No One Will Know Why You Were Out; Or, Secret and Stigma

So. I went inpatient for 10 days. After my release, I took 30 days of medical leave from work on the advice of my attending psychiatrist. I start work again tomorrow, and, being a rational creature, I’m as anxious as hell. I feel guilty for having let the program down, and, yeah, crusader against stigma that I am, I’m tormented with self-consciousness about having had a bout with a mental illness.

I know, I know, it’s a perfectly legitimate affliction, just as real as diabetes or cancer, blah-blah-blah. I have nothing to be ashamed of. Decent people will feel sympathy, and anyone who doesn’t isn’t worth my contempt. And so forth. I know this advice because I’ve been here before. In graduate school and while teaching I created my share of scandal. I lived it down then, and I can live it down now.

Also, I know this advice well from having ladled it out to others. I remember once in group therapy scolding a woman who had been a prominent leader in the community before she became addicted to opiates and attempted suicide. She was mortified at the idea that people would laugh and sneer, and that she might never regain her previous professional standing. I listened to her concerns, acknowledged that her case was special, and especially difficult. Then I told her what I believe to be the hard truth:

People will laugh. People will sneer. You will lose friendships and professional opportunities. On the whole, people will feel less sympathy for you than if you’d had a stroke or been in a car accident. No one wants to be a living illustration of the principle that mental illness strikes people of all class backgrounds and levels of education. You have two choices, and they both suck. You can either tell your story calmly and boldly, or you can creep around and let rumor do its work. In the end, the results may be the same. Some people who you trusted will disappoint you; others who you feared or disliked will amaze you. Mostly, it won’t come up. You’ll come back without fanfare, and most people will confine their comments to moments when you’re out of the room. You will survive, and it will be both easier and harder than you thought it would be.

I’ve lived this again and again, but the usual gap between what I know and what I feel remains. And some people’s well-intended efforts to cover for me still infuriate me beyond measure. After grad school I cut off a friend of 12 years when I found out that he had lied to my dissertation director during one major hospitalization, telling her that I’d collapsed from hunger. Apparently in his mind it was less shameful to have an eating disorder than to be bipolar.

In the end, the truth is easiest. In my ideal workplace, the program admin would send out a one-line email saying that I’d been hospitalized for depression. If I’d been in a car accident or had lost a parent, management would notify everyone briefly and ask for their understanding. Since it’s shameful to be mentally ill — right? — my absence will go unexplained, and unless I send out that email myself, I’ll return to the weird silence that tends to surround a mystery. Rumor will fill the vacuum.

No wonder I’m dismayed, then, when people try to reassure me by saying, “No one will know why you were out.” Actually, I’d rather people knew the truth. As it is, secrecy will tend to spread stigma, and I’m not such a raging activist that I’ll spend my first two weeks back at work launching preemptive strikes against prejudice. In the end, it’s another social puzzle that I feel ill-equipped to solve. It’s one of life’s more irritating ironies that when anything horrible happens to you — when you’re raped, bereaved, crippled, whatever — you will have to devote tremendous energy to helping other people feel comfortable about it.

I do feel better now.

Love to all.

Is It OK Not to Tell Some People That I’m Manic-Depressive?

Will opening that door illuminate your relationship, or will it simply blind others?

Over the last few days, I’ve been getting to know an intriguing couple that I met at a party last week. The lady has just started grad school in English Lit, and she’s quite a bit younger than the gentleman. I’m inclined to regard this indulgently, since when I was her age I consistently and deliberately sought out much older men. I feel a bit protective of her because she reminds me of myself at that age. In short, I liked them both immediately, and wanted to deepen the acquaintance.

(Those of you who know me are thinking, Wait, back up — since when is a mouse like you going to parties? It was a very small party, and it’s the first one I’ve been to since grad school. And I have been hypomanic, which makes social situations effortless, even fun.)

