My 31-year-old sister has Down syndrome. She lives in her own house, three miles away from my 70-something parents, and she works part-time busing tables at a local café. An extended network of people help her live on her own: my mother, her full-time advocate and teacher; my father, her biggest fan and supporter; her caseworker, Alicia, who oversees the coordination of her social services; her live-in house companion, Eleanor; her habilitation training specialist, Delores, who helps teach her skills such as balancing her checkbook; her speech pathologist, Judy; her boss, David; her 80-something best friend, Ellen, who gives her rides around town; and finally, her close friends Laurie and Elizabeth, two middle-aged dance therapists who listen to her and provide her with an endless supply of hugs. Then, of course, there's me, but I live thousands of miles away.

From my vantage point, it is particularly evident how much of my sister's daily existence depends on this extended family of friends and professional caregivers. In this respect, her life is not so different from that of other families in our country. Many families rely on similar (though not always as extensive) networks of support; it is just that in my sister's case, the intricate web holding her up cannot be ignored. It is there, in plain view, for all who look.

This reality conflicts with the vision we have of family in our country. In spite of all the changes over the past 60 years, we still tend to think of the American family as a self-contained, autonomous unit, a self-sufficient grouping that can take care of its own. As feminists, we have done a lot to explode the June Cleaver illusions our society has stubbornly clung to: that fathers work, while mothers stay at home; that "normal" families come in only one color (white), one class (middle), and one geographical setting (the suburbs); that one parent is male and the other is female; that the "normal" path for children is to leave the nest at 18, attend college and/or get a job, marry, and have their own children. We have thought a lot about the role of women in the family, and how caretaking—both of children and the elderly—disproportionately falls to women, whether they are mothers or daughters, day-care workers or nannies, nursing-home workers or home-care attendants. But we still need to think more about the families of the approximately 49 million Americans (more than half of whom are women) who are physically, mentally, or developmentally disabled.[1] These "special" families" make visible the relationships and connections on which all families depend. It is just that our normative definitions of family as biological, autonomous, and able-bodied blind us, as a country, to the webs supporting so many of us.

The pages that follow draw from the years I have spent observing my parents and the members of our extended family striving to create a rich and meaningful life for my sister. While noting some of the important work authored by disability studies and feminist scholars, this essay focuses on my family's experience in its exploration of the thorny issues that families with disabilities face. My hope is that our story will join the collective cry for a more inclusive vision of family and for social policies that support all families, including those who fall outside of what, in this country, is deemed "normal."

Extending the Family

When I told my sister I was working on an essay about her, she seemed pleased. I explained that I was writing about her experience of living in a family, and I asked her what she thought "family" meant. Unprompted, she responded as follows, a bit slowly but unmistakably clear:

Family is just a connection. They're always there for you when you have any problems. That's what a family is all about—joy and comfort and heading you the right way. They are guiding you in the right direction.

I then asked her who was in her family, and she listed the following, in this order: her Aunt Dori; her friends Laurie, Ellen, and Elizabeth ("they're, you know, my adopted family"); and her neighbor Elise. When I prompted her for more names ("what about me?" I asked, with some trepidation), she said, "Oh yes," proceeding to add mom and dad, my husband, and his family in Chicago. When I asked her if there was anyone else, she hesitated, and finally mentioned Eleanor and Dee. "It's a big family!" she said, sounding somewhat surprised at the number of people she'd mentioned. "I'm lucky to have a big family."

Indeed she is. The people she listed all genuinely care for her, whether they are paid professionals, friends, or biological family. But my sister does not differentiate between the family she was born into and everyone else (alas, being her older sister apparently does not gain me a particularly high rating). She has made strong emotional connections with all the people who help "guide" her in the "right direction." From her vantage point, we are all just one big family.

