Editor’s Note: This piece is the second part of a CNN Opinion series, “What it’s like to be me,” which explores the personal struggles Americans face at a time of profound social change. Rebecca Cokley is a senior fellow at the Center for American Progress, where she works on disability policy. Formerly, she was the executive director of the National Council on Disability and served in the Obama administration in the Administration for Community Living and the Presidential Personnel Office, where she was responsible for outreach to diversity and minority organizations. The views expressed in this commentary are solely hers.
I was lying on the cold metal table in the operating room in the midst of giving birth to my second child, in what had been a totally normal and uneventful pregnancy, when the anesthesiologist assigned to my C-section suggested that my obstetrician might want to tie my tubes. He didn’t ask me. He didn’t even acknowledge that I was there, though I was in a ragged state of consciousness. He said, “While you’re down there, we are going to go ahead and tie her tubes, right?”
At a time when I was most vulnerable, a medical professional thought it was a good suggestion, an acceptable notion, to make an assumption with this level of this importance for me. My doctor, my husband, and I all responded unanimously: “No!”
As upsetting as that moment was, it was not at all surprising to be treated as less than fully human. Professionally, I work as an advocate for the disabled. But I also know from 39 years of life as a little person, situations like these are such a clear indication that we aren’t seen as whole people. No matter what we do, what we achieve, the nondisabled world will largely always see us as less than, as separate.
The delivery room wasn’t my first experience with ignorance around disability and family. It wasn’t always perfect for me growing up. My high school guidance counselor told me point blank, “Kids like you don’t go here, you go to the special school.” If it weren’t for the teachers, whom I loved, I easily could have fallen into a different path because of how that counselor treated me.
I think about that, as I prepare to give birth again in a few months, to a boy who may be of average size. If he is, his mother and two siblings may always be “different” in a way that he is not.
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When he comes, I’ll be having another C-section. Little people can only deliver that way, as our pelvic area is not large enough to deliver vaginally, so I’ve always had an anesthesiologist present for the entire procedure. General anesthesia is hard on those of us with dwarfism as well, because of how our faces are shaped and complexities in our airways, and spinal anesthesia, including epidurals, can also be hard depending on any spinal issues. For a long time the only option was putting us completely out, as was done with my mom during my delivery.
With my last delivery, I was already in a bad place with this anesthesiologist – who was in a position of medical authority (even though he wasn’t ultimately in control of my treatment) and somehow thought my right to have more children was his business. I had asked him to review the notes from my first C-section and my MRIs to make sure he felt confident he could do the job. But he failed, because the spinal block wore off halfway through the surgery and he had to help to determine alternate means of sedation – which resulted in him giving me a low level of general anesthesia to complete the procedure.
I don’t know for sure why he suggested I be sterilized, but I can only assume that he thought I should be medically prevented from having more kids because, like my children Jackson and Kaya, I was born with dwarfism. I’ve asked multiple nondisabled friends who have had the same anesthesiologist and none reported him making any remarks indicating he felt the same way about their right to bear children.
While I grew up in the Bay Area, I now live in Washington, D.C., with my husband and kids. Professionally and personally, being a little person is central to who I am, but it’s also one among many ways that I see and make sense of the world. For better and for worse, being different is hugely significant in my life, individually and with my family. And I think we should be more open with all kids about how being different can be a good thing, an important thing.
Part of the legacy of the landmark 1990 80% of people with dwarfism are the only person in their families with it).
Growing up with a disability
My parents met in 1970 at a convention of Little People of America, an organization founded by actor Billy Barty in 1957 to provide support and information to people with dwarfism and their families. There are chapters around the world, affiliates internationally, and annual conventions that bring together around 2,000 people in different cities every year.
My dad ran a Center for Independent Living for people with disabilities and my mom ran a disabled student center at a local community college, so I grew up in the Bay Area surrounded by people with all different types of disabilities.
