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Parents with Disabilities and their Children without Disabilities

Introduction

Good afternoon. Thank you for inviting me to the very first conference of the Japanese Society for Disability Studies. I am very honored to be your guest at this conference and a guest in your country. I would also like to thank my hosts who helped to make the arrangements for me to be here today.

This afternoon, I would like to talk to you about parents with disabilities and their children without disabilities. What do we know about disabled parents and their children? What kinds of research studies have been done? What kinds of issues need to be studied?

Before I begin, however, Ifm going to give a few words of explanation.

My own interest in disabled parents and their children began many years ago -- in fact, when I was born. I grew up as the only child of two deaf parents. My family experiences have contributed to my work with deaf and disabled people as a teacher, a counselor, and a researcher. I now direct the National Center for Parents with Disabilities in the United States. Our Center is responsible for providing information, resources, and training concerning the millions of disabled parents in the United States.

I would also like to remind everyone that the studies and data about disabled parents and their children that I will talk about this afternoon are primarily based in the United States. This means that perhaps some of my definitions and explanations may not fit with your experiences or your research here in Japan. And, I think this is a good thing. Because as an anthropologist, I think it is very important to remember that all disabled parents and their children are not alike. Families with disabled parents and children are also part of larger communities and cultures. And different cultures will affect the experience of being a disabled parent or the child of disabled parents differently. I want to encourage more studies of disabled parents and their children here in Japan so that we can understand things from a Japanese perspective. I would like to see many more studies from other people throughout the world to help us understand the experience of people with disabilities and their families in other cultures.

Who are Disabled Parents?

First, Ifd like to talk a little about gdisabled parents.h What do I mean by this term? Who are disabled parents? How many are there?

In the United States, 15% of all parents with children under age 18 have a disability. This means that in the United States there are more than 9 million parents with disabilities. This includes parents with permanent, life long disabilities, as well as new or temporary disabilities. Disabled parents include parents with physical disabilities (for example, spinal cord injury, cerebral palsy, amputation, short stature, chronic pain or chronic fatigue), parents with medical disabilities (for example, multiple sclerosis, cancer, HIV/AIDS), parents with cognitive disabilities (for example, head injury, mental retardation), parents with learning disabilities (for example, Attention Deficit Disorder), parents with visual disabilities (for example, blindness or low vision), parents with emotional or behavioral disabilities (for example, schizophrenia, depression), and parents who are deaf or hearing impaired. Many parents have more than one disability; for example, a parent who is blind may also have diabetes. Also, some disabilities include multiple senses, for example, multiple sclerosis, which can involve physical, medical, visual, cognitive and emotional disabilities.

Also, the estimated 9 million parents with disabilities in the U.S. only includes parents who have children under age 18 who live at home. These 9 million disabled parents do not include other disabled parents who have children who are now grown up. For example, my own parents would not be counted in these figures.

Unfortunately, we do not have very good demographic data on the types of disabilities of these parents. One study, based on an analysis of the U.S. Census, distinguishes the 9 million disabled parents as follows: 40% are parents with sensory disabilities (blind or deaf); 26% are parents with physical disabilities; 24% are parents with psychiatric disabilities; and, 16% are parents with cognitive disabilities (mental retardation or learning disabilities). But, these categories are very broad, and they do not tell us more detailed demographic information. For example, how many parents with Spinal Cord Injury are there? How many parents are totally deaf versus hard-of-hearing? How many blind parents have young children versus blind parents with teenagers? How many parents became disabled before the birth of their child, versus how many became disabled after the birth of their child? Unfortunately, we do not know reliable answers to these questions.

The exact numbers and demographic data on parents with disabilities are very difficult to determine. Why? Because parents with disabilities are almost never identified in data collected by organizations or government systems that serve parents, families or people with disabilities. For example, an organization may count how many deaf people are employed, but they do not count how many of these deaf people are parents. The lack of data on disabled parents and their children creates a vicious cycle in which it is difficult to substantiate the need for services or policy changes because these families remain statistically invisible.

