Nicole’s day begins at 6:30 am; she is awakened by her daughter, Evelyn, babbling to herself in her crib, which right next to the bed Nicole shares with her husband of eight years. Evelyn is a remarkably happy baby, and in between random syllables Nicole hears her repeating her favorite words: dada, mumma, kitty. Dada was Evelyn’s very first word, and Evelyn herself was long awaited, born after five agonizing years of infertility treatment.
As Evelyn’s chatter gets louder, Nicole sits up in bed, maneuvers herself into her wheelchair and rolls towards her baby, pausing to grab a clean diaper on her way. Evelyn reaches for her mother, who lifts her up for a diaper change. After getting her dressed, Nicole will place Evelyn into a high chair that is adapted to sit at wheelchair height, and Evelyn’s smile will light up her face as she feeds herself fruit.
Nicole’s routine – a combination of mundane chores, sleep deprivation and moments so beautiful they take your breath away – is a familiar one for parents of young children. Nicole acquired cerebral palsy during her own birth; the infertility she experienced before Evelyn was born is unrelated to her disability. She holds a master’s degree in public health, with expertise in disability policy, and she knew by the end of their first date that she would marry the man who is now her husband. She got engaged to him six months later. Decisive, accomplished and sure of herself, Nicole nonetheless was uncharacteristically hesitant about becoming a parent.
“I was thinking about physically how I would care for a child. I knew I could do it, as a person with a disability, because I had three younger sisters I had a hand in raising…so I knew I could do it. But I did think long and hard about that.” And even though Nicole had tangible proof of her childcare abilities every time she changed a sibling’s diaper, she lacked disabled role models, and struggled to see herself as a parent.
Nicole’s perception has changed, of course, but the idea that disabled people just don’t “look” like parents persists. Nicole encounters it frequently when she is out in public with Evelyn.
“What was shocking to me was that I could sit my daughter on my lap, and she has dark hair and blue eyes just like her mama, and she could be calling me mama and someone who doesn’t know us could assume that she’s not my child. And that happens all the time. It’s very subtle, but you know it when you see it.”
Heather Watkins, an activist, author and mother, is familiar with this bias. Like Nicole, Heather, who has muscular dystrophy, grew up caring for younger siblings, and knew that she was capable of caring for a child. But Heather was also affected by how infrequently disability was represented in the media, or even in her history classes at school.
“There were so many people I didn’t learn about who were disabled…Harriet Tubman, Fannie Lou Hamer, Brad Lomax, all these people who had done fantastic things, and if I had just been told that they had a disability, how might that have contributed to my self awareness and self esteem?”
Now a figure in the local and national disability justice movement, Heather has gone on a develop pride in her identity as a disabled Black woman, a change she credits to connecting with other disabled people, particularly disabled people of color.
But, she wonders, would having had these role models at an earlier age helped her to picture herself as the confident, capable parent and woman she has become? “When there’s a role that calls for a parent, why can’t they have a disability?,” she asks. “I think that representation is important, not only individually…but for the collective consciousness.”
DISABILITY, PARENTING AND DISBELIEF
Even as people with disabilities become more integrated into community and civic life, after a long, tragic (and still ongoing) history of forced institutionalization, the right to become a parent remains contested for disabled people.
Nicole calls parenting the last frontier in civil rights and equity for people with disabilities. “It’s an assumption that still persists, that people with disabilities do not have children, or can’t have children or don’t want to have children, or should not have children.”
Meredith Nicholson, a reproductive justice advocate and reproductive health policy expert, points out that many people still perceive disabled people as categorically asexual and child-like. Nicholson explains that this results in inequitable treatment in reproductive health care settings, such as many physicians’ failure to provide sex education, testing for sexually transmitted infections, contraception counseling or even prenatal care to their disabled patients.
Nicholson, who is Autistic, says she often encounters disbelief that people with disabilities would engage in romantic and sexual relationships, let alone desire parenting, much as disabled people also faced disbelief that they would want to pursue higher education, obtain jobs or other life milestones.
“There’s still this perception that we’re a burden, who would want to date us? Who would love us or want to have sex with us? That we are a liability because we would need so much, instead of that we have so much to give.”
