Introduction
It is not uncommon for people with disabilities to be excluded from activist spaces, including the spaces where the topics of conversation include them and impact them (O’Connell, 2016). For instance, reproductive rights for people with disabilities in the United States have not been presumed as an aspect of their human rights, historically nor presently. And this exclusion is related to the fact that their expressed opinions have not typically been sought after. In 2022, the United States Supreme Court repealed the Roe v. Wade decision, leaving certain aspects of reproductive healthcare provision in the hands of individual state governments. However, the topic of reproductive justice (RJ) encompasses more than just the right to an abortion, the medical procedure with which the concept is often interchanged. Reproductive justice is an activist framework developed by a group of Black women that encourages us to acknowledge how reproductive health and related legal rights involve intersections of marginalized identities, that can include ethnicity, poverty, the impact of history, gender expression and sexualities that are atypical, and other sociocultural experiences that were not embraced by traditional feminist theories (Carrión, 2022; Luna & Luker, 2013; Morison, 2021). In other words, reproductive healthcare access and choices of all types should be civil rights entitlements, yet those who hold minority statuses experience infringements upon these rights –people with disabilities most of all. Disability advocates and people with disabilities continue to struggle to bring attention to the unique issues regarding reproductive rights for people with disabilities and the consequences of the minimization of their voices in this context. Experiencing disability is a prime example of the type of marginalization that reproductive justice addresses, yet this association does not have a significant presence in the research literature, as compared to RJ among other minority groups.
Narrative Sources
| Authors | Title | Publication Date | Source Type | PWD and their Diagnoses | Corresponding Codes |
|---|---|---|---|---|---|
| Andrews, Erin | “Disabled parenting in a pandemic” | Jun. 2021 | Blog | Erin Andrews – Triple amputation | Support Structure
SES Intersectionality Legislation Emotions |
| Andrews, Erin | “Doing Disney as a disabled parent” | Dec. 2021 | Blog | Erin Andrews – Triple amputation | Legislation
Advocacy Emotions Intersectionality Support Structure |
| Andrews, Erin | “The perils of spring break” | Mar. 2022 | Blog | Erin Andrews – Triple amputation | Legislation
SES Intersectionality Emotions Support Structure |
| Ayers, Kara | “American dream not yet complete” | Aug. 2015 | News article | Kara Ayers – Osteogenesis imperfecta | Intersectionality
Advocacy Legislation Emotions |
| Brandeis University | “Black, disabled, Deaf, and proud” | Apr. 2022 | Webinar | Earl Allen – Hearing loss
Heather Watkins – Muscular dystrophy Morenike Giwa-Onaiwu – Autism | Intersectionality
Advocacy Support Structure Ethics |
| Brandeis University | “Blindness and parenting: Myths, challenges, and practical advice” | Feb. 2019 | Webinar | Imani Graham – Blindness
Melissa Riccobono – Blindness Michael Bullis – Blindness | Ethics
Advocacy Support Structure Legislation SES |
| Brandeis University | “Disabled parents in the NICU” | Jun. 2022 | Webinar | Kristie Lewis – Spastic quadriplegia & cerebral palsy
Nicole Lomerson – Spina bifida Patrick Cokley – Visual impairment | Advocacy
Intersectionality Legislation Support Structure Ethics Emotions |
| Brandeis University | “Passing state legislation to protect the rights of parents with disabilities in a new window” | Jul. 2020 | Webinar | Kimberly Tissot – Leg amputation | Ethics
Emotions Support Structure Intersectionality Legislation Advocacy SES Adopting children with disabilities |
| Brandeis University | “Perinatal health of women with intellectual and developmental disabilities” | Oct. 2022 | Webinar | Lindsay Brillhart – Intellectual disability (unspecified) | Support Structure
Intersectionality Ethics Advocacy |
| Brandeis University | “The role of disabled and Deaf fathers in the family” | Sep. 2021 | Webinar | Dominick Evans – Spinal muscular atrophy, chronic pain, attention deficit hyperactivity disorder (ADHD), obsessive compulsive disorder, PTSD, & hearing loss
Earl Allen – Hearing loss Kevin Irvine – Hemophilia B & HIV | Intersectionality
Emotions SES Legislation Support Structure Advocacy Ethics |
| Chakraborty, Ranjani & Putzel, Christof | “Parents with disabilities fight to keep their kids” | May 2015 | News article | Alice Goltz – Fragile X syndrome
Jessie Lorenz – Blindness | Intersectionality
Advocacy Legislation SES Support Structure Emotions |
| Clark, Elizabeth | “I fried an egg” | Nov. 2020 | Blog | Elizabeth Clark – Friedrich’s ataxia | Legislation
SES Intersectionality Support Structure Advocacy |
| Cochran, Carrie | “Eli Comes to America” | Mar. 2015 | Short documentary | Adam Ayers – Osteogenesis imperfecta
Kara Ayers – Osteogenesis imperfecta | Legislation
Intersectionality Support Structure Advocacy Emotions Adopting children with disabilities |
| Hu, Luanjiao Aggie | “My experience as an immigrant and expectant mother with a physical disability” | Aug. 2022 | Blog | Luanjiao Aggie Hu – Below the knee amputation | Intersectionality
Support Structure Emotions Advocacy Ethics Legislation |
| Lee, Nicole | “As a disabled woman, my abortion wasn’t questioned – but my pregnancy was” | Sep. 2019 | News article | Nicole Lee – Spinal cord injury | Ethics
Emotions Support Structure Advocacy Legislation Intersectionality |
| McCormick, Lynne | “Just ask” | Mar. 2022 | Blog | Lynne McCormick – Hydrocephalus, cerebral palsy, &
epilepsy | Support Structure
Legislation Advocacy SES Intersectionality Emotions |
| Mossbug, Cheri | “Read the full transcript of Britney Spears’ court hearing statement” | Jun. 2021 | News article | Britney Spears – Mental health condition (perceived as bipolar disorder [BPD]), substance use disorder (SUD), depression, anxiety, & post-traumatic stress disorder (PTSD) | Intersectionality
SES Ethics Support Structure Emotions Advocacy |
