One day last February, Henny Kupferstein started having trouble walking. Her knees were buckling and she couldn't feel her feet, so she took herself to the emergency room at the Kaiser Permanente Zion Medical Center in San Diego. After two hours in the emergency room, her body was shaking, her teeth were chattering, she was sweating profusely, and she was losing the ability to communicate through speech—so she wrote on a piece of paper that she thought she was going to have a seizure.
Going to the emergency room wasn't that unusual. Since Kupferstein moved to California three and a half years ago to pursue her Ph.D. in psychology at Saybrook University, she's had trouble accessing routine care for managing the symptoms of her co-occurring genetic conditions, so she's visited the emergency room many times. This time, though, she was kept in the hospital for nine days, feeling increasingly ignored and disrespected by the medical staff. She says they treated her as if she was faking her illness and kept demanding psychiatric evaluations rather than addressing her physical problems. Eventually, she figured out why: A hospital doctor had learned that she was autistic and had written on her chart that she probably had "mental retardation."
This is a story about a hospital treating a woman with complex medical needs as if she were the problem, a predicament that neuro-atypical Americans fear they’ll face every time they seek medical care. What's more, the medical staff—at least as Kupferstein experienced it—did so by questioning her fundamental competency to assess and be an expert in herself. They applied the label "mental retardation" to make her own voice less potent in managing her care.
There are two problems here. First, Kupferstein does not, in fact, have an intellectual disability. Second, doctors should clearly listen to patients who do have intellectual disabilities. In fact, by mislabeling Kupferstein, they plunged her into a category of patients who are especially vulnerable to abuse in hospital settings. I reviewed a number of recent studies about people with intellectual disabilities in hospitals; in each of them, researchers agreed that the risks for such patients were higher, that the outcomes were worse, and that improving the situation would require educating doctors, and teaching them to presume competence in all their patients. Kupferstein's experience of being misidentified, then ignored and dehumanized, shows just how far we have to go.
Kupferstein is a widely known author in the disability rights world, particularly in autistic communities, with scholarly articles and a book to her name. She's pursuing an advanced degree. She's a passionate, articulate, and extraordinarily well-educated person. When we spoke over video chat about her experiences, she offered detailed but clear descriptions of her interlocking physical ailments and how they co-exist with her neuro-atypicality. According to her description of her time in the hospital, though, the doctors took the combination of her autism and her extraordinary medical fluency as cause for suspicion that she was faking her medical needs. Kupferstein tells me that she was accused of both factitious disorder and psychosomatic disorder.
I reviewed over 450 pages of medical records from the episode and watched videos that Kupferstein took while she was in the hospital. The videos provide definite evidence of poor communication between the medical staff and the patient. The core dispute over whether she should be discharged from the hospital seems to have been whether the weakness in Kupferstein's legs had a biological basis or not. In her records, from which Kupferstein has given me permission to quote, doctors routinely state that there is no observable biological basis for her limited mobility, nor any observable damage to her back. They question whether she truly has Ehlers-Danlos syndrome (Kupferstein notes to me that her diagnosis came from a leading expert). They clearly want to discharge her from the hospital and believe she will be fine on her own. Kupferstein disagrees. She knows her body and insists that there’s a problem. She wants answers. The tensions come forth clearly in the medical paperwork; for example, one doctor writes in a discharge document seeking to classify her as psychosomatic, "It is difficult to know truth from fiction in this patient who continued to present information that was easily refuted." As a result, Kupferstein tells me, she was discharged early, when she still needed (and qualified for) in-patient treatment. Medical staff wheeled her to the door of her home when she couldn't really move, even with a walker. She says it took over a month to regain the ability to walk without a cane.
Behind Kupferstein's frustration with the hospital staff and ongoing concern about her physical health, she says she decided to contact me as a journalist because of one key phrase in her records: "mental retardation." The record of the hospitalization includes the following sentences from her doctors: "She's had similar complaints in the past upon review of the medical record. May have a psychiatric component with somatization or factitious disorder. Care everywhere shows that she has a regional case manager, which would be unusual for someone without mental retardation or some other debilitating disorder." In other words, the doctors seem to assert a (baseless) link between an intellectual disability and their conviction that Kupferstein has a mental illness that compels her to invent symptoms (the "factitious disorder").
There is no justification for linking care via a "regional center" to intellectual disability, according to Samantha Crane, legal director and director of public policy at the Autistic Self Advocacy Network. Indeed, Crane tells me over the phone that there's no excuse for treating anyone the way Kupferstein was treated, regardless. Crane says that receiving services at regional centers requires "significant limitations in three or more areas, but they certainly don't have to be related to intellectual disability."
Regional centers, Crane explains, are "a one-stop source of resources for people with developmental disability to help navigate the system of services that might be available to them." They were established by law in California in order to clarify the pathway to services and undo inequities. They are not just for people with intellectual disabilities or "debilitating" disorders—they're also a major part of how California's disability resources get distributed. "It is incredibly important," Crane tells me, "that people without intellectual disabilities know that they can access these regional centers if they have [a] developmental disability."
Crane also worries about the stigma embedded in Kupferstein's experience. "We really don't want that kind of attitude [that] might disincentivize people from using a regional center," Crane says. "People who still have stigma about intellectual disability or don't want to have that label when they interact with doctors," because they are afraid of being dismissed like Kupferstein was, "might think they shouldn't get services from the regional center because it'll result in mistreatment."
Despite many emails, phone calls, and messages left with Kaiser Permanente, both at the national office and with Zion Medical Center staff, I received only a boilerplate response about the organization's resources and commitment to the health of its patients. Neither office responded to specific requests about how they train their staffs to assess disability.
"I have the capacity to take care of myself," Kupferstein says near the end of our video call, but she feels that her attempt to take control of her health care has backfired. She's always been worried about “the danger that they will put you down as a psych patient. This time it finally happened." She pauses. "[If you] try to navigate the medical system itself, the system is going to hurt you. When you try to advocate for yourself, that gets used against you."