Saturday, June 27, 2009

Madwoman Exercises a Civil Right

Madwoman Exercises a Civil Right 1996

(Still true today? Up to you.)

It isn’t like other illnesses, people say. True. People who are blind can write off their readers and dressers, the people and things they need to get to work are tax-deductible. Can you imagine a similar right for mentally ill people, someone to help them - probably on a temporary basis - to get to work? I can. My question is: can you?

The friends and loved ones of deaf people have installed TTD lines on every major phone system in the nation, have founded a college, have sat in courtrooms for years to get their significant deaf others jobs. Can you imagine a college for us?

It might be cheaper to send ambulettes to the homes of the orthopedically disabled than to design and operate special chair lift buses. But that would be too socially isolating, would make them feel different. So there are chair-lifts on every New York City bus and passengers don’t mind giving up a seat or waiting as the driver helps them aboard.

How many blind and deaf people are there? It doesn’t matter - we put Braille in the elevators and the ATMS, and volume control on pay phones because they are worth it. How many people use chairs? Again, it doesn’t matter - every new building in the nation must have wheelchair access and a big bathroom stall. How much does that cost? It doesn’t matter. It’s important.

The mentally ill are making progress. Pete Domenici, who has a mentally ill daughter, discovered his insurance isn’t paying her bills. Insurance for mental illness caps at about $10,000 a year in most states; cardiac illness, by contrast, caps at about $1,000,0000. Insurance parity has carried in a few states but is far from commom.

Seeing a loved one suffering from a “physical illness” is stressful, but not a moral failing on the part of the sufferer. It is distressing to see someone seize or throw-up, but usually not reason to avoid them afterwards. It is wrong to abandon a friend with AIDS dementia, a wife with cancer (it is done, but frowned upon). The Diagnostic and Statistical Manual of Mental Illness stills warns practitioners to carefully distinguish between Axis I diagnoses and organic brain disease. “Oh, she was angry and irritable because she had a brain tumor.” We understand, it’s all right. After all, anyone could get a brain tumor, and as the AIDS educators have worked so hard to point out, anybody could get AIDS. Anybody - even Superman - could wind up in a chair

But mental illness is different. It’s not like other illnesses: the basic norms of social conduct and communication are violated. It is unpredictable, hard to take. And there is always the suspicion, even among the most enlightened, that “they” bring it on themselves. 80 percent of Americans, according to a recent survey, don’t believe mental illness exists. Thomas Szasz (M.D) calls it bad interpersonal game playing, an issue of morals, bad habits, cowardice, not the realm of a scientist but of a priest. We are possessed by the devil, undisciplined, over-react to stress, practicing learned helplessness. It’s considered a triumph that today, probably, the majority of direct-care mental health workers, who undergo little or no training for their work, don’t think their mentally ill clients are David Berkowitz.

We are difficult patients, the mental health field keeps telling us, frustrating and difficult. Recovery is slow, rare. On top of our neurobiological disorders, the reality of which some professionals have come to accept, there are the behaviors, probably common to most people under stress and in pain, but most frequently diagnosed as part of treatment for the mentally ill, and with which we are often permanently labeled: arrested development, self-destructive, manipulative-exploitative, masochistic, and just plain selfish. With this baggage, until recently, only a few religious orders wanted anything to do with us at all. It takes very special people to work with the mentally ill, we are told. The average person is comforted by that thought as he stops seeing and calling a mentally ill friend, feeling far less guilt than he would avoiding a friend with a “physical illness."

Even the recovering mentally ill are somehow too disturbing to be around, and tolerated only if they never mention their illness and treatment. Our leadership, our strongest potential spokespeople, the functioning mentally ill, the recovering mentally ill who work and have families and look “normal,” who could be a bridge for us to the public at large, are counseled by doctors and friends not to mention the fact of their illness. It’s often good advice. Like gay people of past decades, the risks of coming out are too high - shunning, lost promotions (remember Thomas Eagleton?), the social burden on children. So these hidden mentally ill, who, under severe handicap, have fought serious, often devastating illness to raise families, hold jobs, and contribute to society, are silent. What is the cost of this silence?

When a person who is blind or in a wheelchair eschews disability payments and comes to work every day, we admire them. One of the finest things about Americans is our admiration of people who overcome obstacles. Why is this admiration denied mentally ill people?

A few years ago, a group of visually impaired people and their loved ones picketed a TV station because one of their sitcoms showed a blind man in a store gleefully breaking property as he unsuccessfully navigated the aisles with his cane. That kind of depiction isolates us, said the protesters, makes people think we can’t live and work in society. The salient point here is not the first amendment issues. It is the firm conviction that visually impaired people deserve the right to live and work in society. For the mentally ill, the jury is still out.

Mentally ill people are often difficult, there is no doubt on that score. Sick people tend to be difficult. Being ridiculed and shamed for having an illness makes it worse. And of course the medical bills, only fully covered if you enter the disability system, don’t help. Accomodations for the mentally ill, say the ADA experts, are difficult. Let’s face it, recent court rulings have said, if you are sick enough to need accommodations, you are probably too sick too work. Yet the thousands, possibly millions of mentally ill employees who have learned to accommodate themselves, who have successfully hidden their illnesses behind more accepted reasons for occasional sick leave, prove this wrong (but try asking about psychiatric coverage on a job interview).

There are millions of us, everywhere. We sit next to you at the office and listen to you joke about crazy people; if we were to make such jokes about your diabetes, you would be appalled.

We may see insurance parity in our lifetime. The time may come when a mentally ill person might get tax write-offs for services he or she needs to successfully work, but I doubt it ( Special transportation? A dresser? Are you crazy? Well, yes...). Will we ever see an America that says - maybe, just maybe, this could happen to me? As long as our illness is a matter of bad habits, I don’t think so. As long as our symptoms, expressed behaviorally, are viewed as iconic and communicative - probably not.

Perhaps it is the knowledge that people under stress can and do “break down” that makes us so frightening. Perhaps it is the very ubiquity of our illness, our common human susceptibility to emotional pain makes people shun the mentally ill - after all, unlike cancer, it truly may be catching.

As I am writing, hundreds of cyclists are returning to New York from a Boston AIDS cyclathon. Princess Diana is being mourned - the television shows her embracing AIDS babies, urging others to be unafraid of them, teaching the public that these children and all people with HIV need and deserve human contact and love. Perhaps the mentally ill, including those denied jobs and apartments and left homeless, will one day merit a royal hug too. In the interim, equal medical coverage and the right not to hide our disability in the work place and society at large will help.

We, the mentally ill, may not be that different from you , with our mutant genes and imbalanced neurochemistries and our illnesses that mimic the temporary disorders of thought and emotion that other people experience. We - some twenty to forty million Americans - drink grape soda, buy television sets, select HMOs, and corporate America might wake up to that fact and profit by it. If we are not different, then like any of you, we need human contact - the formal and informal social networks that keep all people sane, and without which any human being regresses. We simply are looking for the Braille in the elevator or a door handle we can reach to show we are welcome.


Violetwrites said...

I know exactly what you're talking about.

Anonymous said...

This is fabulous and timely. More people need to see it.


ramesh said...
This comment has been removed by a blog administrator.
Anonymous said...

yes! and to the caretaker spouses too!

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