My Experience Only. YMMV.

Posts tagged ‘stigma’

Discrimination: Mental Illness and Disability

A while back I wrote a post called “Another Word for Stigma” (http://wp.me/p4e9Hv-oz), which was about the new-to-me term “sanism” and how it set up a dichotomy between the sane and the insane. While sanism may have been intended to reframe the discussion about mental health issues, I said, “We already know that stigma exists surrounding mental illness. We don’t really need the word ‘sanism’ to redefine it. Or to pit us against one another.”

When applied to mental illness, “ableism” is another word that subtly reinforces stigma. It implies that, unlike the neurotypical population, those of us with mental disorders are differently abled, mentally challenged, or – dare I say it – disabled.

Many of us – including me – have applied for disability and many – including me – have been turned down. Despite that, many of us live with varying levels of ability and disability, which are nearly impossible to see and therefore to prove.

When I applied for disability, I was in the depths of what would once have been called a nervous breakdown. I had mental deficits, emotional instability, trouble performing the skills of daily life, inability to hold a job – certainly at the level that I formerly had, or possibly not at all. My thoughts were disordered. My life was disordered. I got by only with the help of a caregiver – my husband. If that’s not at least partial disability, I don’t know what is.

By the time my claim was denied and my disability lawyer was prepping me for a hearing, however, I was, if not well, at least better. I had found part-time work that I could do at home, which provided as much income as disability would have. At his suggestion, I dropped my claim. Perhaps I shouldn’t have, because the lack of medical benefits has been a constant difficulty.

So, am I disabled? I would have to say, partly. I still cannot hold a full-time job – certainly not without accommodations – and my caregiver (still my husband) has to help me with many of the tasks of daily living.

The notion of requiring accommodations leads us to the subject of discrimination. Employers are required by federal law to provide “reasonable accommodations” to persons with disabilities, according to the Americans with Disabilities Act (ADA), for conditions including “a physical or mental impairment that substantially limits one or more major life activities,” and also to “a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.”

“Reasonable accommodations” are not defined for mental disabilities, but examples of accommodations for other conditions include modifying work schedules, as well as leave flexibility and unpaid leave. But just try telling a prospective employer (as you are entitled to do) that you will need flexible hours to accommodate appointments, panic attacks, or other phenomena; or asking someone you work for to give you unpaid leave for a hospitalization. I think you know the result as well as I do.

One problem is that these forms of discrimination – which is what they are – are damnably hard to prove, as onerous and unlikely as being classified disabled in the first place. Yet the protections against these forms of discrimination are defined by law. But how many of us have the wherewithal to challenge them, prove our cases, and get by while waiting for the results of a lawsuit?

Even the act of asking for an accommodation opens us to yet another instance of stigma, and the outcome depends on the individual knowledge and understanding of an employer, when it should follow the law. We approach employers and prospective employers hat in hand, asking for – but not expecting – to get the treatment that is legally, rightfully ours.

In these days of rampant discrimination against people of any number of races, religions, national or ethnic origins, sexual orientations, and disabling conditions, our voices may not be the first to be heard. But we, the neurodivergent, the mentally ill, the emotionally disabled, the psychiatric patients, and our caregivers and loved ones deserve to be free from the effects of ableism, discrimination, and stigma.

Let’s speak up, keep educating about our issues, and support each other in banishing stigma, ending discrimination, and putting ableists on notice that we will not shut up until our rights are acknowledged.

 

Another Word for Stigma

Stigma concept.Recently I was reading an article online and came across a word I had never encountered before: sanism.

I don’t like it.

Oh, I realize that it’s meant to go along with all the other “isms” – words that point out how the world decides who is worthy of respect, then campaigns for the rights/recognition/understanding of the disrespected. There are lots of “isms,” some familiar by now, and others that just never quite made it.

racism

sexism

nationalism

feminism

elitism

ethnocentrism

ableism

lookism (This one didn’t catch on. It means that pretty people are advantaged.)

colorism (Not quite the same as racism, it refers to the idea that lighter shades of brown skin are preferable to dark ones.)

