AJWS Vol. 15 No. 3, 2009. pp. 34-59

From Housewives to Activists: Lived Experiencesof Mothers for Disability Rights in Taiwan
CHANG Heng-hao

Abstract
When a family has a disabled child, the mother usually takes on
the caretaker role and also carries the social stigma associated withdisability. Based on participant observation and in-depth interviews with members of the Parents Association for Persons withIntellectual Disabilities (PAPID), this article explores the meaningsof activism for parents who participate in the disability rights
movement. First, it shows the impact of disability stigma on family
members, especially the mothers of disabled persons. Second, thestudy shows that the participants of this movement, mainly themothers of intellectually disabled children, not only promote thewelfare of their children but they also learn to confront social stigma and renegotiate their gender roles. Parents’ associations havebecome an important public space for these mothers to escapehome confinement and enjoy civic life. In contrast, the fathers who
were interviewed saw activism as an obligation and were less likely to show emotional attachment to the civic organizations.

Keywords
Disability rights; social movement; civic organization; gender; stigma; motherhood

AJWS ISSN 1225-9276 93 Ⓒ 2009
Asian Center for Women’s Studies; Ewha Womans University Press
http://acws.ewha.ac.kr

CHANG Heng-hao 35

Introduction
For mothers, having disabled children usually implies the physicalburden of care and stigma associated with disabilities. The interplayof gender and disability further places mothers of disabled children
in a marginal position. Ryan and Runswick-Cole point out a contradiction in disability studies and the disabled people’s movement. On
the one hand, the literature on mothers of disabled people demonstrates the lives of women who speak up for their children and develop the skill to negotiate with the stigma associated with disabledchildren or cope with the material and social burden. On the other
hand, the disabled people’s movement questions the lack of understanding regarding the perspectives of disabled people. Thus, the experiences of mothers with disabled children on gender and disability
deserve more attention (see Ryan and Runswick-Cole, 2008 for acomplete review).
This paper shows that when mothers undertake advocacy onbehalf of their children, they usually need to involve themselves ina process of negotiating their gender identity. Women who participate in parents’ associations for disability rights transform theiridentities from housewives to activists for disability rights. The firstpart of the paper describes the stigma associated with parents who
have intellectually disabled children in Taiwan. Based on their life
experiences, I suggest that this stigma is gendered within a patriarchal culture focused on filial piety and the women are confined athome. They face tremendous pressure not only from society but also
from their in-laws as a result of the patriarchal family structure.
The second part of this paper looks at how participation in parents’ organizations empowers parents, especially mothers, to establish a community and transform their identity. I seek to show thatin advocacy groups they learn to identify themselves as activists fordisability rights. Mothers who volunteer in the advocacy groups begin to consider it their work, which becomes an important part oftheir identities. Their experience in participating in the disability

36 AJWS Vol. 15 No. 3, 2009

rights movement empowers them to also renegotiate gender relationsin the domestic sphere. By participating in advocacy associations,mothers of intellectually disabled children not only construct a new
identity but also increase their social status and gain greater respect
at home. Finally, I argue that in a gendered society where mothers
are primarily assigned to do housework, participating in civic organizations enables them to enter civic life and provides them with away to escape confinement at home.

A Theoretical Overview: Gender and Social Movement
Identity politics and identity transformation have been widely addressed in contemporary social movement literature. Scholars focus
on the framing process of the movement, the formation of identity
in the process of the movement and the construction of collective
identity as its outcome (Hunt, Benford & Snow, 1994; Swidler, 1995;
Polletta & Jasper, 2001; Bernstein, 2005). New social movement theorists argue that in post-industrialized societies, social movements become identity-based and value driven (Offe, 1985; Cohen, 1985; Buechler, 1995; Melucci, 1996). Framing theorists focus on the linguistic
tactics of the movement (Hunt et al., 1994). Other scholars analyze theconstruction of identities in the process of collective action (Lichterman, 1996; Yang, 2000; Dugan & Roger, 2006) and how collective identity facilitates the continuity of the movement (Taylor, 1989; Whittier,1997; Haenfler, 2004).
Since McAdam (1989) showed that there are biographical consequences for social movement participants, some recent studies pay
attention to the consequences of identity politics for activists. Taylor
and Raeburn (1995) demonstrate the negative impact of the practiceof identity politics in activists’ careers. Others argue that the experience of participation in social movements and identity transformation empowers activists. Koo (2001), for example, describes how Korean
workers formulated a new class identity and contested the stigma of

CHANG Heng-hao 37

being working class by participating in social protests and strikes. In
particular, because women are usually excluded from politics and the
public sphere, they attract significant attention in social movements.
Scholars demonstrate that civic engagement brings about identity
transformation and empowerment for women (Herda-Rapp, 2000; Shriver et al., 2003; Narushima, 2004). Traustadottir (1991) suggests thatcaring experiences of mothers of children with disabilities enable
them to reconsider broader societal issues. This paper focuses on
Taiwanese mothers who developed their gender consciousness by engaging in disability rights’ groups and movements for their children.