History supports Nicholson’s analysis, given the fact that for many years, disabled people were routinely sterilized, often without their consent. Nicholson notes that there continues to be ongoing cases of coerced sterilization, and that the attitude that people with disabilities are less valuable persists.
“The medical industrial complex takes a lot of forms. Our lives are devalued as disabled people; we’re viewed as a problem to be fixed. We’re [seen as] textbook examples, not people whose lives have value.”
Nicholson notes that many of these issues are intensified for disabled people who are also of color, LGBTQIA, and/or members of other groups that have historically been disadvantaged. Nicholson points that racism and homophobia often combine with ableism (discrimination against disabled people), resulting in increased danger , as well as additional suspicion of their ability to make their own reproductive choices.
When Nicole is wearing her policy analyst hat, she notes that disabled parents are not alone, though they may be much more impacted than their non-disabled counterparts. “We are not supportive of parents in general in this country. And whatever happens to able-bodied people in this country happens to disabled people in a disproportionate manner. “
Heather concurs, remarking that parenting is a monumental task, but her child has benefitted from witnessing relationships in which adults both receive and provide assistance to each other. While Heather freely acknowledges that sometimes she needs support, she notes that everyone needs help with something, and that children thrive in knowing that people can depend on each other.
And for Heather and Nicole, and other devoted parents with disabilities, the view that their children are somehow disadvantaged is hurtful, they say, but also inaccurate.
SCIENCE VS. STEREOTYPES
Attorney Robyn Powell knows the research better than anyone, and she agrees with Heather and Nicole. In fact, she is adamant. “We need to change the presumption that just because one has a disability, it makes them unfit to parent. That is not true. That is not grounded in any type of science. Its simply based on stereotype and speculation.”
Powell is a widely renowned expert on disabled parenting, and the author of a groundbreaking report, commissioned by the federal government, about the state of parenthood for people with disabilities. She herself is physically disabled, and the founder of the Disabled Parenting Project, an online community for parents and prospective parents with disabilities.
Currently a PhD candidate in social policy at Brandeis University, Powell now conducts research about disabled parents and their children. She is one of the first to approach this topic holistically, focused on, as she says “the disability voice.”
“There’s some bad research out there from decades ago that still pops up that saw parents with disabilities in a really negative light. If you’re looking for problems with any parent, they’re going to pop up. So if you set out doing research to find a problem, you’re going to find a problem.”
In the United States, Powell explains, disabled people are significantly more likely to live in poverty, due to a combination of disability-related expenses like purchasing adaptive equipment, and discrimination in educational and employment opportunities leading to lessened earning power. This is compounded by grossly underfunded supportive programs, and policies that often limit economic self-sufficiency, such as the policy specifying that disabled people who save more than $2,000 lose access to the health care benefits they count on to stay alive.
Powell uses statistical analysis to untangle the impacts of poverty from the impacts of parental disability. And once she takes poverty out of the equation, there is very little difference between children of disabled and non-disabled parents.
As she puts it, “the research has found overwhelmingly that parents with and without disabilities and their children often have the same outcomes, and any negative outcomes are not attributed to the disability but to the context in which they live…It’s not the disability [causing adverse outcomes] It’s the poverty, or the food insecurity, or the lack of support systems….So we need to be supporting [disabled] parents, [because] if we can address these issues, the family will be a-ok.”
ARCHAIC AND OUTDATED PRESUMPTIONS: DISABLED PARENTS, CHILD WELFARE AND THE LAW
In the National Council on Disability report that she authored, Powell documented widespread discrimination in the child welfare system against disabled parents, especially disabled parents of color. In fact, her report estimates that 40 to 80 percent of all parents with disabilities lose custody of their children, often due to prejudice, with higher rates seen among disabled parents of color. But, as Powell explains, disabled parents are no more likely than their non-disabled counterparts to abuse or neglect their children.
As a lawyer, Powell has represented or consulted with numerous parents seeking to regain custody. “It always follows the same trajectory” she says. “Parent loses custody, child welfare assumes the parent can’t parent, child welfare doesn’t provide any supports or accommodations, parent ends up in court.”
Interrupting this trajectory is difficult, due to what Powell calls archaic and outdated presumptions and laws. In fact, in 35 states, the fact of a parent’s disability is considered sufficient grounds for terminating parental rights, even without any other indications that the child is at risk.
