by Corbett Joan O’Toole, B.S.E. and Tanis Doe, Ph.D.
First published in Sexuality and Disability, Vol. 20, No. 1, Spring 2002 ( 2002)
Corbett O’Toole’s invitation to parenthood:
On October 6, 1993, I was at a meeting. During the break my friend, Atsuko Kuwana, casually asked me, “Corbett, would you like a baby?” All the people near us hushed immediately. No one could believe the question. “Yes,” I enthusiastically replied, “tell me more.” And so she did. A baby girl had been born the previous March in Japan. She had cerebral palsy and the adoption agency where Atsuko and her husband, Michael Winter, had found their son had contacted them for help in finding a home for the girl, Mitsuko. That Atsuko asked me such an important question in such a casual way was part of our relationship. Over many years we had created a strong and open bond—especially about sexual and family subjects. We’d discussed the intricacies of how lesbians were doing home artificial insemination while we floated in the neighborhood pool. We’d talked about the sexual positions of female versus male partners at the local burger joint. In short, we provided each other with an important place to discuss sexuality, relationships and sometimes even anatomy. But Atsuko had never before approached me with a child to offer. She and Michael had known me for years and knew that I had tried but not succeeded in becoming a parent. At the time of this question, I was 42 years old and resigned to being childless. Atsuko’s question changed my life.
UNASKED QUESTIONS—QUESTIONS ASKED (TOO) OFTEN
In general, with rare exceptions, people with disabilities do not get asked if they want to have children. They don’t get asked if they want to be sexual. The silence around sexuality includes their parents, their counselors, their teachers and most health professionals. Yet these same people sometimes counsel in favor of involuntary sterilization. If we do have a child we get asked if is it ours, “Who is the parent?” “Where is the parent?” or “Why are you holding it?” In response to this last question Trish Day, a mom with cerebral palsy created a t-shirt with the silhouette of a mom in a wheelchair holding a child that reads “Because I’m the Mommy.”
When I (Tanis) arrived back from Jamaica with my daughter, I had people questioning my sanity as well as my maternity. They told me I would regret doing it as a single mother and doing it while I was so young. Raising my daughter, Ann-Marie, has convinced me that, when in doubt, answer your own question. Do you want to have a child? If you do—then you do. Not even the current level of knowledge about causation of disability prevents people from assuming that all forms of disability will be transmitted genetically. And even the small percentage of genetically transmitted disabilities are assumed to be so horrible that no one could possibly consider having children if there is a chance to have a child with this disability.
Or as Mitch Letch, a disability consultant from Australia says bluntly, “There is a fear we’ll breed monsters” (1). When he asked the rehabilitation nurse about his options for post-injury fatherhood, she responded: “You filthy little guttersnipe. If you keep your mind above your navel you might get somewhere in life” (Mascall, 2001).
The assumption has been that all families (with disabled children) “are cursed with a terrible misfortune from which they never recover. Under the shadow of the broad condemnation, specific negative concepts have included the idea that families are permanently fixed in early stages of familiar development, marriages are unavoidably damaged and parents are likely to suffer psychopathologically” (2, p. 5). There is precious little that supports disabled people’s sexuality much less parenting (3,4,5). It doesn’t matter where you live, the stereotypes are alive and well. Nora Groce (1997) found that the lack of a societal expectation of parenting had wide-ranging international implications:
One reason why many disabled girls and women are rarely educated is because their families or societies do not see a need for their education. There is often little expectation that a girl with a disability will live independently or will marry and establish a household of her own. As one often does not become a full adult in the eyes of the community until marriage, lack of marriage keeps many disabled females forever in the status of dependent child. (This does not mean that many girls and women with disability do not establish relationships, become sexually active or bear children, only that their activity is often not acknowledged by the societies in which they live.) (6, p. 3)
None of the folks that we interviewed received any positive coaching about parenting—much less adopting a disabled child. In fact, everyone had experienced the typical response: “Are you crazy? Do you have any idea of what you are trying to do? It’s hard enough for normal/nondisabled people to do it. . . .” When they got stubborn and insisted that they were pursuing it, then the messages became more explicit, “Disabled children are a lot of work. No one expects you to take on this problem. We won’t be there to help you when it all falls apart.” Or as a Japanese man said to Corbett during her first week with Meecha, “Why would you want to adopt a tragedy?”
LaDonna Fowler, an indigenous woman living in the US, wrote about it this way: “I felt a lack of acceptance and had more questions from those individuals outside my family and my community. People could not understand why I would want to “add to my burden” or “make it harder on myself”. I was too busy as a new mom to really listen to those type of comments” (7, p. 7).