Parents’ Organizations and the Disability Rights Movement
in Taiwan
Taiwan and other newly industrialized countries (NICs) in East Asia
are known for rapid industrialization in the post-World War II era.
The disability rights movement, which demands that disabled citizens
have equal rights to vote, to be educated, to work, to access public
facilities, to be included in the community and to enjoy a certain quality of life is fairly new.1 The Taiwanese disability rights movement
emerged in the 1980s, in tandem with the transition to democracy.
As was the case in many recently industrialized countries, parents
played a leading role in bringing disability rights issues into the public sphere in the early 1980s. In 1982, a group of parents of persons
with intellectual disability voiced demands for their children’s rights
to education and for community living in Taipei.2 From 1982 to 1986,
various parents’ groups worked closely with charity organizations
such as “Association for Mental Retardation” (Qi-zhi xie-hui, AMR)
and related professionals to provide training for children with intellectual disabilities, since public services for persons with intellectual
disabilities were very limited.
Since the end of martial law in 1987, the disability rights movement has become a visible force in civil society, which initiated and38 AJWS Vol. 15 No. 3, 2009

participated in many social movement protests. The League of Welfare Organizations for the Disabled (Can-jhang-lian-meng) was officially founded in 1990 by disability-related NGOs (non-governemtalorganizations) and became the major disability rights social movement organization in Taiwan. The Parents’ Association for Persons
with Intellectual Disabilities(PAPID or Jhong-hua-min-guo Jhih- jhangjhe-Jia-Jhang Sie-huei) was officially founded in 1992 as a nationalorganization by parents’ organizations from different parts of Taiwan.
PAPID aimed at engaging in public policy, advocating for the rightsof persons with intellectual disability and worked closely with the
League of Welfare Organizations for the Disabled. In other words,
in the process of democratic transition, PAPID was built on the basisof self-help civic organizations and became a social movement organization.
Since 1997, PAPID has become one of the most well organized
civic organizations, with 37 local parents’ associations and 12 associated foundations that provide direct services and are run by parents. Unlike other social movement organizations that lost theirmembers or were turned into elite, lobby-oriented interest groups
during the transition to democracy in Taiwan, PAPID membership
kept growing. As of 2003, it boasted over 10 thousand members fromall over the nation. It played an important role in shaping disability
policy in Taiwan such as the de-institutionalization, independent living and self-advocacy for persons with developmental disabilities(Chang, 2007). Through the cooperation of disability advocates (parents,
persons with disabilities, related professionals) disability rights legislation and public services for people with disabilities were gradually
established. Disability has gradually become a public issue in Taiwan
over the past twenty years and the social stigma associated with it
has also gained public attention.

CHANG Heng-hao 39

Methods and Data
In this study, I focus on one of the most influential disability rights
social movement organizations in Taiwan, PAPID. The main sourcesof data used in this are in-depth interviews conducted in 2003. I interviewed 38 disability rights activists (22 mothers of children withintellectual disabilities, nine fathers, three siblings, four professional
staff in the associations) selected through snowball sampling.3 All ofthem were the main organizers and active participants in the parents’ organizations for disability rights from different regions. All
had engaged in activities for the parents’ organization for at least
five years, and some had even participated in the local parents’ association before the founding of PAPID. I also collected data from secondary sources that included autobiographies of disability rights activists, newsletters from NGOs and documentaries on parents with intellectually disabled children.
PAPID is a national organization located in Taipei; 19 interviews were conducted in Taipei, three in the local chapters in
Kaohsiung and fifteen in the local chapters in other counties (seeTable for background information at a glance). Most of the mothers
interviewed (except one, who was a high school teacher) in thesestudies did not have full-time jobs before the family started to receive social support from the parents’ organization. Some of them became professional staff in the non-profit organizations. All the fathers
interviewed in this study had full-time jobs. Most of the families inthis study were from nuclear families, except one, whose husband
was a medical doctor and passed away a few years ago. There wereno cases of divorced mothers with disabled children in this study.