In 2012, Powell’s report included suggested language for state-level legislation to protect disabled parents from discriminatory treatment in the child welfare system. But at present, only 15 states (in red on the map below) have laws protecting the parental rights of people with disabilities, and these laws vary greatly in scope. Six additional states (in yellow on the map), including Massachusetts, have legislation proposed but not passed.
Technically, state child welfare agencies are subject to the Americans with Disabilities Act’s prohibitions against disability-related discrimination. The federal Department of Health and Human Services also recommends that child welfare agencies support disabled parents and provide accommodations, such as adaptive equipment or parenting coaches.
But based on what she’s witnessed, even Powell, with her stable partner of almost a decade, her steady job and her long list of accomplishments, worries about how she herself will be treated when she has her own children. She expects to have to fight an uphill battle for her right to parent, starting as soon as she gives birth.
“If I were to have a baby, I’m guessing that because I would need physical help with caring for [the baby], with things like changing diapers and getting started breastfeeding, things like that, it could be seen as ‘she’s not fit, she just can’t do it, she’s not capable’….I’m just as vulnerable as any other [disabled] parent.”
Powell is also quick to note that child welfare workers are well-intentioned, but not familiar with the needs and rights of disabled parents. And she applauds child welfare authorities’ mission to protect children, but she believes that addressing prejudice benefits both parents and children.
Leah Harris knows the devastation of a child welfare system that, as she puts it, “punishes pain” instead of supporting struggling parents. Now in her late 30s, Leah is a writer, activist and mother of a middle school-aged son. Her mother, who was diagnosed with schizophrenia, permanently lost custody of her when she was only five, initiating a series of foster care placements and stays with relatives.
“Its was such a trauma, such a rupture,” she says. “Knowing what we know about child development, tearing families apart like that is really damaging. And that [damage] was never acknowledged or recognized then, and it’s not very different today.”
To Powell, the research is clear that removing children in the absence of abuse is damaging, both to individual families and to society. She points out that removals often leads to worse outcomes, and have much higher financial costs than keeping families intact while providing support and resources to the parent.
“Children do far better most of the time if they are raised in their birth home. Why we would want to take children away from their birth parents and put them into foster care, which results in really negative outcomes is beyond me. And if you are looking at it from a policy or economic standpoint, it also doesn’t make sense. It makes more sense to provide support to the parent.”
Providing support to vulnerable parents rings true to Leah, who describes her mother as isolated, marginalized and traumatized by the systems that purported to help her. “Her life was cut short,” she says, “and she was not treated with dignity.”
As an adult, Leah has worked hard to build the kinds of support and community that her mother was denied. When asked what might have enabled her small family to remain intact, Leah doesn’t hesitate:
“I personally benefited so much as a single mom from having a community of single moms, to talk to, to swap baby clothes, basic need things as well as emotional support. That would have been so helpful to her, absolutely. Just having community. And some way for her to envision improving her economic situation. And once you have that social support and you are treated with dignity, like a person, so much more is possible from there….it is essential to our survival.”
This is what Powell means when she says that the research about disabled parents is clear: “If they have food insecurity, if they have housing instability..if they are isolated.. these are all factors that result in adverse outcomes for children. And it’s not the disability [causing problems], so we need to be providing supports.”
As Powell describes, supports can range from food assistance and providing resources to raise families out of poverty, relief child care or even an adapted crib. “These simple things keep families intact,” Powell says.
Leah knows that her mother loved her, and was devastated to lose her, sometimes expressed in the poetry she wrote for her daughter.
Leah felt the loss hard, too, and as an adult, feels strongly that her loss is connected to a social system that does not afford dignity to people who are marginalized, including people with mental illness diagnoses. As Leah says, “She was who I loved, who I attached to. And the system predicted she would fail, then set out to fail her.”
This understanding has led to Leah’s activism, and her deep commitment to promoting dignified, compassionate responses to people’s trauma, in place of the punishment she feels her mother received from the system.
Leah also concurs with Merri Nicholson, the reproductive justice policy expert who feels that much of our child welfare system’s treatment of disabled parents is rooted in historical attempts to “cure” disability by preventing disabled people from reproducing.