The night we met, I didn’t mention that I’m bipolar; it didn’t come up. After the party, once I’d made plans to get together with this couple, I thought, Hm, I suppose I should come clean. I found myself resisting, however. Eventually I decided not to tell them, and went so far as to remove any books about bipolar disorder from my bookshelves before having them over. As I was stowing the books in one of the upstairs closets, I thought, well, I’ve crossed the line from omission into deception. After some consideration, I concluded that that’s acceptable, even that it serves a higher good.

Most bipolar people do struggle with the issue of coming out. Many people who aren’t bipolar have conditions that affect their relationships and identity, and that involve a coming-out process. It might be interesting, therefore, to review my reasoning.

1. Some things really are private. It’s important that I tell everyone to whom I’m close, because whether I like it or not, my being bipolar has a huge impact on my friends, family, and partners (something to investigate in these pages eventually). I certainly wouldn’t try to hide it indefinitely. If the friendship deepens, I may rely on them to watch and judge my symptoms. Like anyone, I need the people around me to tell me when I’m exercising poor judgment or mistaking being an overbearing blowhard for charm and wit. It’s not reasonable to expect this from relative strangers, and I have the same need of privacy and right to it that anyone would claim.

When you tell someone about a deeply personal problem, you deepen intimacy with them. That cuts two ways. It’s often a relief to peel off the facade, and it can be a genuine pleasure simply to get to know people better. Without a doubt, there’s a point in every relationship where concealing certain facts requires a series of omissions that limit intimacy sharply. At the same time, anyone who’s been the recipient of creepy TMI (too much information) will testify that there’s a stage in any relationship when this constitutes a violation.

Here’s an extreme (though funny) example. Once, during a first date, a gentleman not only told me that he’d been sexually abused by his older brother, but detailed his prostate problems and a distressing digestive issue. All of this came out in two hours, primarily over dinner.

Now, my family is in the habit of sharing even very private medical problems, and I’m perfectly comfortable with that. There’s no point in being mysterious about such things, and sometimes it’s helpful to get advice. But the prostates of strangers fail the “breakfast test” that The New York Times adheres to in its crossword puzzle. That is, since many people work puzzles at breakfast, the editors refrain from relying on nauseating or improper words and allusions.

In fact, TMI is unattractive for several reasons. Among other things, when someone lets you in on such secrets, it becomes clear that he is indiscreet, to put it mildly; he must also need an audience desperately, which is unattractive.

I think we avoid people who raise red flags, not just because we’re worried that they’ll be high-maintenance, but because we think, “Christ, if she’ll parade that out on the first date, then what sort of horrors is she saving up for later?” Everyone struggles, and every relationship is high-maintenance at times. That’s OK. It’s not OK to demand extensive support and sympathy where intimacy cannot reasonably exist.

2. I am tired of people, including myself, constantly seeing me through the lens of my disease. I admit that this drove me more than any other reason. It seems like everyone knows that I’m bipolar, since I am open about it even at work. This is for the best, but certainly there are days when it grates on me to have every person I run across ask, “How are you?” in that special tone that people trot out when they’re walking on eggshells. We preserve social facades, not just for others’ comfort, but because doing so allows us to experiment with different roles and behavior. That’s an enjoyable aspect of social interaction, and I believe that it’s natural and healthy.

3. It’s important to fight stigma, but I don’t have a responsibility to do it everywhere and all the time. In addition, one powerful way to fight it is to present my charming self for several months, then spring my secret on people. That way they have a chance to get to know me without pathologizing my every move and utterance.

That’s what I did with my last boyfriend — a first for me — and I think it’s part of what made the relationship possible. And I almost lost an important and ongoing connection by saying too much too soon. By now the gentleman knows that I’m responsible, even stable, but early on my illness gave him the heebie-jeebies. He later told me that he wished I’d saved that fact for later, since his negative but reasonable reaction nearly ended a relationship that’s become important to both of us.