Not all of these terms are equally adequate. Sexism, for example, refers to the divide between male and female, and implies (though does not call out) heterosexism in particular. It ignores the experience of people with other kinds of gender expression – genderfluid, pansexual, and trans, for example. It probably should be “cis-sexism,” but then everyone would spend an hour explaining that when they tried to use it.

Ableism is another term that has problems. In its basic form, it contrasts the able-bodied against the disabled, or rather points out that the rights and even the humanity of the disabled are discounted. I bet some of you are wincing at the phrase “the disabled.” Times change and terms change. Right now the preferred term is “person with disabilities,” though we have been through other versions – “differently abled,” “physically challenged,” etc.

The general rule in these situations is to call people what they prefer to be called. But how do you know which term that is? Negro, Black, black, non-white, colored person, person of color, and probably a few I’m missing have had their day. And if you use Black, do you also have to use White? Many people do not understand the word Caucasian anymore, and certainly can’t explain why it means the same as white. Nothing you can say will satisfy everyone. Perhaps the best solution is simply to call everyone “Chuck,” or “Emily,” or “Mariko,” or whatever.

So. Back to sanism. My first problem is how to pronounce it. San-ism? Sane-ism? And if the latter, shouldn’t it be spelled saneism? Do we need a hyphen (sane-ism) to keep it from being mistaken for an unfamiliar religion?

But the real problem goes deeper than that. Sanism implies that there are two categories: sane and insane. If you’re not one, you’re the other (and discriminated against, but let’s put that aside for now).

Personally, I have a mental illness (bipolar 2), but I don’t think most people would classify me as insane. And there are many other people with OCD, PTSD, phobias, anxiety disorders, etc., who have difficulties because of them but are by no stretch of the imagination insane. Do we go back to the days when anyone with a neurosis was sane and anyone with a psychosis was insane? Does anyone still divide the world up that way, or has the DSM caught up with reality?

What, then, do we call ourselves? Non-sane? Not-sane? Mentally ill? Mentally challenged? Mentally unhealthy? Neurodivergent? Emotionally disordered? Nothing seems to encompass all of us. Nothing seems to work. But the “ism” suffix implies lining up two groups to make it easier to talk about the differences between them. It doesn’t always work perfectly – racism can be black/white, black/Asian, Hispanic/Anglo, etc. – and you sometimes have to define exactly what you mean.

Admittedly, the sane (able-minded? neurotypical?) have automatic, inherent advantages over whatever-we-decide-to-call-ourselves. Housing, jobs, even service in restaurants are weighted in favor of people with no psychiatric/psychological label or diagnosis.

But wait! We already have a word for that – stigmatized. Sanism sets up the contrast between those who consider themselves “normal” and those that the normal consider “abnormal.” In other words, stigmatized.

We already know that stigma exists surrounding mental illness. We don’t really need the word “sanism” to redefine it. Or to pit us against one another.

We have mental or emotional disorders. We are discriminated against – hated, feared, shunted aside, diminished, discounted, blamed, or avoided – because of that.

That’s stigma.

That’s what we have to fight.

Not “sanism.”

I’m Not Brave – I’m Stubborn

Don’t forget! March 30 is World Bipolar Day!

Kopf durch die Wand

One of my friends, who is overweight, recently told me that when she was at the gym on the treadmill, a stranger came over to her and told her she was “an inspiration.”

My friend felt insulted. She was working out for herself and for her health, not to inspire anyone else or to be taken as a symbol of I-don’t-know-what – perseverance? attitude? effort? hope?

I feel sort of the same way when people say that because I am open and public with my bipolar disorder that I am “brave.”

I’m not doing this because I’m brave. I’m doing it because I’m stubborn.

I am who and what I am, and I’m willing to reveal a lot of it because, frankly, I can’t hide it and don’t want to. I’m not average or typical. Not normal, mentally or emotionally.

I’ve always had a love-hate relationship with the concept of “normal.” Desperately wanting to appear normal, but knowing viscerally that I am not. Wondering what it’s like, but knowing that I’ll never know. Wondering what it even means, or what it means that I’m not. I haven’t found answers yet, and at this point I don’t think I’m going to. It’s probably a waste of my time to try.

So, if I’m outside the “norm,” which I am, I may as well admit it. And since writing is what I do, I write about it. I’m not doing this because I’m “brave,” I’m doing this because on some level I have to. I’m stubborn.