And it’s not only the nondisabled world that creates problems for a prospective parent. Much of the disability world is not supportive. When was the last time you saw a disability event with childcare? Or a referral list for accessible childcare? Or a disabled community and parents with disabled children coalition? Because mothers with disabilities who have children with disabilities have several roles, they often have to seek out new supports. In her interviews with disabled lesbians Sara Axtell (1999) found that having multiple identities “sometimes led them to separate, even from others in their communities” (8, p. 59).
MAKING OUR OWN WAY
In the family support movement of the 1990s a new, more positive ideology of family resilience emerged. It is assumed that family members with disabilities are positive contributors to their families and their communities (2). There is an emphasis on “doing what it takes” and on flexibility. The idea is that not every solution works for every family and that each family has strengths and resources that can be tapped to accommodate new challenges.
Corbett: “Less than four months later, I held my daughter in my arms. From our first night together, when she, all of 10 months old and 14 pounds, took possession of nearly two-thirds of our single bed, our life together has been a constant adventure. When I found this poem of Laura Hershey’s, I felt
like she was describing my experience of becoming a mother:
rounded house I have built my life
odd angles and ghosts
painted walls strong supports
room histories favorite books
this structure has served
through years’ discovery
has weathered squalls
held up by sound structure
protected by kindly neighbors
Now into this life moves another
carrying her own
blueprints wielding tools cans of paint
stirs my surprised spirit she cuts
through my walls
exposing views on pain and beauty
Her gift to me is a window
on blossoming joy gardens we together
precious shoots vulnerable
and winds painting new histories
we make up as we
go along” (9, p. 67)
TOWARDS HAPPINESS—THE PRACTICE OF TRANSGRESSIVE RESILIENCE
For this paper we choose to share the experiences of a specific group of parents—moms, and a few dads, mostly single, though some in couples, some straight, some queer, with a variety of disabilities (1). What they have in common is that they have lived with their disabilities for a long time, they see themselves as part of a social change movement, and they openly sought to adopt a child with a disability. They share a belief that the experience of living with a disability in a nondisabled world might actually be an asset for being a parent.
John Hockenberry’s (1995) analysis of the primal disability perspective is enlightening: “Americans expect things to work. It is one of the consequences of being a superpower. Disabled people expect things not to work whether they are American or not” (10, p. 263). Melinda Morrisset (1999) suggests: “Developing a tolerance for ambiguity and “not knowing” is fundamental to learning, to problem solving, to any form of meaningful creation whether you are disabled or not. I know I’m more inclined to experiment and take risks in all aspects of my life since I became disabled; it’s a benefit of realizing that control is an illusion. Part of what disability has done for me (when it hasn’t been cast as defect) is to resurrect improvisational skills I used in theater and in play when I was younger” (11, p. 103).
Being able to live with what comes, adapt to what happens and to accommodate a wide range of possibilities is part of being disabled but is essential to being a parent. Being a parent of disabled children then reinforces how unexpected life can be and how much the “living in the moment” means to us all. When disabled people choose to adopt disabled children, they are offering what they perceive to be the best gift a child can have: a parent who will love them in their wholeness. Not being required to, as one woman said, “leave a part of ourselves at the door” (Axtell, 1999). A parent (or 2 or more) who will acknowledge all parts of themselves, help them navigate a world that is always insensitive and frequently hostile, who will give them strategies for survival and strategies for having a joyful life.
Or as Vicki D’aoust and Corbett (2000) wrote: “their family lives may in fact be acts of resistance to what are constraining social expectations.”
Is it easy being a disabled parent with a disabled child? Not always. There is too much to do and not enough time to do it in. Plus the responsibilities are multiplied—parenting plus disability plus advocacy for disabled children (13,14,15). Tanis Doe called it disability squared in her presentation of disability dialectics (16). Being a disabled parent with a disabled child can be a very isolating experience. I (Corbett) jokingly say that without effort I can easily go to at least four support groups: lesbian moms, disabled parents, parents of disabled children, interracial families. What is isolating is that there are few people who are in even two of these four groups. But we make our own support systems. We come together at conferences, in email and through telephones to give each other support. We are, surprisingly, everywhere. Though not exceptionally visible, we are very good at mutual support.
We know where to get support because we created it. We are our own support system. As two mothers who both have adopted disabled girls internationally and inter-racially we have a lot in common. The disability community has a lot to offer us as parents because it is full of creative people who spend their lives proving others wrong. These are the resources we bring to parenting our daughters.