It is also important to remember that many people do not want to be identified as "disabled." For example, in the U.S. deaf parents do not want to be called "disabled parents." Similarly, parents with short stature, or parents with Multiple Sclerosis (MS), or parents with diabetes -- many of these parents do not call themselves "disabled."

When I say that there are more than 9 million parents with disabilities in the United States, and many many millions more throughout the world, one of the first question people ask me is, Why? Why are there so many disabled parents? Is this a new phenomenon?

No. There have always been disabled parents. But, now the number of disabled parents can be expected to increase -- as a result of better medical care, as more people with disabilities exercise a broader range of lifestyle options, and as a result of social integration and civil rights.

Who are Children of Disabled Parents?

Now, Ifd like to turn our discussion to gchildren of disabled parents.h Who am I talking about? Children of disabled parents can be children of any age. Infants, young children, teenagers, or even adults. I myself am the child of disabled parents. Maybe I do not look like a child to you ? especially because my hair and beard are now white ? but to my mother and father, I will always be their child.

The emphasis in our research studies has been on children who grow up with at least one parent with a disability. This does not include adults whose parents may become disabled as they grow older, for example, an older parent who develops a hearing loss or arthritis.

So, gchildren of disabled parentsh is a broad term that applies to children from many different types of families. For example, children of deaf parents, children of blind parents, children of parents in wheelchairs, children of parents with MS.

It is important to remember that most of these children do not have disabilities. Only their parents. For example, only 10% of children born to deaf parents will be deaf. This means that 90% of children of deaf parents can hear. It is similar to other children of disabled parents. Most children of disabled parents will not have a disability, although the likelihood of a disabled parent having a disabled child is higher than for non-disabled parents. Based upon the current national data in the U.S., approximately 14% of disabled parents have a disabled child, compared with 3% of non-disabled parents.

Our current data estimates that disabled parents have, on average, at least 2 children. Projecting from our national census data, this means that there are at least 15.5 million children without disabilities who have disabled parents. These 15.5 million only includes non-disabled children from birth to age 18. There are millions more throughout the world as well as millions more non-disabled children with disabled parents over the age of 18.

What do we know about disabled parents and their children?

Unfortunately parents with disabilities and their children face many obstacles. Public policies and appropriate resources lag far behind the social changes that have led to the increase in the numbers of parents with disabilities. I have been involved in several national research projects on disabled parents and their children. One of our major studies was a five-year national survey of parents with disabilities. Completed in 1998, this was the largest study on parents with disabilities ever done, and yields data from a national sample of 1,200 parents with disabilities.

The major findings from our national survey can be summarized in eight life areas related to parenting with a disability:

Pregnancy and Birthing. Women with disabilities reported considerable difficulty locating physicians who were knowledgeable about their disability to help them manage their pregnancy. 44% of disabled parents reported that pregnancy and birthing for themselves or their partner was an issue which was affected by their disability. 36% of disabled parents reported that the physician or other provider lacked familiarity and expertise with disability, and this caused problems during prenatal and birthing services. 31% reported that the providersf attitudinal problems caused barriers, 24% reported medical complications related to their disability during pregnancy or birth, and 18% reported problems with physical accessibility. The lack of this specialized medical expertise is very stressful for expectant women with disabilities.

Adoption. 11% of disabled parents had children who were adopted, and over half of these parents adopted after they became disabled. 8% of disabled parents reported they experienced attitudinal barriers which interfered with or prevented adoption.

Custody. 15% of disabled parents reported attempts to have their children taken away from them. As I will talk about a little later, many people assume that disabled people cannot be good parents, that they cannot properly protect and take care of their children. This is a serious problem that mirrors many of false assumptions, negative attitudes and stereotypes against disabled people. When I met with disabled parents in a focus group, many of these parents told me they would never ask anyone for help because they were afraid it could lead to having their children removed.

Routine parenting activities. Disabled parents reported needing the most assistance in recreation with their children (43%), traveling outside the home with their children (40%), chasing or retrieving children (39%), and lifting or carrying children (33%). The types of assistance needed by parents varied according to the type of disability.