| O’Connell, Katie | “We need to talk about disability as a reproductive justice issue” | Aug. 2016 | Blog | Katie O’Connell – Chronic migraines | Intersectionality
SES Advocacy Emotions |
| Rajkumar, Shruti | “With Roe v Wade overturned, disabled people worry how they’ll be affected” | Jun. 2022 | News article | Mia Ives-Rublee – Osteogenesis imperfecta
Morenike Giwa-Onaiwu – Autism Robin Wilson-Beattie – Paralysis Emily Ladau – Wheelchair user | SES
Advocacy Emotions Intersectionality Ethics |
| Ramsden, Sam | “Britney Spears addresses her son Jayden in new Instagram audio” | Sep. 2022 | News article | Britney Spears – Mental health condition (perceived as BPD), SUD, depression, anxiety, & PTSD | Support Structure
Ethics Advocacy Emotions |
| Rena, Laura | “In the end, it’s all worth any effort it takes” | Jul. 2022 | Blog | Laura Rena – Traumatic brain injury & ADHD | Intersectionality
Emotions Ethics Support Structure |
| Rosenberg, Red | “I’m autistic and got a tubal ligation. The overturn of Roe v. Wade will hurt disabled people like me” | Aug. 2022 | News article | Red Rosenberg – Autism | Intersectionality Emotions
Ethics Support Structure Legislation Advocacy SES |
| Ward, Dylan | “A silent pandemic” | Sep. 2020 | Blog | Dylan Ward – Hearing loss from a traumatic head injury | Support Structure
Legislation Emotions Intersectionality |
“Elevate our stories. Make space for us beside you” (Lee, 2019). The stories of people with disabilities are muted. Narratives are rich, person-centered, and culturally pervasive instruments of storytelling, which are of increasing importance for people with disabilities (Akande, 2017; Akande, 2018; Santos & Santos, 2018; Scott, 2014). The purpose of this paper is to begin to bring the narratives and voices of people with disabilities in RJ spaces to the forefront of academic research and to highlight their needs as they have personally described them – in order to improve health and rehabilitation service provision, affect policy, encourage allyship and advocacy, and promote participatory research.
Background
People with disabilities (PWD) have experienced significant discrimination throughout history, and all over the world. In the United States, there have been barriers for PWD to accessing education, transportation, equal employment opportunities, health and rehabilitation services, and validation as members of a variety of sociocultural spaces. These spaces include the worlds of parenting and intimate partnerships. Negative assumptions about the desires and abilities of people with disabilities to have families (i.e., asexuality, perpetual illness, chronic conditions as heritable) and attempts to prohibit such activities have been rooted in legislation and sociocultural traditions for generations (Chambers, 2023; Jenks, 2019; Lee et al., 2020; Rowlands & Amy, 2019). There have been actions taken toward disability rights in the United States since the 1800s; however, none of them have had as great of an impact as the Americans with Disabilities Act (ADA), which first came into fruition in the early 1990s. This piece of legislation went through multiple phases of development over time, and in its 1986 version the committee for this organization stated that “Congress should enact a comprehensive law requiring equal opportunity for individuals with disabilities, with broad coverage… setting clear, consistent, and enforceable standards prohibiting discrimination on the basis of handicap” (Condrey & Brudney, 1998, 18). Having standards enforced as laws should give promise to PWD that their rights are respected and protected by the government, state and local officials, healthcare providers, and fellow citizens. Yet this has not been the case regarding reproductive justice.
Roe v. Wade, a Supreme Court decision in 1973, legalized abortion in the United States and the right to privacy regarding reproductive decisions (Sun, 2022). Although celebrated by many, the Roe v. Wade outcome was controversial, in part because of conflicting views about when a fetus becomes a person, and whether the matter of abortion is constitutional law (since it is not mentioned in the American constitution) (New York Times, 2022). Prior to Roe v. Wade, 30 U.S. states prohibited abortions during any stage of a pregnancy (New York Times, 2022). But with this decision, the Supreme Court provided a trimester framework by which states could determine when the protection of potential human life would outweigh a mother’s right to privacy – mainly during the third trimester. During the first trimester, states could not regulate abortion at all. And during the second trimester, states could regulate abortion in favor of prioritization of the health of the mother. This latitude eventually led to the Mississippi Gestational Age Act of 2018, which outlawed abortions after 15 weeks of gestation in the state of Mississippi, except for cases involving medical emergencies or severe fetal abnormalities (Cornell Law School, 2022; Temme, 2023). A clinic within the state, Jackson Women’s Health Organization, decided to file a lawsuit against Thomas Dobbs, a state health officer, contesting the constitutionality of the Mississippi Gestational Age Act. After almost 50 years, with a groundbreaking motion in June of 2022, Roe v. Wade was repealed as a result of Dobbs v. Women’s Health Organization (Supreme Court of the United States, 2022). It has now been left to individual states to govern matters related to abortion, at any gestational age. Among other reasons and confirming the perspectives of some, the majority of the Court determined that because the Constitution does not address abortion, abortion is not rooted in America’s history, and abortion was a crime when the 14th amendment to the U.S. Constitution was passed – which granted all citizens equal protections under the law – therefore Roe v. Wade was unconstitutional (Cornell Law School, 2022; United States Senate, n.d.). Today, this repeal continues to have reverberations throughout political systems, health systems, families, and the lives of people who no longer have reproductive health freedom in certain parts of the United States.