“Misfortunate Women”: Gendered Stigma and Confinement
Goffman (1963:30) points out that people closely related to stigmatized individuals, for instance, the loyal spouse of a mental patient,40 AJWS Vol. 15 No. 3, 2009

the daughter of the ex-con, the parent of the cripple, or the friendof the blind, will acquire a “courtesy stigma” from society. That is,social stigma is transferred to them by association. Family membersof disabled people certainly carry the courtesy stigma associated withdisability (Green, 2003; Green et al., 2005). For example, they experience labeling, stereotyping, separation, status loss and discriminationin the United States (Green et al., 2005). Few studies have examined
how people burdened by courtesy stigma perceive, negotiate andconfront such a label in different socio-cultural contexts. In my study
sample, for example, a father described his first encounter with disability-based stigmatization:
When my wife gave birth to my kid [with Down syndrome], I immediately recognized that he looked different; there must be something wrong. But the doctor avoided seeing us and did not return
our phone calls. It was the nurse who pulled me aside and whispered to me, “According to my experience, it must be Down syndrome. Doctors do not want to talk about it. It’s all in the genes,
there’s not much modern medical technology can do.” At that moment, I felt like it was a death penalty (Interview #17).

By avoiding telling parents the bad news, medical professionals in
Taiwan informed them that the disability was stigmatized. Insteadof receiving emotional and professional support in the hospital, thefather felt that the birth of his child was like a “death penalty.”
The stigma associated with disability can be explained in partby the traditional belief in filial piety. Chou and Palley (1998) explainthat having well-educated, high-achieving children to honor ancestors and continue the family lineage is emphasized in Taiwan.4 They
argue that “the meaning of having ‘a good child’ is for not only thefamily but also their ancestors. Having a child with developmental
disabilities not only involves losing face but is also viewed as a family disgrace” (Chou and Palley, 1998: 42). As a result, family members of developmentally-delayed children usually confine themselvesto the private family sphere and are unwilling to seek public support.

CHANG Heng-hao 41

The traditional focus on filial piety does not fully account for
the extra burden placed on mothers, however. At the end of the
documentary about the experiences of Taiwanese parents with intellectually disabled children, Lin, President of the Wen-shan special
school, pointed out:
It is usually the mother who can accept the developmentally delayed child. I don’t know why. My guess is that probably [it is because] mothers give birth to children, which creates a natural connection that traditionally fathers do not have (Yang, 2005).

Mothers tend to take on not only all the care-giving work but also
the moral responsibility of having given birth to a disabled child.
They are usually more isolated from society than fathers, in part because of their shame regarding the stigma of having a disabled child.
One mother wrote about isolating herself and her disabled daughter:I built a wall in my heart, a wall not allowing strangers to visit;
my little daughter built a wall in school, a wall not allowing
friends to visit home; my mom also built a wall of grief. My elder
daughter, a girl with intellectual disability, was at the center of thewall. I, her mother, was the one who incarcerated her inside thewall. . . . I never talked about her in front of new friends. All thefriends who know about her were the friends I had before I gavebirth to her. It is me who started to build the wall. The rest of thewalls were built by my mom, my daughters, and other relatives.
They saw me avoiding my daughter, so they decided to not recognize the existence of my daughter (Liu, 2002: 21).5

A mother I interviewed recognized that the stigma came not only
from the public but also from her own family members. She used
“information control” and “passing,” terms suggested by Goffman (1963)
to negotiate the stigma in her familial relationships:
In the early days it was really hard for me. I had to hide my child’s
delayed development. I had to swallow all the tears and sweat. I

42 AJWS Vol. 15 No. 3, 2009

could not even tell my siblings. I just told them that it is hard to
take care of and educate a kid. They might know that it is difficult
to raise my kid, but they don’t really know what’s going on. I never told them. I have to face all the problems myself. Sometimes I
would suddenly wake up at night and think, “Who can take careof my child in the future?” (Interview #21).