Access to child care. Childcare ? that is, a program that parents can take their young child while they are at work or school ? was very difficult for disabled parents to use. Disabled parents identified the cost as the most frequent barrier to child care (30%), followed by lack of transportation (20%), accessibility (15%), lack of appropriate services (11%), and lack of information where to find appropriate and accessible child care (6%). The lack of childcare may mean significant financial hardship for the family, since the disabled parent cannot work because they cannot leave their children alone.

Need for adaptive parenting equipment. Many disabled parents can benefit from using specialized adaptive equipment to help them take care of their children -- for example, adaptive cribs for parents with physical disabilities, or Brailled measuring devices for blind parents, or Baby cry alarms for deaf parents. The majority of disabled parents said such equipment could have improved their lives by making them more independent, feel less tired, made things take less time, made them feel more secure about child's safety, or that it would have caused them less pain. As I will talk about a little later, one of the greatest benefits of this adaptive equipment is that it can substantially improve the relationship between the disabled parent and their children. Yet, most disabled parents said they did not have this adaptive equipment. Most of this equipment is still unavailable on the market and is seldom reimbursed by public or private health or disability funding systems. When disabled parents answered what prevented them from obtaining parenting equipment, 50% of disabled parents said they had no way to pay for it, and 48% didn't know how to find it. 32% said the equipment was not widely available or /not yet designed (32%), and 19% said there was no one to help them make this equipment.

Personal assistance services. In the U.S., many people with significant disabilities use personal attendants to help them with daily tasks such as bathing or grooming or travelling. Some disabled parents also use personal attendants to help them with parenting tasks, for example, helping the parent to feed or clothe or bathe their baby. 57% of disabled parents reported using personal assistance services for help with parenting. However, right now, some policies discourage or prohibit these services to include parenting activities. For example, a disabled mother can get help to bathe herself, but she may not be able to use this service to help her bathe her baby. Or, a disabled father must choose if he wants help to feed himself, or help to feed his baby. Many disabled parents reported that they often chose to sacrifice their well being in favor of helping their child. Disabled parents also reported additional problems with using personal assistance. Disabled parents said that personal assistance often was not available when needed (54%), personal attendants were unreliable (46%), the personal attendant interfered with the parentfs role (38%), and the personal assistant did not know how to care for children (35%).

Inadequate housing. Disabled parents also reported difficulties with housing. 43% reported facing at least one barrier with regard to housing for parents with disabilities. 33% said that housing was too expensive, 28% said that the space was too small or inadequate space, and 25% said the housing was inaccessible.

Insufficient transportation. Transportation was an issue that affected more aspects of parenting with a disability than any other issue ? for example, no transportation available for a parent in a wheelchair to take their child to school. Or, paratransit systems which will only provide service to the disabled parent, but the parent cannot bring their child with them. 79% of disabled parents reported transportation as a problem for them and their family.

Attitudinal barriers. 42% of disabled parents reported that they frequently faced attitudinal barriers. This including 32% of disabled parents who said they were discriminated against, 14% who said they were pressured to have a tubal ligation, and 13% who said they were pressured to have an abortion.

Although disabled parents clearly confront many difficulties and barriers to raising their children, disabled parents also describe many positive aspects of having children. Disabled parents in our national survey reported many rewards and positive aspects of having children. Many of their responses are similar to what a non-disabled parent might say. That is, disabled parents talked about the joy of being a parent, their childrenfs love, and that life is more precious because of their children. Disabled parents also said they felt their children learned to be more compassionate, tolerant of differences and were more resourceful. As one disabled parent wrote on the survey:

gHaving these children in my life is a great blessing. Watching them develop, enjoy life, do things, play, become their own personalities. Sometimes having my personality challenged to nurture, grow, give up and give in. Watching them grow up is terrific. Itfs the best experience of my life next to my marriage.h

Additional Corroborating Data.