I’m stubborn enough these days to have made a sort of peace with the concept of “normal,” even though I still don’t understand it.

I’m stubborn enough to acknowledge my difference and give it its proper name – bipolar disorder.

I’m stubborn enough not to care when I say that and some people flinch or back away.

I’m stubborn enough to reveal things that embarrass me because they are part of me and part of what I’ve lived and lived through.

I’m stubborn enough to get tattoos proclaiming my status as “mentally ill” and using them to open conversations and educate others.

I have not come to embrace my stubbornness easily. I’ve tried to fake “normal” and hide my differences. I’ve gone to my shrink and just referred to “doctor appointments.” I’ve made Prozac jokes even though I was taking it at the time. (For this I am truly sorry, as I later learned that one of those jokes made another person afraid to admit that she took Prozac too.)

I’m not trying to be an “inspiration.” I’m not trying to prove anything to anyone else. I’m doing what I have to do for me. If someone else finds some good in it, that’s fine. But that’s not why I do it.

I am bipolar.

I am a writer.

I am stubborn.

Taken together, you get this blog.

Bipolar Me.

What Is Sanity?

And who is sane?

Negatives Positives Computer Keys Showing Plus And Minus Alternatives Analysis And Decisions
These are questions you don’t hear much anymore, at least outside of judicial proceedings. Even there, the phrase “guilty but mentally ill” is gaining currency. “Not guilty by reason of insanity” made people think a criminal was getting away with something. And indeed, the “insanity defense” has been misused.

We’re much more comfortable talking about health and illness, concepts we all understand, than about seemingly fixed states like sanity and insanity. They sound so final. At least illness can be treated; health can improve.

Before the deluge of psychiatric labels and the DSM, how to tell if a person was sane or insane was a vital question. The insane were put away – in an asylum if they were poor or kept discreetly out of sight at home if they were wealthy.

But were all the people in asylums insane? And what kind of treatment did they receive? Investigative journalist Nellie Bly determined to find out. Her 1887 exposé Ten Days in a Madhouse was a muckraking revelation.

Bly feigned amnesia and delusional fears, was reported to the police by her landlady, and declared incurably insane.

While she was at the Women’s Lunatic Asylum on Blackwell’s Island, she experienced cold, hunger, brutality, and no diagnosis or treatment. Several of the other inmates were, like Bly, sane by any modern standard, but poor, friendless and alone. The newspaper she worked for arranged to have Bly released, but the other women remained to be beaten, choked, starved, humiliated, not treated and driven insane if they weren’t already.

Bly’s ordeal and testimony did prompt a grand jury to recommend an increase in funding of $850,000 – quite a large sum in those days – for the Department of Charities and Corrections, which oversaw asylums. (It is ironic to note that the word “asylum” originally meant a place of protection, safety, or shelter.) But it mainly went for better physical conditions – warmer clothes, edible food, more and better-trained nurses – rather than actual diagnosis and treatment of the women’s “insanity.”

The question of who is sane and how you can tell was revisited in 1973 by psychologist David Rosenhan. A professor at Stanford University, he devised a simple experiment. He sent eight volunteers, including both women and men, to psychiatric hospitals. Each person complained of hearing a voice saying three words – and no other symptoms.

All – all – were admitted and diagnosed, most of them as schizophrenic. Afterward, the “pseudopatients”  reported to their doctors and nurses that they no longer heard the voices and were sane. They remained in the psychiatric wards for an average of 19 days, beating Nellie Bly’s experience by nine days. They were required to take antipsychotic drugs as a condition of their release.

Rosenhan’s report, “On being sane in insane places,” created quite a stir. Indignant hospital administrators claimed that their staff were actually quite adept at identifying fakes and challenged Rosenhan to repeat the experiment.

This time hospital personnel were on their guard. They identified over 40 people as being “pseudopatients” who were faking mental illness. Rosenhan, however, had sent no volunteer pseudopatients this time. It was a dismal showing for the psychiatric community.

Times have changed, of course. Few people are confined in locked wards for life. Diagnosis is, if not yet a science, less of a guessing game, backed up by the DSM and assorted checklists of symptoms. And insurance companies hold the keys to psychiatric units as much as medical personnel do.