In this case, the mother hid the disability from her siblings, tellingthem only that “it is hard to take care of and educate a kid.”
In general, besides the social stigma in public, mothers of children with intellectual disabilities experience tremendous pressure
from their in-laws. One mother remembered, “When they found outthat my child has intellectual disabilities, my mother-in-law did noteven want to look at us at home. We [she and her disabled child]are invisible in the family” (Interview #13). One of the parents from
Chou and Palley’s study similarly reported: “My mother-in-law told
me that I should not go out with my [disabled] child, in order toavoid people’s attention, since people think that to have given birth
to a mentally retarded child is caused by our ancestors lacking virtue” (Chou and Palley, 1998: 43). Mothers are often blamed for giving
birth to an intellectually disabled child. One mother I interviewed
said: “My in-laws suggest that since I gave birth to the intellectuallydisabled kid, we should get a divorce and find someone who candeliver a healthy baby” (Interview #25). Another mother simply said,“I don’t want to talk about them [her in-laws] and their ignorance”
in blaming her for giving birth to a disabled child (Interview #11).
Isolation and discrimination comes from the extended family as well.
One mother “gradually realized that we [she and her intellectuallydisabled child] were not welcome at main family events like weddings. It was not only inconvenient [for them], but they thought that
I was a misfortunate woman who would bring bad luck to the newly
wedded” (Interview #38).
Mothers with intellectually disabled children thus not only carry the courtesy stigma associated with their children, but also a gendered stigma that does not affect their husbands.6 Fathers frequently

CHANG Heng-hao 43

mentioned that it was their destiny, a patriarchal obligation, to takecare of their disabled children, but expressed less concern about social pressure and stigma. One father said that although “it is inconvenient to take him to family gatherings or out in public, I do not
feel embarrassed or anything” (Interview #16).
The difference between mothers’ and fathers’ experiences suggests that under the paternalist family ideology of Taiwan, mothers
take the moral blame for having given birth to intellectually disabledchildren. They take the responsibility because the social function of
the female body is reproduction and thereby manifest the moral lapseof their husbands’ ancestors. When mothers do not produce “good”
children, the patriarchal family blames them and sometimes excludes
them and their children from the family; they become an invisible
burden on the family. Since fathers are not considered the cause of
the disability, they are merely pitied for having the obligation to carefor their misfortunate wives and children. In this way, the courtesy
stigma associated with intellectually disabled children is gendered.
The supposed family-orientation of Asian societies does not therefore
extend to supporting disabled children and their mothers.

Parents for Disability Rights: Identity Transformation andEmpowerment
Before the lifting of martial law in 1987, the conservative political environment did not allow parents direct confrontation with the state.
The language of rights may have been used in the media, but in social contexts it provided little support for intellectually disabled children. The Taiwanese mothers interviewed sought any possible information and assistance that was available.7 They attended relevanttalks at hospitals or college campuses. Some even went back to school
and got degrees in related fields such as special education or social
work. They organized after-school programs whereby they could
share their experiences and educate their children (Chang, 2007).

44 AJWS Vol. 15 No. 3, 2009

Since the political opening in 1987, parents have started to organize parents’ associations to advocate for disability rights. The engagement in civic organizations also brought new meanings to theiridentity. Parents established a collective identity and were empowered by participating in these organizations. First, they establishedbonds with other parents. Their organizations became a new home
for them. They also learned a new language that helped them redefine their stigmatized status. Second, many of them found greater
meaning through volunteerism, which became the “real” work of theirlives.
Sharing Grief and Advocating for Rights
After martial law was eliminated in 1987, many parents with intellectually disabled children founded organizations. By participatingin such associations, parents adopted new concepts for negotiating
and reconstructing their identities. For example, in Hsin-Lu and
PAPID publications, medical definitions of disabilities were introduced to reframe issues and encourage parents to face their children’s
disabilities as a medical issue. Statistics were used to show that disability was neither a private problem nor an individual anomaly.
This framing tactic was reflected in how parents interpreted disabilities in our interviews. One mother said:
It is just by chance. Two percent of the population will have intellectual disabilities. It is not my fault, nor does it have anything
to do with my previous life. I will not be bothered by their [herin-laws’] ignorance (Interview #17).

Thus, parents borrowed Western discourse, statistical reports and scientific evidence to redefine disability and contest traditional beliefs.
More importantly, such associations provided a civic space8 into which parents could escape the confinement of home and find a
community. One mother said:
In the beginning, I just wanted to escape from home, since we lived

CHANG Heng-hao 45

together [with my in-laws]. By the end, I started to enjoy sharing
experiences with others and helping others. I realized that my status in the family changed after they knew that I was helping others
as well (Interview #24).

