May 12, 2016
PhD student Robyn Powell speaks at the White House
Robyn Powell, a PhD student in the Children, Youth and Families concentration, spoke at the White House Forum on the Civil Rights of Parents with Disabilities on May 5, 2016. She joined the forum on behalf of the Disabled Parenting Project, an an online community for parents and prospective parents with disabilities which she co-founded in early 2016. Footage from the event are archived on the White House website and the video is embedded below (Powell's remarks begin at approximately 19:40). The full transcript of Powell's remarks follows.
"Thank you to the White House and the National Council on Disability for holding this important event and for inviting the Disabled Parenting Project to participate. For those who don’t know, the Disabled Parenting Project is an online community by and for parents and prospective parents with disabilities. I encourage folks to check us out at www.disabledparenting.com. I also want to thank the Reeve Foundation for developing this toolkit. This toolkit will be an invaluable resource for the entire disability community and we owe the Reeve Foundation tremendous gratitude for spearheading this effort.
I’d like to begin by sharing a brief personal story. Earlier this week, I published an article on the website XOJane about my desire to someday be a mother and the negative reactions I have encountered from doctors. Unfortunately, I broke my own personal rule and read some of the comments (something you should never do!). Many of the comments were truly awful and illustrate the biases people with disabilities experience when choosing to raise families. For instance, one commentator said “This particular woman clearly is highly intelligent so there is the physical aspect to take into account and I do not just mean bringing the fetus to term and through labor alive, I mean the everyday grind of taking care of an infant. If she and her partner both have chronic pain conditions or some type of physical disability, the challenges of raising a small child are huge. Can you pay for a 24/7 nurse to do the tough physical work of child rearing? Have you spent a significant amount of time with small children testing how your body does taking care of them? These are just real world questions to think about outside of whatever disability activist philosophy you have. When it comes down to it can you feed, lift, bath, carry, and chase after a child? If not, you probably shouldn't have or adopt children in my personal estimation.” Ignorant remarks such as this, and the many others that were made, depict the significant biases we face. Biases that are also often harbored by child welfare workers, judges, doctors, family members, neighbors, etc.
Although the right to raise a family has long been recognized one of the nation’s most fundamental rights, this right has not been enjoyed by people with disabilities. Indeed, parents with disabilities are the only distinct community of Americans who must struggle to retain – and at times, gain – custody of their children. Studies have found that parents with psychiatric or intellectual disabilities face removal of their children at rates as high as 80%. Parents who are Deaf, blind, or have physical disabilities also experience extremely high rates of child removal and loss of parental rights. Parents with disabilities are more likely to lose custody of their children after divorce, resulting in many women with disabilities staying in bad – and sometimes, dangerous – marriages out of fear they will lose their children.
Of course this is not just about numbers but actual families who have been torn apart or not even given the chance to be formed due to stereotypes and discrimination.
For example, in 2010 a blind Missouri couple had their two-day-old daughter taken into custody by the state after the mother had difficulty breastfeeding (something most new mothers experience). In other words, their state took their daughter not because of allegations of abuse, but rather just a fear that the parents would be unable to care for their daughter. This couple had to fight for 57 days to regain custody of their child, meaning they lost nearly two months together.
In 2009 Kaney O’Neill, a veteran and quadriplegic mother, faced an unexpected battle when her former boyfriend filed for custody of their ten-week-old son, alleging that O’Neill was “not a fit and proper person” to care for their son and that her disability “greatly limits her ability to care for the minor, or even wake up if the minor is distressed.” O’Neill’s battle endured for a year and a half before both parties came to an agreement that gives the father visitation rights. While there was a happy ending, it is horrifying that courts allow someone to question a parent’s ability to have custody based solely on their disability.
There are also countless stories of people with disabilities who were prohibited from adopting or becoming foster parents as well as women with disabilities who were denied reproductive health care because physicians deemed them unfit to be parents.
We must come together as a community to end this discrimination.
Since the National Council on Disability issued the Rocking the Cradle report in September 2012, there has been significant movement on both the national and state level.
For instance, AdoptUs Kids, a project of the Administration for Children and Families at the Department of Health and Human Services, added resources for prospective foster and adoptive parents with disabilities to their website. They are also partnering with state agencies to provide technical assistance.
The Department of Justice and Department of Health and Human Services have partnered to ensure that state child welfare agencies are complying with their legal obligations and not discriminating against parents with disabilities and their children. In January 2015, they issued a letter of findings following an investigation concerning the Massachusetts Department of Children and Families. This case involved Sara Gordon, a mother with an intellectual disability who had her daughter removed in the hospital because the state of Massachusetts presumed she has unfit to raise her daughter. The reason? She had trouble feeding and diapering her newborn – something most new parents struggle with at first. Ultimately, two years, three months, and twelve days later this family was reunited. DOJ and HHS built off of their work in this case by issuing a Dear Colleague letter to all state child welfare agencies and courts. We urge DOJ and HHS to continue their enforcement activities for parents with disabilities.
Advocates across the country (such as Washington, Oregon, Tennessee, Maryland, South Carolina, and Massachusetts) have also worked tirelessly to get state legislation enacted that would prohibit discrimination against parents with disabilities.
A little more than 25 years ago, the ADA was passed with the goal of ensuring “equality of opportunity, full participation, independent living, and economic self-sufficiency.” While we are not quite there, we have had many successes. Today, we enjoy increased opportunities to further our education, live in our community, and secure employment. Nonetheless, we still are seen as unfit to parent. If something as fundamental as the right to raise children is not guaranteed for people with disabilities, significant cross-disability advocacy is certainly needed. I urge all of us to join efforts to remedy this!