And our children learn this resilience from us and integrate it into their own situations. In our interviews, we asked parents about what they think that they give to their children that may be different than if the child had a nondisabled parent. Many parents talked about having specific conversations with their children about how they were treated in the world. In discussing how to handle the inappropriate stares and questions related to being a parent-child disabled pair, Ryo, age 9, decided that his new standard reply would be, “I’ll answer your question if you pay me a dollar.” Corbett says: This was a conversation that I was not allowed to have with my parents. When I commented on the staring, they told me that I was “overly sensitive”. Ryo’s lived experience is that he not only has a parent who believes him but also one who can help him solve it in a way that makes him feel empowered.
Disabled adults who chose to adopt disabled children have some shared characteristics: they challenge numerous stereotypes about themselves and their children; they are sexual beings; they embrace their children’s abilities and disabilities; they fight for their children to be treated with dignity and respect; and they expect their disabled child to have a full and sexual life. The title of this section comes from Rosangela Berman Bieler’s (1997) frequently reproduced piece, “The Right to Maternity” (17). In it she says:
“A woman with a severe disability who decides to have or adopt a baby, is comparable to a working woman who theoretically does not have enough quantitative time to dedicate to her child. However maternity has to be more than physical or time availability only. It is a relationship based on affection and responsibility, in which qualitative availability is what really makes a difference. After evaluating this experience, I really believe that maternity does not only serve the purpose of generating or adopting a child but the one of raising someone towards happiness.”
What a wonderful perspective, a wonderful challenge to the presence of disability in a family: parents raising a child towards happiness.
BEING SEXUAL OURSELVES
Before we can believe that we could be parents, we need to believe that we are sexual. When you’re walking around the world with a kid attached to you, most people are going to think that you had sex. Depending on your race and your child’s race, people may make all kinds of assumptions about who you had sex with. Some parents speak about this:
“As a lesbian I have found that some parts of the Deaf community are tolerant, accepting and even supportive of various sexual orientations, while part of the leadership and the grassroots are as homophobic as mainstream society. I was nervous about how [my sexuality] might impact her membership in the Deaf community. I was scared to date Deaf women, and even interpreters, because the community is so small that just a single night spent with someone would be generally known by the next day.” (5,117)
[I don’t want] “to sacrifice any hope or dream of a love life just because I’m a parent. I’ve had one relationship (long distance) during parenthood and I called it off because I didn’t have the energy or level of interest required to feed the relationship. I don’t think I was in love anyway. I do feel way less need to be in a relationship than I did before I was a parent. I’m open to the possibility, but not pinning.” (18)
One parent said because they had a sex life, they believed that it was a powerful role model to their child about disabled people being sexual.
“I think that’s true—the example we set. [My child] witnessed the relationship I had and was friends with the guy. My conflicted feelings on morality of sex are more conflicted now as a parent, because of wanting to set an example of what I really believe, and not being a hypocrite i.e., marriage (or formalized partnership if GBL) is best, long term serious committed relationships are ok, and short term non-committal relationships are not good.” (18)
CREATIVE CAREGIVING AND INNOVATIVE INDEPENDENCE
We are both adoptive disabled parents of children with disabilities. In compiling the research for this article we were struck by how many parents were disabled adults who knowingly adopted children who are disabled. We began to think about who we were, why we did it, how it was going, and what we believed we were giving to our children. This article is a gift from some of the moms (and a few dads) to our children. Sara Axtell (1999) found that disabled lesbians felt that being disabled strengthened their relationships in a number of ways: increased sense of independence, appreciating the time they have together, gave them shared challenges, and deepened their commitment to each other (8). This resonates with disabled parents. Many of us really appreciate the incredible gift that our children are to us, know that this interfamilial transmission of disability culture is a rare gift, know that we are lucky to be parents at all, and are fiercely protective of our families.
Disabled adults who adopt disabled children tend to know what they are expecting. They usually have to fight so many obstacles that they either become fiercely focused or they get discouraged and quit trying. One heterosexual couple with a disabled man and a nondisabled woman really, really wanted to adopt a child with a physical disability. After many attempts they were on the list for a child from China. But the Chinese adoption agency refused to place a physically disabled child with them. As they said, “Wheelchair man, wheelchair child, too much burden.” I guess that they were assuming that the disabled father would be unable to provide care and that both the father and child would be a care-giving burden on the nondisabled mother. In the end, they placed a child with a different disability with that family.