One thing remains invisible in this family portrait: The years my parents spent assembling this network. I will not detail here the struggles they faced (and still face) in enabling my sister to live "independently"—the endless hours my mother spent on the phone, attempting to secure assistance through governmental programs; the years my father spent working to make enough money to provide for her. Of course, my sister has been an active agent in initiating and building many of these relationships herself; but it was my parents who provided the foundation for her to "grow" a family that extended beyond her biological one. They understood, from the beginning, that the three of us simply could not meet all my sister's present and future needs.

We have come a long way in our country toward providing support for individuals like my sister, but, in her case, the available governmental programs have never been quite enough. Even with the passage of the Individuals with Disabilities Education Act (IDEA) in 1973 (legislation which has never been fully funded), my sister's teachers never filled out an individual education plan as required by law until high school. And although the disability rights movement achieved victory with the passage of the Americans with Disabilities Act (ADA) in 1990, her life continues to be filled with formidable challenges. For example, she spent 10 years on a waiting list for Medicaid services; there is no public transportation to take her to her part-time job; and she has had an uphill battle finding a doctor willing to see a disabled patient on Medicare.

Ours is but one situation. The range of disabilities is enormous; while many individuals can live even more independently than my sister, others need round-the-clock support and medical attention. Over the past couple of decades, we have begun to hear about their lives: Many individuals with disabilities (in addition to their parents and their siblings) have written about their experiences in memoirs, fiction, and poetry. One motif that recurs is the importance of supportive communities. In many cases, disabled individuals have crossed geographical boundaries, forming local, national, even international communities. Local organizations, such as Harilyn Rousso's New York City–based Networking Project for Disabled Women and Girls, founded in 1984, have gained national followings. Cyberspace has become one of the most fertile meeting grounds of all. Online groups such as Sick Chicks and Twisted Sisters and The GimpGirl Community provide supportive communities and pockets of resistance to mainstream American culture. These networks, like my sister's family and the other "nontraditional" families discussed in this issue of S&F Online, inhabit a space that some critics have called "queer." In this context, the word "queer" suggests the ways in which these family groupings resist and challenge normative definitions of the family as biological.[2]

In fact, most nuclear families—whether their members are disabled or able-bodied—go through periods, at times prolonged, of needing support and care from extended family, outside communities, paid caregivers, counselors, or governmental programs. It is simply that my sister's needs are so undeniable and so inevitable. You cannot blame her for needing help, as we so easily blame others—welfare mothers, homeless families, working parents—who also need support. But our fantasy of the self-sufficient family permeates our social policy. It informs the conservatives advocating a return to "traditional" notions of family and the politicians creating (and cutting) our social programs. Indeed our entire rhetoric of what does and does not constitute a "family" prohibits us from developing social and legal policies that might nourish and draw on existing networks for individuals with disabilities. What if, for example, everyone in my sister's extended family, and not just her parents, were invited to her annual review sessions in order to discuss her programs? Wouldn't we collectively have more information about her life than the legitimate yet naturally limited perspective provided by my parents? Ultimately, shouldn't my sister's definition of her "big family"—the individuals she trusts to guide her in the right direction—influence the way that resources are delegated, and programs structured, in her life?[3]

Female Caregiving, Disability, and the Family

Another one of our favorite myths about the family centers around the figure of the mother, the compassionate, nurturing caregiver who puts everyone else's needs before her own. As feminists have argued, this vision does a disservice not only to individual women, but also to their partners and children. It has placed unreasonable burdens on mothers who wish to work or who are disinclined to act in a traditional mothering role, and it has prevented men from developing their own ability to nurture and share in child-care responsibilities. As feminists such as Ann Crittenden have argued, our current socioeconomic system depends, in large part, on families buying into this powerful ideology of motherhood.[4] Through the labor they freely perform as caregivers, mothers have absorbed the hidden costs of capitalism. Yet because child rearing has been pushed into the private realm, out of sight of the public world of work, we often do not see the connections. In the same way that female caring for children has been relegated to the private world (whether the caregivers are mothers, nannies, or day-care workers), so have the issues surrounding the care of the elderly, the terminally ill, and the disabled.[5]

