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Asian Pacific Americans with Disabilities: Our Stories, Our Lives

Asian Pacific Americans with Disabilities: Our Stories, Our Lives

Below is a summary of an informal survey conducted by the Disability Visibility Project. Alice Wong presented the results of this survey at the 9th Jacobus tenBroek Disability Law Symposium on March 31, 2016 for the panel, “Building Diversity in the Disability Rights Movement.”

This summary includes the transcript of the talk including additional quotes and themes.

Introduction

Hi everyone! As you can tell, I am presenting via this YouTube video since I cannot be there in person with you all. I want to thank the NFB steering committee for inviting me to this disability law symposium as a panelist on building diversity in the disability rights movement. Any images you see in this video are described in the PowerPoint presentation that also includes the transcript of this talk.

Before you can build diversity, you have to understand the lives of diverse communities of color. The Asian Pacific American lived experience of disability is different from the default white disabled experience that most of the movement is centered on. But don’t take it from me alone. In preparation for this panel, I conducted an informal survey of APAs with disabilities asking them about their lives and experiences with the disability community.

Quick note: APA is a term that includes Asian Americans, Native Hawaiians, and Pacific Islanders. APAs are incredibly diverse by language, ethnicity and immigration history. And by the way, some quotes might use the term AAPI which refers to “Asian American Pacific Islanders.”

I’ll first touch on a few major themes and then give some recommendations on how the disability community can improve their engagement with disabled APAs.

Asian Pacific Americans Exist

One major theme is the sense of invisibility in both APA and disability communities. There’s a duality that happens when you feel not entirely comfortable in either community. A person named Esther said:

I don’t think people think we exist. The model minority myth is so pervasive that AAPIs with disabilities are erased from all communities. I think there’s also a huge shame factor that has to do with the different cultures they are a part of that prevents AAPIs with disabilities and their families to be outspoken within the “mainstream” disability community and society in general.

–Esther

It can be isolating for a disabled person of color even when you’re around other people with similar disabilities. One anonymous person recalled her experience:

My college friends with disabilities constantly joked around about my ethnicity and they gave me such a hard time about eating my culture’s food, I ate in my dorm room instead of the cafeteria. As a child in a camp for kids with disabilities, who were all white except for me, a boy kept calling me “Chinese girl,” even though I am not Chinese.

–Anonymous

Another anonymous person spoke about what it’s like not seeing anyone like herself:

I don’t feel represented in any disability conversations except ones specifically about chronic pain and my degenerative condition, and there, I feel I am often the only Asian person…The public image of my disability is of a white woman.

–Anonymous

Intersections of Race and Disability

Another major theme is how disability movements and communities do not acknowledge the impact of racism on the lived experience of disability. On person said:

I feel that mainstream disability discourse completely ignores how racism interacts with our ability to get care. Ableism makes racism even harder to deal with, and racism makes ableism that much more difficult, but the intersection of the two is rarely, if ever discussed.

–Anonymous

There’s also this simple and clear statement by another participant:

Racism is real. Disabled people can be racist toward disabled people of color.

–Anonymous

This isn’t groundbreaking news but it’s an important one to emphasize when it comes to building diversity in the disability rights movement, how to do it, and where to start. For me, one starting point is to accept and confront this reality.

On a related note, ethnocentric attitudes toward disability can exclude disabled APAs. One example is the belief that disability rights is more advanced or superior in the United States compared to countries in the developing world. Survey respondent Jisun Lee said:

I’ve also felt frustrated that the APA community is seen as categorically unwelcoming to folks with disabilities…I think there are real issues between cultures and countries when you’re talking about disability acceptance, yet I also really resist this idea that the US and Western Europe are somehow categorically “better” when it comes to disability rights. That’s an oversimplification and contributes to more stigma.

–Jisun Lee

Model Minority Myth and Disabled APAs

One aspect of the disability experience that is unique to disabled Asian Pacific Americans is the role of the model minority myth. The model minority myth is a harmful construct that supports white supremacy. I just want to make it clear I’m not pointing my finger at individuals—white supremacy refers to institutions, ideologies, and infrastructure that privileges whiteness over other minorities.