Another mother stated:
What affected me the most in the parents’ association was that I
could hear echoes [of my own experience]. It was not only that I no
longer felt alone, but I felt that I was not the only one who went
through this. Many people had the same experiences and they all
went through it. What I gained the most was their experiences. I learned a lot from other parents’ experiences(Interview #23).

Parents’ associations were more than mere places where friends withsimilar experiences got together; they became idealized, “supportive
families” for parents with disabled children. As one of the mothers
put it: “We are like brothers and sisters, I feel closer to them than
to my real siblings. Our grief, sufferings, and worries can only beshared with those who have similar experiences” (Interview #14).
Meeting other parents also enabled members of these associations to change their attitudes toward their own children. A motherremembered:
I felt uncomfortable and was unwilling to take my child out withme. It was a matter of face. After participating in the parents’ association and getting to know other parents, I gradually opened up
my mind. I felt that, just like me, they have kids like this, too.
There is nothing to be ashamed of. In addition, if we did not startby changing ourselves, if we looked down on our kids and were
not willing to take them out in public, who would accept them?
After a while, I started to take him out with me. [. . .] Actually, I
started it. I took him with me to the annual meeting every year.
Others started to follow. Now, many parents have done that. Allof us have gotten used to it. If I did not have these sisters [in theparents’ association], I do not think that I could bring my child out
in public (Interview #21).

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As Goffman (1963) recognized, stigmatized people find a new senseof self when they participate in groups made up of others like themselves. These parents were empowered when they confronted social
stigma and refused to be limited by it. One father mentioned how
sharing his experience with others resulted in a sense of pride in
how his child had touched the heart of others:
I took my kid everywhere, even when we [the parents’ organization] visited other countries. The parents in Macau and Hong Kong
all treated him well. I was impressed. When we visited Guangzhou, you could really feel touched. He was very active there. The
parents from China were in tears [because it had been unthinkablethat an intellectually disabled child could travel with his father andhave a meaningful social life] (Interview #33).

Gaining a new pride in parenthood thus played a key role in consolidating a collective identity among participants in these associations.
Many early participants expressed the desire of Zong Jing-yi, the pioneer of the parents’ movement, who said during a national tour, “AllI wish is that I can live one day longer than my daughter” (quoted
in Liang, 2000: 33). Ironically, outliving one’s disabled child is seen
as a form of filial piety on the part of the child. A seventy-threeyear-old mother whose disabled child had passed away said:
You know, my boy is really a filial child. He passed away peacefully a few years ago. He knew that I was getting old and could
no longer take care of him. He knew that I would go peacefully
with no more worries if he passed away before me (Interview #14).

Another mother from a parents’ association echoed her sentiments.
She wrote:
When I heard her child had passed away all of a sudden, while
sleeping, it might be unforgivable to say it, but I felt that it wasa happy ending. What’s unbelievable is that almost ninety-nine
percent of the mothers felt the same way. Some even sighed andCHANG Heng-hao 47

said, “The boy was a filial child. He knew that his mom was oldand could no longer take care of him, so he went first. A child useddeath to show his filial heart.” This is an unbearable pain and it
is also so real. Most parents might feel pain when they lose theirchildren. But the parents with disabled children have this abnormal
reaction. This kind of pain cannot be understood by others (Su,
2000: 56).

Sharing such “abnormal” grief allows parents to establish strong solidarity and a collective identity within the civic space of parents’ associations.
In public, association members present themselves as concerned and worried parents who are speaking for their children’s rights.
The slogan of PAPID is “Parents love, never give up: parents’ voices
for persons with intellectual disabilities.” The slogan suggests thatparents will never abandon their children because they love them.
Belonging to the association and sharing their experiences with others enables them to “never give up”:
What keeps this organization strong is that we are all parents withintellectually disabled children. Because we are all concerned about
the rights and welfare of our children, we can work across gender,class, and ethnic lines and overcome our differences. We do nothave any selfish thoughts. It is all for our children (Interview #7).

