At the University of Washington, a world-renown hub of medical innovation, researchers team up across departments to find answers to some of health care’s most pressing problems.
Programmers solve. Engineers build. Physicians treat. Patients win.
But buried inside this collaborative approach to medicine are questions that science can’t answer: When does a physical impairment become a “problem”? Do all problems need to be fixed? How much input should patients have?
That’s where philosophers come in.
“You have people who are really good at creating technology, which is incredibly difficult, but then there’s the human side of it,” said Sara Goering, an associate professor in the Department of Philosophy. “How will these things affect peoples’ lives?”
Goering teaches Introduction to Medical Ethics, a 200-level class that covers ethical issues related to disability, autonomy, and survival from a patient’s point of a view. Most of the students are in pre-med or pre-nursing programs, but others come from fields like anthropology and philosophy.
They look at the lifespan, starting in the womb and closing with end-of-life decisions. Even before birth, Goering said, there are “biases about the badness of disability.” Pre-natal tests tell us the sex of the fetus, but they also predict conditions like Down Syndrome.
That’s where disability rights come in. Goering and her students discuss whether fetuses have a “right to an open future”: Does disability decrease that open future, or simply alter it?
Broader ethical questions concern gene editing: If technology becomes available, should we start tweaking the genetic code of embryos or fetuses in the womb — perhaps to improve health or promote specific skills and abilities?
End-of-life issues are often about autonomy. If someone is disabled in old age and wishes to die, how do we know if that wish is what they really want, or if it’s the result of the outside world no longer valuing their life? “We look at the pressures that are on people,” Goering said.
If you’re non-disabled and don’t know anyone from the disabled community, you may lack the vocabulary to talk about disability, which can prevent you from being part of the discussion — even when you want to be. Goering’s students often misspeak and correct one another, and she’s also guilty of slipping up.
Wikipedia compiled a list of disability-related terms with negative connotations, which can be a good place to start. Some of the terms are contradictory. “Identity categories are not neatly defined,” Goering said, and they’re always evolving.
“Disabled people” and “the disabled community” are the terms used in disability studies. That’s because many disabled people find that their impairments (such as inability to walk) are less of a limitation than external factors, such as unwelcoming attitudes from others (condescension, pity, etc.) or lack of accommodation (no ramps or elevators).
“Often it’s societal norms, practices, and attitudes that are disabling,” Goering said.
The term “people with disabilities” is also widespread, but Goering said many activists avoid it because it suggests that disability is inherent in them — rather than something society does to them.
Goering teaches with a book called The Minority Body, which frames disability as an alternative to the majority. Less common, but not lesser. This challenges the view that disability is a limitation.
“People think that if you’re deaf, then your ears are limited and that’s a problem for you,” Goering said. “They don’t think that there could be a different way of entering into the world — of engaging with the world — that’s as valuable as hearing, but just different.”
Some outdated terms, like “crippled” or “mute,” are easy to spot. But subtle language like “wheelchair-bound” or “confined to a wheelchair” can also offend. For one, it’s inaccurate. “Wheelchairs are liberating,” Goering said. “They let you move through the world.”
Even well-intended terms can fall out of fashion. “Hearing-impaired,” for example, is now seen to emphasize a negative. “It establishes the standard as ‘hearing’ and anything different as ‘impaired,’ or substandard, hindered, or damaged,” according to the National Association of the Deaf. “It implies that something is not as it should be and ought to be fixed if possible.”
Aim for a strength-based approach, which focuses on the positives — not the qualities that people don’t possess. “You don’t call me a non-male,” Goering said. “So why always define in opposition?”
If you’re unsure about which term to use, ask somebody. Advocacy groups provide preferred language, but ultimately it’s up to the individual.
As the program director of the UW Center for Philosophy of Children, Goering heads to classrooms in Seattle to lead philosophy discussions with kindergarten students (she’s planning to film a documentary about her students this year). She hopes her efforts will help diversify the field. “We’re thinking about ways to reach out to broader audiences for philosophy,” she said, “to make it not only this thing that dead white guys did.”
She also works with researchers at the UW Center for Sensorimotor Neural Engineering, an NSF-funded initiative that develops neural technologies. Navigating that territory requires awareness of disability rights and the sometimes contentious claims about what will improve a particular life.
To help steer the center through these sensitive issues, Goering and her team have run focus groups with potential candidates for the technology (e.g., people with spinal cord injuries), as well as people who already have the technology (e.g., for depression). Their thoughts and concerns about the devices are then sent back to neural engineers and neuroscientists.
By bridging scientists with the people they’re trying to empower, the center hopes to not only improve its technology, but to help people make well-informed decisions about whether or not they will use it. After all, what could be more empowering than letting them choose for themselves?
Goering has B.S. from the University of Illinois and a Ph.D. from the University of Colorado. She has an adjunct appointment in the Department of Bioethics & Humanities and she is a graduate program coordinator for the Department of Philosophy. For a primer on disability issues, she recommends the documentary FIXED: The Science/Fiction of Human Enhancement.