I also grew up in an environment where expectations of me were set high, by my family and by a strong network of supporters and allies. My mom went back to school for her bachelor’s and master’s degrees when I was around 8 or 9, as a re-entry student at the College of San Mateo and the College of Notre Dame, respectively.
I was a typical presence with her on campus, sitting in the back taking notes along with the other students (I was always nerdy). I remember getting in long discussions with one of the professors, who was a nun, about Kevin Smith’s latest film, “Dogma,” and her asking me to write a paper on it while I was still in junior high school.
It took a long time for me to realize that the experiences I had growing up, becoming an adult, and starting my own family were not always the norm – and that the work of achieving acceptance for those with disabilities was far from over.
All my life I wanted to work in civil rights, and found myself thinking of being a civil rights lawyer from an early age. I think having parents who were so civically engaged was a key piece of this, as was growing up in the San Francisco Bay Area during the onset of the AIDS epidemic. I remember that in the early days when it was still stigmatized as the “gay cancer,” my parents and I attended so many funerals. And at so many of them we were the only people there, minus a friend or two.
I asked my mom why we had to go (my 6 year old brain was much more focused on getting to the mall to go ice skating at the time) and I remember my mom telling me, “We’re here because no one deserves to have no one stand for them. They’re no different from us. We are here for the reason that someday, if something like this happens to our community, we’d hope they would be here for us.”
And I think in so many ways, that comment, while in passing, became my true north.
‘Mom, I think I want to be a clown’
When I was 10, my dad passed away in his sleep after confronting health issues for years and using a wheelchair most of my life after a fall. Soon after, my mom took me to the Ringling Brothers circus. We were in the parking lot leaving the Cow Palace when I turned to my mom and said the seven words she had feared her entire life. “Mom, I think I want to be clown.” She slammed on the brakes so hard I thought my head would hit the dashboard. “What?” she asked.
“Yeah, I think I want to be a clown.” We rode home in silence. I didn’t realize at the time, but this was a huge crisis of faith for her. All I had ever talked about at that point was fighting injustice and here I was telling her I wanted to take on a role that focused on little people not being taken seriously.
I later learned that she broke down in tears with a group of fellow graduate students, telling them she had failed as a parent. A few weeks later, I told her I only wanted to be a clown because clowns traveled the world, and that I had returned to my senses and decided to be a civil rights attorney again. It was an important lesson in the importance of having high expectations and being flexible that would serve me repeatedly throughout my career and as a mom.
Because of my passion for civil rights, my parents introduced me at a young age to Paul Steven Miller, an up-and-coming attorney and little person who worked in Los Angeles. Miller went on to be the first little person to work in the White House, under President Clinton, and when he found out my love of reading, would routinely send me case briefs to read “for fun.”
My mom and dad thought it was important that I knew people like me doing the work I wanted to do. I got to return the favor in 2007, when I recruited my mentor Miller for the Barack Obama campaign and ended up following in his footsteps by taking a job at the White House in 2010.
Taking this path was important to me – and to my family as well.
When it came time to go to college, I started out at the same school where my mom had gone. I studied in London during my sophomore year of high school. It was an incredible experience. Not only for all the amazing things that London offered, but also because manners often trumped the notion of treating disabled people in public like a sideshow. I didn’t have to worry about tourists taking photos of me, or having “midget midget” shouted at me in a bar, as had happened to me in the United States.
Returning home, I accepted a full scholarship to the University of Santa Cruz, where I decided to go into political science and study with professors like Wendy Mink, Peter Euben, and Angela Davis.
My first two jobs after college really shaped my life. One was an internship with my local member of Congress, Rep. Tom Lantos, the only member of the House of Representatives who was a Holocaust survivor. He and his staff were hugely supportive of my passion for civil rights and it managed to keep my feet in the area of politics while I also worked at my second job – at Victoria’s Secret. I started as a part-time holiday hire and was quickly promoted to credit and bra specialist lead before becoming a co-manager.
You may wonder what politics and lingerie have in common. I always sum it up as, “You have to make someone want something they don’t need and want to pay too much for it.”