Far too often children with disabilities are categorized as either tragedies or at best, an unexpected difference (13). When adults with disabilities adopt children with disabilities they bring with them a new perspective, a new paradigm. Children with disabilities are attractive adoptees to disabled adults precisely because they have disabilities. Instead of being deficit or different children, their disabling condition buys them automatic preference. Disabled adults are choosing disabled children because the presence of a disability in a child is seen as a positive feature.
This perspective is manifested in different ways. It can occur when a disabled adult chooses to select only from a pool of disabled children. It can occur when a disabled adult with a genetically-inheritable disability specifically chooses to mate with a person with the same genetic characteristics. Or in the immediate designation of one’s children as either having a disability characteristic or not (this often occurs in both the Deaf and the short stature communities). Or it can be seen when a disabled woman chooses to abort a fetus because it does not have the desired disabled characteristics. (This really happens.) An interesting conundrum facing adults with disabilities who adopt: people assume that you could not birth a child. Whether they base this belief on the physical limitations of your body or on your obvious (to them) inferior gene pool, disabled parents, whether their children come to them through birth or adoption, are forced to deal with this. Sometimes the stereotypes are challenged just by presenting a multiplicity of them at the same time.
Corbett: Picture this: a white woman with blue eyes, rolling her wheelchair through the grocery aisles, with an Asian disabled baby on her lap. People couldn’t decide which stereotype was confusing them more—a white/Asian mating; a disabled parent; a disabled parent with a disabled child; a disabled woman babysitter. “Are you her mother?” was by far the most common question that I received then—and still do. Mothers with disabilities “have learned like most of North American society that their children must be nurtured and protected whenever possible from that awful experience of association with disability” (19, p. 290). Mothers of children who have disabilities cannot distance themselves or their children from disability. Parents with disabilities of children with disabilities have to make their own happiness through creative caregiving and innovative interdependence.
An important part of sexual self-esteem is feeling at home in one’s body. Owning one’s body. Keeping that body safe. Knowing how to use one’s body to express joy. This is information that none of the disabled parents had as children of nondisabled parents. Information that we, as disabled parents, are transmitting daily to our children.
Corbett: During my teen years, when my father was exasperated with us, he would always tell my siblings, “I can’t wait until you have children of your own. You will see what it’s like.” But when he was frustrated with me, he never said that. And the few times that he began, he stopped himself. The message was clear to me. I was not expected to be a parent. As Barbara Kolucki (2001) and others (13,20,21) point out the disabled body is discredited as a source of pleasure or value.
“What is not likely is for children in developing parts of the world, those from families who are poor or without “power,” or disabled children anywhere—to be told and encouraged to be who they are, to be portrayed and valued just as they are, and for each one’s uniqueness and diversity to be celebrated. So—they often grow up feeling inadequate and wanting to be like someone else who seems to have more value. Their diversity, their difference is not celebrated.” (13)
This is the adolescent experience of most of the parents we talked with. No one had sat down with them explaining the facts of life—disability version. But they were willingly taking on that challenge when they signed up for parenting a disabled child. As R (2001) says:
“Sometimes as a mother, I find myself consciously telling my daughter that she will have a lover, be a mother, raise a family. I tell her this not because I believe that these are her only options. But I tell her this because I know that nearly all of the rest of the world doesn’t believe that she can do it. And she is peppered with this disbelief many ways every day.” (22)
PRIVATE PARTS AND THE WHOLE
Some researchers are concerned about the need for disabled girls to have people in their lives who see their wholeness (23,24). As Harilyn Rousso (1997) writes
“Most young women and girls need to be encouraged not to disassociate from their disability, but instead to recognize and embrace it as an acceptable part of themselves that may be a source of barriers and challenges to overcome, but can also be a source of strength and pride. Society and the media bombard us with forceful but narrow messages on what womanhood is. These emphasize unreachable standards of physical perfection and beauty. All women, disabled or not, are harmed by these limiting messages, but those of us with disabilities are particularly likely to be devalued and marginalized. We need strong counter-balances to these images and other sources of information and validation to accept ourselves as we are.” (25, p. 11–12)
Parents of nondisabled children can usually rely on an extensive, if sometimes inaccurate, array of sexual information being passed onto their child. But parents of disabled children can rarely expect the same. Although the needs for sexual expression are evident in both nondisabled and disabled children, the availability of information and the complications of obtaining it are more challenging for parents of disabled children. There is an almost total lack of sexpositive sexual information written specifically for disabled children or parents of disabled children. Instead parents are bombarded with statistics about the high rates of sexual abuse of disabled children and the need to prevent pregnancies.