Caring for the disabled is an important feminist issue. The overwhelming majority of caregivers for the disabled population are female.[6] According to researchers Marty Krauss and Marsha Seltzer, after mothers, sisters are more likely than brothers to care for their siblings.[7] Indeed, on SibNet, an Internet support group for siblings of individuals with disabilities, the majority of the participants are, like me, sisters. Outside of close family members, the two main groups of people who help care for individuals with disabilities—employed caregivers and human services professionals—are likely to be women.[8] (Employed caregivers also tend to be women of color who are often underpaid and overworked for their labor, producing inequities that can undermine the compassionate caring that all individuals, including the disabled, deserve.[9]) My sister's case is no exception: Aside from my father and my sister's boss, all her caregivers are women.

The issues facing the disabled and their caregivers are particularly complex. To begin with, many individuals, such as my sister, need some level of care for their entire lives. My sister has accomplished what is, for her, a high level of self-sufficiency (a praiseworthy accomplishment, and particularly so in a culture that disdains neediness and esteems independence); but the reality of her life is one of interdependence. And in order to do things like work and live apart from my parents, to live "independently," she needs daily help. Not a lot, perhaps, but enough: a ride to work and to the grocery store, a reminder to turn off the oven, a helping hand with her bank account. Other individuals with disabilities need far more assistance than she does; and given the short supply of compassionate, well-compensated caregivers, it is no wonder that so many adults with disabilities continue to live with their parents.[10] In failing to provide adequate support to these families, our country places them under a lot of strain. Many of them live in varying degrees of isolation, creating conditions under which unhealthy psychological codependencies can develop between the disabled and their caregivers.

What, then, can feminism offer disabled individuals and their caregivers—or, perhaps I should say, what can the experience of disability offer feminism? How can we remedy situations where disabled individuals are thwarted, caregivers not well compensated, and families overwhelmed? As many scholars have suggested, the answer partly lies in placing a higher value on the labor of caregiving. As Eva Feder Kittay argues, we need to integrate the principle of care into our concept of justice.[11] It was equality, after all, that inspired both the feminist and disability rights movements to stand up for the rights of women and of individuals with disabilities; and as a result, people like my sister are finally being seen as full human beings and citizens with equal rights. The next step, however, is to provide better support for individuals like my sister—for all individuals—in the context of the interdependent relationships of family.

What our country needs, in other words, is a vision of family that acknowledges our complex interdependencies. By listening to and learning from the experiences of individuals with disabilities and their families, we can rethink the operating terms and assumptions of social policies and work toward a society that can nurture all families—both the ones we are born into and the ones we forge along the way.

Extending the Family, Part Two: Disability and Reproductive Rights

One issue I have not addressed is the disconcerting but inevitable question: What if my sister wants to have children of her own?

It is not merely a theoretical issue. Although my sister sometimes acts like a child, she is a 31-year-old adult. She has a male friend who seems to reside in the nebulous territory of more-than-a-friend, but not-quite-a-boyfriend. To my best knowledge, she has done nothing more than kiss him once or twice. I do not really know what she thinks of him; she admits to liking the kisses, but she seems very reluctant to call him her "boyfriend." Perhaps she is simply not attracted to him. But I also cannot help but hear my mother's voice in the way my sister talks about him. "It's okay to be friends," she says, and I agree; but I wonder to what extent my mother's fears have influenced the way my sister experiences her own sexuality.

Understandably, my mother has more than the usual parental anxieties. We all do. Does my sister really understand the mechanics of sexuality and reproduction? Could she navigate this territory safely and unharmed? And were she to become pregnant, who would help care for her child?

