Chapter 12: The Impact of Disability on Parenting
People with disabilities face significant barriers to creating and maintaining families. These obstacles—created by the child welfare system, the family law system, adoption agencies, assisted reproductive technology providers, and society as a whole—are the result of perceptions concerning the child-rearing abilities of people with disabilities. But are these views informed? Does disability affect one’s ability to parent?
Social science research examining the effect of disability on parenting is scarce. Historically, the absence of data has encouraged the bias against parents with disabilities. Ora Prilleltensky, professor at the University of Miami and a person with a disability, says, “Despite the growing numbers of disabled adults who are having children, parents with disabilities continue to be primarily ignored by research and social policy. The sparse literature that can be found on the topic typically focuses on the relationship between parental disability and children’s well-being. In some cases, a negative impact is hypothesized, studied and ‘verified’; in other cases, the correlation between indices of dysfunction in children and parental disability is explored; and in others yet, the negative impact on children and the need to counsel them is taken as a given.”endnote
Drs. Megan Kirshbaum and Rhoda Olkin of TLG write, “Much of the research on parents with disabilities has been driven by a search for problems in these families. The pathologizing assumptions framing such research presuppose negative effects of the parents’ disabilities on their children. The perennial pairing of parents with disabilities and problems in children perpetuates the belief in deleterious effects of parental disability on children. Research reveals the widespread belief among professionals that disability severely limits parenting ability and often leads to maladjustment in children.”endnote Kirshbaum and Olkin believe that such research may perpetuate negative beliefs in the general population. Correlation and causation are often confused in the research, resulting in an impression that children’s problems are caused by parents’ disabilities. Contextual problems—such as poverty, the parents’ history of abuse, substance use, and a lack of adequate supports—are frequently ignored, so any problems found by researchers end up being attributed to disability. endnote
However, high-quality studies indicate that disability alone is not a predictor of problems or difficulties in children and that predictors of problem parenting are often found to be the same for disabled and nondisabled parents.endnote According to Dave Shade, “The available evidence suggests that although parents with disabilities may have a very different approach to parenting, the presence of a disability (physical or mental) is a poor correlate of long-term maladjustment in children…. Thus, although the data are far from clear, it seems safe to conclude that many parents with disabilities previously thought unable to raise a child at all may actually be able to do so, and that many more parents with disabilities may succeed in raising their children if provided appropriate support services.”endnote Echoing Shade, Paul Preston, director of the National Center for Parents with Disabilities at TLG, says, “The implications of being raised by a disabled parent have been the source of numerous studies, public conjectures and professional scrutiny – all of which touch upon the fundamental rights of disabled people to be parents as well as the fundamental rights of children to be raised in an environment conducive to maximal development. Despite the lack of appropriate resources for most disabled parents and their children as well as persistent negative assumptions about these families, the vast majority of children of disabled parents have been shown to have typical development and functioning and often enhanced life perspectives and skills.”endnote In fact, clinical experience proposes that predictors of problem parenting may be the same as those for nondisabled parents; particularly, a history of physical, sexual, or substance abuse in the parent’s family.endnote
Parents with Psychiatric Disabilities
Parents with psychiatric disabilities experience the most significant discrimination when they attempt to exercise their fundamental right to create and maintain families. Is this discrimination justified? Do psychiatric disabilities affect parenting abilities? According to Preston, “While studies on this population suggest that parental psychiatric disability is itself a significant risk factor for children, many of the additional findings are compromised by over-generalizing about psychiatric disabilities. These and other investigators also suggest that the effects of parental psychopathology and social deprivation on children are difficult to separate and probably synergistic. These studies reiterate the importance of differentiating among types of psychiatric disability, enumerating risk factors as well as assessing family support and resources when investigating the impact of parental disability.”endnote Similarly, in her article “Planned Failure: California’s Denial of Reunification Services to Parents with Mental Disabilities,” Nina Wasow says, “Social science research does not prove that people with mental disabilities cannot use services or reunify with their children; psychologists tend to over-predict dangerousness and lack the tools to assess parental competence accurately; and the social and cultural forces at play in the child welfare system lead experts to focus on certain parental weaknesses.”endnote
In 1998, Diane T. Marsh, professor of psychology at the University of Pittsburgh at Greensburg, released her findings from a national survey she conducted to determine the impact of serious mental illness on parenting.endnote She wrote, “When adult children were asked whether there had been any positive consequences of growing up with parental mental illness, a majority answered affirmatively. They mentioned becoming better and stronger people, having greater compassion and tolerance, acquiring knowledge and skills, developing healthier attitudes and priorities, achieving stronger family bonds, experiencing pride and satisfaction as their parent recovered, and gaining greater appreciation of life. Even when paying a high price for parental mental illness, children may derive much satisfaction from this vital relationship.”endnote
Furthermore, according to Stephanie Gwillim, “Despite the increased risks associated with having a parent with a mental illness, the majority of children raised by parents with mental illness will never develop the psychiatric disorder of their parents. In fact, research has suggested that children are at heightened risk for psychopathology when taken from their parents and put into foster care. Long-term separation from a parent can result in a negative impact on the well-being and functioning of both children and parents. Thus, removing a child from his or her parent—in some situations—can ultimately cause more harm than good.”endnote
Parents with Intellectual or Developmental Disabilities
Parents with intellectual or developmental disabilities face similarly significant and detrimental discrimination, which raises the question, do intellectual and developmental disabilities affect parenting ability? According to Preston, research has historically been focused on the pathological bias against parents with intellectual and developmental disabilities, “pointing out that much of the literature on parents with intellectual disabilities has failed to distinguish between characteristics that facilitate and those that inhibit parenting abilities. Most of these studies have focused only on identifying parents with intellectual disabilities who provide inadequate childcare, rather than identifying predictors of adequate childcare such as coping and skill acquisition—despite the fact that a substantial number of parents with intellectual disabilities have provided adequate care.”endnote
According to professors at the University of Minnesota School of Social Work, “Despite disproportionately greater involvement in the child welfare system, a growing body of research on the outcomes for children of parents with disabilities does not necessarily support the assumption that parents with disabilities are more likely to abuse or neglect their children. Studies have found that children of parents with intellectual and developmental disabilities can have successful outcomes.”endnote
Chris Watkins notes, “Almost all studies have found a sizeable percentage of parents with developmental disabilities to be functioning within or near normal limits. In addition, many studies have found that parents labeled mentally retarded can and do benefit from training and support. Even researchers and commentators who have reached the most negative conclusions about cognitively disabled parents caution that such parents must be evaluated as individuals before reaching conclusions about their parental adequacy, or their ability to benefit from training and support.”endnote
Several researchers have used qualitative methods to investigate life experiences and outcomes of children of parents with intellectual disabilities.endnote In Denmark, J. Faureholm interviewed 20 young adult children of mothers with intellectual disabilities.endnote Despite the difficult circumstances of their growing up, including being bullied and ostracized by their peers, most of the children discovered an underlying personal strength that enabled them to overcome these experiences, and all but one maintained a close and warm relationship with their parents. Similarly, in England, internationally recognized researchers Tim Booth and Wendy Booth also interviewed adult children of parents with “learning difficulties.”endnote They said, “The majority recalled happy, if not necessarily carefree, childhoods. Only three regarded their childhoods as wholly unhappy.” Significantly, most of the interviewees expressed positive feelings of love and affection toward their parents, and all maintained close contact with their parents. Tellingly, those who had been removed by the child welfare system had subsequently reestablished and maintained contact with their birth parents. “In both studies, family bonds endured despite time and circumstance intervening.”endnote Recent research further demonstrates the absence of a clear correlation between low IQ and parental unfitness.endnote In fact, studies have indicated that it is impossible to predict parenting outcomes on the basis of the results of intelligence testing.endnote Thus, Chris Watkins says, “The available research suggests that factors unrelated to disability often have a more significant impact on parental fitness than does disability itself. The research also suggests a tremendous variance in the impact that disability has on parental fitness. Importantly, parenting services have been shown to make a difference for many parents with insufficient parenting skills. While few conclusions can be drawn about the parenting abilities of developmentally disabled parents as a group, it is clear that individual inquiry is required before decisions are made to remove children from parents.”endnote
Parents with Physical or Sensory Disabilities
Parents with physical or sensory disabilities also face significant impediments to creating and maintaining families as a result of misconceptions about their parenting abilities. Does research support the belief that physical and sensory disabilities affect parenting ability? As with psychiatric and intellectual disabilities, research regarding parents with physical and sensory disabilities has historically been based on negative hypotheses and suggested outcomes.
In 1981, researchers F. M. Buck and G. W. Hohmann completed one of the first major studies to contradict the prevailing negative research.endnote They found that children whose fathers had spinal cord injuries displayed normal development in all areas investigated (personal adjustment, sex role identification, body image, health patterns, athletic interests, interpersonal relationships, parent-child relationships, values and attitudes).