Common model minority stereotypes include the notions that APAs are submissive, polite, respectable, successful, hard-working, and talented people. Plus, the model minority myth is a tool of anti-blackness by portraying APAs as proof that racism and systemic inequality doesn’t exist. A person with bipolar depression said:

I used to blame myself for not being smarter…I started to believe that I was inadequate for the schools I attended, and no one else outwardly could see me struggling. I was the perfect model minority going to an exceptional school. Not only was my disability invisible, but my identity as an Asian-American made it even more so.

–Anonymous

The model minority myth can prevent disabled APAs from asking for help, accessing appropriate services and accommodations, and self-identifying as a person with a disability. It is critical that the disability rights movement is aware of the model minority myth and addresses it in their programs and practices.

Importance of Intersectionality

Many of the survey respondents talked about their multiple identities and the need to have them recognized and affirmed. A person named Liz talked about being part of the queer community and the importance of intersectionality:

I’m part of the queer community and even specifically the LGBTQ Asian American community. Here, I’ve found a lot of other people who identify as someone with a mental illness and disability. In this community, we really recognize our multiple, intersecting identities and how all of our identities also relate to the institutional and systemic oppressions.

-liz

It’s imperative that the disability rights movement advance with their advocacy from an intersectional approach. Otherwise, you’ll lose people who feel like they don’t belong because all aspects of their selves are not accepted.

Recommendations

So where do we go from here? What does it take in concrete terms for disability rights organizations and their leadership to go beyond inclusion? Here are 7 recommendations from the survey respondents:

  1. Create a pipeline of disabled APA leaders by starting at the grassroots level reaching out to youth and offering opportunities such as workshops, paid internships, and mentoring.
  1. Hire qualified disabled APAs and other disabled people of color and actively recruit them.
  1. Share disability rights information with APA organizations by building relationships across movements, supporting each other’s advocacy, and being a good ally.
  1. Recognize the privilege within your organization or peers and consistently work on those issues.
  1. Create safe spaces for disabled APAs to connect and provide resources that support their activities.
  1. Use language and terminology that will resonate with each diverse community. That is, basic cultural competency. Understand that many cultures have different definitions and conceptions of disability.
  1. Apply a multi-layered analysis of culture, language, and privilege for every disability policy issue. For example, employment is a perennial concern in the disability community. In any advocacy on employment, consider the different impact on disabled women, disabled women of color, or disabled queer women of color. Also, publish and highlight these diverse experiences. 

Conclusion

Last year, I wrote a guest blog post for the Smithsonian Asian Pacific American Center for the 25th Anniversary of the ADA titled, “Not A Unicorn: Finding Communities Within A Community.” I feel like a unicorn because throughout my entire life, I rarely saw disabled APAs prominently in what’s considered the mainstream disability rights movement. It’s always thrilling to connect other disabled people of color but there’s something wrong when it’s so infrequent and rare. And it’s even worse when there are few of disabled people of color in the leadership of major disability organizations.

Earlier I mentioned the importance of intersectionality. If the disability rights movement wants to evolve and thrive in the future, it must embrace an intersectional approach in everything they do. Rather than saying, “I don’t know any Asian Pacific Americans with disabilities,” or “I can’t find qualified people of color for this position,” organizations and leaders must go across movements and communities where disabled people of color are located rather than waiting for them. They need to seek them out, welcome and listen to them, and follow through with actions. A seat at the table is not enough nor is having one or two disabled people of color at a meeting or on a board. There is a real hunger and need for meaningful systemic change. And I’ll leave you with this final anonymous quote:

We need a collective of us. I have a void that is only filled when I am around AAPIs with disabilities. It is [a] unique family, living in diaspora. I long for my AAPI siblings with disabilities.

-Anonymous

ThankYouDVP
Feel free to contact me if you have any comments or questions. I’m @SFdirewolf on Twitter or you can email me at: DisabilityVisibilityProject@gmail.com

Thank you!!


Extra: Survey Results and Quotes

The Survey

The Disability Visibility Project conducted a survey in order understand the experiences and needs of APAs with disabilities, January to February 2016. Recruitment took place on social media and word of mouth.

23 people responded with their stories and recommendations. 2 of the respondents are parents of a child with a disability. Respondents had the option of using their full names, initials or “Anonymous” as identifiers.

Note from the author: this is a very long summary with a lot of quotes. I wanted to share these quotes because they are rich and important. Enjoy!