4. Typically people experiment with different sorts of honesty during different phases of their lives, depending, among other things, on how much their identity is tied up in an issue. In my 20s I felt compelled to to tell every serious boyfriend that I’d been raped, since it would certainly affect our sex life. Now that it doesn’t, I often don’t think to mention it. It has simply lost relevance. (For which I say, Hip-hip hooray! People can overcome trauma!)

That’s my reasoning. Close relationships can’t reach maturity without absolute honesty, but in the absence of discretion they can’t germinate. In a like regard, I don’t have a moral responsibility to educate people every time I draw breath to speak, and eventually a fact may reach its expiration date.

I’d be interested to know what others think, and what sort of experiences they’ve had with omissions and TMI. Please do comment.

Love to all.

Mind Freedom International Distributes the National Council on Disability’s Provocative Report on Civil Rights for People with Mental Illnesses

I found this report, From Privileges to Rights: People Labeled with with Psychiatric Disabilities Speak for Themselves, both valuable and troubling. The NCD held hearings in which they specifically listened to consumers of mental health services, and drew the following 10 conclusions, discussed below.

My initial reaction, I admit, was impatience. I’m inherently suspicious of activist language such as “people labeled with with psychiatric disabilities,” partly because I come from a profession that displays a naive faith in the power of such phrases to erase stigma. I spent much of my 20s playing language police — insisting that people who have been raped be called “survivors” and not “victims,” for example, or that we use the inelegant phrase “people with disabilities” instead of “disabled people” — and experience teaches me that such insistence needlessly intimidates people with no direct experience of rape or a given disability. Instead of asking direct questions and learning about mental illnesses, people tend to lapse into tongue-tied silence out of fear of transgressing some linguistic boundary. I’d rather create an atmosphere that encourages people to ask questions, even if their phrasing is flawed.

I’m also uncomfortable with the notion that I’ve simply been “labeled.” Of course, diseases are partly socially constructed. The treatment offered varies wildly from culture to culture, and these treatments are unquestionably more or less effective. In fact, I agree with the recent article in The New York Times that suggested that American ways of understanding and treating mental illness may create more stigma and suffering than they erase.

At the same time, the most disabling mental illnesses — schizophrenia, manic-depression and major depression — have been observed in most extant cultures since before the birth of Christ. I don’t think that these sicknesses are simply biological, but neither are they mere labels that would disappear if we stopped applying them. The very title of the NCD report riled me, then.

Next, I read the Executive Summary and core recommendations. Again, I found myself in immediate disagreement. The first recommendation begins, “Laws that allow the use of involuntary treatments such as forced drugging and inpatient and outpatient commitment should be viewed as inherently suspect, because they are incompatible with the principle of self-determination.” That’s a nice sentiment, I thought, but serious mental illnesses prey on judgment, will, and the ability to perceive reality. As I’ve said before in this space, the concept of self-determination may well not apply to us at all times.

Also, I worry that this insistence on self-determination feeds into the worst tendencies of American culture to offload citizens’ illnesses onto an already-weak family structure. David Karp’s The Burden of Sympathy, which I reviewed in this space, eloquently addresses the tragic consequences of this approach. We have, as a culture, abdicated responsibility for people who are ill, most notably by depriving them of quality, accessible medical care. This follows directly from our insistence on total independence and self-determination.

So, yeah, I found myself struggling with this report from the outset. Here’s the funny thing, though: When I read the actual testimony, I began to waver. Here are the words of one former patient:

The unit structure is based on privileges and punishments, which are referred to as consequences, since they maintain these are not punitive. [The structure] will not allow any kind of privacy whatsoever, and everything is a potential treatment issue, including nail-biting and not making one’s bed. They maintain control through humiliation and fear of humiliation.