The Dobbs v. Women’s Health Organization opinion of the court mentions the word disability twice, and only one of those instances can apply to a parent. The reference provides guidance to individual states in the process of developing abortion regulations and describes protection from discrimination based on disability as one of the “legitimate state interests” to be served (Supreme Court of the United States, 2022, 78). Unfortunately, there is no further guidance provided on the opinion of the court regarding how discrimination can be prevented nor how discrimination can manifest against the abortion and reproductive rights of people with disabilities. It appears that the Court’s presumption was that all states would protect legitimate state interests effectively, but it has become apparent that they will not. People with disabilities were overlooked in Dobbs v. Women’s Health Organization as Roe v. Wade was overturned.
As a result, PWD who are parents, those who wish to become parents, and those who do not wish to become parents will experience increased hardship in their efforts to obtain and maintain autonomy in decision-making regarding their reproductive health. The reproductive rights of PWD are threatened and seemingly in the hands of legislators who do not understand nor appreciate their perspectives as autonomous individuals, as parents, and as potential parents. Certain states have already limited access to contraception, and other reproductive health services like abortion (Choi & Cole, 2023; Cohen, 2023; Rocha, 2023). Advocates for reproductive justice anticipate that the rate of unsafe abortions being performed will rise, which will lead to increased morbidity and mortality (Bailey et al., 2022; Byron et al., 2022). History shows that abortion is “an intrinsic part of human behavior”, and unsafe abortions are a preventable pandemic (Rivera Rodriguez et al., 2022, 4). And as stated by Dr. Lisa Harris, “Emergency physicians and primary care physicians… should be prepared to provide 2 very different types of services: calm reassurance after unsupervised medication abortions – which evidence suggests are safe and effective – and critical lifesaving treatment after unsafe abortions” (Rubin et al., 2022, 2060).
According to the World Health Organization, unsafe abortions are a leading cause of maternal deaths worldwide (WHO, 2021). In addition, Ekerin et al. (2023) expressed concerns about the potential for the repeal of Roe v. Wade to have an unfavorable impact on reproductive health policies and abortion rights in sub-Saharan Africa. American legislative actions set examples for other countries and they control the disbursement of aid for health services abroad. For instance, in 2021 President Biden rescinded the Mexico City Policy, which prohibited the U.S. from sending global health aid to non-governmental organizations that discuss, make referrals for, or provide abortion-related services (Abrams, 2021; Biden, 2021).
As of May 2023, 14 states in the United States have banned abortions entirely or severely restricted them (Choi & Cole, 2023). And the proximity of many of these states will contribute to increased inaccessibility for some people, while making it impossible for others to travel the distance required to receive reproductive health services in another state. These states are Alabama, Arkansas, Idaho, Kentucky, Louisiana, Mississippi, Missouri, North Dakota, Oklahoma, South Dakota, Tennessee, Texas, West Virginia, and Wisconsin (Choi & Cole, 2023). Some states have bans for abortion based on the length of gestation, which have been considered by many advocates to be extreme, unreasonable, and not evidence based (NARAL, n.d.). Georgia’s current law establishes a limit of six weeks gestation, while Arizona, Florida, North Carolina, and Utah laws limit to between 15 to 20 weeks (The New York Times, 2023).
There are significant issues related to these parameters that have a disproportionately negative impact on people with disabilities. For instance, PWD experience a wide variety of limitations in accessing healthcare, compared to other minority groups – including physical, financial, educational, and transportation-related (Krahn et al., 2015; Lagu et al., 2015; Williamson et al., 2017). Detecting and confirming pregnancy can be delayed, minimizing options and time dedicated to decision-making (Linton, 2015). In addition, people with disabilities are more susceptible to being victims of rape and sexual assault and are more likely to receive inadequate or no sex education (Akande et al., 2020; Mailhot Amborski et al., 2022). People with disabilities are also more likely to be unemployed or underemployed, and to have co-occurring disorders that could present physical, psychological, and financial threats of hardship with the introduction of a pregnancy (Guerin et al., 2017; Mamun et al., 2018). With a history of eugenics and sterilization in the United States that targeted PWD, the stripping of reproductive autonomy persists into present times (Mossburg, 2021; Rajkumar, 2022). People with disabilities and chronic health conditions who do not wish to be pregnant or are less likely to have safe pregnancies are at greater risk of losing their lives, experiencing a diminished quality of life, facing discrimination as parents, and birthing children with adverse health outcomes (Mitra et al., 2015; Powell et al., 2022a).
As a result of the repeal of Roe v. Wade, people with disabilities who do not wish to become parents face some of the greatest levels of disturbance and fear. If they become pregnant and are not able to have abortions, then their lives and overall well-being are threatened. Symptoms of physical and mental health conditions may become exacerbated. Economic status is threatened with the presentation of children. And while those who admonish abortion may advocate for pregnancy and the subsequent termination of parental rights through adoption, children with biological parents with disabilities and children with disabilities experience high rates of discrimination and difficulties with family placement in the foster care system and within adoption agencies (Goldberg et al., 2020; Lightfoot & DeZelar, 2016). These children also have longer institutionalizations.