 

Survey: Demographics and Other Stuff

When asked about their race/ethnicity the respondents answered:

  • 8 Chinese Americans
  • 5 Korean/Korean American
  • 1 Asian/Middle Eastern
  • 1 Taiwanese American
  • 1 South Asian
  • 1 Eurasian
  • 1 Filipina
  • 1 Mixed-Race Filipino
  • 1 Asian
  • 1 Southeast Asian
  • 1 Scottish Japanese
  • 1 Vietnamese adoptee

When asked about their disability, the respondents answered:

  • 2 Muscular Dystrophy
  • 2 Depression, anxiety
  • 2 Cerebral Palsy
  • 1 Fibromyalgia
  • 1 Visual Impaired, Epilepsy
  • 1 Autistic
  • 1 Anxiety
  • 1 OCD; hypothyroidism
  • 1 Psoriasis, psoriatic arthritis, depression/anxiety
  • 1 Chronic fatigue syndrom, chronic migraines, ADHD
  • 1 Parent of a child with hypotonia
  • 1 Parent of a child with Down syndrome
  • 1 AD/HD and Cognitive Disorder
  • 1 Major depression, OCD, suicide ideation
  • 1 Dyspraxia; also, being shot in the head in high school
  • 1 Bipolar Depression 2
  • 1 Depression
  • 1 Dyslexia
  • 1 Ehlers-Danlos Syndrome; chronic pain
  • 1 Osteogenesis imperfecta

When asked if they identify publicly as a person with a disability (or disabled person), the respondents answered:

  • 15 Yes
  • 5 No
  • 3 Comments that varied saying, ‘It’s complicated’

When asked if they felt included in the disability rights movement, the respondents answered:

  • 10 Yes
  • 6 No
  • 4 Sometimes or ‘Yes and No’
  • 2 Blank
  • 1 Not sure

When asked if they experienced racism or stereotypes by the disability community related to their race/ethnicity, the respondents answered:

  • 14 Yes
  • 7 No
  • 2 Not sure

When asked if disability rights movement (leaders, organizations) is diverse in terms of representation of APAs with disabilities, the respondents answered:

  • 18 No
  • 1 Not many
  • 4 Unknown/Blank/Not sure

Questions Asked

Below are some major themes that emerged from respondents based on the following questions:

  • What do most people in the ‘mainstream’ disability community do not know or understand about APAs with disabilities?
  • What are some issues related to disability rights that are unique to APAs? How do they impact us differently? Feel free to provide some examples.
  • What are the major issues related to your life that matter to you most as an Asian Pacific American with a disability?
  • What are your recommendations on how disability rights organizations and leaders should respond and engage with APAs with disabilities? What do they need to do to connect with us as a community?
Two Asian American sitting side-by-side. The woman on the left is in a wheelchair; she is wearing a green rain jacket and glasses. The woman on the right has short black hair, glasses and is wearing a striped-t-shirt. They are both smiling at the camera.
This image is used for illustration purposes only. It may or may not depict a survey participant.

Major Themes and Issues

Asian Pacific Americans Exist

One major theme is the sense of invisibility in both APA and disability communities. Here are a few quotes:

That first of all there are APAs with disabilities, we are very invisible, there is a huge cultural stigma, and taboo, that it often presents challenges to families because of fear of embarrassment or shame. The major issues related to my life that matter to me most as an Asian Pacific American with a disability is, sharing my story, so others in our community do not have to be silent, ashamed, embarrassed, or have to be invisible any longer.

–Austin Tam

I feel that mainstream disability discourse completely ignores how racism interacts with our ability to get care. Ableism makes racism even harder to deal with, and racism makes ableism that much more difficult, but the intersection of the two is rarely, if ever discussed.

–Anonymous

Most representations of disability is of mainstream, white, African American or Latino’s. Growing up as an Asian with a disability, I did not see any representations of Asians with disabilities. There is also a lack of cultural competency. A lack of advocacy to engage or connect with Asian communities.

–Jae Jin Pak

…disability is not a white people problem…we are so not a monolith. But most people interpret AAPI to mean only east asians (like me), which erases a lot of people from any conversations, policies, or programs. The other issue with this erasure is not only that many disabled Asians get left out but that Asians who *aren’t* really part of the U.S. mainstream disability community aren’t engaged *at all*. Especially immigrant folks.

–Lydia X. Z. Brown

I don’t think people think we exist. The model minority myth is so pervasive that AAPIs with disabilities are erased from all communities. I think there’s also a huge shame factor that has to do with the different cultures they are a part of that prevents AAPIs with disabilities and their families to be outspoken within the “mainstream” disability community and society in general.

