“Why do I have to keep justifying my existence?” How gene editing policy discussions reproduce ableist assumptions and generate advocacy fatigue despite the crucial need for disability perspectives....
By: Emily Beitiks
This article was cross-posted on Biopolitical Times, the blog of the Center for Genetics and Society. 
Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.
Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.
Why aren’t people in the disability community talking more about this?
I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Brave New Worlds.” 
Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”
Similarly, a conversation comes to mind that I had with another disability activist, who previously focused on the neo-eugenic uses of genetic technologies but left because she was burnt out. As a person with a disability, she didn’t want to continue spending her life’s work validating her own existence, and moved into the arts instead to celebrate the beauty that disability brings.
Despite the disability rights movement’s progress, both of these stories help illustrate why people with disabilities might not want to waste their time thinking about these issues. Indeed it suggests that my own lack of understanding of why people with disabilities aren’t more interested in following this comes from a place of privilege as a nondisabled ally. It seems that for many, engaging in the debate is just too hurtful.
Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?
Yet when it comes to CRISPR for human reproduction, disability is at the center of it all. Whether or not CRISPR takes hold in the fertility clinic, the scientific and philosophical debate is constantly centered on disability. So here are five reasons why CRISPR and disability are dangerously intertwined, exemplifying why we need the perspectives of people with disabilities weighing in on this debate, as unappealing as diving in may be:
- Modern-day eugenics. For me, it’s pretty much that simple… and that scary. Advocates of using CRISPR for heritable genetic modification argue that we can distinguish to ensure this is only used for deselecting genetic diseases (“germline therapy”), rather than using the technology to select for more desired traits (“enhancement”). But even this binary presumes we can draw clean lines to eliminate diseases that don’t also suggest preventing disabilities. It brings up questions of what we should and shouldn’t value in future generations. Knowing that these choices are being made in a deeply ableist culture—where people like Marsha Saxton would likely not have been born because of fear of the “spina bifidas”—illustrates how hard it would be to draw lines about what genetic diseases “we” agree to engineer out of the gene pool and which are allowed to stay.
- We are moving backwards. Even as opponents of CRISPR germline modification make their case, it often hinges on the idea that we don’t need CRISPR because we already have preimplantation genetic diagnosis (PGD) to allow parents to have children free from genetic abnormalities. However, disability advocates still contest PGD as socially harmful genetic selection and disability prevention. The Center for Genetics and Society’s Executive Director Marcy Darnovsky recently shared with me that when she points out this tension to the press, they rarely if ever include it.
- It’s selling disability as tragic. This isn’t new. It’s how preimplantation genetic diagnosis was sold. It’s how stem cell therapy was sold. Before we even develop the technology, we develop the story: people with disabilities are living a sad, tragic existence, and only through progress in the genetic sciences can we spare their suffering in future people. This tragedy gets retold and retold, creating urgency for the technology in question: Forget the vibrant disability community. Forget the changes in technology, art, and culture that people with disabilities bring to our world from the insights of living with a disability. We don’t have time to worry about ethics or risks! Selling the need for the cutting edge technology comes on the backs of people with disabilities, so science policy and debates become one more place where the tired trope of disability as “the worst” thrives.
- Nondisabled people won’t get it unless people with disabilities are part of the
debate. Nondisabled proponents are arguing we need to use CRISPR to prevent disabilities. Nondisabled opponents suggest we should be wary of CRISPR for its threat to disability justice. Both sides are talking about disability, but the conversation would carry more weight if disability activists were involved.This is why the work of disability activist and writer Harriet McBryde Johnson was so powerful. In a series of conversations with philosopher Peter Singer, one of the most outspoken advocates of preventing children with disabilities from being born, McBryde Johnson put a face to his theoretical exercises and argued that they had life or death consequences for people like her. (Still image via Vimeo) When I share my interests in these sorts of debates, I often get this wave of enthusiasm from other nondisabled people who seem to find it fun to sit around and discuss how much better the world would be if we could prevent or cure all disabilities. They want to talk it out through thought experiments and philosophical exercises. I mean no disrespect to those who think that way. After all, I’m married to someone with a philosophy degree, and some philosophers with disabilities have made important contributions to the way disability is theorized in ethical debates (e.g. Adrienne Asch and Anita Silvers). However, I think the debate needs more perspectives, personal stories coming from people with disabilities who help us to attach faces and lives to the debate and to remind us what a loss it would be to live in a world with less disability. (At the 2015 National Academies' International Summit on Human Gene Editing, the conversation did not include any featured speaker open about being a person with a disability. (There were efforts to invite one or two, and Ruha Benjamin did give a wonderful presentation, which you can view here, but the omission was startling.) - It impacts the fight for disability equity today. When cures and the end of disability are always cast as “just around the corner,” it continues to make it harder to fight for what we need today. We continue to invest millions of dollars on anything that might help us eliminate disability, and yet people with disabilities are still struggling to make our society more accessible with things people could be using right now, for these social changes are always framed as “too costly.” This doesn’t mean that we need to be entirely anti-cure and certainly not anti-research, but again, we need people with disabilities to play a central role in this debate. A diversity of voices speaking to their experiences with disability can teach us that we don’t need CRISPR to “solve” the disability = tragedy equation. Social changes to the built environment and cultural changes to discriminatory attitudes are a safer bet with more widely shared impacts.
2017 will mark the 20th anniversary of GATTACA’s release, a film which brought to the big screen issues of genetic discrimination resulting from the effort to control human reproduction (for a great disability read on it, read here). The “not so distant future” imagined in the film grows closer with CRISPR. I wish I could just turn away from CRISPR to hope it’ll just pass over—I far prefer spending my time on our disability film festival or promoting disability history. Yet disability culture and arts are more related to CRISPR than one might think. They provide a powerful illustration of how disability enriches our world. It just might be worth making time for the CRISPR debates (even though the emotional labor of doing so is huge), to help ensure a long-term future for disability as a creative and generative force.