Thursday, December 22, 2011

Ranting. No, Really.

Skully posted a link to twitter a little bit ago that just about sent me through the roof.  It was an article about how those with mental illnesses feel shafted by the medical community that's supposed to be helping them and if you are someone with a mental illness or love someone who has one it will piss you off, too.  Doctors and nurses are only human beings (two of my close relatives are nurses and damn fine ones) but when it's YOUR life that's being screwed with their human foibles are just so much bullshit.

Let me give you a little personal history so you can have a better idea of where I'm coming from with this and so you can understand why I'm shaking with rage as I type this.  When I was a kid I had epilepsy.  The cluster of symptoms that I had pointed to what is now known as Juvenile Absence Epilepsy, which includes both absence seizures (where you stare off into space for a minute but don't lose conciousness) and tonic-clonic seizures (where you do lose conciousness).  I was put on a course of phenobarbital (a barbituate) and dilantin (not a barbituate but with other fun side effects) and regularly monitored by EEG (the feeling of cold clay still gives me the willies).  I was tapered off the meds in junior high school but experienced heavy duty deja vus and other symptoms of Simple Partial Seizures (which are not detectable on EEGs) until high school.  A majority of people who develop epilepsy as children eventually 'grow out of it.'  In other words it's a bad time to make a permanent decision about someone else's life.

When I was in third grade (eight years old for those not in the US public school system) my teacher was convinced there was 'something wrong' with me.  My pediatrician wrote her a letter explaining the situation and they agreed that maybe I should be psychologically tested.  Enter Dr. Frankenstein, the school district psychologist (with apologies to Mary Shelley).  He was old school, near retirement.  He tested me for an hour (I vaguely remember working a couple of puzzles) and was convinced that I was a highly functioning 'mentally defective' child.  He told my grandparents, who were raising me, that I would never go on to college; I might not graduate from high school.  The best they could hope for me was a skilled labor job somewhere but what he really recommended was institutionalization.  I could get the care I needed and they could get on with their lives.  My grandfather refused, mercifully.  This was all related to me later by my grandfather, when I was on Christmas break from my sophomore year at college.  Suddenly a LOT of little personal mysteries made sense.

Institutionalization was being phased out as a 'solution' for epilepsy in the 70s and as of now it almost never happens.  It never should have happened in the first place.  People with neurological disorders, mental illnesses, personality disorders are PEOPLE.  They're human beings with a RIGHT to be seen as such, not as cases to be managed.  It always irritates me when I read about communities for any disorder looking for a 'face' in order to raise awareness because you know what?  I have a face and I know what it looks like.  Marketing a famous person isn't going to change a bully's mind in the middle of a beatdown but maybe I can.  Maybe you can.  And the place to start is by treating each other, even when we're exhausted or fed up, like we're all the beautiful, messy creatures we are.


  1. Your story is shocking and dreadful. I'm relieved your grandfather realized what was happening and you weren't institutionalized.

    Sad but not surprising. Doctors want to fix you. If they can't fix or cure but only help or palliate, most are not interested. Apologies to any doctors reading here but that's my experience on many medical issues, not just mental health / neurology.

  2. Thanks for your thoughtful comment, Kurbiss. I was blessed to have someone in my corner, but it wrenches me to think about all those who didn't. What happened to them?

  3. Dear Jazzy,
    I feel for you and your experience. I hope we live in a more enlightened age now.

    Twenty years ago as a young university teacher, I had a lady in her forties taking my public speaking class. She came to me and explained that her meds for schizophrenia (her word choice) made her shake and she was afraid she would get counted down for that. I told her not to worry, that her shaking wouldn't lose points for her and she should just do the best she could--which is all any of us can do.

    Another young man I had in different public speaking class was technically a quadriplegic in a motorized wheel chair, though he had some arm movement. Again, his lack of movement--gestures, etc--was not counted against him.

    Both students focused on their writing and composition and I adjusted their grading rubrics accordingly.

    And then there was the time that a non US Speaker grad assistant was trying to make his students speak Midwestern English--rather than have a southern drawl. I called him on the carpet for the irony of that one--him trying to specify a particular accent be required for public speaking. Ha!