–Esther

Race, Culture, and the Disability Community

I don’t feel represented in any disability conversations except ones specifically about chronic pain and my degenerative condition, and there, I feel I am often the only Asian person. I am one of only two APAs I have met with this condition or who lives with chronic pain. The public image of my disability is of a white woman.

–Anonymous

I have felt included in the disability rights movement and have felt support from the disability community. I have not been involved at the grassroots level through protest, but I have been involved in disability issues and rights most of my life through school, work, organizations, serving on advisory committees, boards, etc. However, there have been times where I have felt out of place as an Asian American with a disability. And I do feel that the overall movement, like many other movements in society, whether it be women’s rights, gay rights, etc. do not represent people of color very well. Our voices are often invisible or silent. Many movements, including the disability rights movement are overwhelmingly white. AAPIs in particular are often ignored, even if the input of people of color are sought, it is usually that of the African American/Black or Hispanic/Latino community.

–Anonymous

My college friends with disabilities constantly joked around about my ethnicity and they gave me such a hard time about eating my culture’s food, I ate in my dorm room instead of the cafeteria. As a child in a camp for kids with disabilities, who were all white except for me, a boy kept calling me “Chinese girl,” even though I am not Chinese.

–Anonymous

That we are not white, that it’s not funny to joke around about our racial and cultural identities, that our food is important to our cultural identities, and that we may not feel totally accepted by the mainstream, mostly white disability community.

–Anonymous

Racism is real. Disabled people can be racist toward disabled people of color.

–Anonymous

I wish that both communities could see their issues as part of a more global framework of civil rights issues. Also, that not everyone in the disability community shares the same cultural values; I think most of what’s out there in the disability world is expressed from a very white, western point of view. And that’s understandable, since that is the majority in this country, except that when you’re talking about topics like independence, sexuality, and parenting (just to give some examples), you’re losing a lot by not considering other cultural perspectives, as well as risking alienating parts of the community when you assume one set of values over another…I’ve also felt frustrated that the APA community is seen as categorically unwelcoming to folks with disabilities (the implication being that western society is more evolved, which I find to be nonsense). I think there are real issues between cultures and countries when you’re talking about disability acceptance, yet I also really resist this idea that the US and Western Europe are somehow categorically “better” when it comes to disability rights. That’s an oversimplification and contributes to more stigma.

–Jisun Lee

As an Asian American woman with a disability, I am constantly thinking about the intersections of race, gender, and disability and how that affects my life as well as the lives of others in marginalized groups.   Because America is such an individualistic society, people do not want to admit, accept or even believe that certain privileges are allotted to certain groups and denied to other groups because it diminishes the accomplishments of individuals. It allows society to blame the victim in preaching that everyone is in control of his or her own destiny, if you do not succeed it is your fault…For me it is very important to recognize that the structured and institutional racism and ableism that is embedded and pervasive throughout American society pits one group against another, highlighting differences instead of their shared and linked oppression by the dominant society.

–Grace Tsao

In 2004, when having Chinese food with one other AAPI activist and three other White activists of an disability rights group that commits civil disobedience, one of the White people said we should watch what we are eating because it might have cat meat in it. Whenever disability rights leaders say being in a wheelchair is the same as being of color, including AAPI.

–Anonymous

Living in Berkeley, I was very lucky to have excellent resources and to have a very supportive family. I met several AAPIs in the disability movement who are still important people to me today. There were just things about my life I didn’t have to explain from zero with them that they understood. At the same time, meeting people from diverse cultural backgrounds helped me understand more about myself and the world. I see disability as an amazing opportunity for people to realize how similar we all are, despite apparent differences. I encourage the disability rights movement to be inclusive of all. In this process, it will be at times necessary to meet with AAPIs or different groups separately, but overall I encourage an integrated perspective that includes many cultural communities.

-Sarah Tom

two women of color in wheelchairs in front of a recording booth. The woman on the left is wearing a green jacket, glasses, and has black hair. The woman on the right has long curly dark hair, a black and magenta top and a tray attached to her wheelchair. Both are smiling.
This image is used for illustration purposes only. It may or may not depict a survey participant.

Model Minority Myth

Stereotypes such as the model minority myth may be particularly damaging in shaping the self-esteem and self-identity of AAPIs with disabilities. Especially coming from a culture that values being able to contribute fully to society and the added pressures based on stereotypes of the dominant culture. We come from a collective rather than individual-focused society, so people with disabilities are seen as not being able to contribute equally to the common good of society because of our perceived limitations.