Too true. These aspects of psychiatric hospitalization are undeniable, maddening and unnecessary. I’ve never been restrained or forcibly medicated, but I’ve often seen it happen in totally inappropriate circumstances, both in the snake pit of a public hospital and in exclusive private settings. Nurses and aides pathologize perfectly natural and even healthy behavior. A trivial example: a nurse once recorded the following in my chart: “Patient engaged in writing behavior.” God forbid you should express healthy, righteous anger. A less trivial example: When I refused to eat meat (I was a vegetarian), a nurse threatened to “ram a feeding tube up [my] nose.” In fact, when I’ve been subjected to forced treatment, it has never benefited me, and has often done significant harm.

Even so, a part of me thinks, “Yes, but some people refuse treatments that they need, and they are in no condition to give informed consent.” For instance, I remember a young woman in a public hospital who became floridly psychotic and posed a danger to other patients. I was grateful when they restrained and medicated her, and I think it was necessary.

Along these lines, I’ve noticed that no one who lands in a mental hospital thinks they belong there. Absurdly, each patient thinks that her case is an outrageous mistake, and that she doesn’t belong in the company of this pack of nuts. In other words, we can see each others’ pathology clearly, but we typically have very little insight into our own.

In the end, though, I return to the core of my own experience. Coerced treatment has never helped me, and I’m not sure that it benefits anyone else, either. I think back on my first hospitalization, which was at a swanky clinic for women with addictions and eating disorders. I had neither, but my shrink persuaded me that “they know how to feed people.” You could say that. The young anorexic who shared my room was very, very ill — she envied my weight, which was an unenviable 92 lbs at 5’6″. The staff’s approach? At each meal, a nurse was assigned to watch us and record what we ate. Patients were then forced to wait in public for two hours so that they wouldn’t purge. Can anyone seriously argue that someone with an eating disorder would benefit from this treatment? If anything, it was fiendishly designed to drive her deeper into rebellious self-starvation, and to reinforce her fear of food.

These musings lead me to the following conclusion: Forced treatment can be a good idea in principle, but in fact it rarely works as intended. Instead, it encourages nurses and aides to abuse the absolute power they enjoy over patients. Psych aides, in particular, are poorly paid and usually receive no special training. They act out of prejudice, fear, and, yes, a perfectly human desire to punish and control “bad” patients. Restraints, forced medication, and solitary confinement make their jobs easier, and prejudice allows then to justify mistreatment of patients.

(Incidentally, I do feel sympathy for psych aides — their working conditions suck, and despite this, some treat patients with genuinely healing compassion.)

Well, it’s time to get ready for work, and I’m still on the first recommendation. I’ll return to this report later.

Love to all.

A Rousing Speech Agitating for Humanity, Democracy, and Disability

Yesterday at work I gave my presentation about communicating about disabilities. It went very well — there were a lot of good questions and comments, and it was a lively group with a most dynamic manager. I sat through the rest of their staff meeting and came away thinking, Damn, I’d like to work for that organization. Their management is that cool.

After the presentation, I started to think about the next one, which I mentioned long, long ago in this space. In February I will be talking to an all hands for my product line. The program manager asked me to address a specific question: All other things being equal, why should I hire someone who is disabled who will need accommodations? The question is blunt, but, I think, fair.

At my company we talk a lot about the business case for diversity, and the party line is that a diverse group is more creative and better able to solve problems. (I almost wrote, “to problem solve,” an icky corporate formulation. I have this terror that I will spontaneously speaking and writing in nothing but Corporatespeak, and that I won’t be able to stop.) To be honest, I don’t know if that’s really true. As I wrote before, I’m not sure that female engineers are any more likely to come up with a fresh approach to a knotty problem than men are. It seems to me that it would make more difference where and how they’d been educated and what sort of work experience they had. That seems to lead to the gloomy conclusion that, all other things being equal, you should shun someone who needs to take the occasional Mad Day.

That’s wrong, of course. As I wrote in my previous post on the subject, disabled people bring a lot of unique qualities to the table, including resilience and determination. There’s more to it, though. I’ve worked in this metrics-driven environment for so long now that I’m a little ashamed to suggest that perhaps intangibles count as much or more than that which can be measured. I believe that it’s true though.