As previously stated, abortion rights are just one aspect of reproductive justice. The right to choose is multi-faceted and includes PWD who want to have children yet face obstacles within society. Ten percent of the children in the United States have a parent with a disability (Powell, 2018). There are 35 states in the U.S., plus the District of Columbia, that have current legislation indicating that a PWD can have their child taken away from them at any point – based solely on the diagnosis of a disability. This includes various types and combinations of disabilities, such as intellectual disabilities, psychiatric conditions, physical disabilities, and substance use disorder (National Research Center for Parents with Disabilities, 2022). These states are Alabama, Alaska, Arizona, Arkansas, California, Colorado, Georgia, Hawaii, Illinois, Iowa, Kansas, Kentucky, Louisiana, Maryland, Massachusetts, Mississippi, Missouri, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oklahoma, Oregon, Tennessee, Texas, Utah, Virginia, Washington, and Wisconsin. There are seven states that permit removals only based on substance use disorder, and no other type of disability or chronic health condition – Florida, Maine, Minnesota, Rhode Island, South Carolina, South Dakota, and West Virginia (National Research Center for Parents with Disabilities, 2022). According to the definition of disability in the ADA, substance use disorder qualifies as a disability (Dineen & Pendo, 2020). This would bring the total state count to 42.
Removals of children from parents with disabilities may take place as a result of assessments that were of poor quality or inaccessible to the parents in question; in other words, the appropriate accommodations were not provided (Powell et al., 2022b). In some cases, a child can even be taken from birth, upon expressed apprehension and discrimination from hospital staff (U.S. Dept. of Justice Civil Rights Division, 2020). As inconvenient as it would be for PWD to travel across state lines to access reproductive healthcare, it is also unfeasible for all individuals with disabilities to be able to live in states where the aforementioned laws and removal practices do not exist. Although the Rehabilitation Act of 1973 and the ADA, both federal laws that apply to every state in the union, supersede individual state laws on this topic, disregard and a lack of advocacy and knowledge of these laws inhibit the protections of parents with disabilities frequently (U.S. Dept. of Justice Civil Rights Division, 2020).
Reproductive justice also speaks to the fact that babies born of PWD can experience diminished existence within society, because of how they are viewed (Larrabee Sonderlund, 2021). There may be assumptions that PWD will have children who also have disabilities. Although this may be the case in some situations, this does not mean that the children will have a lesser quality of life nor that they will not be wanted by their parent(s). And although this raises ethical questions, certain individuals hope to have children born with the same health conditions that they have (e.g. Deaf people, people with dwarfism) (The Associated Press, 2006; Wallis, 2020). People may assume that these children will not be able to function as contributing members of society. From a reproductive justice perspective, these kinds of assumptions about and projections toward parents with disabilities, or PWD who wish to be parents, can marginalize them socially and politically, by making it difficult or impossible for them to parent. We infringe on the civil and disability rights of PWD when we eliminate fairness in this way.
The research on PWD seeking full reproductive rights is important, yet rare. The fight against the repeal of Roe v. Wade tends to focus on those who are able-bodied. Hearing the voices and stories of PWD is essential to gaining a wealth of perspectives on this issue and working toward full, fair reproductive rights for all people in the United States – and possibly around the world. This preliminary research was designed to endeavor to shrink this gap in the literature.
Methods
The researchers were a faculty member and a fourth-year independent study student in a Bachelor of Science degree program at a mid-Atlantic university. Over the course of the 2022 to 2023 academic year, they engaged in qualitative research through document analysis and narrative analysis that consisted of searches through publicly available, secondary data from internet sources. They specifically searched for existing narratives and interviews of only people with disabilities, who spoke on personal reproductive justice matters and experiences. Exploration involved keyword Google and Google Scholar searches to find American news articles, journal articles, interviews, blogs, and media recordings of individuals who fell within the inclusionary criteria. Keywords included search terms such as: disability or disabled; plus, parent(ing), reproductive justice, Roe v. Wade, and abortion. The results populated lists of sources that included disability or disabled, and at least one of the subsequent keywords listed. Due to the limited research that exists on this topic about persons with disabilities, and the use of a general internet search engine, no parameters for year of publication were used. As part of an independent study course, the researchers repeated this search on a bi-weekly basis over the course of the fall semester. This approach was taken as a result of the “breaking news” status of the research topic. Four to five new sources were selected after each search, based on analysis of titles (and descriptions when available), in order to encourage variations in narrations and the demographics of the narrators (i.e., gender, disability type, parents vs. non-parents, ethnicity, source type). The researchers reviewed each eligible source and analyzed narratives and quotes directly from PWD only, as many sources also included the voices of interviewers, rehabilitation professionals, and others who were not people with disabilities with reproductive justice experiences or parents with disabilities. The overarching question that guided the research was “What are the issues and concerns that people with disabilities face, in regard to their reproductive rights?” This question was inspired by the Supreme Court’s overturning of Roe v. Wade in June of 2022.
The researchers met bi-weekly via Zoom, in part to share findings, thoughts, questions, preliminary codes, and themes from the sources to work toward inter-rater reliability. The researchers continued searching for sources and discussing themes, with a presumptive goal in mind of 15–25 sources, until saturation in the coded themes was reached. In document analysis research, particularly involving topics that are understudied, it is not uncommon to reach saturation rather quickly. One document analysis study involving a topic with limited findings found saturation after analyzing 13 out of the 44 sources that they identified (Olivera et al., 2022). Within an in vivo coding approach, quotes from the narratives were extracted verbatim, via copy and paste or manual audio transcription, into a shared Microsoft Excel spreadsheet. Each researcher analyzed and initially coded every quote by specific themes independently. In collaboration, the themes were then consolidated, by grouping them into broader categories of themes. This created some overlap, as certain narratives contained information that fit into two or more themes. The themed data were then color-coded for a sense of theme frequency and hierarchy of significance, and to visually represent some of the overlap for the researchers. The amount of narration or words coded within a theme superseded the number of times that the theme was coded in a particular narration. In other words, a theme could be more prevalent because it appeared more often, but less significant because fewer words were dedicated to it compared to other themes.
