difference/disorder

nadezhda says:

I’m feeling like this is deja vu all over again from my distant youth, and based on that experience, I fear the way the discussion is being framed is likely to produce ships passing in the night . So let me take a whack at restating and expanding the discussion a bit — apologies for the length of this comment, but it’s a complicated topic.

This conversation strongly reminds me of the old debates about mental illness, and especially R.D. Laing’s romanticizing of schizophrenia. Over the course of a couple of decades we went from fairly indiscriminate warehousing of too many people in mental institutions to making it extremely difficult for people to get help for themselves or their loved ones on the too-often specious grounds that the “autonomy” of the disturbed individual has to always be respected. This trend often reflected at least an unstated assumption that the “authenticity” of a “non normal” person whom we would diagnose as mentally ill was to be valued over “artificial” normality produced by medication or hospitalization. In the process of challenging older, stigmatizing and often dehumanizing treatments for “non normal” psychological conditions or behavior, we’ve wound up putting such a value on “autonomy” or individual freedom, that the individual’s choice is preferred even if the person’s condition makes it highly questionable whether he or she is capable of assessing the consequences of forgoing treatment or of managing independently to keep body and soul together.

The history of how we have changed our approaches to “mental illness” is far from a perfect analogy to the types of “non normal” neurological conditions being discussed here. But there are some parallels, and it’s a cautionary tale about taking good intentions too far. So I think Freddie is right to raise his warning flags, which should not be dismissed so quickly.

Maybe we could take a look at what we’ve learned about a variety of primarily-neurological conditions that make people outliers from “normal”, whether it’s different types of “mental illness”, or autism, or learning disabilities. For me, that would include the following observations.
1. “Non normal” shouldn’t be equated with moral weakness. But it’s also not a “free pass” for any type of deviant behavior. Personal responsiblity is going to be difficult to assign in many cases, it’s hard to draw bright lines, but we shouldn’t abandon it completely.
2. “Non normal” must not be stigmatized. It doesn’t mean “not human”. We should use our capacity for empathy to find ways to connect — whether to the loving enthusiasm of a man with learning disabilities or to the geeky creativity of a woman with Asberger’s or the energetic friend who indulges in zany, high-risk behavior one day and won’t get out of bed the next.
3. “Non normal” isn’t binary. Most of these brain-neurological-psychiatric-related conditions appear on a continuum, from mild personality traits that may crank up in some circumstances (especially under stress — hence neuro-endocrinology variables) to conditions that are totally and permanently destructive for the sufferer (and yes, on the extreme end it’s suffering) and for those around him or her.
4. We should be working to expand the range of choices available to those with “not normal” conditions or behavior. For some people, treatment will allow them to live a fuller, richer life. For others, the trade-offs between the benefits of being more “normal” will be outweighed by negative side effects or by the loss of some aspect which they value of the “non normal” way they experience life and interact with the world.

5. At the other end of the continuum, we should make it as easy as possible for caretakers (whether related by blood or assigned by the community) to obtain mandatory care that will mitigate the worst suffering from the condition.

To bring this down from the abstract, I’ll use a couple of anecdotes to illustrate those points.

The first is of a very high-performing, kind and generous man who discovered in his late 40s, when he was researching whether it was likely one of his children might be ADHD, that he himself fit a classic profile of symptoms. So he’s been on several different medications for the past decade. He’s still high-performance, but life isn’t nearly the strain it used to be. He doesn’t have to use as many tricks, or work quite such an irregular schedule, to make up for his concentration difficulties. In fact, he didn’t know that he had concentration difficulties — he thought that he was “normal” and has been delighted to find he was wrong and learn what “normal” could be. His impulse control — which was very low and was associated with angry, irrational outbursts and alcoholism — is much improved. He was on the mild end of the disorder, and he certainly never denied that he was morally responsible for his anti-social and self-destructive behavior. But he was carrying an unnecessary burden.

The choice of the mediation is a wonderful blessing for both himself and his family. People who would dismiss his “non-normal” ADHD behavior as moral weakness have no empathy. People who would celebrate his “non-normal” ADHD behavior as a heighted version of a variable personality trait, and therefore condemn “medicalizing” humanity’s wonderful diversity, are simply cruel romantics. He’s a moral agent — give him the choice as to how to live his life if it can, in his terms, be lived better through the wonders of modern chemistry. And don’t condemn his choice, whether to live with or without medication.

The other example is tragic, but one that has become all too familiar in the last thirty years — a man who had been a brilliant but erratic, and sometimes mean and violent, child, and who had several psychotic episodes as a teenager. As he grew older, he went from one new situation after another — sometimes dropping out because he couldn’t manage social interactions properly (like getting kicked out of Marine boot camp), sometimes because he’d have another breakdown. By the time he was in his 30s, he no longer could sustain social interactions well enough to be able to get and hold even the most menial job. Throughout, his family had provided financial support, a home when he’d wind up on their doorstep broke and thrown out of a dorm or an apartment, and whatever medical help they could occasionally persuade him to get (by this point he’d been diagnosed as schizophrenic but they couldn’t force him to receive treatment). By the time he was 40, he was literally living under bridges and doing drugs, just clever enough to keep food in his mouth through petty pilfering, panhandling etc. The family would only hear from him when the local police (who knew him well and only picked him up when things were seriously out of hand) gave him a phone to call someone to bail him out on some disturbing-the-peace charge.

Only when his condition deteriorated to the point that he was suffering frequent halucinations and playing with very large, very sharp knives was the family able, with enormous effort and terrible emotional strain, to get a court order for him to be placed in a hospital for observation on the grounds that he was possibly a danger to himself and others. But once he was stabilized and released to a half-way house he chose to go off his meds and hightail it out of there. And so the cycle of misery — for himself, his parents and brothers, and those people who try to help him — will continue until the day he dies.

Is he morally responsible for his actions? When he’s not experiencing psychotic episodes, he cleverly sneaks, lies, cheats and steals, knowing the behavior is “wrong” but apparently without a sense of “guilt” acting as an inhibitor. He can assess and describe what his mental condition, both on and off medication, “feels” like and what he prefers, which some of the time is to be off the meds and always out of a monitored environment. Is he a moral agent who should be able to choose whether he receives medical treatment? At what point should the emotional burdens on his family be taken into account when we consider whether to treat him as an autonomous agent? Is it only when his behavior becomes a direct threat to the lives of others that our system should be permitted to intervene and override his freedom to choose?

I don’t have a clear answer. There aren’t any bright lines. But if we’re indeed concerned about individual freedoms, then we ought to be working to expand the availability of meaningful choices for those who fall outside of our “normal”. The more we learn about conditions that are “non normal” and how they might be “cured” — whether they are classified as “mental illness” or “neurological conditions” or other labels to be invented — the more meaningful will be the choices available to people who are subject to these “non normal” conditions.

So in our desire not to stigmatize or dehumanize people with “non normal” conditions, let’s not romanticize these conditions but keep looking for “cures”.

At the same time, while being sensitive to the importance of individual freedom, we should face up to our responsibiities for individuals whose “non normal” conditions are so extreme in the absence of help that they are a severe burden for themselves and those who care for them. Leaving “choice” up to those who suffer extreme versions of “non normal” conditions may make some of us feel we’re “protecting” individual liberties, but IMO it’s ultimately a cop out.Report