In fact, according to Paul Preston, emerging research on parents with disabilities that has adopted a similar nonpathological framework, has revealed “a notable lack of norms and role models for parents and their children; more fluid and more flexible family roles; identification of external social and environmental obstacles as barriers to positive family functioning rather than as a result of the parent’s disability; greater problem-solving skills among family members; and, a desire for greater public awareness and more informed practice. Most of these investigations conclude there is average to better-than-average development and functioning among children of disabled parents and found positive outcomes as well: enhanced coping and problem-solving skills; greater acceptance of difference; and, more positive attitudes towards disability.”endnote
Further, according to Kirshbaum and Olkin, “Anecdotally, and in at least three studies, positive outcomes for older children of parents with disabilities have been cited. These include learning early the value of family and friends, displaying greater flexibility in family roles, finding humor even in dark situations, and putting quotidian problems in perspective. As children of parents with stigmatized conditions, they tend to learn about oppression, empowerment, and civil rights from an insider perspective and at an early age. Furthermore, children of parents with disabilities share in the disability experience and through it a connection to the disability community, a source of possible enrichment. But in focusing on the differences between parents with and without disabilities it is easy to lose sight of the similarities. Ultimately parenting is about loving, guiding, caring, and nurturing, disability status aside.”endnote
The supposition that children of parents with disabilities will be “parentified” (i.e., forced to care for their parents at a young age) is pervasive and persists in research. Rhoda Olkin, in her book What Psychotherapists Should Know About Disability, criticizes the exaggeration of this issue in research, distinguishing parentification from responsibility and interdependence in families. However, she acknowledges that parentification sometimes occurs, delineating factors to be considered in evaluating the appropriateness of children performing tasks for their parents with disabilities. She points out that when tasks seem unsuitable the problem may lie with inadequate social resources to support the family. Psychologist Lisa Jo Cohen addressed parentification in her dissertation.endnote Her exploration of the assumption that school-age children of parents with visual or physical disabilities are their parents’ caretakers revealed the opposite to be true; mothers reported using vigorous caution when assigning tasks to their children. Parents often were reluctant to ask their children to do tasks common to children of parents without disabilities (e.g., taking out the garbage) if the parent felt this was in any way necessitated by the parent’s disability.
TLG conducted similar research, comparing 246 teens with parents with diverse disabilities to teens with parents without disabilities.endnote Their research found no differences in the number of household chores reported by teens or parents across groups with or without disabilities. Moreover, few differences were found between parents with and without disabilities. For example, they agreed on how many friends their teens had, bedtimes, how active their teens were after school, and church or temple attendance. They ate dinner with their children most nights of the week, monitored their teens’ music and homework, were equally likely to have experienced a significant stressor in the past year, and described their families similarly. Finally, parents with disabilities reported that their teens were more comfortable around people with disabilities than did parents without disabilities.
Paul Preston and Jean Jacobs of TLG are concluding the first phase of an eight-year national study of young adult children of parents with disabilities.endnote The study targets young adults ages 17–21 who were raised by at least one parent with a significant disability. During the first three years of the study (2009–2011), more than 1,000 high school seniors and college students participated. Study participants are from all 50 states, and parental disabilities include physical, intellectual, visual, hearing, cognitive, and psychiatric disabilities among people of diverse ethnicities. Preliminary findings from project data document numerous positive outcomes for these young adults. The majority of participants rated their overall experience of having a parent with a disability as positive: 58 percent positive to very positive; 34 percent mixed; and 7 percent negative to very negative. The majority of participants cited specific advantages to having a parent with a disability compared with their friends and peers who did not have a parent with a disability, including learning better life skills (74 percent), becoming more compassionate (71 percent), respecting differences (71 percent), becoming more independent (70 percent), having a wider range of experiences (63 percent), becoming more aware of what is fair and just (59 percent), and becoming more resourceful (51 percent). The highest rated challenge of having a parent with a disability was financial; 70 percent reported limited finances at home. In contrast, only 39 percent of these young adults thought they had too many responsibilities at home. Using Rosenberg’s validated measure of self-esteem, the mean score of participants was 34.03 (SD = 5.17), reflecting a high esteem level in the sample as a whole. This compares with a mean of 30.20–34.40 in studies of healthy young adults whose parent did not have a disability.
Ora Prilleltensky also examined the issue of parentification; specifically, whether it actually exists. Prilleltensky’s study did not find any indication of this phenomenon among the children and families of participants.endnote She noted that, if anything, people with disabilities in her study indicated a desire to shield their children from the burden of care.endnote As far as enhancing children’s well-being, in participants’ accounts of the child-rearing practices they use and their overall relationship with their children, the emphasis was on consistent parenting practices. A number of mothers mentioned reliance on verbal explanations and instructions. Other narrative accounts in the literature suggest that such children tend to respond to verbal instructions from an early age.endnote According to Prilleltensky, an important consideration is the relationship between child-rearing practices and the level of formal and informal supports. She concludes:
“The experience of study participants suggests that the welfare of children need not be compromised due to parental disability. Study participants gave numerous examples from their daily lives that describe their attempts to ensure their children’s welfare. They also described loving relationships and positive communication with the children, as well as their pride in children who are well-adjusted, caring, and appreciative of human diversity. Alongside these accounts, and sometimes intertwined with them, are indications of how stressors such as poverty and lack of support can compound difficulties related to the disability. It is safe to say that in the presence of internal and external resources and supports, parental disability in and of itself need not present a significant risk factor. On the other hand, the high rate of poverty, single parenthood and attitudinal barriers that characterize the lives of many women with disabilities may indeed, if unmitigated, present a risk to family well-being.”endnote
Current research, limited though it is, demonstrates that disability does not necessarily have a negative effect on parenting. Certainly, much more research in this area is needed; specifically, research that does not pathologize parental disability in a negative way. Moreover, research should focus on the effect of supports for parents with disabilities.