(Content Note: This article contains descriptions of medical ableism and eugenics.)
Mother’s Day is meant to celebrate the role of all mothers in our families, but Black disabled mothers are all too often erased from motherhood. Worse, their parental rights and fitness are attacked on multiple fronts by racism, misogyny, and ableism. In fighting for Black disabled mothers’ lives to matter, they not only tackle the misconceptions of their families and communities; they’re regularly targeted by medical and social services as well.
Though there are at least 4 million disabled parents in the country and the numbers are still growing, disabled parents face tremendous hurdles regarding family planning, child rearing, and ambivalence about their choices to become parents in the first place. Disabled parents and couples regularly have to fight to retain parental rights to their children, not because of neglect or abuse, but because they are simply parenting with a disability. The parental rights of disabled people aren’t even fully protected, particularly if their state has not enacted legislation to protect disabled parents from discriminatory and unfounded practices. For Black disabled parents, especially Black disabled mothers, there are additional justified fears of being unfairly targeted due to racism, sexism, misogynoir, and ableism within medical and social services.
Tiara Simmons, an activist for disability access and mother of a 19-month-old son, noted how common ableist misconceptions about who can become parents create barriers to expectant parents, especially for Black parents who are already navigating racist stereotypes about Black families.
“Unfortunately, Black parents are already questioned,” Simmons said. “Add the layer of disability [and] we are more heavily watched and scrutinized. Every move is critiqued.”
Heather Watkins, a disability rights activist and the mother of a 27-year-old daughter, also points to how problematic myths about the sexual expression and desires of disabled people affect common perceptions about who parents are, who desires children, and who can and wants to procreate.
“Many of us are seen as non-sexual and therefore wouldn’t desire or be desired to even become parents, let alone have the ability to parent children—[so] let’s start there,” Watkins said. “Also, we are [thought of as] incapable of being competent parents due to our disabilities which may range from apparent, non-apparent, and chronic illness.”
The judgement and fears from families, friends, and communities can also negatively impact disabled parents, who are already struggling from societal expectations. Reyma McCoy McDeid, an activist who centers Black disability justice in her work and is the mother of a 6-year-old girl, recalled how disheartening her parents’ reactions were to her pregnancy.
“Both of my parents were disabled and because of a lack of support, were unable to care for me and I became a ward at age six,” McCoy McDied said. “When I informed my family that I was going to become a parent, I was presented with a lot of “concern” that my child would face a similar fate, but this was not coupled with offers to support me and my child.”
Even when it comes out of genuine care, concerns from those who matter the most in their lives can impact the confidence of disabled parents, especially if that concern isn’t followed by unconditional support.
“There were questions and comments about my ability to have a full-term pregnancy and whether I could handle the physical demands of parenting,” Watkins said. “It wasn’t an overwhelming amount but it doesn’t have to be; one comment can tank your confidence if you’re already teetering on the brink of self-doubt in an ableist society.”
In addition to struggling with their loved ones’ concerns, Black disabled parents can also be overlooked within their own communities because of how ableism can mix with racial trauma, misconceptions, and toxic narratives about self-sufficiency and resiliency. Disabilities are far more prevalent and expansive throughout communities than people think, whether they’re acquired by birth, accidents, illnesses, or the effects of aging. Watkins highlighted the need for Black communities to better understand historical perspectives about disabled people and how a person’s disability is “an identity-maker, not an indictment.” Watkins emphasized that disabilities are “not karmic effects or a family curse,” and that it’s important to dispel myths about disabilities being inherently negative.
“Many of us live in the continuum of being in need of care, caregiving, and community-building, myself included,” Watkins said. “Rarely are these the stories and narratives we hear about and [they’re not] given adequate reflection as contributing to community well-building. Far too often, disability is othered and distanced and that needs to change.”
Instead of erasing or ignoring disabled people in communities, it’s important to share stories that explore how complex and comprehensive disabled lives can be “beyond pity and pedestal,” Watkins advised.
“Act like we exist, because we do,” Simmons said.
Even with support and love from loved ones, disabled parents are disproportionately subjected to sharper judgements and interference than their non-disabled peers. Medical and helping professionals are used as agents in discriminating against disabled parents instead of providing resources and tools they may need to parent in the most accessible, inclusive, and affirming ways possible. The ableism endemic in healthcare systems and laws can enable doctors, nurses, and social workers to needlessly tear families apart and leave parents in states of distress because they are wrongly dismissed for the bodyminds they possess.