But what our children want is to know ways to express their sexuality, to get accurate information, and to feel loved and accepted as they are. Repeatedly, disabled parents told us that they felt required to be proactive in addressing and solving their child’s sexual concerns. In short, we and our children are forced to face sexual concerns that most nondisabled parents are able to avoid if they wish, and most nondisabled children choose to solve within their peer groups.
One mother was concerned that her daughter was trying but not succeeding in reaching her vulva for self-stimulation. She wanted to facilitate her daughter’s sexual independence without interfering with her daughter’s sexual expression. But she faced the difficult challenge of figuring out solutions for problems that are totally undocumented. She was also advised by another parent not to bring this problem to any professional lest her interest be misinterpreted as abuse (22). Another parent reports on planning for her son’s dating future. She believes that her expectations of her son’s romantic future gives him a sex-positive message about himself as a desirable partner. She is also strategizing his potential dating circles:
“Well, even if he’s not dating his peers in high school, he’ll be active in the dwarf community, so will likely have an active social life there. I’ll be cognizant of how important that is as an outlet or resource and make sure he’s involved as much as he wants to be.” (26).
“So I’ll look at the possibilities, probably before a nondisabled parent would, but then be vigilant in his training so he doesn’t have sex before he can handle it and all that goes with it, but if he does, then that he handles it appropriately. What a tightrope. I guess it’s just that I know he’ll be a sexual being, with desires, starting in several years and that he needs the same guidance as any nondisabled kid his age.” (18)
Sometimes a parent has to decide between a present benefit or a future benefit. In this story, the parent chooses for his daughter’s sexual future.
“My daughter’s legs are really tight. The orthopedist and the physical therapist wanted to try botox on her. It worked great and allowed her to open her legs. They wanted to use it again. But I’d read about botox and learned that the effectiveness decreases over time. So I decided to save that treatment for my daughter to choose when she wanted to be sexual. I didn’t want to take that option away from her.” (27)
Not talking about sexuality may cause other problems. Mike Letch (Mascall, 2001) says “Disabled people have always been considered completely asexual or completely deviant with nothing in the middle. The fact is that we do have sexual feelings. To ignore that is irresponsible and may increase the risk of exploitation” (1). With rates of sexual abuse of disabled children and adults abysmally high, lack of sexuality information has not been an effective prophylactic (28,29,30).
RADICAL REPRESENTATIONS: WE ARE LIVING IT
As mothers of girls with disabilities we are living our own article. We have made the decisions we wrote about and have faced the difficulties described. We have survived. We are thriving and our children will benefit because we made the effort. Corbett’s daughter, Meecha, has so thoroughly integrated the disability experience as the norm, that she focuses her worries on those “poor, disconnected nondisabled people.” When Meecha was 6 years old, we drove to pick up Alicia and Malena. While we were waiting for them Meecha asked if Malena, like Alicia, used a wheelchair. “No,” I replied. Meecha got a very thoughtful expression on her young face. “I think that they need an organization.” She seriously informed me. “An organization for walking people. Maybe they need a website too. We could call it www.walkingpeople.org.”
Disabled parents are teaching their disabled children to love and care for their bodies. They are passing on positive sexual values and providing a supportive barrier to negative stereotypes. They are doing what the 614 women from 80 countries asked for in their Consensus Statement (1998): “We want a disability sexual culture focused on our entitlement to pleasure and love, understanding the advantages of possessing bodies and functions different when compared to women’s majority culture” (21).
Eli Clare (2001), a profound disabled writer, describes the experience of having our bodies validated, of finally finding community: “Gawking, gaping, staring. I can’t say when it first happened. I come from peoples who hate being looked at, who have habitually and chronically hated mirrors and cameras, who hate looking at our own bodies. I come from peoples who are learning to relish our bodies, who are stretching into a comfortable pride, who are sunbathing nude on public beaches and spending long, joyful moments in front of mirrors. We are making our bodies home, and for that I thank you.” (31)
For this paper, we interviewed or read accounts by numerous disabled adults, mostly mothers, who’d adopted children with disabilities. These adults are all actively involved, or known to, the disability communities within their countries. In order to allow them to share personal experiences, particularly about their own sexuality and their child’s, we promised them anonymity. To ensure this, we have omitted identifying details, changed genders of parents or children, and otherwise left out any identifying characteristics that were not relevant to the quotation. There were a wide variety of disabilities within both the parents and children including: vision, health (chronic fatigue, multiple chemical sensitivities, asthma, heart conditions), physical (spinal cord injury, polio, spina bifida, cerebral palsy, short stature), hearing, learning, and emotional. The majority of the accounts are by people from the dominant culture of their countries, with about twenty percent by nondominant culture people.
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