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.