Dr. Morénike Giwa Onaiwu is an educator and advocate who focuses on disability justice. Despite being the mother of three sons and three daughters ranging from elementary school age to college age, she still remembers the condescension and disbelief of medical staff when she wanted to become pregnant.
“I was admonished by one doctor about how ‘irresponsible’ it was for me to become pregnant ‘given my circumstances,’” Onaiwu said. “So apparently you have to check off a certain number of boxes to be deemed as ‘qualified’ to parent? I don’t see non-disabled parents being subjected to that standard. It’s ridiculous.”
When Simmons requested being screened for polycystic ovary syndrome, one of her doctors gave her unsolicited advice about her desire to have a child.
“He told me that being pregnant wouldn’t be a good idea because I’m in a wheelchair and fat,” she said.
The tendency of medical professionals to view disability as an “undesirable” trait also leads to treatment and medical advice that dehumanizes disabled patients, particularly when it comes to screening for inherited genetic traits and disabilities.
“I remember the conversation from my obstetrician who offered, in levity, the option of termination should we find evidence of disability emphasizing the point that it was still early in the pregnancy,” Watkins said.
Onaiwu, Simmons, and Watkins are far from alone in their experiences. Black disabled mothers are subjected to hyper-focused scrutiny, whether they are taking inventory of their family planning options, seeking prenatal care, in the delivery room, or are gearing up to take their bundle of joy home for the first time. And as Black disabled women, they are especially aware of how dangerous the intersections of misogynoir and ableism can be for them and their babies during both pre- and post-natal care.
“I was petrified throughout my pregnancy when I learned of the maternal [and] infant mortality rates for Black women,” Simmons said. “I was equally terrified when I learned this rate includes children under the age of one.”
McCoy McDeid, who is autistic and requires specific accommodations regarding outside stimuli like being touched and lighting, found her prenatal visits to be “terrible” because of how her needs were often ignored at best, and used to berate her at worst.
“During one visit, the midwife kept prodding me, in spite of my asking her to not do so and she became belligerent with me,” she said. “I reported her and asked to be paired with a different midwife, but was told that I would need to meet with whichever midwife was available during my appointments and eventual labor and delivery.”
Black disabled mothers are also intimately aware of how misogynoir and ableism can still threaten their families despite successful births and healthy babies. Doctors, nurses, or social workers can question their ability to parent and use their positions of authority to create suspicions or demand investigations, with no basis of evidence and without providing appropriate support systems and policies. In fact, their hyper-vigilance and mistrust commonly cause the difficulties disabled parents are penalized for.
“I think about how I was watched very closely after delivery,” Simmons said. “I think about how Black women aren’t trusted, our word isn’t trust, our abilities and motives are second-guessed—and I’m disabled. After delivery, nurses watched my every move and wouldn’t even let me get into my wheelchair unsupervised which led to me being late to feedings in NICU. The NICU nurse blamed me and said ‘this is what you wanted’ (re: breastfeeding) and had no empathy that it takes me longer to do things other moms did.”
Simmons spent the first year of her child’s life believing that she was doing everything wrong and was afraid of people’s comments and judgements if she went out in public with him.
“I’ve been told it was selfish of me to become a parent as a disabled person. I replay this in my head at least once a week,” she said.
Watkins is still unsettled by the amount of power doctors can exercise in determining parental competence for child removal cases, even when disabled mothers are at their most vulnerable.
“While [I was] in labor, the on-call OB, noting my disability and perhaps my youthful appearance, [again questioned] whether I was confident in being able to provide care for my new baby,” she said. “My fiancé at the time—who was my daughter’s father—and my mother were in the labor and delivery room, [but] there obviously wasn’t a thought given to [my] being interdependent and having help from both of them.”
The misogynoir experienced by Black disabled mothers also takes the form of erasure because narratives surrounding parenthood with a disability is a #DisabilityTooWhite problem. Too often, representation of Black disabled mothers downplays their disabilities, or takes the form of “inspiration porn” and sob stories, creating an imbalanced and incomplete picture of disabled Black motherhood.
“Show me some Black disabled families who are thriving, not just GoFundMe links of people in need of help. Show me happy Black disabled mamas loving on their babies,” Onaiwa said. “Tell [our] stories. Too much of the disability experience is told through a white lens.”
