Wednesday, November 4, 2015

The Dark Side of Care

Okay, okay, so first MSI, now Hannah. I suppose I have to give some thoughts about The Strange Case of Anna Stubblefield.

I think that the perspective of disability is an interesting and insightful one from which to think about what it means to be human. Disability shows the lie in the idea that we're all equal, independent, and self-sufficient. From infancy, to old age--and even the points in between, though we sometimes trick ourselves into forgetting it--we need others.

I suspect that relationships--families, friendships, communities--can help people with a serious cognitive disabilities who might otherwise be ignored have a voice. Doctors aren't always the best gauge of the capacities and abilities of those who have cognitive disabilities--often a family member can discover more about what that person likes and dislikes, and about what that person is able to do. It takes spending time with the person and really getting to know them to understand who they are.

However, disability has a complicated relationship with care and with caregiving. Care involves asymmetries. It can imply inferiority on the part of the one cared for; it can leave the person who is receiving care vulnerable to the whims of the caregivers. It can take advantage of the care-giver. (For instance, my grandmother cared for her mother and her husband's mother night and day for many years, rarely even leaving her house.) We're aware of things like abuse in nursing homes, but we don't always remember that abuses can happen in non-institutional settings, too.

Families, friendships, and communities can go awry.

I don't have an answer to the case of Anna Stubblefield--and I don't know whether facilitated communication works or not.

I would say that it doesn't seem safe to trust someone's communications of a very sensitive nature if you're the only one who can decipher it. It seems conceivable that you might have a savior-complex.

Care isn't about saving people from their condition--it's about offering them friendship in the midst of it. If care is about being someone's Spider-man to swoop in and save the day, then the caregiver would have the same control over them as a doctor. (And the disability movement has argued that the idea of medical competency--of approaching every disability as if it is within the medical establishment's realm of expertise--is problematic. Disabilities typically aren't illnesses that can be fixed, and a disabled person should not be subjected to the doctor's (often changing and sometimes ineffective) treatments. Rather, the disabled should be allowed to choose how to approach and care for their disability, supported and aided by doctors.)

Finally, and this isn't my idea, but a friend's: While I'm open to new ways that allow people to communicate, isn't the idea that there is fully functioning reasoning present in many disabled people an attempt to colonize disability? Doesn't it valorize reason rather than accept the whole range of human difference? I think that people with disabilities should be treated with human dignity quite apart from whether, with an innovative new method, we can unlock their rationality.


Sonetka said...

That's an incredibly strange case (I read the article about a week ago and am boggled by the whole thing). I also find the persistent idea that a "normal" intelligence is invariably hidden away somewhere to be somewhat ... well, I guess unimaginative is the word, although if I had a non-communicative child I would do everything I could in order to communicate in some way we could both understand. As for FC, it sounds fantastic but it seems to have failed every real trial it's undergone. I don't say that its practitioners aren't sincere, but there's a certain sameness to reported FC communications which really makes me wonder -- especially the poetry and the perfectly timed "I love yous", complaints of being trapped, etc. It seems more like what a typical person would imagine if asked to project themselves into the mind of a severely disabled person.

Emily Hale said...

That raises the very interesting point of the ease with which we sometimes impose our imagined sense of what others are feeling onto them. This is problematic, and often happens with regard to disability. For instance: