn’t lose power for cooling systems. Hopefully the legislative aftermath of these devastating storms will be different, and future disaster planning will include recovery, so that disabled people will no longer have to fear their right to community living may be interrupted in the wake of major disasters.  

Being better prepared for disasters requires a two-pronged approach. Consulting disabled stakeholders may help states develop more targeted legislation, but individual communities should be including disabled people in their planning moving into the future if they want to respond aptly to future disasters. Dramatic stories of nursing home deaths and inaccessible shelters aren’t as exceptional as they may appear to the nondisabled public, and they’re also fully preventable through coordinated community efforts.

The Right to Be Rescued

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Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.

Empowering Awesome Innovation in the Disability Community

stacks of pennies that increase in height from left to right, each one has a small plant growing out of the top which also increase in height from left to right

What does an art project in Uganda, an organic urban garden cooperative in Ecuador, and a Peer-To-Peer Wheelchair Repair program in the Bay Area have in common?

They’re all projects that support the disability community, funded by people with disabilities.

The Awesome Foundation Disability Chapter, or #AwesomeDisability, consists of 10 trustees, all of whom identify as having a disability. We are a super group of 10 changemakers, entrepreneurs and advocates from all over the world, from the United States, to New Zealand, to South Africa. Our work lives and personal lives intersect with disability daily. Together, we award monthly $1,000 micro-grants to people and projects that are working hard to make a positive difference in the disability community.

Katie Savin, who runs Peer-To-Peer Wheelchair Repair, was June’s Awesome Disability grant winner. “I am honored and thrilled to receive the Awesome Disability award! While Congress places our health care and liberty under attack, disabled people need to find creative ways to use our own community as sources of support. My goal for these funds is to contribute to our community’s capacity to upkeep our wheelchairs and by extension our liberty. My wheelchair made it possible for me to protest the Senate healthcare bill. Our community’s potential is endless when our basic needs are met!

Awesome Disability empowers innovators like Katie in the disability community through access to funding. Not only can $1,000 turn an incredible idea into a reality, but also it can instill confidence in individuals who are part of a community that experiences inequality and a lack of support all too often. We have come together to empower the development of solutions for the disabled community, by the disabled community.

Pink text on a black background that reads "Awesome Foundation Disability" with two pink arrows.

In the social innovation world, this is called “ownership of change,” which means that the most high impact solutions come from deep insights and understanding of what we are trying to solve. In our case, the capital for the grants we award to members of the disability community comes from members of the disability community. Talk about taking ownership of our future.

Since launching in April, in addition to supporting Katie Savin’s wheelchair repair program, we’ve also proudly supported Batale Fred’s art and design skills workshops in Uganda (Disability Art Project Uganda) and Margorie Yana’s organic urban garden cooperative in Ecuador (Huertomanías).

We could not be more excited to have a group of people in the disabled community come together to fund projects directly connected to the disability space. We want to pay it forward, and this is just the beginning. Think of what can happen when this kind of change becomes the standard, when we enabled those who have the insight and solutions to make change happen.

Awesome Disability is looking for innovation, a clear outline of what the grant will be used for, and the grant’s importance for the project. Everyone is encouraged to apply, regardless of the stage of their project. Note that some trustees prefer to shortlist individuals that identify as disabled or organizations that are run by disabled people. Applications open at the start of each month and close on the 15th, with a decision on the winning project made by the end of the month.

We hope you’ll join us at

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

Click here to pitch a blog post to Rooted in Rights.