Results
Ultimately, source collection concluded with the inclusion of 23 internet sources, including blogs, news articles, webinars, and one documentary. The researchers did not encounter empirical research articles that used narrative inquiry to explore reproductive justice and parenting issues for people with disabilities in the United States. Each source included quotes from one or more people with disabilities, who spoke about their personal experiences with and perspectives on being a parent with a disability, wanting to be a parent with a disability, or not wanting to be a parent with a disability. In addition, their desires around parenting and reproductive rights were examined through the lens of reproductive justice principles. See Table 1 for information about the sources of the narratives. Each source contained quotes from one or more people with disabilities.
The following is a list of the coded themes that arose from the data, in the general order of their prevalence: Intersectionality, Advocacy, Legislation, Support Structure, Socioeconomic Status, Emotions, Ethics, and Adopting Children with Disabilities. The theme descriptions and sample narrative excerpts are listed below. Although several of the following excerpts fit under multiple themes in the process of coding, those duplications will not be presented in the examples.
The predominant theme of intersectionality encompassed the discrimination that a narrator’s self-identification within multiple minoritized groups presented – such as having a disability plus being female, or having ethnic minority, LGBTQ, or immigrant statuses. For instance, one parent expressed that queer parenting with a disability and the related issues are not often addressed in RJ discussions (Brandeis University, 2021). Also, having multiple disabilities can be a form of intersectionality, because different disabilities have different levels of visibility, stigma, or accommodation needs. And, a person can progress in their adjustment to different disabilities at varying paces. Overall, these overlapping identities or multiple losses of functioning resulted in greater hardships related to discrimination in social and medical settings, and in their quests for reproductive justice. Earl Allen expressed that while his hearing loss impacted his ability to easily communicate with his daughter, the fact that he was Black had caused him greater hardship in his life than his disability had (Brandeis University, 2022a). Patrick Cokley, a Black, male parent with a visual impairment, expressed his anger with being asked his education level by a doctor, before the doctor decided to share medical information with him (Brandeis University, 2022b). The following excerpts provide additional examples of this theme.
As a woman with a disability… I didn’t know that it would actually be possible for me to have a biological child just because I didn’t see other parents with disabilities, I didn’t see other women like me have children… – Kara (Cochran, 2015, 2:37).
I feared that the visible effects of my disability, combined with stress in an environment that was not designed with the needs of someone like me in mind, I am unable to walk and my motor skills aren’t the greatest, would give staff the wrong impression – Kristie (Brandeis University, 2022b, 7:05).
If I contracted COVID and had to go into the hospital, would the doctors find my life as a triple amputee worth living? Would they know that I am the mother of two young children and that I matter to them? That I’m a wife, a daughter? – Erin (Andrews, 2021a).
The following theme of advocacy indicated instances where PWD expressed the need for efforts toward the empowerment of PWD in their journeys toward expanded reproductive justice. Advocacy activity and ideas came from PWD themselves, their family members, and from allies. Luanjiao Aggie Hu, a mother who is an immigrant with a disability, shared: “Soon after I knew of my pregnancy, I proactively sought information from my prosthetist. I disclosed my disability (which can be non-apparent at times) to my healthcare providers and asked questions to better prepare myself” (Hu, 2022). A family with visible disabilities experienced stares while walking through the park, but their son proudly spoke up to announce to onlookers that those people were his parents (Cochran, 2015). Children can change perceptions about parents with disabilities and were encouraged by parents to share their stories as well (Brandeis University, 2020). Below are additional quotes within this theme.
Another thing is that you need to speak to us like you would any other parent. We’re human beings and I think that in our society we have this way of talking to disabled people, almost like we’re a different species sometimes… – Dominick (Brandeis University, 2021, 43:26).
Dominick also expressed the importance of not making assumptions about PWD or parents with disabilities. Interacting with them and speaking with them is the best way to learn and know about them.
We ended up doing a lot of storytelling, bringing parents with intellectual disabilities who are successful with parenting, parents with mental illness that are successful with parenting, and really doing storytelling. One family actually brought all of her five kids to show, to show during the hearing how successful they are doing and that she’s a great parent. And she just happens to have a disability – Kimberly (Brandeis University, 2020, 26:37).
Legislation is the next theme. References to specific laws, rights under the law, or the need to amend existing legislation were captured by this theme. The Americans with Disabilities Act and Roe v. Wade were mentioned the most. Concerns arose about differences in abortion laws from state to state moving forward, as well as current laws in certain states that allow children to be taken away from parents with disabilities. A lack of accessible parking during family outings and trips, and limited access to accessible housing units, were also mentioned. Dominick Evans lamented the unfairness of his inability to marry his partner and mother of his son due to fears around the subsequent loss of much needed home care benefits (Brandeis University, 2021). Elizabeth Clark, a single mother with a disability, mentioned that “Subsidized wheelchair accessible units are as common as a buried treasure. Just because you qualify doesn’t mean you will get a unit” (Clark, 2020). Additional examples of these statements from the narrators are below.