–Grace Tsao

Living with OCD and having South Asian parents meant that I struggled with standardized tests and didn’t fit into model minority myth.

–Anonymous

So much of that is not just due to my ethnicity but my gender in combination with my ethnicity. Were it not for one amazing doctor, I doubt I could have ever been diagnosed, and thus I never would be able to cope. I might not have ever held down a job or finish school. I might not even be alive due to years of being told I was doing this to myself. It is still difficult for my family (especially those who are medical professionals) to understand I have invisible illnesses and conditions and that they also come with psychological effects. To my family, I am seen as someone who likes to find “blame” for my problems. To other people of color, I am a unicorn because they’ve never met an Asian-American with a disability or who is open about having one. This idea that we are inherently super-abled is incredibly damaging to the very idea of personhood. To white people, I am often written off as not actually having a disability due to its invisibility because, again, the image of the super-abled Asian-American is so pervasive that they assume anything invisible can be negated by my “superpowers”.

–W.L.

I think that having bipolar depression 2 really affected the way I saw myself. I would fall into these waves of being manic and highly productive, and then fall into these pits of depression where I couldn’t even get out of my bed or go to school. I used to blame myself for not being smarter, and wonder why I couldn’t do more in school or why I couldn’t just go out and socialize. There was so much blame, and I started to believe that it had a lot to do with my identity as a Southeast Asian from a low-income neighborhood. I started to believe that I was inadequate for the schools I attended, and no one else outwardly could see me struggling. I was the perfect model minority going to an exceptional school. Not only was my disability invisible, but my identity as an Asian-American made it even more so.

–Anonymous

Some people have implied that intellectual disability won’t impact my son as much as other children with Down syndrome, the implication being that we (Asians) are a) somehow naturally very smart or that b) I’m going to be a “tiger mom” and push my son to his highest potential.

–Jisun Lee

I have been asked if my medical knowledge of my own condition comes from a family member who works in medicine (on the presumption that, being Asian, we all are nurses or doctors). I’ve also been told that my mental health issues must be related to having “strict Asian parents”, etc.

–Anonymous

I was only recently diagnosed with anxiety and perhaps ADHD (have not had access to testing or insurance) only after graduating from college. However, when I look back on my life and my educational experiences, I think the reason my teachers never really suspected anything was that they wrote me off as a quiet Asian girl while really I was debilitated by my anxiety and had trouble learning.

The people I have approached who have family members with a disability or have a mental health disability have often never talked about this part of their life before. Many of them don’t want to talk about it because it’s triggering and they’re in therapy for it. Many families hide and only interact with their extended families if anything. My family is probably one of the exceptions to that probably. For my parents, their Christian faith was an important component of their acceptance of my brother’s disability. However, I have found that this faith I grew up with masked me from my anxiety and made me think it was about disappointing God rather than a chemical imbalance, which was really messed up.

-Esther

For most part, children with major disabilities who are smarter than their peers (which I was growing up) were not given any assistance in schools. Primarily, this comes from a strong family support system emphasizing education. It has a race connotation and I think families are ashamed to admit the child has a disability even when that child is outperforming others in his class. Primarily, due to a lack of testing accommodations in school, this will harm the child in higher education (which was my case).

-Michael Iseri

Photo of two Asian Americans. On the left is a middle-aged Asian American woman wearing a black hoodie and red turtleneck. On her right is a younger Asian American man with short hair and wearing a navy shirt.
This image is used for illustration purposes only. It may or may not depict a survey participant.

Resonating with Other Movements

I am passionate about making disability more accepted and visible in the Asian American community as well. I started a project called Reimagine Ability (reimagineability.com) that is trying to address this; however, I’ve taken a break on it as I’m on my own journey. I resonate with the AAPI community, sometimes the PoC community because I had more access to these communities and frameworks around race in college. I’m still understanding my queer identity and I do identify as a feminist probably because I went to a traditionally women’s college.

-Esther

I’m part of the queer community and even specifically the LGBTQ Asian American community. Here, I’ve found a lot of other people who identify as someone with a mental illness and disability. In this community, we really recognize our multiple, intersecting identities and how all of our identities also relate to the institutional and systemic oppressions.