My boss at Victoria’s Secret had grown up next door to a family of little people who had offered her stability in a childhood that had little, so it was nice to not have to go into a job where I’d have to prove myself just as capable as a nondisabled person. I think being a person with a physical disability working at the most image conscious company in the world actually made me more approachable to a lot of customers and also made me want to help folks who may have felt nervous or uncomfortable in the store.
I think the funniest thing was how customers would describe me when checking out. They’d actively fumble their words and body around trying to describe me without saying I was a little person. “Ummmmm, the girl in the black suit.” (We all wore black suits). “Well, she’s petite.” (There were a number of us who were.) My sales associates were comfortable with me being a little person but the customers were very concerned about being rude or just not knowing what to say in general.
The experience did make me more conscious about my safety, because I had a few strange customers who would follow me around in the store or who would act like they were “fascinated” with me. One couple in particular went too far and made a point of repeatedly telling me, “We could pick you up and walk out with you. We’d take you home and make you a button in our mattress. No one could physically stop us.” I think as a little person you tend to get a heightened “spidey sense” because of how people treat you, and that experience definitely set mine off. But on the whole my customers were kind and thankful for my help.
Doing political and public policy work was still my dream, though, and in 2004, I moved to Washington to take a job working in education policy. A mentor of mine persuaded me to come and work for the National Collaborative on Workforce and Disability/Youth. I learned a ton working there, and it was there that I also met my amazing husband, Patrick. He says he noticed me right away – cautioning himself not to come off as creepy by “staring at the new girl.” I have no memory of this.
Building a family
Today, our family exists at multiple crossroads.
Patrick is average height and African-American. I’m a little person. Our two kids are both little people. My husband has a vision impairment, so I’m the driver in the family, but, usually, new average-height people we meet assume he’s the driver. Like many D.C. couples, we met at work.
When having our own children, it was interesting how our friends reacted to our news. Our LP (that’s how those of us in the community refer to “little people”) friends all automatically assumed the baby would be a little person; we see it as a marker of cultural pride. Our average height friends didn’t ask me about whether the baby would be LP or average height – they’d ask Patrick, and he would typically respond that he didn’t care either way.
I worked at the White House when I was pregnant and had our first child, Jackson. To him, it was routine to head back to the office with me after pickup so I could keep working. In Barack Obama’s White House, it never felt weird or out-of-place being the mother of African-American kids with disabilities who were on a first-name basis with senior White House officials. To quote the boss himself, “I believe that this country succeeds when everyone gets a fair shot, when everyone does their fair share, when everyone plays by the same rules.” And those are really the values that we stress as we’re raising Jackson and his younger sister, Kaya.
At age 6, Jackson’s awareness of the world is growing. One day, he came home from kindergarten and said, “Mom, you’re white, Dad’s black, and I’m peach.” His dad turned around and said “Peach? You’re black.” Jackson pointed to his arm, shook his head, and said “Peach!” This made us realize that we needed to discuss our kids and their heritage much more than we had been.
We’ve purposely stayed in the D.C. area because there is a thriving chapter of Little People of America here and I want my children to grow up with a strong tie to that community. It’s important for them to have friends who are other LPs, have teen and young adult LPs to look up to, and to know LP adults.
Since we’re raising children who also identify as African-American, it is imperative to Patrick and me that they have strong people in the black community to look up to and relate to. We are blessed with a cadre of aunties and uncles and cousins who are biological and chosen family members from my husband’s childhood, his time at Howard University, and our various circles of friends. As a white woman, I have to be aware that my daughter in particular is going to have questions that I can’t – and in some cases, shouldn’t – be the one to answer.
As a professional advocate, I’ve spent the last few years working on issues tied to police killings of African-Americans with disabilities. Unarmed people of color whose names you may know because their deaths involved the police – Eric Garner, Natasha McKinnon, Sandra Bland – were also all people with disabilities, many of whom disclosed their disabilities to law enforcement and still died.