At or National Resource Center for Parents with Disabilities, we provide information and resources for the 9 million parents with disabilities in the United States. We also conduct research, and train parents, family members as well as professionals such as psychologists, lawyers, physicians, occupational therapists, nurses, and social workers. Our center provides technical assistance and consultation to over 3,500 parents and family members each year. Through our work, we are able to document the issues and needs of disabled parents and their children. For example, when a parent or professional contacts us, we document the specific issue. In this way, we are able to identify trends and needs. The national needs identified through our national survey strongly correlate with statistical and anecdotal data documented by requests to our national center as well as our organizationfs 21 years of clinical experience with families with disabilities.

In addition to the national survey I described, my colleagues and I at our national center have conducted several additional studies of specific groups of parents or specific ages of children of disabled parents. These investigations are characterized by non-pathologizing hypotheses and strong input from the disability-community. Several of the principal researchers were also parents with disabilities or family members. These studies include: parents with physical disabilities and their infants; mothers with visual impairments; parents with intellectual disabilities; children of parents with disabilities; deaf parents and their children, and disabled parents and their adolescent children. Here are some additional issues which we have investigated in our research as well as documented through our services to over 20,000 disabled parents and their children.

Financial Obstacles for Parents with Disabilities

The many social obstacles and the lack of resources means that disabled parents face more expenses than non-disabled parents. For example, a disabled parent may have additional medical bills, or need to buy special equipment. Yet, the average income for disabled parents is much less than that of non-disabled parents. In the U.S., people with disabilities are almost three times as likely as people without disabilities to live in poverty. Only 30% of people with disabilities between the ages of 18-64 are employed, compared to 80% of people without disabilities.

Deaf Parents

In a recent study conducted in California, deaf parents overwhelmingly feel their parenting needs unmet by any source. Deaf parents criticized the lack of services and support for their families. Deaf parents called for more parenting information, in-home services, support groups and workshops provided by persons fluent in ASL and knowledgeable about Deaf culture. Nationally, deaf parents have identified one of their areas of greatest concern as the interaction with their hearing childrenfs preschool or school systems. Deaf parents repeatedly describe how they are excluded from active participation in their hearing childfs education. Interpreters are often not provided for parent/teacher meetings or other school functions. Teachers often have misconceptions about deaf parents ? for example, they do not understand how to communicate with them, or they do not understand that their hearing children have a different linguistic and cultural background just like children from other cultural groups.

Violence Issues

There is a significant level of violence in the lives of many disabled parents, and this clearly will have extremely negative consequences to children of disabled parents. Disability related risk factors for increased vulnerability to violence or abuse include: stereotyped devaluation of women with disabilities; dependency on other persons for personal assistance; difficulty financing and obtaining adaptive equipment; denial of sexuality in women with disabilities; cognitive impairments associated with traumatic brain injury, mental illness, and mental retardation which may limit ability to recognize abuse and seek help; lack of economic independence ? that is, many disabled people remain in abusive relationships because it is perceived as their only option. Women with disabilities report significantly longer durations of physical or sexual abuse compared to women without disabilities and unique forms of abuse related to their disability. Women with developmental disabilities are 4 to 10 times as likely to be sexually assaulted as other women are. Traditional shelters and programs for battered women are generally not accessible to women with disabilities.

Adaptations Supporting Parents with Disabilities

I mentioned earlier that adaptive parenting equipment can have a profound impact on health and prevention. Let me give you some examples of these adaptations. A parent with poor walking balance or repetitive stress in wrists and arms may need a walker with an attached babyseat in order to move the baby safely from room to room. A parent with back problems may need steps so a heavy toddler can climb into a high chair for feeding. A parent in a wheelchair may need a diapering surface or bathing set-up that is adapted at a workable height. Parents whose disabilities affect their hand usage, such as repetitive stress, may need switch-operated toys or page-turners to use in reading books to their children. Deaf parents may need a baby cry alarm to maximize their responsiveness to their babies, while captioned educational videos in American Sign Language can be useful for deaf parents with preschool children. A blind parent may need an adaptive device for measuring a child's medicine or may need picture books or puzzles to be Brailled, to facilitate teaching words and concepts.

