Pharmaceutical Sponsorship’s Threat to Dwarf Pride

A photo of pills and American money, indicating "big pharma."

Addressing disability pride in her book The Minority Body, Elizabeth Barnes writes, “the benefits of pride movements are not merely emotional or affective – what or how we feel. Pride movements also affect what we can know.” Her argument is that disability pride is an answer to the typically unchallenged, “common knowledge” that disability equates with catastrophe and suffering.  Disability pride, Barnes maintains, creates the space disabled people need to make sense of their own experiences of disability, which are not pure doom and gloom. As she puts it, the disability pride movement gives disabled people permission to celebrate our difference by supporting the subversive idea that disability is something to celebrate, despite that it is typically understood as a defect or deficit.

Little People of America (LPA), the oldest and largest support and advocacy organization for people with dwarfism in the world, has been one of the most important incubators of disability pride in the U.S. for more than six decades.  While local and regional events are important points of access to the dwarf community for thousands of people, LPA’s annual national conference has been a week-long celebration of dwarfism so massive in scope that it is nearly impossible to describe to someone that hasn’t seen it. Every year, two to three thousand people descend upon an American city to proclaim the beauty and vitality of our way of life in the dwarf bodies we inhabit. Dwarf culture is on display at the conference’s fashion show, talent show, exhibits from the Dwarf Artist Coalition, individual and team sporting events with the Dwarf Athletic Association of America, formal banquet, and dance parties every night. Romance often blooms and lifelong friendships are forged during the one week a year that we have the space to forcefully reject the “common knowledge” that our bodies are defective and our lives are tragic. Here, we can recognize that we flourish because of our dwarf bodies, not in spite of them.

Regrettably, all of this has been put in peril by a recent decision from LPA’s Board of Directors to accept sponsorship money for the conference from pharmaceutical companies developing “therapies” for dwarfism.  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.

The only reason these pharmaceutical firms even exist is to cash in on the “common knowledge” that our bodies are inherently broken and in need of a technological fix. There is an intractable contradiction between dwarf pride and a desire to work toward a pharmaceutical cure for dwarfism. LPA’s leadership has taken away our permission to celebrate by clearly communicating with this decision that, in their view, dwarfism is not something that makes sense to celebrate.

To be sure, this wholesale rejection of dwarf pride was probably not the board’s intention. At least on the face of it, they believed they could have their cake and eat it too. For example, the announcement that the organization would be accepting sponsorship money from pharmaceutical firms proclaimed: “LPA is not showing preference, support or recommendation for any of these companies. Rather, we believe the best way to state the case for LPA’s mission, goals and our expression of dwarf pride is for these companies to experience the transformative and empowering force of our National Conference, firsthand.”  Of course, this reasoning is deeply flawed.

First, it strikes me as plainly obvious that accepting sponsorship money is in no way a necessary condition for exposing pharma executives to dwarf culture. I am not sure if the board is being profoundly naïve or demonstrably disingenuous when they claim accepting money from someone increases your influence over them. This notion is absurd. Clearly, entering into a formal relationship of financial dependency with an entity increases the funder’s power over the decisions and actions of the funded and not vice versa.

Further, LPA’s board has defended its decision to accept this funding by claiming that building a relationship with these pharmaceutical companies is somehow an extension of its policy to remain neutral toward the medical decisions of its members. This reasoning is also absurd. It’s true that LPA is and should remain a big tent, and that means remaining neutral about many personal choices its members may make about how to live their lives. However, accepting sponsorship money from the developers of a product demolishes both the perception and the reality that one is neutral toward the use of that product. Clearly, the LPA’s Board has diminished and not bolstered its alleged neutrality toward this issue by beginning to establish a relationship of financial dependence on these pharma companies and binding LPA’s fiscal interests to the financial success of any drugs they produce.  The fact that reasonable people should be able to disagree about the value of the work being done by these pharma companies and still have a home in LPA, is exactly why the board should not have taken this money. As an organization, LPA is not remaining “neutral” toward this debate about the value of gene therapy if one side of the debate is paying its bills.