… Many states established legislation allowing for the forced sterilization of disabled people. In a broad and discriminatory ruling written by justice Oliver Wendell Holmes, the Supreme Court affirmed forced sterilization statutes in an 8–1 vote in 1927. Carrie Buck, the complainant in that case, Buck v. Bell, contested the necessity of her forcible sterilization. She had been brought in as a servant by a family, whose relative had sexually assaulted her, and they had labeled her as ‘feeble-minded.’ Justice Holmes wrote the majority opinion for the court: ‘It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…’. To this day, the Buck v. Bell decision has never been overturned – Red (Rosenberg, 2022).
Even right now as we speak, the Ohio Code states that a child can be removed from the custody of parents due to… physical disability, substance abuse, or psychiatric disability… And so wouldn’t need to be any due cause, wouldn’t need to be any allegations, we wouldn’t have the same rights or protections that, that other parents have. I mean that’s a terrifying thought for any parent… – Kara (Cochran, 2015, 10:27).
The next theme that arose was support structure. This theme was illustrative of the importance of family, friends, community members, faith, and other potential sources of strength and reinforcement (e.g., emotional, physical, financial, spiritual) in the reproductive justice experiences of people with disabilities. These people have assisted with functional needs, activities of daily living, and/or childcare to support overall quality of life of parents with disabilities. An important point that was raised by a father with a disability was the infrequency with which discussion is had and credit is given to families with generations of disabilities (Brandeis University, 2021). A culture of disability is created over decades, which consists of habits, rituals, best practices, social capital, and an internal “normalcy” that likely does not exist in many of their other sociocultural spaces. CODA, or child of Deaf adults, is a commonly used acronym in Deaf culture that fortifies this point. For some, religion arose as either a source of support or a symbol of a lack of support. Pop star Britney Spears, who has been open about an unnamed mental health disorder, shared in a court testimony about her lack of support from God when she stated “God would not allow that to happen to me if a God existed. I don’t believe in God anymore because of the way my family and children have treated me” (Ramsden, 2022). Additional expressions of the significance of a support structure are quoted below.
Actively seeking support from different communities and peers has been empowering. For example, I have joined multiple WeChat-based online immigrant communities of Mandarin-speaking mothers (including expectant mothers) in the U.S. Some of these communities are location-specific while others include members across the U.S. – Luanjiao (Hu, 2022).
… we live with my mother-in-law… she’s been really great in helping with a lot of things as well. And my girlfriend’s brother, we help with his son some so, the parenting continues, it very much is a village for us – Dominick (Brandeis University, 2021, 25:52).
Social support for parents with disabilities also comes from other parents with disabilities. Parents shared that there is a way to do essentially anything (e.g., spoon feeding, bathing, changing diapers) as a parent with a disability, once other parents with disabilities are sought out for input and the sharing of techniques (Brandeis University, 2019). Melissa Riccobono, a wife and mother within a blind family, shared that everyone benefits from having a village to help raise their family – disabled or not (Brandeis University, 2019).
The following theme was socioeconomic status. Some PWD experienced underemployment and others experienced professional and financial success. Barriers to financial freedom impacted access to quality healthcare, treatment, and rehabilitation. Issues related to affordable, accessible housing as an aspect of parenting were also presented. Katie O’Connell, a woman with a disability who had chosen not to have children, stated, “It means that I can continue to afford my medications and not worry about how the money I spend on those impacts my family” (O’Connell, 2016). The narrative excerpts that follow are also indicative of this theme.
As an expectant mother with a physical disability, I understand my privilege in having a full-time job and supportive spouse, in having acquired skills to do research for information I may need and achieving the social mobility that transformed a once rural village girl in China into a worldly educated woman with a PhD degree – Luanjiao (Hu, 2022).
If I am not able to have an abortion [and] if I accidentally get pregnant, that could have significant impacts to my health. That’s a huge concern for me, as an individual who is continuing to focus on my career and as a person who wants to have a choice in the matter – Mia (Rajkumar, 2022).
On the way out, we let the kids get their faces painted. Immediately my son regretted his choice to let the artist free-draw a koala. Admittedly, he did not look great. My daughter didn’t help the situation. She complained on the way out that the other face painting place had better choices than the one we went to. SIGH. I felt frustrated the kids were complaining when they are so privileged – Erin (Andrews, 2022).
The theme of emotions captured expressions of feelings by the narrators that were directly related to their reproductive justice experiences and parenting with disabilities. Sentiments and reactions to legislation, discrimination, the joys of parenting, insecurities about parenting, anger, and guilt were some examples of recurring emotions in the narratives that were explored. Dylan Ward (2020), a parent with hearing loss, stated “I wouldn’t know if he was crying in another room. I’m tense and worried when he goes outside to play, constantly peeking out the windows just to be sure he’s okay.” Jessie Lorenz, a mother with a visual impairment, made the statement “You know if you ever wonder what motivates somebody in these types of situations, it’s pretty easy. It’s your kid, it’s an innate thing to fight for your kid” (Chakraborty & Putzel, 2015). Below are additional examples from this theme.
I worry constantly that I will miss incredible moments in the lives of the children I don’t even have… and most importantly, I can’t fathom the regret and pain I would feel if I had a biological child and passed migraines on to them – Katie (O’Connell, 2016).
It frightens me to think that as we swing further to the right, we can continue to revisit cases that were already decided, first of all, but second of all, that have changed people’s lives, although not enough lives. And simply because a group of people who were anointed with this power decided it’s OK and can turn around years of civil rights that disabled people still aren’t done fighting for – Emily (Rajkumar, 2022).
