My Villain Origin Story: Break-up with My Disability Constituency Organization

My Villain Origin Story: Break-up with My Disability Constituency Organization

 

Rebecca Cokley

 

Content notes: cures, eugenics

 

My name is Rebecca Cokley. My parents met in 1970 at a little people convention. My mom was a redhead flower child, from the San Francisco suburbs where she grew up as 1 of 9 kids in an Irish Catholic family. My dad was the son of a federal judge in Selma, Alabama. He had all the southern charisma and drove a 1969 Camaro. It was love at first sight. Both of my parents were the only people with dwarfism in their families. They married in 1972 and after multiple miscarriages, I was born in 1978. My parents cared passionately about making the world a better, more accessible place for people with disabilities. When I was a toddler, my dad became paralyzed and started using a wheelchair. He ran a Center for Independent Living and my mom worked at a Disabled Student Services office at a community college. I grew up in a family where disability was the norm and expectations were high. I credit that to their continued involvement and leadership in Little People of America and the cross-disability rights movement. I never thought anything was wrong with me, rather I was raised with the social model and the need to make society more accessible for our community. 

LPA. It was a place of pride. A place where we would gather. 

On weekends we were frequently at our LPA chapter meeting or meeting a new family with a child with dwarfism, who had just gotten a diagnosis, to help provide them with information and resources, but even more importantly, to show them that the LP community could live, work, and thrive, just like the averages. My parents spoke of going to college, finding jobs, deciding to have a family, all “typical” things but also answering the concerns that new parents had about what life with dwarfism would be like for their children. They welcomed the parents into Little People of America, connected them to advocates and resources, and helped their kids form friendships that would last lifetimes. LPA served as a place that while it constantly grew to meet the needs of new families, it also was a place that taught us our value. It’s the place where I met my earliest mentors, the place where I met “cool teenagers” who I totally wanted to be like with crimped hair and acid washed jean jackets that my mom would NEVER let me get, and the place where I felt I could “be me.”

For me, LPA was a place where multiple generations of families would gather to reminisce, share culture, and celebrate. Then, one day, the outsiders arrived at the gates. They came promising to FIX the people, to make them more like the outside world. Where safe spaces like this weren’t needed anymore. And they offered money. And the leaders of the community took it and opened the gates. And like the majority culture, they watched, absorbed, and moved to cure the people. And while some, particularly those from families with no one else like them, found comfort in the treatment and the chance to be like everyone else, not everyone did. 

Little People of America was founded in 1957 as a social- centered membership organization for people with dwarfism and their families. Founded by vaudeville and Hollywood veteran Billy Barty, for over fifty years the organization grew and thrived, creating a safe space for little people (LP), providing access to top medical experts and offering scholarships. 

I want to be clear, LPA was far from perfect in those early years. There were times when decisions were made that were questionable such as relationships with exploitative entertainment providers, but I never felt like LPA was not a place for LPs. At the annual conference every year, regional meetings, and chapter events, you could look folks in the eye, hear stories from the elders (OWLS-older wiser LPs). It didn’t feel like you were being studied in a petri dish, that you were under a microscope. And this is how it was for fifty years.

It began with the acceptance of one-time funding from PhRma, a conglomerate of major pharmaceutical companies, in exchange for access to the conference. This is when the leadership sold us and our children. The invaders walked through our village and behaved like the carnivals of old where for a sum of money, the averages were let in to gawk and ask invasive questions of the little people. In the words of bioethicist Dr. Joe Stramondo, 

Dwarf culture is a celebration of the experiences of the dwarf body. These companies explicitly aim to “normalize” that body. Accepting this money does not merely present a conflict of interest with the organization’s mission of “Improving the quality of life for people with dwarfism throughout their lives while celebrating with great pride Little People’s contribution to social diversity.” It is a betrayal of the sixty years’ worth of work it has taken to build one of the most vibrant displays of disability pride the world has ever seen.

PhrMa paid money for access to LPA’s annual conference several years ago. To be in a room with little people and hear them talk about their most intimate details of the dwarfism experience. To walk in our spaces. To watch our families. The leadership took our oppressor’s silver to find out how to eliminate us. When pushed back by some of the membership, LPA apologized for inviting the groups in, but when asked to return the money, LPA refused. Even more egregious, they refuse to see the long-term impact of their complacency.

When I asked LPA’s leadership during a town hall zoom how it felt knowing that its choice to let the pharmaceutical companies in would undoubtedly not just impact our community, but likely the Autistic, Cerebral Palsy, and other groups who have been on the shopping list for “curing” for years, the President responded, “We don’t think about them, that’s not our concern.” It was the most heartbreaking thing. In recent years the organization made strides into the disability rights space. It became a powerful voice on the National Disability Leadership Alliance, but the behavior it has been exhibiting lately is far from leadership. Not thinking about the broader impact of your actions on the disability community is not leadership; it’s not in solidarity with other disabled people, it’s not rights, and it sure as hell isn’t grounded in justice.

As the technology has advanced and led to a 2021 announcement that one of the multiple pharmaceutical companies that had a trial drug to correct height for people with achondroplasia had received FDA approval, LPA took months before agreeing to host town halls with those directly impacted, LPs themselves. LPA leadership continues to be mad that a cohort of long standing influential members who are perceived as troublemakers who continue to bring this situation up and reiterate that the drugs show no impact on quality of life or improvement to key health concerns presented by the community as priorities.

