Heather Hewett, "My Sister's Family" (page 2 of 5)

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]