Still, the fundamental questions remain. Are neurotics sane and psychotics insane? I have bipolar 2. Am I mentally ill? I would have to say I am, since my condition will require treatment, barring any dramatic scientific advances, for the rest of my life. And my illness does affect my ability to function “normally.” Yet I think that few would consider me insane (unless I were suddenly to start shooting people in a public place, of course).

Speaking freely about mental illness and mental health is, presumably, supposed to make such disorders more understandable, less fearsome, less stigmatized. I suspect, however, that there are those who would rather we remained out of sight – if not locked away in asylums, then restrained in the virtual straitjackets of strong psychotropic medication.

And while group homes and other sorts of assisted living situations are now more available (though not nearly as accessible as the need for them would require), the general public prefers that such facilities, along with halfway houses for addicts and parolees, be constructed “NIMBY” – Not In My Back Yard.

Out of sight, out of mind.

Maybe the conversations surrounding such issues are reducing the stigma of mental illness, or insanity, or whatever you choose to call it, but I’m dubious about the level of success. There’s still a long way to go.

 

Is Bipolar Disorder an “Invisible Illness”?

Empty Chairs Laid Out For Meeting

Yes and no.

First, a little on the concept of invisible illnesses. These are the sorts of afflictions that are not apparent on first looking at a person – conditions such as fibromyalgia, chronic fatigue syndrome, celiac and Crohn’s diseases, diabetes, epilepsy, lupus, Lyme disease, and many others.

Disabled-world.com says, “Many people living with a hidden physical disability or mental challenge are still able to be active in their hobbies, work and be active in sports. On the other hand, some struggle just to get through their day at work and some cannot work at all.”

Most mental disorders are invisible illnesses by that definition. There isn’t a sign around our necks that proclaims “Bipolar,” “Social Anxiety Disorder,” “PTSD,” “Depression,” or even “Schizophrenia.”  The word “Crazy” isn’t tattooed on our foreheads. Our mere appearance doesn’t give away our “secret.”

We have a lot of the same problems that people with other invisible illnesses have. Spoon theory, for example. For bipolar people, simply taking a shower requires so many spoons that we seldom go out. (I count myself among that number.) People who don’t know or understand Spoon Theory often don’t understand why we don’t accept their invitations or cancel at the last minute, or simply don’t show up. You lose a fair number of friends that way.

On the other hand, a mental disorder is not always invisible. People can see us burst into tears for no apparent reason, or go into the bathroom at a party and never come out. They can see our shaking hands, confused looks, and depressed expressions. They can hear our awkward attempts to socialize “appropriately.” They may not know what is wrong, but they can often tell something is.

When we realize this is happening, there are various strategies we try. We can leave the situation – entirely or partially (my go-to is to leave the room on the pretext of needing to make a cup of tea). We can try to brush it off or laugh it off (“Sorry. My nerves are bad today” or “I don’t know why I said that. Must be a brain-fart”). We can try the half-truth/half-joke (“Oops. Guess my meds just haven’t kicked in yet”). We can ignore whatever is happening and hope everyone else does too.

Or we can own it. “I have social anxiety disorder and need to be in a less crowded space than the mall.” “I won’t be able to go to the carnival with you because my PTSD is triggered by loud noises.” “I may come to your party if my bipolar disorder will let me.”

We can also address the subject when there isn’t a situation looming. During a phone conversation or an IM chat, we can let the other person know that we have a mental disorder – an invisible illness. It doesn’t have to be dramatic and dire. Casually may be the best way to handle it. “I know you’re wondering why I didn’t go to the movies with you last week.” “When I saw my doctor yesterday we talked about my physical health and my mental health too.” “You know that character on that show that has PTSD? I have that too, but it’s not exactly like on the show.”

If that sounds risky, you’re right. It can be. There will be people who still don’t get it. People who “don’t believe in” mental illness. People who try to brush it off. People who offer the latest vitamins or super foods or Eastern philosophy as the cure-all.

But you’ll also find people who say, “Oh, my brother-in-law has that too” or “Okay. But I’m still your friend” or “What can I do to help?”

So those are the choices, basically.

Take a chance. Or stay invisible.