This discourse of obligation and concern, coupled with the conceptof citizens’ rights, became the language of parents’ associations. One
mother explained:
We were not troublemakers. We did not beg for charity. We justwanted to have what our children deserved. Why can other kids
go to school, but ours cannot? The constitution did say that everyone has the right to be educated (Interview #35).
In this discourse, it is a parental obligation to speak for their disabled children because parents cannot take care of their disabled

48 AJWS Vol. 15 No. 3, 2009

children forever. The disability rights movement thus frames parental obligation as demanding social protection and public support for their children. The idea of individual civil rights plays animportant role in justifying their actions and confronting the moral
responsibility of mothering. The rights and obligations between
citizens and state are contested as parents demand that practicalsupport comes from the state.

Citizens’ rights language was also evident in parents arguing forgroup homes for disabled people. When a group home was being established in the Jian-Jun Apartment Complex in 2003, community
residents argued against it by saying, “Take your children home. It
is your responsibility to take care of the children.” Parents fromPAPID and the Parents Association in Taipei replied, “It is our children’s right to be part of the community.” The idea of citizens’ rights
enables parents to confront a hostile social environment that presumes
that the entire obligation to care for intellectually disabled people
should rest on their mothers.
In sum, parental concerns about educating and caring for theirintellectually disabled children initiated the parents’ movement fordisability rights. The tacit rights and obligations between citizens andthe state were renegotiated in the process of mobilizing the social
movement. Specifically, parental obligation was redefined. Instead ofcaring for their children in the private sphere, it came to mean guarding their children’s rights in the public sphere. In this process, theidentities of these parents changed. They went from being parentsof disabled children to parents for disability rights.

Finding Meaning in Volunteerism and Civic Engagement
Many mothers with intellectually disabled children quit their jobs inorder to take care of and educate their children at a time when the
support system in Taiwan was very limited (Chou, 1997). As social
service programs for the disabled developed along with the disability
rights movement, the activism and volunteerism began to have an

CHANG Heng-hao 49

impact on their lives and identities. While some mothers who participated in parents’ associations retained their status as housewives, others found new careers for themselves as volunteers. A career in activism/volunteerism is here defined as either working for a non-profit
organization as a full-time employee or volunteering in an unpaid position that requires a hefty time commitment, such as serving as thepresident of a committee. In this section, I examine how parents, especially mothers, perceived their work in these parents’ associations andwhat volunteerism means to them.
The commitment to volunteer work provided mothers with asocial space different from that of being housewives at home withdisabled children. A president of a local parents’ association expressed her excitement over her new social status:
If I had not participated in the organization, I might not have ever
had the chance to visit Taipei. When my work got recognized by
the media, my husband actually started to help me take care of mydaughter and even helped with the work in the parents’ association. In addition, my in-laws and relatives actually looked at medifferently (Interview #13).

Many mothers began to consider volunteering at PAPID as their realwork. In interviews, they often commented, “This is my work” or “I
have to get my work done.” One mother said: “I come to work at 8:00
a.m. and go home at 5:00 p.m. I also work overtime a lot. I am working here; I just do not get paid. But I love my job. It is my career”(Interview #8). In other words, volunteer work in parents’ associations thus became an important part of the mothers’ life experiences
and identities. They also sought to redefine the meaning of work,from paid work to volunteer work in the NGO, which became partof their new-found identities.
Activism in NGOs did not allow mothers to give up theirhousework, of course. Many of them commented that it was a constant battle to find the extra time they needed to do volunteer workin a parents’ association. One mother noted:

50 AJWS Vol. 15 No. 3, 2009

Of course, I had to finish my [house] work before I went to theassociation to help out. Sometimes my husband complained. I tried
my best to keep a balance between maintaining the house andworking for PAPID at the same time (Interview #36).

Another mother explained:
It was not that easy. My husband spent more time with my child[than I did]. In the beginning, my family was not used to it. But
they gradually accepted it and got used to it. [. . .] I had to makearrangements. People thought that I spent a lot of time at the association and did not do housework. They were wrong. My husband
did not go into the kitchen; he did not even know how to wash
dishes. I had to do everything: cooking, washing dishes, doing thelaundry, and cleaning the house. When he realized that my work
was important, gradually he could accept it and take our child to
eat in a nearby diner (Interview #8).