Our center has conducted three research projects specifically focused on developing and evaluating the effect of adaptive equipment for disabled parents. Our studies found that such equipment can have a significantly positive impact on the interaction between parent and child, in addition to reducing difficulty, pain and fatigue. By reducing the physical demands of taking care of their child, adaptive equipment can be critical in preventing secondary disability complications. For instance, the equipment may prevent the need for additional rehabilitation services to reduce secondary back or repetitive stress injuries. Prevention of secondary injuries also prevents additional stress on the parent/child relationship. Adaptive equipment has also appeared to have a significant role in preventing or alleviating depression associated with post-natal exacerbation of parental disability, such as in multiple sclerosis.

Depression in Mothers with Disabilities

Current research finds that depression in women with disabilities is 3 to 10 times more prevalent than in women without disabilities. And, this can be exacerbated by the lack of access to services. Women with disabilities may be especially vulnerable to depression during their pregnancy and postpartum due to inaccessible or inappropriate pre and post-natal services. Depression is also more likely among those women with disabilities which have been recently acquired or exacerbated post-natally. At our National Center, depression is a frequent issue in the loss of child custody by mothers with disabilities. Maternal depression is a known risk factor for the development of an insecure attachment relationship and therefore has numerous other negative consequences for their children's social, emotional and cognitive development.

Although all the issues and concerns I have just been discussing are alarming, I want to remind everyone that in spite of these personal and social obstacles, most disabled parents endure and raise happy, healthy children. It is testimony to their resilience, creativity and love for their children.

Studies of Children of disabled parents

The studies I have just been discussing focus on some of the issues of concern to disabled parents. Of course, these issues also impact their children. But, now Ifd like to focus a little more on the children of disabled parents. What do we know about the children of disabled parents? I would like to summarize the research findings on children of parents with disabilities.

Many studies of children of disabled parents assume that being raised by a parent with a disability will have significant negative outcomes. For example, some researchers claim that children of disabled parents are at-risk for parentification ? that is, these children will have to assume family roles that ordinarily should be those of the parent. Researchers also claim these children will have behavioral problems; psychological impairment; delayed language development; poor self-concept; distorted body image; psychodynamic conflict; developmental delay; and these children may be at risk for child-neglect or child abuse.

Can these generalizations be true? No. There are significant methodological problems with many studies of children of disabled parents. As a result, these findings are often not accurate. Much of this research lacks methodological rigor including: these studies overgeneralize from a single case study. They use only clinical populations ? that is, their sample are only people with who have significant medical or psychological problems. They do not distinguish the age of the children ? for example, whether the children are infants or teenagers. A particularly significant methodological problem among many studies is that they do not distinguish among different types of parental disabilities ? deaf parents, blind parents, parents with mental retardation, parents with psychiatric disabilities ? all are assumed to be the same. Many of these studies also do not clarify or enumerate important contextual factors in the families they are studying ? for example, known risk factors such as poverty, a parentfs history of abuse in childhood, parental substance abuse, parental depression, or lack of adequate resources and supports.

Without considering these contextual factors and distinctions, problems within these families are frequently attributed to the parentfs disability. When these factors are clarified and documented, studies can suggest more appropriate services that are tailored to meet the specific needs of these families and improve outcomes.

Another difficulty with many of the studies on children of disabled parents is that many researchers presume a detrimental impact of parental disability on the child. That is, they assume that having a disability is negative, and this leads to research hypotheses, which assume that being raised by a disabled parent must lead to negative outcomes. Not surprisingly, these studies confirm their pathological hypotheses, revealing the dominant cultural opinion that the presence of a parent with a disability in the home poses many threats to normal child development and adjustment.

All of these flawed research findings might make people worry about the welfare of children of disabled parents. Children of disabled parents seem to be at great risk. Fortunately, there are more recent studies, which not only point out the flaws in previous research, but this newer research also documents more positive outcomes for children of disabled parents.

