Two years ago, Erika Johnson gave birth to her first child. When she had trouble breast-feeding, a nurse soothed her by saying that many mothers find nursing hard at first. Then the nurse called social services.
Johnson and her husband are both blind, which concerned the nurse and caused a social worker to put their baby Mikaela in foster care for 57 days. “It was sickening that they assumed because we’re blind we can’t take care of her,” says Johnson, who lives in Independence, Mo. “I was angry, upset, sad, frustrated. It was my first child.”
Johnson’s story is just one of many that humanize a 445-page report issued by the National Council on Disability about the myriad ways in which disabled parents encounter discrimination. Nearly 1 in 10 U.S. kids have a parent who is disabled, according to the Council. Of those parents, 4.1 million have children younger than 18. Yet there’s a cultural belief that parents with intellectual or physical disabilities don’t — or shouldn’t — raise kids.
Robyn Powell, an attorney at the Council, uses a power wheelchair because the arthrogryposis that affects her joints and muscles limits the use of her arms and legs. At 31, she doesn’t yet have kids. But she hopes she will one day. Yet multiple doctors, aware of her physical impairments, have suggested sterilization. “I have been offered a hysterectomy more times than I can count,” says Powell. “It’s like they’re doing me a favor. I say, I think I’m going to need my uterus. But society as a whole views people with disabilities as incapable of raising kids.”
New parenthood is hard for anyone, but Powell suspects that parents with disabilities — accustomed to adapting — may have an easier time than others with the adjustment. Yet the Council’s report — “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children” — notes that parents with disabilities face discrimination when it comes to child welfare, family law, access to fertility treatment and adoption.
In 1990, Congress passed the Americans with Disabilities Act (ADA) to protect those with disabilities, yet parents with disabilities continue to face legal quicksand everywhere. Two-thirds of state child welfare laws list some type of disability as grounds for removing a child from his home and allowing parental rights to be terminated. That’s a violation of the ADA, concludes the report. Still, parents with psychiatric or intellectual disabilities lose their children at a rate as high as 80%.
“Parents with disabilities continue to be the only distinct community that has to fight to retain — and sometimes gain — custody of their own children,” autism-rights activist Ari Ne’eman told the Associated Press.
Every state permits disability to be considered as a factor in deciding custody issues. In some cases, disease counts as disability; that was the experience of Alaina Giordano, a N.C. mom who had advanced breast cancer and believed she lost custody of her children to her estranged husband because of her illness. Giordano waged a social-media war to raise awareness of her plight before she died earlier this year:
She was fighting for the right to be with her children, but she was also fighting for the rights of sick mothers everywhere in similar situations. As Peter Kaufmann — her childhood friend who became her spokesman — wrote on her Facebook page: “She realized that she had become the voice for those who were in similar situations — with cancer, with custody battles, with insurmountable struggles. Because she faced her mortality on a regular basis she looked at her life as one that gave strength to those who were less fortunate than she — those whose stories did NOT get public attention…”
For Johnson, who regained custody of her daughter when she was two months old, being a capable parent means adapting to her sighted child’s needs. When Mikaela is sick, Johnson and her husband, Blake Sinnett, rely on a talking thermometer to gauge her temperature. They have labeled puzzle pieces in Braille so that they’re able to help Mikaela learn the names of the animals that make up the puzzle.
At 2 ½, Mikaela is well aware that her parents can’t see. Like them, she has adapted. Because Mikaela was taken away even before she was taken home, Johnson wasn’t able to breast-feed her, which felt like an additional loss on top of being pegged as an incompetent mother. As young as 9 months, Mikaela would guide her parents’ hands to a bottle to indicate she was hungry.
Such adaptation is what the Council says should be appreciated and supported. With wounded warriors coming home from the battlefield, the number of parents with disabilities is expected to grow. That just highlights the importance of figuring out how public and private agencies can do a better job of ensuring parents’ rights and supporting those who need help. “We need to shift the presumption that people with disabilities are unfit to raise families,” says Powell. “We need to assume they are capable and we need to support them.”