In other words, the autonomy of these mothers was still restrictedwithin the family-gendered division of labor. They might have founda way to negotiate with the share of work in the domestic sphere,
but still considered housework and care-work as mothers’ work. As
this study shows, the participation of the parents’ organization enabled them to negotiate more time and space for themselves or searchfor support outside the family domain. The gendered division of labor in the family was challenged, negotiated and reshaped, but was
not totally changed.
Most of the mothers interviewed had to quit their fulltime jobs
when they had to take care of the disabled children. Not surprisingly, when they had a chance to participate in the parents’ association and receive social support, those who had previous work experience were more likely to take up positions, paid or unpaid, in theparents’ associations. Mothers who had been housewives before they
had the intellectually disabled children might have been willing toparticipate in the associations, but were less likely to take leadingroles or paid jobs. In other words, previous working experience may

CHANG Heng-hao 51

have influenced their commitment to the NGOs.9
There was only one respondent in this study who had continued her regular job as a high school teacher and at the same time
took a key position in the parents’ association. She pointed out thatas a high school teacher with tenure, she had a flexible schedule, so
she could devote time to the parents’ organization. Eventually, it became too burdensome and she had to make a choice. “I cannot put
any more time into the association any more,” she decided; “I amwilling to do more after I retire” (Interview #11). In other words, volunteering in the civic organizations was still considered secondary
to paid work.
Fathers had very different experiences in parents’ associations
compared to mothers. First of all, most households were registeredin the associations under the father’s name, even though mothers
were the more active participants in the organizations.10 Second, fathers viewed their involvement as part of their obligation to theirchildren. They may have agreed that they gained a lot from being
involved in the movement, but they generally did not see their participation in the movement as “work.” It was more in the way of asurplus or addition to their career, or an extracurricular activity tofind new meaning in life. One father said:
Of course, I sacrificed some of my career in order to get involvedin the advocacy work and parents’ association. However, I realizedthat it was more meaningful than my regular job. I certainly foundthe joy of helping others (Interview #16).

Mothers and fathers also had a different experience in that manymothers were discouraged by their husbands from engaging in the
public sphere. One mother remembered that “the president of ourorganization had to talk to my husband and ask him to let me workin the organization” (Interview #20). Some husbands thought theywould lose face if their wives appeared in public. Another motherrecalled her husband cursing and saying, “You are so proud of having a mentally retarded kid, right? You feel really good about show-52 AJWS Vol. 15 No. 3, 2009

ing up on television!” (Interview #15).
Mothers developed different strategies to negotiate with their husbands’ expectations that they should remain in the domestic sphereas housewives and caretakers. One mother told her husband, “I dothe volunteer work for our children who carry your family name, notfor myself” (Interview #24). Another mother said: “What I have done
will benefit our family as well” (Interview #36). The idea that involvement in the parents' associations contributed to the family was a regular theme in these negotiations. When their work was recognized asimportant and brought benefit to the family, such as free health insurance for the disabled children, some mothers found that their status at home improved. One mother commented: “Somehow, I felt like
I was a more valuable person. My status at home actually improved.
My in-laws started to give me more respect” (Interview #13). To someextent, by advocating for their intellectually disabled children’s
rights, mothers also advocated for their own rights. They used thelanguage learned in the movement to frame their own positions. One
mother said: “Just like my kid, I need my own space and my own
social life. I am not a slave to my husband” (Interview #38). A better
public support system and the civic space provided by the volunteer
associations freed them from confinement at home.
Most parents mentioned that they considered their work in parents’ associations to be social, not political. They described it as“social business” that was “good for the society.” Their advocacy work,
including street protests and lobbying, certainly engaged the politicalsphere, but in their understanding, however, “social business” referred to something that was good for the general society, especiallymarginalized groups, while “Politics,” was what the government andparliament do. In every interview, parents expressed their frustration
with and disappointment in politicians and bureaucrats. Interviewees
regularly commented: “Government officials are very unprofessionaland bureaucratic” or “Politicians only care about their own interests.”
Thus, while parents did not describe their involvement in the movement as a form of civic engagement or civil society, they did have

CHANG Heng-hao 53

a strong sense that their “social commitment” was separate from thestate and political society.

Conclusion
In the past twenty years, disability rights have gradually become apublic issue in Taiwan. The social and cultural meanings associatedwith disability remain uncontested. This paper shows that livingwith the ideology of patriarchy and filial piety, mothers carry all themoral responsibility and public shame associated with disability because they have not produced “good children” to sustain the familyline. As a result, they experience stigmatization not only in public,
but also in the family.
Although having intellectually disabled children entails tremendous care work and social stigma, advocating for their children’s
rights opens another door for the mothers. Participating in volunteer
associations enables parents with intellectually disabled children totransform their identities. They establish a strong support community and learn to consider themselves activists for disability rights. In
addition, they learn new techniques for negotiating social stigma.
Furthermore, mothers become empowered through volunteerism.
NGOs create a civic space for women who have intellectually disabled children. They consider their involvement in the parents’ associations their “work” and use their involvement to negotiate theirroles as housewives and caretakers in the domestic sphere. In somecases, their social status improved by committing to such parents’organizations. Volunteering in advocacy organizations enables women to enter civic or public life; in advocating for their children’s
rights, thereby, mothers of intellectually disabled children find new
identities and gain a sense of autonomy.