I admit to feeling uncomfortable asking these questions. It is not easy to think about my sister's sexuality, and it is even harder to think about her as a mother. In this I am not alone. We are reluctant, in our culture, to see disabled women as sexual. [12] In particular, we tend to regard individuals with Down syndrome as living in a suspended childlike state, permanently removed from adulthood, even though their feelings and desires may be far more developed than their ability to verbalize or analyze lived experience. We are also unwilling to think of disabled women as mothers. Disabled mothers challenge our cultural myths of motherhood, the fantasy of the nurturing, able-bodied caregiver who can do it all alone. How can a woman with a disability—a category associated with weakness, infirmity, and inadequacy—care for a child? And yet, as writer Anne Finger (Past Due: A Story of Disability, Pregnancy, and Birth) and the writers in the collection Bigger Than the Sky: Disabled Women on Parenting demonstrate, plenty of disabled women have fought against societal prejudices and obstacles for the right to raise children.

Historically, American society has denied disabled women their sexual and reproductive rights. Many states have had laws forbidding people with epilepsy, mental retardation, and psychiatric disabilities from marrying.[13] Medical professionals have encouraged (or forced) women with disabilities to be sterilized, a practice that continues. The fears driving these recommendations are multiple: that women with disabilities cannot care for their own children, or might even harm them; that these children might become burdens to the state or to their families; that it is not fair to the children, who would not receive a "normal" upbringing. Our cultural anxieties are also driven by the worry that the children might be disabled—a fear that is groundless when the disability in question is not hereditary, as with Down syndrome, but one that nevertheless pervades our discussions.

Disabled feminists have taken up the charge of mainstream feminism, making important headway in the campaign for the sexual and reproductive rights of women with disabilities. As a feminist—indeed, as a human being—I fully support my sister's sexual and reproductive rights. But, at the same time, I wonder how the domain of caring, to hearken back to Kittay, informs my sister's claims to equality. She lives, after all, in an interdependent network of people. She makes most of her decisions within the context of this extended family; and should she choose to become a mother, we, too, would bear responsibilities. Does that mean that we also have rights? Or does the language of equality and justice, as crucial as it is, obstruct some of the issues at stake: my sister's ability to care for herself and for another human life, and her family's ability to care for her and to enable her to care for a baby?

The issue raised by my sister's hypothetical life as a mother—her need for assistance from those around her—is shared by all mothers, to varying degrees. Pre- and postnatal care, equal access to quality day-care and nursery schools, excellent public schools, governmental programs to offset the financial burdens of mothering: These would help move us past the rhetoric of supporting families toward structures that would truly nurture all mothers and their families.

Our Bodies, Ourselves, Our Families

I wrote the previous sentence as a new mother, at a time when I felt particularly vulnerable and strong; and thinking, as I always do when I enter a new life stage, about my sister. What does she think of the new baby? What does she think of being an aunt? What questions has my daughter's birth raised for her about children and family, about her life and mine, in the same way it has for me?

I do not know the answers to those questions. But I do know that whatever path she takes, my sister deserves to have her choices affirmed by our society, by the individuals in her own extended family, and the programs we have collectively set in place. I also believe that as feminists, we have a responsibility to listen to, include, and follow the lead of disabled women—those like my sister, and those different from her—when we debate and work on issues related to the family. There is too much we share, and too much at stake for all of us, not to do otherwise.

Works Cited

Asch, Adrienne and Michelle Fine. "Nurturance, Sexuality and Women with Disabilities: The Example of Women and Literature." In The Disability Studies Reader, edited by Lennard J. Davis. New York and London: Routledge, 1997.

Douglas, Susan J., and Meredith W. Michaels. The Mommy Myth: The Idealization of Motherhood and How It Has Undermined Women. New York: Free Press, 2004.

Garland-Thomson, Rosemarie. "Integrating Disability, Transforming Feminist Theory." NWSA Journal 14.3 (2002): 1–32.

Hillyer, Barbara. Feminism and Disability. Norman: University of Oklahoma Press, 1993.

Hubbard, Ruth. "Abortion and Disability: Who Should and Who Should Not Inhabit the World?" In The Disability Studies Reader, edited by Lennard J. Davis. New York and London: Routledge, 1997.

Kittay, Eva Feder. Love's Labor: Essays on Women, Equality, and Dependency. New York and London: Routledge, 1999.