My son is 22 years old. He is used to having a disabled mom. I do feel guilty about the fact that when he was sick at school, I couldn’t pick him up to drive him home. That’s why I pushed him so hard to get his own license – Lynne (McCormick, 2022).
Sometimes, I transferred and had no trouble, but other times, if the ride was fast or jerked around, they wouldn’t let me ride since I don’t have any (even partial) lower extremities. This was frustrating mostly because often I wouldn’t be told this until I had already waited in line, and the worst was after we waited and then they told me I couldn’t ride, and then that my two young kids couldn’t either because they weren’t old enough to ride it without me – Erin (Andrews, 2021b).
Ohio is one of 35 states in which a child can be removed from a parent’s custody due to the parent’s disability status alone. As I watch my children play, it’s almost too terrifying to consider the potential impact of such discrimination. I feel the fiery need for change that I imagine the advocates for ADA felt decades ago. My American Dream won’t be complete until I can enjoy it without the concern that the ones I love most could be taken from me for no other reason than the way I was born – Kara (Ayers, 2015).
The seventh theme of ethics came about as a way to characterize ethical misconduct and violations on the part of medical professionals, social services staff, and other health and education professionals, as expressed by the narrators. For the purposes of this research, ethical treatment refers to the normative ethical principles commonly used in social science research: nonmaleficence, beneficence, autonomy, fidelity, and justice (Kitchener & Kitchener, 2009). In the realm of parenting with disabilities, this theme represented expressed examples of harm, marginalization and bias, lack of disability awareness and knowledge of disability culture, and abuses of power. Laura Rena, a mother with a traumatic brain injury, made light of an experience she had after arriving later than expected to pick up her child from school, stating, “Because of my speech problems and occasional failure to grasp information quickly, along with other nonsensical reasons, the nurse decided it was necessary to call CPS…” (referring to the state Child Protective Services agency) (Rena, 2022). Kristie Lewis, a mother with multiple disabilities, shed tears as she made every effort to convince social workers of her competency as a mother, mentioning her degree in early development, the fact that she had an older child already, and the reality that the hospital that she was being assessed in was a poor substitute for the comfort of her familiar and accessible home (Brandeis University, 2022b). Based on these examples, and the ones that follow, an argument can be made for the violation of all five ethical principles in our research findings.
However, I reflect back on it now and realize how vastly unsupported I was in contrast to other non-disabled women at the clinic. My abortion was viewed as uncomplicated and unemotional in comparison to others. I felt like I didn’t matter—that my choice wasn’t just as difficult as the other women around me. No kind words from the nurses, no checking in to see how I was coping. Nothing. Silence – Nicole (Lee, 2019).
They were not comfortable giving me an abortion because I had a disability. [My] paralysis scared them. I don’t know why. The disability just freaked them out. They said I would have to go to a doctor and have it done in a hospital, so I had to go through health insurance – Robin (Rajkumar, 2022).
I want to be able to get married and have a baby. I was told right now on the conservatorship. I’m not able to get married or have a baby, I have a [IUD] inside of myself right now so I don’t get pregnant. I wanted to take the [IUD] out so I could start trying to have another baby. But this so-called team won’t let me go to the doctor to take it out because they don’t want me to have any children, any more children. Basically, this conservatorship is doing me way more harm than good. I deserve to have a life. I’ve worked my whole life – Britney (Mossburg, 2021).
The final theme of adopting children with disabilities captured the phenomenon of PWD feeling inclined to or being expected to adopt children who also have disabilities. Special circumstances in certain countries, around people with disabilities adopting internationally, and the advantages of PWD adopting children with disabilities also arose. Kara Ayers, a mother with osteogenesis imperfecta, explained, “We knew that we wanted to adopt a child with a disability because we knew we could give them a life and hopefully be models for them about embracing your disability and developing pride in it” (Cochran, 2015, 3:19). An additional excerpt from the narratives is below, explaining a mother’s challenging journey toward adopting a child with fetal alcohol syndrome. Beforehand, she and her husband had experienced discrimination when attempting infertility treatments, surrogacy, and also attempting to make appointments with fertility doctors who would not agree to see her.
We decided to go ahead and start trying to adopt. And when we went to our state’s child welfare agency, we did try to adopt, and one of the first meetings that we had they told me and my husband that I was unable to adopt because of my physical disability. And it wasn’t a policy within the Department of Social Services, it was more of the attitude. But later on I did realize that it was actually in our law, our state law that they could deny the right to adopt, they could deny the right to foster, and they could actually remove a child on the basis of disability… As a disability rights advocate, they did not know who they were messing with. But I did, I knew my rights under the Americans with Disabilities Act and the Rehab Act and it was a lot of education but we did end up adopting and he’s now 10. We got him when he was 6 months old – Kimberly (Brandeis, 2020, 13:45).
Discussion
Revisiting the initial question of “What are the issues and concerns that people with disabilities face, in regard to their reproductive rights?” and reflecting on the narratives, our research has elucidated eight themes that allow for unique insights into an under-researched issue. Bringing attention to these narratives is a way to support the “Nothing about us without us” mantra that has been adopted by disability rights activists and articulated in disability justice-focused spaces. Yet further research is needed to answer this important research question more thoroughly. How the overturning of Roe v. Wade has impacted reproductive health experiences across the U.S. is still evolving from state to state. At the time of this research, there were limited resources in the literature to answer this question from first-person perspectives, which presents a research limitation. This is likely based on the relatively recent turn of events, regarding the research commencing just a few months after the repeal of Roe v. Wade. While two of the print sources referenced the Dobbs v. Women’s Health Organization decision, most spoke more generally about reproductive justice and the impact of previous legislation on the RJ movement among people with disabilities.
