Like me, my late older sister Heidi started puberty early, when she was 11 years old. Unlike me, when she did, her doctor suggested to our mom that she be sterilized.
Why the difference?
Heidi was born with microcephaly and cerebral palsy. She had a hard time holding objects in her hands, she couldn’t sit up unaided and she could not walk. She also was born deaf and she communicated with us primarily through facial expressions, whines and chuckles because her hand muscles were usually too tight to use sign language. Her various physical disabilities made it difficult for us to know the extent of her cognitive abilities, but she very clearly had likes and dislikes, a mischievous streak and a heartwarming smile and chortle. From a young age, she was my best friend whom I nicknamed “Heiden.” I loved to play games with her, help her and just be together.
The doctor who recommended sterilization, a permanent procedure to block her fallopian tubes to make her menstrual periods lighter and prevent pregnancy, was not trying to be cruel. She cared deeply about Heidi and worried that her menstrual periods would be a lot for Heidi and for my parents, as her caregivers, to handle. But also, sexual violence is so prevalent for persons with disabilities, particularly those with cognitive disabilities, that the doctor feared it was only a matter of when for my sister. If she was sterilized, “at least” then she wouldn’t have an unwanted pregnancy as a result of rape.
Our mom disagreed with the doctor’s suggestion. Heidi died within the year from complications stemming from her disabilities and, to our knowledge, by then had thankfully never experienced sexual abuse.
I only learned about that sterilization conversation years later, when I was writing a paper on sexual assault and women with disabilities for a graduate school class. I felt sick by the implications of abuse when my mom told me. I still feel sick about it 12 years later. Who would sexually abuse my beloved sister? Who would take advantage of her inability to defend herself, to get away, to speak out?
Unfortunately, those people do exist. In a recent article, NPR reporter Joseph Shapiro said that unpublished federal crime data from the Justice Department found that “people with intellectual disabilities are sexually assaulted at a rate seven times higher than those without disabilities.”
A new study about sexual harassment and assault nationwide conducted by market research organization GfK and commissioned by my organization, Stop Street Harassment, found that 40 percent of women with any disabilities have experienced sexual assault in their lifetime and 69 percent have faced physically aggressive sexual harassment (like groping, stalking and flashing). This sexual assault rate is compared to 23 percent of women without disabilities (which is still an outrageous figure). The rate is also higher for men: 18 percent for those with disabilities versus 4 percent of men without disabilities.
Yet despite these high numbers, the experiences of people with disabilities have largely been left out of national conversations and initiatives against harassment like Me Too and Time’s Up. This could be because, as a country, we often do not see people with disabilities. We push them to the margins of society where it’s easier to forget their existence and their victimhood.
“We push people with disabilities to the margins of society where it’s easier to forget their existence and their victimhood.”
Sadly, as a society, we have a habit of isolating and ostracizing those whom we see as different. As Mark Weber, author of Disability Harassment, writes: “Isolation dehumanizes, and those who are not considered human are apt targets for mistreatment.” Historically, many nondisabled persons viewed people with disabilities as a family shame, a “freak show,” or an anomaly; as such, they locked them away in almshouses, institutions or even attics. Persons with various types of disabilities were even legislated out of sight.
Even today, with laws like the Americans with Disabilities Act that promote equal treatment, you may not have much interaction with someone who has a disability. At the simplest level, this lack of exposure means it’s not uncommon to look down on disabled people, to use “retarded” as a put-down or make jokes about “special buses” or special ed.
Persons with disabilities are rarely portrayed in popular culture, further limiting exposure to them. For instance, while 19 percent of Americans have a disability, in GLAAD’s analysis of the 2017-2018 primetime broadcast TV shows, only 1.8 percent of regular characters have a disability. As another example, an analysis by USC Annenberg School for Communication and Journalism of 900 popular films released in 2016-2017 found that only 2.7 percent of all speaking characters were depicted with a disability.
I saw firsthand how inclusion and exposure matter. Growing up, my family often stood out because Heidi went everywhere that we went. While I hated the stares from people who weren’t used to seeing someone like her, I appreciate how many of our relatives, neighbors, friends and strangers learned simple sign language for her or consciously made sure to say hi to her and include her. The same happened at her elementary school when her teacher introduced Heidi to other girls her age; once they grew used to her differences, they routinely surrounded her at recess to sign to her and help her drive her electric wheelchair. Our dad used to comment that she had “fans” wherever she went.
If our society did more to be inclusive of persons with disabilities, perhaps the abuse perpetrated by nondisabled people against them would decrease, and invasive and permanent procedures like sterilization would not need to be considered as a precaution to an unspeakable crime. People with disabilities deserve respect, protection and acceptance.
Holly Kearl is the founder of the nonprofit organization Stop Street Harassment and the author of three books about street harassment.