———. "When Caring Is Just and Justice Is Caring: Justice and Mental Retardation." In The Subject of Care: Feminist Perspectives on Dependency, edited by Eva Feder Kittay and Ellen K. Feder. Lanham, MD: Rowman and Littlefield, 2002.

McRuer, Robert. "As Good as It Gets: Queer Theory and Critical Disability." GLQ: A Journal of Gay and Lesbian Studies 9.1–2 (2003): 79–105.

Olivas, Luana. "Helping Them Rest in Peace: Confronting the Hidden Crisis Facing Aging Parents of Disabled Children." The Elder Law Journal 10.2 (2002): 393–424.

Samuels, Ellen. "Critical Divides: Judith Butler's Body Theory and the Question of Disability." NWSA Journal 14.3 (2002): 58–76.

Sandahl, Carrie. "Queering the Crip or Cripping the Queer? Intersections of Queer and Crip Identities in Solo Autobiographical Performance." GLQ: A Journal of Gay and Lesbian Studies 9.1–2 (2003): 25–56.

Seltzer, Marsha M. and Krauss, Marty W. "Adult Sibling Relationships of Persons with Mental Retardation." In The Effects of Mental Retardation, Disability, and Illness on Sibling Relationships: Research Issues and Challenges, edited by Zolinda Stoneman and Phyllis Berman. Baltimore: Paul H. Brookes, 1993.

Wendell, Susan. "Toward a Feminist Theory of Disability." In The Disability Studies Reader, edited by Lennard J. Davis. New York and London: Routledge, 1997.

Wilkerson, Abby. "Disability, Sex Radicalism, and Political Agency." NWSA Journal 14.3 (2002): 33–57.

Endnotes

1. When Congress passed the Americans with Disabilities Act in 1990, 43 million Americans were cited as having a disability. Governmental estimates from the U.S. Census in 2000 found that in the civilian noninstitutionalized population over five years of age, 49.7 million Americans (19.3 percent of the population, or nearly one in five Americans) were disabled. According to the National Institute on Disability and Rehabilitation Research, the number of disabled women accounts for as much as 21 percent of the female population in the United States. More than half of the disabled population is female. They are less likely than their male counterparts to have a job, and they are far more likely to live below the poverty level. [Return to text]

2. Academic critics who have used the concept of "queer" to signify an identity that encompasses disability include Carrie Sandahl, Robert McRuer, Abby Wilkerson, and Ellen Samuels. [Return to text]

3. As the legal battle fought by disabled lesbian Sharon Kowalski and her lover against Kowalski's parents demonstrated (chronicled in Why Can't Sharon Kowalski Come Home? by Karen Thompson and Julie Andrzejewski), our biological families are not always the best arbiters of our fate. Those whom we choose to be with, or who choose to be with us, are sometimes the better allies and the truer members of our family. [Return to text]

4. See also Susan Douglas and Meredith Michaels's The Mommy Myth: The Idealization of Motherhood and How It Has Undermined Women. [Return to text]

5. Susan Wendell. [Return to text]

6. See Eva Kittay's Love's Labor and Barbara Hillyer. [Return to text]

7. In a five-year study tracking 462 families, Krauss and Seltzer found that 64.2 percent of the siblings who took care of their disabled brother or sister were women. [Return to text]

8. Hillyer. [Return to text]

9. Kittay, "When Caring is Just and Justice is Caring: Justice and Mental Retardation." [Return to text]

10. The number of aging parents caring for adult children with disabilities is increasing; over half a million mentally retarded and developmentally disabled Americans live with their elderly parents, a number which is expected to double over the next 25 years. See Olivas. [Return to text]

11. Kittay, Love's Labor. [Return to text]

12. See Adrienne Asch and Michelle Fine. Also see Rosemarie Garland-Thomson's discussion of Playboy model Ellen Stohl and the Barbie doll Share-a-Smile Becky in "Integrating Disability, Transforming Feminist Theory." [Return to text]

13. Asch and Fine. [Return to text]