This group is a mix of late stage gen-Xers and millennials. We are all college educated racially and geographically diverse. We are parents and non parents, though the parents represent families that are not  solely inclusive of children with dwarfism. We are teachers, philanthropists, activists, bioethicists, MBAs, and artists. We are people who have contributed greatly to Little People of America over the years, in dollars, in service, in access, and advocacy. And interestingly enough, it is not just people with achondroplasia but with other forms of dwarfism who know that they’re next in line for eradication. But what unites us is an unabiding LOVE for our community and our culture. And we are determined to not surrender over 50 years of inclusion to eugenics.

History tells us that when people sweep atrocities under the rug, they are bound to repeat themselves. In 2017 I wrote an op-ed for the Washington Post about CRISPR (a gene editing tool) and the right of people with disabilities to exist. As I said then, and still holds true today, the context of the era matters. At this moment we are at the nexus of a pandemic, and a war, an increase in the disability population due to long COVID. Long COVID is being posited as the monster under the bed and disability as a moral and physical failure of those who have failed to bounce back to join the “new normal.” Parents see a choice to use this experimental drug on their children as a way to escape disability with no regard for the long-term impact or what their children will lose as a result of their choice. 

For an apology to be effective, it must evaluate the relationship between the difference between intent and impact and LPA has only focused on the former. And it must repair the harm that occurred. LPA has repeatedly blamed the victims, telling the troublemakers that they need to balance the feelings of people with dwarfism with the majority culture. That they have to provide information on “both sides” to people who may seek information or guidance on health issues even when the information provided by the pharmaceutical industry is misleading (claiming the focus is on quality of life, when the slide deck from the companies directly centers on gaining height, not health). From the organization:

LPA is working to provide accurate information to help families make these complex, emotionally charged, and life-altering choices. LPA believes it is the organization’s responsibility to help LPA’s members better understand patient rights and to advocate for a research focus on healthcare outcomes beyond growth velocity.

LPA respects the personal choices of families or individuals regarding healthcare decisions and welcomes all individuals and families to be part of LPA, regardless of medical decisions and outcomes and recognizes the complexity and sensitivity of this topic for the dwarfism community.

There is no both sides when one wants to eliminate the others’ existence. It’s not about multiple opinions. It’s not about the diversity of perspectives. In recent years, LPA’s membership has continued to be made up of a growing number of average height parents. This is not a bad thing, but shows the demand that exists to ensure that non-disabled parents have access to tools, resources, and services to help them raise their children. However, many of us adult LPs feel that the organization has shifted from centering on the LP child in the family, to centering the average parents. This shift in the power dynamic has led the organization’s leadership to pay greater attention to the concerns and fears of average height families over dwarf-led families. And the current leadership has refused to take a stand because of a fear that those families will leave. It’s about a cabal of little people who are terrified of average height parents.  

I understand that there is a fear that recentering LPs as the focus of the organization’s attention may result in average height families prompting to the temptation of a pharmaceutical fix, but my fear is that if the organization doesn’t, there will be no LPA in one more generation because all the LPs will leave and all the averages will support eradication. 

In 2022, the Supreme Court upheld an abortion ban in Texas that only allows the procedure if the mother’s life is in imminent harm. Families where both parents have achondroplasia have a 25% chance of their baby contracting the achondroplastic gene from both parents and it’s fatal. Going forward, dwarf women in the state of Texas will be prohibited from ending their pregnancy, in many cases regardless of the health impact on the mother and the nonviability of the fetus. And LPA has remained silent about this. 

So LPA will defend genetic therapies to eradicate the dwarfism gene to create a space that is safe and welcoming for auxiliary members….but won’t tell dwarf women today that their right to health care and bodily autonomy is on the line. How is this consistent with their commitment to quality of life?   

It is harmful to be surrounded by people who are actively celebrating the eradication of your people. Because the reality is, average height people and corporations don’t see us as a distinct people, as a culture. We are patients and a market. A majority of average height family members see us as a flaw in the genetic code, a reminder that their loved one is not EXACTLY like everyone else in their family. For some parents, our dwarfism is a reminder that there is always something that they will not fully understand about their child. Like the Daikini, average height people are the outliers in dwarfism culture. And yet the LPA is content to see the little people in our own community literally shrink, see their voices silenced, see their world become even smaller in favor of making the averages feel safe and welcome. When the majority of society is built by design for average height people, it’s still not enough for them. Why was our sliver of a safe cultural refuge a perceptible threat to them?

In the context of heroes and villains, I have always been more Magneto than Charles Xavier, two mutant characters from The X-Men, a comic book series by Stan Lee and Jack Kirby from Marvel. I grew tired at an early age begging nondisabled people to treat me fairly with the inherent dignity I should have as a member of the human race. As time has gone on, myself and a number of others have pushed back. We have demanded increased clarity and transparency from the board. We have asked for the return of the funding repeatedly, to no avail. We have been on the receiving end of multiple emails from others asking me why the organization that cultivated our feelings of self acceptance have abandoned us. And we have been the subject of numerous emails from those in periphery to leadership telling me to stop. 

LPA no longer represents me as a little person but in my heart I secretly hope it will make the choices it needs to make to represent my children, who still see it as safe space for them and their friends to “just be.” I hope the next generation of LP advocates, who are already more engaged on cross-disability organizing than I was as a young activist, will join and maintain the fight for our humanity, for our survival. And here’s the thing:  it’s not about me. It’s about our future.

 

ABOUT 

Rebecca Cokley is a policy wonk, pundit, mom, and occasional super villain who happens to work in philanthropy. She is a proud alumni of the University of California Santa Cruz and can be found on twitter @RebeccaCokley.

 

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