Take two average departments, or sections as we call them at my company. Give Group One a dynamic manager who is cheerful, treats workers with trust and compassion, and willingly works alongside them when necessary. This manager acknowledges her employees’ expertise, and she actively encourages them to experiment, make mistakes, and thereby devise true process improvements.

Over Group Two, place a crappy manager — not an outstanding tyrant, but just a technocrat who works poorly with people. Manager Number Two does not trust her workers — she insists on checking their work, and is incensed at every typographical error. She doesn’t think to compliment them when they do well, but never fails to criticize them publicly for mistakes both small and large. When they come to her with questions she huffs and rolls her eyes; if they present her with a problem and ask for the resources to solve it, she flushes red with sheer irritation. If one employee slacks off, she berates all of them in staff meetings, thereby giving the hard workers the impression that she sees them as one undifferentiated mass.

In our little mental exercise, award Manager Number Two with every sort of technical expertise, and a solid background at the company. Make manager Number One a relative rookie who is new to the industry. I still predict that Group One will always outperform Group Two. They’ll suffer less turnover, take fewer sick days, and enjoy higher productivity. Group Two will surf the internet every time their manager’s back is turned, and they’ll use up every sick day they have and then some. They’re probably more likely to get legitimately sick, too. Certainly they will hate their jobs and view the company that promoted Manager Two with suspicion.

What does this all have to do with disabilities? After all, probably plenty of disabled people are lousy managers or slack employees. My point is this: The intangible and immeasurable always matter, and they will out in the end. When the metrics come down, Manager Two will blame her lazy employees and say that it’s impossible to get good help these days; Manager One wisely understands that a section is only as good as its section head, no matter how experienced or conscientious the individual employees may be. At the end of the day, even though all of its advantages are intangible, Section One will prosper and Section Two will decline.

Here’s the thing: We’re hired because they need people, not machines or trained pigeons, to do our jobs. They need us to apply our judgment, empathy, compassion, wisdom, and creativity — our humanity — to every aspect of our work. Of course, along with those excellent qualities come our shortcomings. We take sick days. We get repetitive stress disorders if we don’t take regular breaks. We get bored and our minds wander. And, yes, some of us may need to take the occasional inpatient Mad Break. You can accept this fact and accommodate your workers when they need it, or you can treat human qualities as individual weaknesses and watch your workers stream away to join the competition. In a competitive industry — and ours is very competitive — it really does pay to treat your employees like full human beings. That’s true whether or not you can quantify the benefits.

The business case, then, is not for diversity, but simply for humanity. We all make allowances for each other all the time. In the end, the product ships, the cathedral gets built, the mural gets painted, and we create a little more of that odd product we call civilization. We do it because of our weak humanity, not in spite of it.

You can build a civilization using slaves who you treat as disposable bits of machinery, or you can encourage everyone to take responsibility, throw themselves into their work, and take a bit more of what civilization has to offer: leisure, security, comfort, happiness. The former is a dictatorship; the latter is a radical democracy consisting of citizens, not slaves.

Hm. I like that. It’s a bit over-dramatic, perhaps, but I really do believe that it’s true.

OK, enough. I have to go to the grocery store to buy roses.

Love to all.

Mental Health Parity, Depression as Specialness, and the Difference Between Mental Illness and Terrorism

In all the excitement over heath care reform passing the House, it’s easy to overlook another huge (if equivocal) step: the mental health parity law that will take effect next year. The New York Times offers this sweetly naive guide to taking advantage of mental health care under the new system. I’m not sure that my advice would be any better, but, man, there’s something downright dewy-eyed about suggesting that we “be pushy” in asking for care.