Raising two African-American children with disabilities, I understand that some of the very qualities that endear them to people now – their curiosity, their feeling that they’ve never met a stranger, their trust in the world – could be the very same things that could potentially put them in danger. So we have to talk about these things, because while the bubble of our home provides safety and security, the outside world is a different place.
My children have grown up knowing chosen family members who have been assaulted by law enforcement. It broke my heart to have to talk to my son about this, but we also couldn’t keep it from him.
Parenthood and activism: our forms of protest in the world
When the anesthesiologist suggested that my doctor sterilize me, what I heard was someone with medical authority basically telling another person with medical authority that I shouldn’t be having any more children. I was certainly angry, but not surprised. Many of us in the disability community know this feeling all too well. Whether it’s forced sterilization, experimentation, eugenics, or treatments to keep us small and manageable, removing our right to control our bodies, our personhood, has been common practice by the “well-meaning” nondisabled public for centuries.
No amount of education, of mentors, or of amazingly supportive workplaces would have prepared me for this level of discrimination. Yet this is what many disabled people encounter as parents.
Under the law in dozens of states, children can be removed from their homes based solely on a parent’s disability. In my work as an advocate, I’ve spoken with a dyslexic mom who lost her kids when pharmacists thought she would misread instructions and overmedicate them, and a father who lost his kids when a ball rolled into the street and he wheeled his chair to the curb, always in control, to help the kid retrieve it and a neighbor saw.
If not denied personhood outright, we tend to get our personhood policed by rhetoric and language. Nondisabled people routinely refer to us using euphemisms like “special needs,” “differently abled,” or, in a pun on language from the past, “handi-capable.”
These aren’t words anyone like me (meaning disabled) came up with – they were defined by society because the concept of “disability” makes nondisabled people feel uncomfortable. It’s a reminder that yes, we are different.
But as I like to remind people, disability is written into civil rights laws, so by teaching young people that “disability” is something to be ashamed of – say, by implying that someone shouldn’t have more children because of one – society is, in fact, disconnecting them from their civil rights. We didn’t celebrate the 27th anniversary of the “Americans with Special Needs Act” this summer, after all.
The disability community continues to struggle with media and interest-group narratives that frame us as victims or takers. The ongoing health care fight by the disability-rights group ADAPT – with its images of Americans in wheelchairs protesting proposed cuts to Medicaid and being removed by Capitol Police – and others was a powerful moment in our movement. And while the public reacted with outrage at disabled people being abused by law enforcement, I have to wonder if nondisabled people really knew just what the protesters with disabilities, including our friend Steph Woodward, whose image became synonymous with this activism for a time, were really fighting for.
They were fighting for their very lives, their right to determine where they wanted to live – in this case, in their communities rather than being forcibly institutionalized in nursing homes. They are strong, but were still fighting and being framed as victims.
We talk about this a lot in our home, about the issues affecting the intersecting oppressions we encounter, whether ableism, racism or sexism. It’s impossible not to – and we would be irresponsible if we didn’t.
We also spend a lot of time talking to my kids about consent. People often act as though disabled people don’t have a right to bodily autonomy. When I attended the women’s march in D.C. in January, I was repeatedly grabbed and manhandled by women who wanted to know where was my mommy and why didn’t I know better than to wander away from her. They all looked shocked when I responded, “I am the mommy,” but not a single one apologized to me.
As little people, we also deal with the public taking photos and videos of us without our consent. I want my children to understand how to navigate the world safely but at the same time feel like they can speak up when someone is treating them wrong or in a way that makes them uncomfortable.
Patrick and I are now expecting our third child. As of yet, we don’t know if he will be a little person or an average height child, though so far, it looks like he will be the latter. But we don’t care either way.
What matters to us, as we anticipate the joy and sleepless nights ahead, is that our family is growing again.
Everyone’s “normal” is their own: Share your story of how you use being different to make a difference in your own life or others’ with #ToBeMe or text/WhatsApp us on +1-347-322-0415