These more recent studies conclude there is average to better-than-average development and functioning among children of disabled parents. Investigators also found positive outcomes for children of disabled parents: enhanced coping and problem-solving skills; greater acceptance of difference; and, more positive attitudes towards disability. Overall, numerous studies have documented the absence of ill effects of a parentfs disability per se. Predictors of problem parenting have been the same as those for non-disabled parents ? particularly, history of physical, sexual, or substance abuse in the parentfs family of origin. The availability of support and appropriate resources to the family was found to be an extremely important and predictive variable as well.

For example, regarding the pathological supposition that children of disabled parents will be gparentified.h More recent studies refute this assumption, finding instead that disabled parents frequently take on increased responsibilities and risks rather than stress their children or ask their children for assistance. Also, some responsibilities are normal and appropriate within the disability community ? similar to, for example cultural differences between families. Another important issue that research studies often overlooked is the availability of resources ? which can be an important mitigating factor in the degree and type of assistance required within the family.

What kind of research needs to be done?

With so much questionable research and inherently pathological assumptions about the capabilities of disabled parents and the outcomes for their children, it is crucial to conduct research on disabled parents and their children which is culturally-sensitive, which addresses the methodological flaws of previous research, and recognizes diverse types of disabilities. It is also crucial to understand that barriers to positive family functioning are often located in external social and environmental obstacles rather than as a result of the parentfs disability.

Increasingly, researchers from the disability community call for using a disability-culture perspective ? that is, recognizing disability as a socially constructed concept, distinguishing difference from pathology, and identifying variables that promote resilience. This view shifts the emphasis from impairment to the stigma, prejudice, discrimination, marginalization, and disempowerment imposed on people with disabilities.

Another consistent problem in many research studies is that they do not accurately reflect the perspectives of disabled parents or their children. We need more studies that use and emphasize an ethnographic approach. Rather than imposing definitions or confirming culturally biased and pathological hypotheses, we need more studies which focus on understanding family experiences from the perspective of disabled parents and their children. We need to identify and understand which factors enhance as well as those factors that are detrimental to family functioning. Identifying the obstacles in our familiesf lives and offering solutions to these obstacles uncovers the strengths in families so these strengths can be reinforced. Knowledge from these studies can guide future policy, support services, training and research.

Why study children of disabled parents?

Perhaps you wonder why it is important to conduct research on disabled parents and their children. Why do we need to know about them? I would like to give you a few reasons.

At our National Center, we have repeatedly documented that there are many many false ideas about disabled parents and their children. Many people have questions about children of disabled parents. Many people are not sure that it is a good idea for disabled people to have children. Many people think that disabled parents are not capable of raising children. A lot of people ask questions about disabled parents: Are they really fit to be parents? People ask how can a mother who is paralyzed, how can she handle a young baby who needs to be bathed and clothed and fed? How can a blind father read stories to his child? Or, how can a deaf parent teach their child to talk or sing?

These questions about disabled parents have very real consequences. For example, in the United States, judges will often award custody to a non-disabled parent rather than a disabled parent ? because the judge has an assumption that it is not in a child's best interest to have a parent with a disability. Or, perhaps someone will decide to take a child away from disabled parents ? because they believe that disabled people cannot raise children properly. Children of disabled parents are seen as victims, with implicit and explicit criticism of disabled parents, their values, their choices and even their right to have children at all. Remember, in our national survey of disabled parents in the United States, 15% of all disabled parents reported attempts to remove their children.

In the U.S. almost every day some families with disabled parents are torn apart. Sometimes they are torn apart by outsiders, by agencies like child protective services or family courts or maybe even relatives who donft believe that disabled people are fit to be parents. Are those people always right?

So, one reason for studies of disabled parents and their children is to answer these questions. Are these children really in danger? Will these children really have problems? Or is it because society doesnft think certain kinds of people are capable of being parents. So is that parent really incapable? Or is it because society never understands those who are different? If there are difficulties, what can help this situation? What kinds of resources will truly help these families?