A little background: the law requires that large employers offer the same coverage for mental health and substance abuse programs as they do for physical health. The practical results are twofold. First, many plans will remove arbitrary limits, such as caps on the number of appointments available for mental health care. My employer-provided health insurance will be doing just that, in fact. I haven’t checked specifically, but I wouldn’t be surprised if they’ve taken another common step, which is to throw up additional barriers to care, such as requirements for precertification. The Times’ advice on how to negotiate the system? Well, it’s sensible. Be persistent. Make those phone calls. Negotiate lower rates with your provider.

Unfortunately, when people are suffering from depression, anxiety, or chronic mental illness such as schizophrenia, it’s difficult if not impossible to take these steps. One book that I read on bipolar disorder (I wish I could remember which one) explained precisely why bipolar people are typically at a disadvantage when making calls to a customer “service” line: difficulties with short-term memory and executive function make it hard for us to organize our thoughts and follow a complicated, emotionally charged discussion of the sort required to get precertification. Your hatred of calls to 800 numbers is not mere whim or laziness — we are actually at a disadvantage when it comes to these sorts of conversations, and it’s natural that we should dread and avoid them. Thus it’s cruel — but not surprising — that insurers will require us to go through such an exercise before qualifying to receive help that we desperately need. Just another one of the sweet ironies of mental illness.

Over on Knowledge is Necessity, John McManamy considers a problem that we’ve all wrestled with: Is my depression pathological, or is it a fundamental part of who I am? Is there some sort of trade-off that is lost when we erase depression? I find myself thinking, Hell, no, there’s no value in depression. I want to pop that happy pill and dissolve this “deep” self. Of course, if a biotech cure for bipolar disorder were available, I would happily serve it to any children I had with breakfast; some people would consider this one step in genocide of a special population; I would consider it a mercy. I can very much understand the first view, but I would definitely rather be healthy than special, and I wouldn’t wish this sort of specialness on any child of mine.

That last was part of a wide-ranging discussion I had with my parents on Saturday, a conversation that covered everything from my Dad’s advice on how to handle freeway tailgaters to how we cope with choosing the slow line at the grocery store to why micromanagement is so agonizing to the managee. I wish I had a transcript or a YouTube video for you all — perhaps we’ll record future conversations for podcasting purposes.

McManamy recommends Therese Bouchard’s blog Beyond Blue, and, boy, so do I. She’s focused on wellness, but acknowledges the mourning process involved in accepting a chronic illness. It’s a good combination of reminiscence and practical advice, most recently on combating anxiety.

Philip Dawdy at Furious Seasons feels no empathy whatsoever for the Ft. Hood shooter, calling him a “loser” and a “domestic terrorist.” Hmm. I’m surprised that someone who covers mental health news so closely would fail to see the tragedy of Maj. Hasan’s situation. It’s easy to feel for the victims, and to be inspired by the courage of the first responder who ended the disaster at the cost of an injury to herself. To me, however (and feel free to spray vitriol at me for this position), if we hope to end the War on Terror more successfully than we did the War on Drugs (remember that?), then we need to understand how trapped and desperate Hasan and many other Islamic people feel both in the U.S. and abroad.

Hasan believed that he would be sent abroad to fight people of his own apparently deeply held religion, perhaps at the cost of his soul. Setting aside souls for the moment, it’s not a bad exercise to imagine how you would feel if you had to fight against American troops, and if that war were promoted precisely as an ideological battle against, say, capitalism and democracy. Not so easy, hm? Sure, it’s a volunteer army and he may have been able to claim conscientious objector status, but do you think that in his position he really got accurate or helpful advice about how to do that? In all honesty, I think that his situation was genuinely tragic. Obviously, shooting up Ft. Hood was not the answer. But imagine how trapped he must have felt to even consider such a horrific step.

