State of Change



In 1927, Carrie Buck, at the time just 21 years old, was sterilized against her will. Her right to parent her daughter Vivian was terminated, and the little girl was taken from her mother and died just five years later. 

Why? Because Carrie Buck had been determined to be "feeble-minded." She was the first person to be sterilized under legislation modeled by US eugenicist Dr. Harry Laughlin, who contended unequivocally that the "basis of designation for sterilization is inferior potential parenthood." She would not be the last to endure the life-altering effects of Laughlin's legislation. The Supreme Court upheld the constitutionality of the state of Virginia's sterilization of Carrie Buck in the case Buck v. Bell. Over the course of the twentieth century, over 60,000 American citizens would undergo forced sterilization, many poor and of color,1 some as young as 10 years old.2

In 2018, not quite 100 years after Carrie Buck's sterilization, another disabled woman gave birth to another baby girl. The woman was Illinois senator and double-amputee Tammy Duckworth, and the baby, Maile Pearl Bowlsbey, was the first to be born to a sitting US senator. Senator Duckworth had access to fertility specialists and a supportive family.3 Her fellow senators publicly congratulated her and organized a baby shower; the media and public hailed her as a trailblazer. On the surface, her experience as a disabled mother could not have been more different from Carrie Buck's.

Yet while reading Buck's and Duckworth's stories side by side might seem to suggest a narrative of progress, even triumph, many twenty-first-century individuals with disabilities may feel their experiences of parenthood have been less akin to Duckworth's than to Buck's. In 2018, the notion of "inferior potential parenthood" still undergirds US family and child welfare law, serving as the justification for 33 state laws that allow for the severing of the constitutionally-protected parent-child relationship because of a parent's status as disabled.4

Parents with disabilities are suffering under these laws, as are their children. According to the National Council on Disability's landmark 2012 report "Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and their Children," parents with psychiatric disabilities are believed to have their parental rights terminated 70-80 percent of the time, while it is estimated that 40-60 percent of those with intellectual disabilities lose their children.5 The deaf, blind, and physically disabled communities report elevated child welfare involvement and fearfulness thereof as well.6 A study in Minnesota found that residents who receive special education services as children are three times more likely than their non-disabled counterparts to become involved in child welfare cases as adults.7

In 2017 the results were published of the only study since 1991 to determine what portion of the child welfare parent population is comprised of parents with disabilities. In all three of the child welfare and dependency court systems chosen— Los Angeles, CA, Hennepin County, MN, and El Paso, TX—the findings were astounding. In LA and El Paso where no formal screening is conducted for parental disability, the case filings and materials still revealed a parental disability rate of 37 percent and 30 percent, respectively. And in Hennepin County, where a pilot program had allowed parental assessment for disability to be conducted on each parent entering the system, that rate jumped to 67.6 percent. Sadly, these numbers are close to those found decades earlier by Taylor, et al, in the US and Llewellyn, et al, and Booth & Booth in Australia and the UK.8

Little if any chance of remedy exists when parents with disabilities lose their children in the dependency court system, especially, where a termination of parental rights is like a civil death penalty. For instance, whereas at least one study has shown a meager appellate success rate of 12 percent in dependency cases, another has shown that the success rate for parents with intellectual disabilities was only 2.3 percent.9 The pseudo-scientific reliance on IQ as a predictor of parenting capacity may play a role in these disparate rates.

Further, while the mere fact of having a disability is listed in many state laws alongside such acts as abuse, neglect, and abandonment, the termination of a disabled parent's rights need not coincide with any of these factors. In 2010, Erika Johnson, a blind mother living in Missouri with her blind partner, had her newborn daughter removed from her custody and placed in foster care for 57 days after requesting breastfeeding support from hospital staff.10 In 2018, Amy Fabbrini and Eric Ziegler, a couple with intellectual disabilities living in Oregon, regained custody of their two young sons after legal proceedings that lasted over four years. As in the case of Johnson, no abuse or neglect had been alleged, and the evidence in favor of terminating Fabbrini and Ziegler's parental rights included such negligible offenses as forgetting to apply sunscreen and providing unhealthy snacks.11