Neither choice is right or wrong for everyone. Mental illness is very personal.

You decide.

 

 

Bipolar Basics for the Newly Diagnosed

If you have recently been diagnosed as bipolar, there are a few basics you should know. You’ll likely find them out on your own, but it might take a while.

So, here are some tips.

    1. Being bipolar isn’t necessarily a tragedy. It’s a chronic illness. At times it’s better, at others, worse. It’s not a death sentence and it’s treatable. You can still live a reasonably full and satisfying life.
    2. You need help. To live with bipolar disorder, you need a support system. Unfortunately, your friends and family may not be all that supportive. Fortunately, there are online support groups. But the most important parts of your support system, at least at first, are your psychiatrist and your psychotherapist. I recommend having one of each – psychiatrist for medication, therapist for talk or cognitive behavioral therapy, or whatever works for you.
    3. You will most likely need medication. And the odds are good that you will need it for the rest of your life. Don’t panic. After all, diabetics need insulin, usually for life. You may hate taking pills, you may hate the idea that you are dependent on them, you may hate the fact that they remind you of your brain’s difficulty functioning. But realize that meds will make your brain’s functioning less difficult. They are worth the hassle.
    4. Everyone is different. Everyone’s symptoms are slightly different. Everyone’s medications are slightly different. Everyone’s reactions to their medications are slightly different. A support group can help you with general information, but they cannot tell you what is ultimately best for you. Your particular symptoms and your unique version of bipolar disorder may well require different medications, in different amounts, than your friends. And you may have different reactions to them. Some pills have no effect at all on one person and are life-savers for another.
    5. Getting better takes time. Once you have your diagnosis and your medication, don’t expect to feel better quickly. Most medications for bipolar disorder take a while to build up in the body. Six weeks is not unheard of. Then your doctor may assess how well the medication is working, and change the dose or even the medication itself. Then you may go through another six weeks of waiting for the new dose or drug to take effect. Each case of bipolar disorder requires a medication regimen tailored specifically to the individual, and that often takes some doing.
    6. There are several different types of bipolar disorder. The two main types are called type 1 and type 2. Type 1 is the classical bipolar disorder, which used to be called manic-depressive illness. Type 2, a more recently identified version of the disorder, often manifests as mostly depression, possibly with hypomania, a less severe version of the ups that accompany bipolar 1. Other forms of bipolar disorder are rapid cycling, in which one’s mood states alter quickly, even within a few hours. Another version of bipolar disorder is called mixed states. Mixed states occur when a person experiences both extremes of emotion at the same time – for instance, depression and irritability, or fatigue despite racing thoughts.
    7. The odds are that you already know someone with bipolar disorder, or at least some kind of mood disorder. One in four Americans will have a psychiatric or emotional illness at some time during their lives. Because we don’t talk about it, though, no one may ever know. Especially when the disorder is treated properly, a person with bipolar illness can maintain function in society and choose whether or not to share the diagnosis with friends and coworkers. Many people choose not to because of the stigma surrounding mental illness. It’s a valid choice, but it cuts the bipolar person off from possible support and understanding from others who may share the disorder.
    8. Relationships can be difficult but not impossible. Relationships are difficult for everyone. People with bipolar disorder have relationships that are difficult too. The disorder may make the relationships even more difficult, especially when the family member or loved one or even close friend does not understand the symptoms, the medication, the mood swings, the anxiety or fatigue, or all the other facets of bipolar. The best cure for this is education. However, it may not be possible for a relationship to survive bipolar disorder, just as a relationship may not survive trauma, grief, addiction, infertility, incompatibility, meddling relatives, infidelity, parenting, or a host of other conditions. It may be better to look at all the circumstances surrounding a troubled relationship rather than automatically blaming bipolar disorder for difficulties.
    9. Learn all you can. Because bipolar disorder is so little understood by the public, because it manifests differently in nearly every case, because a person can be actively suffering or in remission, because a person may have any of the different types of bipolar disorder, because everyone is different – the need to educate yourself and probably those around you is essential. The more you know, the less you’ll panic when a symptom you haven’t experienced before suddenly hits. Rely on reputable sources. Medical, psychiatric, or psychological websites are usually the best. Support groups can offer much information, but the people in a support group may not be any more well-informed than you are. And there are lots of people selling “miracle cures” that can lure a person away from needed medication and other services.
    10. Keep trying. It’s hard. It’s frustrating. It’s difficult. It’s painful. It’s confusing. But bipolar disorder is something you can live with, and even something you can rise above. The secret is to keep trying. Keep seeking out therapy and friends who support you. Keep taking your medication, even if you don’t want to. (Stopping your medication without advice from your doctor can be dangerous, so don’t try that.) Be stubborn. When you feel like giving up, tell yourself that maybe things will get a little better in the morning. Hang in there. You may not realize it, but there are people who need you in the world, who need you to be functioning and happy, who need you to keep fighting the disorder.