    My final teaching related story is of an advisee who came to me worried about his performance in someone else's class because he had a learning disability. He had been diagnosed in high school and used some services--longer test times, a note taker, etc. But he wanted to eschew that help in college and his grades were plummeting. He said that he didn't want the other kids to feel like he was getting special treatment. I looked at him and in my best Aunt Grati voice, I told him that his using learning services is not special treatment. I then gave him an analogy. I told him, I'm near sighted and need these eye glasses to see. Now you're not going to say I shouldn't have my glasses are you? He sputtered, of course not. Then I told him that my wearing glasses or him having longer to take a test were the same thing. Neither of us were getting special treatment--it was just leveling the playing field for each of us. He seemed to appreciate the analogy because he had one of those "ah ah" expressions on his face

    My point is that we need to cut others slack and not set up arbitrary and imaginary barriers for them to cross or navigate through. So, thanks for your essay reminding all of us to think before we make assumptions--and to make ourselves more aware of what we are ignorant about.

    An important post, Jazzy! Thanks for sharing, Grati ;->

  4. Thanks, Grati, both for your comment and your compassionate response to your students. For me the label "defective" stuck even though I stayed in the school system and it wasn't till I was in high school that I found a teacher who was willing to challenge me and he opened up a whole new world for me (I hadn't considered college at all until he brought it up). I love the phrase "Be kinder than necessary because eveyone you meet is carrying an invisible burden" because it's so true.

  5. And here is my personal story of being "labeled". As a 1st grader, I caught every child hood disease you could have--tonsilitis, mumps, measels, etc.--which kept me out of school for most of the year. So, I had to have a tutor in 2nd grade to catch up. Then when I was in third grade, we visited my cousins in Florida for a month and went to school there so we wouldn't miss out. When I returned home, my teacher clucked that I had done only average work while on "vacation" since my papers the teacher had sent her had "C"s on them. Eventually, we cleared up the misunderstanding. It seemed that for my Florida teacher, "C's" meant "Correct"--my papers were perfect. But that chastising stuck with me--given that I had been "behind" in 2nd grade. Then in 6th grade, I was put into a small group of students reading different stories than the other kids and we wrote essays about them. My best friend was not in this group and I felt set apart from her--but not in a good way. So, during recess one day, I went to my teacher privately in tears--asking her "what was wrong with me that I had to be in a special group?" My earlier years of learning misunderstandings had taken their toll on me. My teacher then explained to me that I wasn't in a remedial group; but rather, I was in the advanced group of students. She just didn't want to tell us that to prevent us from getting "swelled heads". Oh what heartache she could have spared me if she had just recognized that my chubby little girl self could never have thought that I was special in a good way--my having to bear the taunts of kids about my weight regularly. And teachers also made fun of my weight. Later that year, the male teacher stepped out of our advanced math class for a moment and left Greg in charge. Big mistake. I was the good girl bar none, but Greg told the teacher that I had made a duck noise and Timmy in front of me had laughed. That was true, but Greg exxagerated the story as if we had disrupted the class. The male math teacher sent skinny Timmy and chubby me to the library to write a short report on the tse tse fly and hippopatamus, respectively. I seethed as I dutifully wrote my essay about hippos, finally getting angry enough at being ridiculed--this time by a teacher--to find my voice. And I used my voice. When the math teacher and my lady teacher talked to me "privately" in the hallway after I handed in my essay, I told them both how inappropriate it was for him to assign such topics to Timmy and I--clearly accentuating Timmy's smallness and my chubbiness. I glowered at both of them. I didn't get an apology out of the male math teacher, but he knew that I wasn't going to take any insults from him or anyone in the future. I became my own best advocate--because I had to be. And my earlier struggles with being singled out for ridicule have always given me a compassionate feeling for others who are also labeled different. As the song says "We shall overcome". Here endeth my rant. Cheers! Grati ;->

  6. Grati, I apologize, I'm not sure how I missed this till now! Bullying is even worse, I think, when it's done by someone who's supposed to guide and shape us. I'm glad one of your teachers DID recognize your abilities!

  7. Hooray for your Grandad! I guess epilepsy was conceived as being closely related to mental retardation back then... thank goodness attitudes have since evolved .. although not entirely as that article indicates. If we keep speaking up things will continue to change for the better :)

  8. Exactly. And it's not the responsibility of the famous to speak for us, it's our responsibility to be as educated and educating as we can. Change will come when we refuse to be treated as a bother.


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