In short, disabled parents and their children are routinely threatened with separation on no grounds more compelling than disability-related bias and speculation. And while termination of parental rights may be the most extreme consequence of such bias and speculation, other aspects of parenting are affected, too. Disabled individuals who seek to retain full or partial custody of their children in divorce proceedings, who attempt to become foster or adoptive parents, or who wish to access assisted reproductive technologies also face significant legal barriers.12

For years, in a variety of ways, several UC Berkeley faculty members directly affiliated or otherwise associated with the Haas Institute Disability Studies research cluster have done research on subjects related to this issue. Susan Schweik's work with Ella Callow on legislative discrimination has emerged out of a broader cluster of work that pertains to disability and parenting and/or more broadly to the legacies and ongoing dynamics of eugenics. Disability Studies chair Karen Nakamura has written about eugenic sterilization and other forms of controlling the reproductive sexuality of disabled people in Japan13 and traces the creation of the 1948 Japanese Eugenic Protection Law to its Nazi German precursors, which themselves were inspired by American eugenics laws, one of the earliest being a state law passed in Indiana in 1907. 

Although the Eugenic Protection Law in Japan changed its name in 1996 to the Mother's Body Protection Law and disabled sterilization was nominally removed, there continue to be deeply felt effects of decades of eugenic practices on disabled and other communities in Japan. Nakamura's most recent research has been exploring the effect of the Eugenic Protection Law and its successors on transsexual and transgender communities, especially in terms of the continued mandatory eugenic sterilization of trans people.

Other cluster faculty have been equally active. Charis Thomson works, as she puts it, "on the policy implications of including disability in a comprehensive switch from reproductive rights to reproductive justice, the policy implications of the rise of selecting technologies such as genome editing and the need to empanel those with disabilities in decision-making and assessment roles on social trends in deselection, and on moving the emphasis away from the prenatal scene, where people with disabilities keep having to account for the value of their very existence, to a more life-long, situated perspective that includes structural inequality among the causes of many preventable forms of excess morbidity and mortality and care and access shortages."14 Marsha Saxton's ongoing work on reproductive justice also now primarily involves genetic screening, selective abortion, wrongful life lawsuits, and other issues of reproductive technology. Her overview on these issues has been a staple of a standard disability studies textbook through multiple printings,15 and in earlier years her scholarly and activist work included direct focus on the discouragement of reproduction by disabled people and the devaluation of disabled parents.16 Jane Mauldon co-authored a policy brief in 2010 on "CALWORKS Children with Disabled Parents on SSI," exploring strategies for strengthening these families by "providing a broader system of support for all families."17 She is currently working on a demographic and policy-focused analysis of families in which children, caregiver(s), or both are disabled. 

This policy brief will provide an overview of current legislation that discriminates against parents with disabilities. It will also consider non-discriminatory legislation that has been enacted or is currently being enacted at the state level, with the hope of encouraging more states—eventually all states—to adopt similar legislation. It is our strong belief that such legislative changes are both needed and deserved by the at least 4.1 million disabled parents currently raising children under the age of 18 in the US as well as by the roughly 6.1 million children who rely on them for care.18

As Susan Schweik and Ella Callow note in their not-yetpublished paper "Dismantling Harry Laughlin," "Parenting is to the disability movement what marriage was for the LGBTQ movement—the centerpiece... and the most public symbol of equality."19 What is at stake, they remind us, is "the veracity of our national commitment to disability human rights—the real integration of people with disabilities into the human family."20

  • 1. Painter, 2011; Gallagher, 1999
  • 2. Reilly, 1991
  • 3. Chicago Sun-Times, 2018
  • 4. Schweik and Callow, 2014
  • 5. National Council on Disability, 2012
  • 6. National Council on Disability, 2012
  • 7. Singh et al, 2013
  • 8. Callow & Jacob, 2017
  • 9. Callow et al, 2016
  • 10. ABC News, 2010
  • 11. Oregon Live, 2018
  • 12. National Council on Disability, 2012
  • 13. Nakamura, 2014, 2013, 2006
  • 14. Thomson, 2017, 2016, 2015
  • 15. Saxton, 2016
  • 16. Saxton, 1984
  • 17. Mauldon. Spieglman and Sadar, 2010
  • 18. Kaye, 2011
  • 19. Schweik and Callow, 2014, quoting Hsu, 2006
  • 20. Schweik and Callow, 2014