The truth is, the drugs being developed by these firms are still in clinical trials and we don’t know yet what their impact will be on dwarf bodies. It’s possible that they could improve our quality of life by reducing the effects of dwarfism that everyone would agree are undesirable, like sleep apnea or spinal stenosis. However, there is no reason to think that these drugs won’t go to market as soon as they are shown to increase height, which has been the primary outcome measure of every study conducted so far.  What should be common knowledge is that pharmaceutical corporations are driven by profit and dwarf culture won’t deter them from seeking it.  This is why accepting their money poses an existential risk to dwarf pride.

At this point in my life, I don’t need LPA’s permission to celebrate my dwarf identity.  I am comfortable in the certain knowledge that my dwarf body is capable of giving me a most excellent life.  But, this certainty is the result of growing up in LPA when it was a space that unapologetically celebrated bodies like mine.  Future generations, seeing big pharma logos on name badge lanyards and conference brochures, will not enjoy this kind of certainty.  This is why I and others in the organization are expressing our dissent.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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Tyrion Lannister, Dwarf Identity, and the Struggle for Agency

Photo of Peter Dinklage holding an Emmy

*Spoiler Alert: This article contains spoilers from Season 8 of Game of Thrones*

Paul Steven Miller was an icon in the dwarf community. After graduating with two Ivy League degrees and fashioning a career in public service as a Commissioner of the Equal Employment Opportunity Commission and then a Special Assistant to President Obama, Miller held an endowed chair at the University of Washington School of Law.  Arguably, he did more than anyone to show generations of Little People what was possible for our lives, despite millennia of stigma and hostility.  With his more tangible contributions of crafting the Genetic Information Nondiscrimination Act and enforcing the Americans with Disabilities Act (ADA), he brought scores of disabled people, including Little People, along with him as he found his success.  So, what does this pillar of society have in common with a lustful, wine-soaked character from Game of Thrones, the popular fantasy television show that just ended on HBO?  Both Paul Miller and Tyrion Lannister gave Little People greater agency by giving us a better chance to tell our own stories about who we are.

In his book Far From the Tree: Parents, Children, and the Search for Identity, Andrew Solomon makes an important distinction between vertical identities that are typically passed down between generations and horizontal identities that are not shared between parents and children, but learned from a peer group. Vertical identities usually include ethnicity or language, whereas horizontal can be things like sexual orientation or, for my purposes, dwarfism.

Growing up as a little person with average sized parents, it was essential I had Paul Miller and other role models or mentors to teach me how to be a dwarf.  Often, this education from my dwarf elders was quite mundane, like advice about the best step stool to bring in your carry-on when traveling by air and staying in a hotel. Other times, however, it was a matter of being shown that people like me, who experience pervasive structural discrimination and personal ridicule because of the bodies we inhabit, can still become someone with a worthwhile future.

However, a person’s identity is not only determined by the boundaries of their imagination and ambition. One of philosopher Hilde Lindemann’s key insights in her book, Damaged Identities, Narrative Repair, is that identities are relational: who we are is always determined by both who we believe ourselves to be and who others allow us to be. Further, who we can be holds sway over what we can do.

For instance, when Paul Miller first graduated from Harvard Law, near the top of his class but prior to the protections of the ADA, he was rejected by 45 firms who initially saw him as an attractive candidate, but lost interest when they realized he was a dwarf.  These suspicions were confirmed when a hiring committee told him outright, “we’re not going to hire you because we think our clients would think we are running a freak circus if they saw you.”  Miller was denied the chance to do the kind of work he had trained for because his dwarf identity, as it was constructed by others, precluded it.

Lindemann might explain that this is because the master narrative of dwarfism did not include high powered attorneys and vice versa.  Master narratives, according to Lindemann, are the “stock plots and character types that we borrow from the familiar stories embodying our culture’s socially shared understandings.”  While our individual identities consist of the many threads of our experiences and roles, woven into a uniquely complex tapestry, master narratives serve as anchor points that are essential when we try to understand our own identity and that of others.  They help everything else we know about ourselves and others make sense as we move through society. So, it is all the more damaging to a person’s ability to control their own life when the master narratives that guide their identity formation unjustly constrain who they can be and what they can do, as we saw in Paul Miller’s case at the beginning of his career.