In the end, I believe that this is how the debate will go surrounding Hasan’s act, if there is, indeed, a debate. Commentators will paint him as either “crazy” — i.e., entirely irrational and inexplicable (unlike “mentally ill,” which implies a diagnosis and an effort to understand) — or a “terrorist.” Both labels are designed to allow us to ignore the very real contents of his madness and disaffection, and to avoid considering how the institutions around him shaped his actions. A professor of mine at the University of Arizona who studied assassinations points out that when we don’t like assassins’ politics, we brand them crazy and ignore the crucial social and political dimensions of their acts. This prevents us from seeing and perhaps correcting the brutality of our own institutions and political discourse. We wouldn’t re-enslave Black people as a result of understanding why Boothe shot Lincoln, but such an understanding will prove a much more effective way of preventing domestic terrorism than simply branding terrorist acts as crazy.

To bring things to a more concrete level, I’m surprised at Dawdy’s stance because labeling Hasan as a crazy loser tends to worsen the stigma surrounding mental illness. If we reduce his act, with its undeniable political elements, to “madness,” then we obscure crucial facts about both mass murder and mental illness. The facts on the latter should be familiar to all of us: insofar as anyone has bothered to measure, the mentally ill are no more likely than the general population (whatever that is) to commit violent acts. To suggest that Hasan was just crazy is a very real insult to the mentally ill.

At the same time, mass murder may be difficult to explain rationally, but it is not mere madness, with no logic or reason behind it. Quite the contrary. Hasan’s logic is horrifying, but hardly difficult to follow. By refusing to follow or acknowledge it, we refuse to see ourselves, our weaknesses, and our institutions more clearly.

Enough of that. I realize that this whole discussion will be offensive to many of you, and I apologize for that. I do feel strongly, though, that this point ought to be made somewhere, by someone.

Writing and Distributing a Crisis Plan

I knew that I’d seen a good crisis plan somewhere — I had a PDF of an excellent one on my desktop. Turns out it’s from the Depression and Bipolar Support Alliance’s online toolkit, Facing Us. You will need to register for a free account and go under “Wellness Plan” to find and download it. It’s definitely worth it for this excellent resource alone. If the form seems valuable to you, I would suggest filling it out and giving a copy to your closest associates. The same goes for the list of warning symptoms supplied there.

I’ve filled out the Wellness Plan, too, but I admit that I don’t use it — I love to fill out wellness forms online, and am less enthusiastic about actually following through.

I’ve probably said this before — in fact, I know I have — but there are so many resources on the DBSA home page that it’s almost bewildering. My favorite is the Advocacy in Action section, where you can register to vote and get updates on current legislation and tips for rooting out and fighting stigma. It may simply be where I am with my illness, but I find it tremendously empowering — an eminently hateable word, don’t you think? — to get their infrequent emails and act on them by writing my representative and urging all of my friends to do so, too. (Whether my friends like it is another matter.) I like to think that my impassioned letter helped the Mental Health Parity Act passed, and that the screed I sent to the Obama transition team had some tiny influence on the legislation that’s Congress is currently piecing together.

So, yeah, emergency plans: consider making one and distributing it.

Love to all.

A Letter to The New York Times about Life with a Disability

I sent this letter to The New York Times this morning:

I agreed for the most part with your article, “Why We Must Ration Health Care.” People are horrified by the notion of rationing when it’s done on the basis of facts and conscious choice, but accept it at the hands of profit-driven insurance companies. However, I found one aspect of the article disturbing. As a person with a disability (bipolar disorder), I was revolted to see that the author would place a lower value on the lives of disabled people based on polls of people without disabilities. Contrary to the prejudices and irrational fears of their non-disabled peers, disabled people lead full, rich lives. When considering this issue, it’s important to remember the consequences of this shameful attitude in Nazi Germany, where disabled people, including the mentally ill, were among the first victims of genocide. Any decisions about the value of life with a disability should be made by the disabled, not by people with no knowledge of the reality of how we live and thrive. I support single-payer with all my heart, but I do fear this potential consequence of mere utilitarianism.

I think we need to correct these prejudices wherever we see them. Leave a comment if you have anything to add.