54 AJWS Vol. 15 No. 3, 2009

TABLE 1. SUMMARY OF PARTICIPANT INFORMATION
Background
GenderAge

Education

Occupation (current)

Relation to people with disabilities

Residence

Ethnicity

Total Numbers of Participants

Categories

N

Male
Female60 and above
50–59
40–49
39 and below
N/A
Graduate School
College
Junior college
High school
Elementary school
N/A
Housewives
Work in NGOs (paid)
Work in NGOs (unpaid)
Other occupation
Government official
MotherFatherSibling
None (Professional staff)
Taipei City
Kaohsiuang City
Other regions
Hoklo (minnan)
Hakka
Mainlander
Other & N/A

11
26
7
19
5
3
3
8
12
8
5
2
2
6
13
5
12
1
22
9
3
4
19
3
15
23
2
5
7
37

Notes
1. The disability rights movement also waged a struggle in defining identity and challenging the stigma associated with disabilities. The

CHANG Heng-hao 55

disability rights movement was part of the new social movements of thetime because it: (1) was located at the periphery of traditional politicalsystems; (2) offered a critical evaluation of society; (3) was concernedwith issues relating to post-materialist values; and (4) focused on issues
that crossed national boundaries (Oliver, 1990: 118–123).
2. The disabled people’s movement of the UK and the independent living movement in the US both emphasize the self-advocacy andself-determination of disabled people. The Taiwanese disability rights
movement, however, had a different issue in the 1980s regarding thecontext in which support for disabled people was considered to be afamily issue. The independent living movement in Taiwan emerged in
2003. The self-advocacy activities for persons with intellectual disabilities
were initiated by PAPID in 2003. One can even argue that there was no“disability rights movement” in Taiwan before 2003. However, since parents in the 1980s started to use the language of rights, Chang (2007) suggests that the early 1980s should be seen as the starting point of the disability rights movement in Taiwan.
3. The main purpose of this paper is the gendered experiences ofparents who have disabled children and participate in advocacy NGOs,thus, the perspectives of their children with disabilities were not includeed.
4. There are three forms of filial piety: (1) continuing one’s lineage
by getting married, having a family and rearing children; (2) adding to
the value of one’s parents’ and ancestors’ lives by having well-educatedchildren; and (3) fulfilling one’s parents’ and ancestors’ ambitions andexpectations by making up for their lack of achievement (Young, 1988).
The third may warrant great self-sacrifice (Shu, 1988) (cited in Chou andPalley, 1998: 38–39).
5. Such isolation is not limited to Taiwanese mothers. A motherof a disabled child in the United States reported that, “When you’re ina difficult situation like that, it’s very hard to reach out to somebody.
You tend to isolate yourself. You don’t want to be social . . . . You don’t
want to look good. You don’t want to have friends over for dinner”(quoted in Green, 2001: 808).
6. The stigma attached to infertility is similarly gendered. In somecases when the husband is infertile, the wife not only shares the stigma,
but tries to cover up for her husband in order to protect his masculinity

56 AJWS Vol. 15 No. 3, 2009

(Wu, 2002). Under patriarchal social structure, men and women have different experiences of stigmatization.
7. Even when disabled children are entitled by law to social welfare, Read (2000) shows that mothers of disabled children in Britain haveto constantly voice their children’s needs for adequate services.
8. I use the term “civic space” to refer to the sphere which is situated between public and private and not totally open to the generalpublic. In other words, it is similar to “Alternative publics” in Nancy
Fraser’s words (1997).
9. As the cases in this study were limited, I will not make a strong
general argument on these lines here.
10. Since caretaking is such demanding work, it is unlikely thatboth parents can get actively involved in the associations, since someone
always has to be at home to care for the child. Consequently, with the
exception of two couples, I interviewed either mothers or fathers fromany given household, not both. Only in one case both parents were actively involved, but the husband was employed by the association

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