Luckily, while master narratives are powerful social forces, they are not written in stone. With some work and creativity, they can be replaced by what Lindeman calls “counterstories.” These are deliberately crafted, alternative narratives that, when they are adopted as part of a shared cultural understanding of an identity, open up a person’s possibilities rather than stifle them.  To some degree, Miller’s life served up a counterstory that resisted the oppressive master narratives around dwarfism.  Yet, while his story is compelling, outside of certain corners of academia and the disability rights movement, he remains obscure.

For a counterstory to take full effect, it needs to find purchase as a widespread cultural phenomenon. Thankfully, for this, George R.R. Martin has given the dwarf community the gift of Tyrion Lannister.  Many people will go their entire lives without meeting a Little Person and as such, fictional portrayals are all they will ever have when trying to make sense of the dwarf identity. One can imagine how difficult it is to formulate a positive identity as a moral equal of your fellow citizen when Rumpelstiltskin, Gimli, and Mini-Me are people’s points of reference for what they can expect from those like you.

Tyrion came crashing down into my life in the late nineties, when a friend at my summer job lent me his copy of A Game of Thrones. For most people, I imagine protagonist Ned Stark’s death was the most shocking bit of the book. For me, an angsty Little Person teen who escaped into the pages of fantasy novels as he tried to figure out who he was, encountering a “real dwarf” in one of these books hit me like a bolt from the blue. In a sense, Tyrion gave my teenage self permission to fully acknowledge and fully feel the public ridicule that is part of the everyday life of a dwarf; and then he gave me some of the tools I would need to move past it.

However, as Lindemann tells us, identities are relational. So, it wasn’t until Tyrion broke into the mainstream as a central figure in HBO’s megahit TV show two decades later that his potential as a counterstory really started to be realized. He still played the role of comic relief, but the laughs were evoked from his sharp wit and not at the expense of his stature. Following the tropes of other dwarf characters, he was a somewhat depraved, perpetually drunk lecher, but, unlike his predecessors, these behaviors were explained as an unfortunate response to the countless hostilities one experiences as they move through the world in a dwarf body. Not only did Tyrion turn these stereotypes on their head, but, he ends up being the greatest antihero in Westeros.

Of course, what makes Tyrion an antihero rather than your garden variety hero was not his dwarfism, but the many deep imperfections in his character.  After all, he murders his lover and his father in the span of a single evening and then ships off to enable a character that turns out to be something of a fascist.  At the end of the day, though, it’s his moral courage and humility, combined with his sharp, articulate mind, that save the Seven Kingdoms from mass genocide by dragon fire.  His flaws ran deep, but so did his compassion and integrity.

Still, as far as subversive counterstories go, Tyrion seems to be the low hanging fruit.  After all, he is a dwarf, but he is also a wealthy, white, straight, cis man.  To do the work that needs to be done most, we need more counterstories about dwarfs and we need them to do more than help the future Paul Millers of the world get jobs at elite law firms.

There may have been earlier fully developed, sympathetic dwarf characters in literature, film, or television, but none of them have been taken up as part of our shared cultural imagination like Tyrion Lannister.  Perhaps, his existence in the world has given pause to some of those who might have otherwise snickered, jeered, or tried to snap a camera phone picture when a dwarf walks by.

Rooted in Rights exists to amplify the perspectives of the disability community. Blog posts and storyteller videos that we publish and content we re-share on social media do not necessarily reflect the opinions or values of Rooted in Rights nor indicate an endorsement of a program or service by Rooted in Rights. We respect and aim to reflect the diversity of opinions and experiences of the disability community. Rooted in Rights seeks to highlight discussions, not direct them. Learn more about Rooted In Rights

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