-liz

I don’t feel like there are a lot of spaces for me to connect with on my identity as both an Asian-American and with my disability. I find that I can either connect with my Asian American community/movements, or that the disability movement is a separate entity. Even in college, I felt like those two spaces never intersected for me and that I had dual lives.

–Anonymous

Two Asian American women in wheelchairs sitting in front of a StoryCorps recording booth
This image is used for illustration purposes only. It may or may not depict a survey participant.

APA Disabled Lived Experience

That APA (poc really) bodies can exist as disabled (we’re perceived as a monolith). In terms of psych disabilities, which is what I’m more familiar with, the ways in which APAs experience mental health is different: it’s exacerbated by diasporic histories, intergenerational trauma, silence within our communities, influenced by cultural norms of how to experience emotions, ways people interact emotionally with us because we’re perceived as being robots.

–Anonymous

It’s been hard living inside two different cultures/communities and never fully feeling like I belong to either one. And your friends in either community never fully understanding where you are coming from. Some people with disabilities of color are able to balance and enjoy being in multiple communities simultaneously, but I’ve never been able to.

–Anonymous

I feel that the “mainstream” disability community has come a long way in becoming more inclusive of diverse people in the past 20 years. Many issues AAPIs with disabilities face relate to the immigrant experience more broadly, such as the importance of family and feeling differences between the US and the family’s country of heritage. In particular the balance between independence and being close with family is a challenge for AAPIs as well as other people with disabilities who are immigrants or whose families recently immigrated to the US.

–Sarah Tom

Living at home with parents is not always a determining factor of independence.

–Aziza Nassar

I think that APAs generally don’t speak about their disabilities, not even in their families or outwardly to their communities. I often feel like to be included in the disability movement, I would have to be “out” about it, and I don’t think that in my family that is possible. To this day, my family doesn’t understand what depression is and still firmly believe that medication is not the solution. They believe that disabilities can be solved with ceremonies and rituals and I don’t have the linguistic capability to fully convey what my disability is or what my needs are. So I don’t. I continue to hide that part of myself, in hopes that it can be unseen and that I can be presented as able bodied, and without my disorder.

–Anonymous

Different cultural perspectives, especially on disability. For instance, coming from a family that doesn’t embrace disability pride with a cultural background of disability being shameful or symbolic of something you or your family did wrong.

–Anonymous

Two Asian American women sitting side-by-side smiling at the camera. The woman on the right is wearing a black jacket and glasses. The woman on the right is wearing a white shirt and has long black hair.
This image is used for illustration purposes only. It may or may not depict a survey participant.

Disability Issues and Disabled APAs

I think some issues related to disability rights that are unique to APAs, is mental health challenges, and just speaking out, and individuals sharing their own stories and accounts. They impact us differently, on a cultural level.

–Austin Tam

Because of how and when my family came to the United States, I do not know if any of my other Filipino relatives also have my genetic condition or major pain issues. I also feel that I am expected to be an expert in my condition in a way my white-passing wife is not, because it many white doctors expect me to have family with medical knowledge or experience based on their stereotypes of Asians and medicine.

–Anonymous

Sometimes, I think, in Asian culture it’s still very family-oriented where the family is the unit that comes first. So trying to create financial independence for the disabled person can be misconstrued if it’s assumed that it would be a “loss” for the entire family.

–S.H.

I think caregiver support can look different for folks in APA communities, because it is not common to see arrangements beyond nuclear families. Immigration rights certainly is very impacted by disability rights issues and I think more attention could be paid to how that plays out. Many families in the immigration system are impacted by disability and I don’t think that is understood or acknowledged enough.

–Jisun Lee

As AAPI’s we have a lens that not all disabled people have, especially in the following areas:

Immigration — family emigrated here and immigration policies hurt our community

Language access — Communication barriers because English-only and services for communication disabilities

Employment — AAPI are exploited for sex work and other low-paying services

Olmstead: Families feel stigmatized because of the disability and they want to keep the disability in the home and only do the PA work. Also, disability agencies for in-home care, advocacy, media and policy development are dominated by Whites who generally are not competent about serving AAPI’s.

–Anonymous

This image is used for illustration purposes only. It may or may not depict a survey participant.
This image is used for illustration purposes only. It may or may not depict a survey participant.

Recommendations

Be more willing to think beyond the service organization – client delivery system approach. Sometimes it’s important to understand the culture of the client you are working with, and the emphasis on “independent living” can sound very intruding or offensive to families that see themselves as a unit vs. seeing the individual being provided a service. So basically, cultural competency.