Simmons tries to highlight how in her experience, her family reacted to her desire to have a child with surprising joy.
“They were always very supportive of me becoming a parent, even when it was just a thought,” she said. “My family was excited since I’m the last of my siblings to have a child. My mom said, ‘Well, it’s about (redacted) time!’”
The support of family and friends, as well as medical and social service providers, makes an incredible difference fo Black disabled mothers, but like most parents, the opinions that matter the most are those of their own children. Some worry how ableist attitudes and judgments will impact their children and their views of having a disabled parent, but hope they can teach their children to know better.
“I want my daughter to see that disability can be both a part of life’s progression—people experiencing the privilege of aging into disability, for instance—and a result of systemic oppression, [such as] a Black man incurring a spinal cord injury as the result of being gunned down by a law enforcement officer,” McCoy McDeid said.
Simmons hopes she’s teaching her child that everyone is different and there’s no one right way to live or exist as a person.
“I hope that having me as a mom will make disability less of a taboo and he will not even give it a second thought (outside of asking how he can accommodate and advocate),” she said. “I also hope he sees me in my professional life and realizes that we belong in the workplace as well.”
“Disabled peeps have value like non-disabled counterparts and parents, are pretty resilient and adaptive, get frustrated because of inaccessibility and feeling like an afterthought when disability is not centered—which should concern us all,” Watkins said. She wants her child to understand how having a disability helped her mother become a more mindful person, and that disability isn’t a reason for shame and silence, but something to be “heralded.”
For Onawiu, she hopes her child understands a simple truth: “Disabled people are effing amazing, and it’s nothing to be ashamed of.”
It may be bittersweet celebrating a second Mother’s Day in the midst of a global pandemic, ongoing protests about anti-Black police violence, and worries about how disabled folks are at risk of being left further behind in a post-COVID world, but McCoy McDeid, Onawiu, Simmons, and Watkins still find meaning in how they observe the day.
“My own mother died a few weeks after Mother’s Day in 1995, so I’ve always been ambivalent about the day,” McCoy McDeid said. “Since becoming a mother myself, however, I’ve used the day as an opportunity to show appreciation to my daughter for making me a mother.”
Onawiu enjoys low-key family time with a meal and a movie, where her kids draw her pictures and make her cards, all of which she treasures as keep-sakes.
“Mother’s Day is a day to count my blessings and celebrate the gift of being able to have these phenomenal people in my life who call me their mom,” she said.
Similarly, Simmons said she “feels like each Mother’s Day will be a time for me to just reflect on being a disabled mom, and how I can use my experiences to help others like me.”
Watkins is still mindful of COVID-19 protocols, but doesn’t mind a quiet indoor celebration.
“Mother’s Day is special to me because it’s a dedicated day of focus, even though I personally feel like everyday is Mother’s Day and a reason to celebrate,” she said.
The experiences of disabled people are not monolithic, and neither are the stories of Black disabled mothers who know the complex joys, frustrations, and lessons learned that come from parenting with a disability. Social and medical support without judgement, and compassion without condescension from families, friends, and communities can make all the difference for Black disabled mothers and their children, who already struggle with the ableism, racism, and misogyny baked into the institutions and systems they depend on. Parenting can be a lonely journey under any circumstance, so making the stories and realities of Black disabled mothers more visible can help other Black disabled moms feel less alone.
McCoy McDeid hopes that more people understand how being a Black disabled mother in a world of misogynoir and ableism is “a revolutionary act,” while Watkins encourages Black disabled mothers to not downplay their needs and concerns because they have the right to move at their own pace.
“Please remember you matter, in all of your glorious granularity and complexity,” she said.
For Simmons, it doesn’t matter if Black disabled mothers know each other because they’re all still rooting for each other’s success.
“We are disabled Black women [and] femmes,” she said. “I believe that we will be the ones who will help dispel many myths or misconceptions around Black motherhood, and Black disabled motherhood in particular. You got this!”
And Onawiu reminds Black disabled mothers to not forget themselves as they engage in the important work of caring and advocating for their children.
“Remember you’re a mom, but you’re more than a mom,” she said. “You’re also you, so make sure you cherish and take care of you because you deserve that. When you thrive, they thrive, and we all thrive!”