Do you have any other tips for the newly diagnosed? Please share them in the Comments section.

My New Mental Health Tattoo

Once again I have gotten a tattoo, supporting the cause of mental health.

A few months ago, I became a part of what’s called the semicolon project and wrote about it in this post: http://wp.me/p4e9Hv-9G. For those of you who aren’t up on the terminology, a semicolon tattoo represents mental health awareness, especially erasing the stigma, and suicide prevention.

The semicolon was chosen as the symbol because in writing, a semicolon indicates a place where a writer could have completed – or stopped – a sentence, but chose to go on. The semicolon says, in effect, “My story isn’t over.” The idea is to have the tattoo someplace visible – in my case, on my left wrist – and use it as a conversation starter.

Most people will assume that since I am a huge grammar nerd, my semicolon tattoo is some weird manifestation of love for punctuation. Then I can tell them that it’s a whole lot more. You can find out more about the semicolon project at http://www.projectsemicolon.org/.

My new tattoo represents bipolar disorder. Again it’s made up of punctuation: two colons and a paren. These symbols, unlike the semicolon, have no special meaning in writing and are never seen together in that order. Instead they make up a double emoticon: looked at one way, the colon and paren make up a smiley face. Looked at the other way, a frowny face.

New mental health tattoo

New mental health tattoo

This symbolism is easier for anyone seeing the tattoo to grasp. In a way, it’s a minimalist version of the comedy and tragedy masks you often see in theaters.

Again, it’s a conversation starter. Bipolar disorder is not well understood by the general public. This is particularly true of bipolar disorder type 2 – the kind I have – which many people have never even heard of.

Since I have gone public with having a mental illness, it seems only appropriate to introduce people to the disorder in a way that’s creative, nonthreatening, and understandable.  It’s a lot less abrupt than blurting out, “Hey, I have a mental illness!” Even my mother-in-law recognizes that these tattoos are not just a whim, but for a good cause.

The second tattoo is on my right wrist, so no matter which hand I extend, I can open up new understanding about a very real problem that many people live with daily.

A number of articles have come out lately questioning whether a person who gets a tattoo will regret it when they grow older. I think I can say with complete confidence that I will never regret these tattoos. They say something about who I am, something that will not change as I grow older. The disorder will always be with me and so will these symbols. For the rest of my life I can use them to educate, identify with other bipolar people, and remind myself that wrists are not for cutting.

I will say, however, that whoever thinks of these things had better put the brakes on new mental health-related tattoo designs – especially those made of punctuation – or I will soon become the illustrated editor/blogger. At the moment I have no plans for any further ink. My friends, however, tell me that tattoos are addictive. So we’ll see.

A few notes, since everyone asks: These simple tattoos take 10 minutes or less to apply. They hurt a little bit, but not much – a stinging sensation. They may fade a bit at first and need a touch-up. Because they are so quick and simple, you will not pay a lot to have them done. After you get the tattoo you have to take care of it while it heals, moisturizing it regularly for the first 3-6 weeks or so.

If you decide to get a tattoo, check out the studio before you have it done. It should be a professional operation, with high standards of cleanliness and concern for health. Tattoo artists should wear surgical gloves and change them frequently. There may be a consent form to fill out, indicating that you know what you are getting into, and even indicating whether you have various medical conditions or allergies, or have drunk alcohol within the previous eight hours. A reputable tattoo studio will not work on a drunken client.

Do you have a tattoo related to mental health? I’d love to hear about it. But don’t tell me if it’s more punctuation. I only have two wrists.

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