–S.H.

I think that there is a need for building a safe community for people to share, and also to have a multi-layered analysis of culture, language, and many forms of medicine to be able to really connect with APA communities on a meaningful level. When we become so hyper focused on medicine as the cure or that people need to be extremely vocal and front-center about their disability, it really makes some people terrified of holding that identity. Which in turn, means they don’t get the support they need to be able to thrive.

–Anonymous

Disability rights organizations and leaders need to recognize that they are primarily White-dominated and have privilege as White people, even with their disabilities. Work on your White privilege. Create a pipeline of disabled AAPI leaders. Recruit and hire qualified disabled AAPI’s into leadership positions. See translation services for AAPI languages as the same as language accessibility. AAPI’s are part of the disability community and when we bring up issues specific to your experience, they are not “diversity” issues, separate from the disability community.

–Anonymous

Linguistically accessible information and materials. There are very few attempts at providing Asian language speakers information on disability rights in Asian languages. Most disability providers have English and Spanish, and that’s it.

Inclusion of Asian faces in disability outreach materials. In the vast majority of bill boards, brochures, PSA’s on disability from mainstream providers, I do not see Asian faces among the white, black, brown faces.

Access to disability rights information is non-existent.   Info about the ADA and other rights legislation is not distributed to API communities in effective ways. Community organizations serving API communities are not provided with the information or not engaged in effective ways to inform and share disability services and rights info effectively.

To be recognized and represented in disability community. To be represented in outreach materials. To have intentional and thoughtful culturally/linguistically appropriate materials on disability services and resources made available. To engage with Asian service providers to work together to address stigma and stereotypes of API communities and disability. For government funding to facilitate development, distribution of culturally appropriate materials.

Reach out to API service organizations and/or groups to build positive working relationships. Invite API leaders, providers to the table to discuss disability issues. Attend API community events, resource fairs, etc to bring disability information/resources to the community. Work with API community to create linguistically/culturally accessible disability resources. Encourage API youth/students to enter into disability service provides. Recruit API’s into disability orgs and fields. Work with API advocacy groups together on policy initiatives to fight for funding to serve API’s with disabilities like funds to translations, interpretations, etc. Connect with API media, (TV, radio, print,) to share stories, announcements, events, news etc about disabilities.

–Jae Jin Pak

As the disability rights community continues to recognize its diversity, focusing on celebrating the AAPI community is an important step. It is also important to respond to problems, but I feel that the focus should be more positive. Because I feel strongly that many issues in the AAPI community relate to immigration more broadly, although I feel it is critical for AAPIs to be involved in organizations and their leadership, its’ also important for organizations to have leaders and advocates who speak more broadly to the immigrant experience. For example, I do not feel that it must always ben an AAPI reaching out to the AAPI community. In fact, I think part of experience of disability is learning from others and realizing how much you have in common and can learn from and support one another.

–Sarah Tom

Do not treat an event, board of directors, council/committee/commission/etc. as “diverse” or “sufficiently diverse” when there is like one person of color in the entire room, especially when that person of color is someone like me (an east asian who is light colored and also, has an Anglo last name and a white family). That shit is not okay.

–Lydia X. Z. Brown

I think that disability rights organizations need to be more intentional about hiring AAPIs at ALL levels of their organizations. Visibility is super important. They need to interact and have more experiences within the Asian American Pacific Islanders communities.

–Aziza Nassar

we need a collective of us. I have a void that is only filled when I am around AAPI’s with disabilities. it is unique family, living in diaspora. I long for my AAPI siblings with disabilities.

-Anonymous

I’m very grateful and appreciative that I have found a few APAs with disabilities in my community. They are also accepting of my additional identities, too – specifically my gender expression and sexual orientation. I feel less alone, less different.

-liz

Articles, Blogs, and Resources

Asian Pacific Islander Disability Awareness Project (APIDAP)

Asians and Pacific Islanders with Disabilities of California (APIDC)

Autistic Hoya

“First Days” videos featuring Deaf South Asian Americans

Growing Up Asian American with a Disability

KimchiLatkes 

Reimagine Ability

The Underappreciated Advocates of Asian Americans with Disabilities

One thought on “Asian Pacific Americans with Disabilities: Our Stories, Our Lives Leave a comment

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