Implications for Treatment and Practice
The unethical treatment that people with disabilities have encountered in professional spaces should be explored further for the purposes of improved service provision and professional competence. Medical professionals are expected to be some of the most knowledgeable individuals when it comes to the functioning of people with disabilities and chronic health conditions. They are also expected to be advocates, yet narrations of people with disabilities have shown otherwise in some cases. Medical professionals may feel ill-equipped to provide reproductive care and treatment to PWD, due to a lack of comfort or clinical experience. They also carry implicit and sometimes overt bias against PWD being capable of being good parents.
Cesarean section rates among PWD are higher than those without disabilities, as are the rates of possible post-partum complications (e.g., post-partum infection, hemorrhage, severe maternal morbidity). Some PWD are on medication that they cannot live without, but that they also cannot take while pregnant. Taking these medications while pregnant could risk fetal abnormalities, fetal death, and morbidity or mortality of the mother. On the other end of the spectrum, if the PWD must remain pregnant without their medication, they may face death and severe illness as a direct result of the exacerbation of the symptoms of their health condition(s).
It must be considered that with the overturning of Roe v. Wade, care for those with unwanted pregnancies that cannot be terminated will be unfairly determined by the laws of the state that they live in and/or their own socioeconomic means. These concerns bring the issues of “wrongful life” and “wrongful birth” to the forefront of RJ discussions and further issues of ethics and legality. Wrongful life encompasses actions “brought by or on behalf of a child against the mother or other people, claiming that he or she has to endure a not-worth-living existence” and wrongful birth involves actions “brought by the mother or parents against the physician for being burdened with an unwanted, often disabled child, which could have been avoided” (Frati et al., 2017, 338).
Lastly, post-secondary and continuing education on the reproductive health of PWD, health and disability law (state and federal), disability history, applied ethics, advocacy, disability culture, assistive technology and reasonable accommodations, and cultural humility are all salient areas on which to focus. Child welfare workers, occupational therapists, social workers, nurses, physicians, and early intervention specialists are some of the best disciplines to include. Federal child welfare laws promote biological family reunification as the primary goal of services involving removals from the home (U.S. Department of Health and Human Services, n.d.). The Fair Housing Act in the United States is supposed to protect people from discrimination, based on several categories that include disability, in the processes of renting or buying a home. Yet many people with disabilities, including parents in the narratives studied, suffer long waiting lists and lack of affordability as they wait for accessible homes to be available. And the ADA supersedes any state legislation that discriminates against parents solely based on their disability statuses. So why are some children so easily taken from their parents, based on “professional” presumption and without any evidence of abuse or neglect?
Implications for Future Research
A recommendation for future research would be engagement into empirical research, which could include direct interviews with people with disabilities about reproductive justice. The analysis of publicly available narratives inherently presents limitations that the collection of primary data does not. Yet in this case, secondary data provided key insights. Britney Spears presented a unique example in this study of the power of celebrity. Members of minoritized groups can simultaneously benefit from privilege. Her fame, riches, popularity, and the adoration that she receives from fans all contributed to the popularity around her plight for reproductive justice and the success that she ultimately experienced in court (the ending of her conservatorship). Exploration into the existing stories of celebrities in similar situations can help bring attention to this important issue and increase its propensity to “go viral” (e.g., #FreeBritney).
It is also likely that future research will present more perspectives that include the overturning of Roe v. Wade as a natural consequence of the passage of time. Additional exploration of secondary data within social media accounts, podcasts, and other sources of casual media of people with disabilities who speak directly and possibly more frequently on reproductive justice issues could be helpful.
Parents with disabilities recommended that interviews with their children are of paramount importance. In essence, it is the children who are the main concern when parents with disabilities experience revocation of parental rights and discrimination. Assumptions about the quality of life of children with parents who have disabilities, as well as best practices for supporting children and their parents, needs to be evidenced. As all parents face difficulties when raising children, the typical consensus is that it’s worth it. Kara Ayers expressed that the same is true for parents with disabilities, and that the difficult parts are overridden by the rewarding parts (Cochran, 2015). A unique finding from our research did not involve a parent with a disability, but a non-disabled parent with a child with a disability. Sara Gelser, a politician from Oregon, shared about the discrimination that she experienced in an attempt to adopt another child. There were expressed concerns from the agency about an adopted child potentially having a sibling with a disability (Brandeis, 2020). Future inquiry should include perspectives from assented children; interviews with family members of multiple generations; consideration of cultures and their influences on disability perspectives; unique needs of immigrant and LGBTQ families; perspectives of fathers with disabilities; trauma-informed approaches; professional and bioethics; and advocacy measures particular to the state of residence – using individual interviews and focus groups.
Conclusion
People with disabilities need reproductive freedom to be parents and to avoid being parents. People with disabilities need reproductive freedom to avoid having children with disabilities and to be able to have a child regardless of the child’s disability status. Just like able-bodied individuals, these reasons for reproductive freedom are personal, private, and vary across people and families. And the variety of these variables demands freedom of choice for everyone.
The reproductive justice framework provides advocates, researchers, health and rehabilitation professionals, and legislators with a proficient tool with which to reflect on and analyze the unique reproductive health perspectives and experiences of people with disabilities, the world’s most marginalized group. The high prevalence of intersectionality-themed narratives supports the relevance of the theory and the complexity of the issue. Future participatory, person-centered research that highlights the historically suppressed voices of PWD will invaluably contribute to child welfare, mental health, physical health, quality of life, treatment quality, and the elevation of human rights and dignity of people with disabilities in the United States.