“My mother told me that when she became pregnant with me…everyone was trying to talk her into having an abortion, because there is still the idea that someone diagnosed with schizophrenia shouldn’t be breeding, that we shouldn’t infect the gene pool. Those ideas still remain in our society. The prophecy was that she would fail as a parent.”
Like many people with mental illness, Leah’s mother died prematurely — the average lifespan for people with psychiatric disabilities is 20 to 25 years less than general population lifespans, even when researchers account for causes of death, like suicide, that are directly related to mental illness. Leah was able to reconnect with her mother before her death, and treasures the time they got to spend together, which she describes as an opportunity to learn the truth about her past, which she says her family kept from her.
Among the research that Powell reviewed was a study from the United Kingdom of adult children of parents with intellectual disabilities. All of the children, except for one, had initiated attempts to reconnect with their parents upon growing up. To Powell, this suggests that, like Leah, children long for their parents, regardless of disability status, and should be given the support they need to stay together.
Just like Leah’s mother’s disability was intensified by poverty, isolation and life stressors, Powell says that removing obstacles and marginalization gives parents what they need to not just keep their families intact, but to thrive as parents.
“We need laws and policies that safeguard the rights of disabled parents, but we also need access to supportive services, because no one should have to parent alone and we know that children do far better most of the time if they are raised in their birth home.”
Heather Watson’s adult daughter, Nikisa Thomas, 24, concurs. She was never separated from her mother, who also helped raised her cousin, Tyrel Watson, 22. Nikisa and Tyrel have a sibling-like bond, and are currently working together as artists.
“I just really look forward to coming into the house every day, having a parent like her,” Nikisa says, and credits her mother’s support and example as freeing her to pursue her musical and artistic endeavors, and to develop into her own kind of person.
Tyrel, who also has a disability, has also benefited from his aunt Heather’s care. “She taught me a way of just being truthful to myself,” he says. And as Nicole has always said “this is the outcome we want, the chance to be parents, if that is what we choose.
DISABILITY’S POSITIVE IMPACT ON PARENTING
Nicole appears to be an excellent mother by any standard: devoted, thoughtful, capable, and accepting. And she feels strongly that her disability enhances not only her identity, but her parenting.
“In our house, disability is an asset…there are strengths that come from having a disability. And [my daughter] is going to grow up understanding that.”
Reflecting on the major adjustment inherent to bringing home a newborn, Nicole says that in some ways she had it easier than her non-disabled peers.
“Having a disability really prepared me for that big change [of having a baby] because I had already been working my schedule around my disability….I was already used to things taking a bit longer and life having to move at a slower pace…and with Evelyn, that’s just a really happy joyous reason.”
For Heather, being disabled also enriched her parenting during her daughter’s teenage years, including when Nikisa came out as a member of the LGBTQIA community at age 13 .
“I honestly didn’t want my child to not feel loved and accepted by her parent, because that’s a horrible feeling,” she explains, a reaction that she says was informed by her experiences as a disabled woman.
“I don’t know the road that other people have walked, but for me, disability is something that’s made me really sit and think about all of those choices, and my own beliefs, where they were antiquated, where they were downright wrong…And you have to cast out what doesn’t work, whether that’s ableism, homophobia, trans-antagonism, I’m always learning something new. And that’s something that disability has helped me to do.”
Nikisa, now 24, agrees that her mother’s disability only enhanced her childhood, and didn’t take anything from it. Her mother slowed down for her, she said, and always made space for who she is, as a young child and now that she is an adult.
Nicole and Heather also agree that their disabilities, and their pride in their disability identity, serve to make children more compassionate, a characteristic that Leah feels is sorely needed in this world.
“Having a parent with a disability can be a crash course in empathy and compassion in a way that maybe able-bodied parenting takes a little more effort to teach those lessons. I don’t think I’m going to have to take Evelyn to some service project to teach her compassion and empathy. I think she’s going to see it here.”
Heather, Leah and Nicole also agree that being members of the disability community has exposed their children to diverse people and graced their lives with positive experiences.
This is why, perhaps, Robyn Powell sums by saying that children of disabled parents are lucky. Nikisa and Tyrel feel lucky. And while Nicole’s daughter Evelyn is too young to answer the question, there is something about the way she wiggles her entire body and smiles in adoration whenever she hears her mother’s voice which suggests she too might feel lucky.