Right now, I am also working on a new national research project. Our research focuses on disabled parents with teenage children. The goal of this study is to understand the experiences of disabled parents who have teenage children, and also to understand the experiences of teenagers with disabled parents. We are including many different types of parents with disabilities in our study, for example, blind parents, deaf parents, parents with physical disabilities, parents with medical illness, parents with psychiatric disabilities, parents with mental retardation. We also surveyed the teens of disabled parents. And, we surveyed non-disabled parents and their teens as well. Our three-year research project on these families is almost completed, but today I would like to share with you a few interesting preliminary findings.

[Note: I will check to see how much time is left. Depending on the time, I will shorten or skip some of these findings.]

First, comparing the responses of disabled parents with non-disabled parents. Two aspects of our data are noteworthy. First, the household income of parents with disabilities was on average $15,000 per year less than that of parents without disabilities. This is particularly significant because, after the disabled parent completed their survey, we had asked them to give the survey to a non-disabled friend who was also a parent. We would expect that most friendships reflect people with similar educational, social and financial status. However, this finding shows that disabled parents still face significant financial obstacles compared to non-disabled parents. The second noteworthy aspect of the data was how few differences there were between families of parents with and without disabilities. With just a few expected exceptions (for example, access to accessible transportation, overall health, and the types of chores the teen performed at home), the two sets of families were remarkably similar. They were similar on how many friends their teens had, the times their children went to bed, and how active their teens were after school. These families attended church about the same amount, ate dinner together most nights of the week, and parents monitored their teensf music and homework the same amount. Overall, disabled and non-disabled parents described their families very similarly.

Comparing different types of parental disability. Grouping all parents with disabilities together may obscure some important differences across groups. But again, we found more similarities than differences, and often these differences were to be expected. One such difference in the rate of marriage to a person with a disability. Consistent with national data, 91% of deaf parents were married to a deaf person. This was less true for parents with visual impairments (35% married a person with a disability), parents with physical disabilities (20% were married to a person with a disability) and parents with MS (14% were married to a person with a disability). Parents with MS were notable for several findings. They were oldest at time of disability onset, they reported the most fatigue, they were the most likely to experience job loss and decrease in family income, and least likely to marry a person with a disability. Parents with visual impairments were the most educated, reported better overall health, reported the least fatigue, and were the group that were more likely to indicate a desire for more adaptive equipment. Those parents with physical or systemic disabilities reported the most pain and greater impact of disability on their daily lives.

Comparing teens of parents with disabilities to teens of parents without disabilities. Teenagersf responses were similar across all groups, with just a few differences. All teens agreed they did an average of 16 chores per week. (However, interestingly, in all groups, parents said their teens did an average of 12 chores per week.) The teens of parents with visual impairments reported more than the teens in the other groups that their parents came to their school to educate the class about disability, and that they were less active with friends after school (perhaps reflecting transportation issues for parents with visual impairments). The teens of deaf parents were the most different from the other teens. Compared to teens of parents with other types of disabilities, teens of deaf parents were less likely to talk with their parent about deafness and more likely to talk with their friends about deafness. Teens of deaf parents felt their families were more affectionate, protective, and supportive, but also more restrictive and less open, compared to other teens. These teens reported they were more likely to get to do things because of their parentsf deafness than did teens in the other groups. And they were more likely to report that their families had stories and traditions about deafness, compared to teens in the other disability groups. This may reflect that Deaf culture incorporates stories and having family stories about deafness would be consistent with this culture.

In closing, I want to especially thank all the disabled mothers and fathers who have participated in my research over the years. They truly are successful parents. They have taken good care of their children, and raising children is a lot of work. A lot of work. And I want to thank all of you for inviting me here today.

We all have a responsibility, not just to educate and work with disabled parents, but we have a responsibility to educate and work with all parents. Disabled parents and non-disabled parents. We have a responsibility to defend all parents who love their children, to defend all parents who want whatfs good and right for their children, but who want to do it in their own way, in their own customs, in their own language.

Thank you for allowing me to share some of our research on parents with disabilities and their children without disabilities. It has truly been an honor, and I hope we can continue to have many more years of dialogue about disabled parents and their children.

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