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"If" and "When" -- a Poem of Eulogy and Celebration
This is my entry for the October, 2012 "Disability Blog Carnival," hosted by Dave Hingsburger at Rolling Around in My Head.
And because this entry is written with the intent of being part of a larger, cross-blog conversation, I am going to allow anonymous comments (though screened) for a short period (Short = my comfort level).
This video now has proper closed captions
If my grief over Mother's death were a person,
This would be the year it could buy its first drink
With friends at the bar
Slamming the mug down in triumph,
Froth crowning its upper lip.
Then, maybe, there'd be singing.
Or, maybe, my grief, taking after me,
Would be a teetotaler, content
To drift on the rising tide
Of friends' besotted laughter.
If my grief over Mother's death were a person,
I'd make a wish that its friends,
When drunk, would only laugh --
Opening their arms wide for tipsy hugs
And slurred "I love yous!"
I remember the year my grief was born --
Seems like only yesterday, sometimes.
I, a grad student a hundred miles from home,
Rolling across campus in my motorized chair,
Would sing aloud, not caring
If my spastic throat Pulled the tune off-key.
I needed to sing, to give my voice
The power to cut through helplessness
Like the prow of an ice-cutter
Through the North Atlantic:
"My life flows on, in endless song
Above Earth's lamentation.
I hear the sweet, though far off, hymn
That hails the new creation.
Above the tumult and the strife
I hear its music ringing.
It finds and echo in my soul.
How can I keep from singing?"
Of course I got noticed.
Moving through the cafeteria,
The song's final notes trailing behind me,
I'd overhear: "She's such an inspiration --
Always so happy!"
The irony sparked
Even through my grief-fogged mind.
This woman: my mother,
Daughter of a mathematician,
Graduate of the Bronx High School of Science,
Asked me to work magic on her behalf --
To arm myself with Hope and Vision,
To battle at her side from a hundred miles away.
Whether she believed the Power of Thought
Could alter the progress of her cancer,
Or merely deflect the pity and disgust
That Oncoming Death inspires,
I do not know.
But when I was two, this woman, my mother
Refused to be cowed by the hospital psychologist
And saved me from a life behind institutional walls.
When I was eight, she taught me
How to write a letter of protest.
She hand delivered it to my teacher
At the PTA meeting, that night.
The next morning, I learned that the authority of justice
Could make the authority of position tremble.
When I was thirteen, in the spring of 'Seventy-seven,
We rallied together under hand-painted signs
So that I (and others) could roll across campus.
(While waiting for the elevator,
An acquaintance finds the courage to ask
If I dream of walking, or hope for a cure.
I say there is no cure. And anyway,
I'd rather spend my numbered days
Out in the world, writing stories, or teaching children,
Then behind the walls of a physical therapy gym.
My answer earns rebuke
For 'giving in to my disability')
When I was sixteen, Mother fought our town hall
For a wheelchair access ramp,
And cut the ribbon at the opening ceremony,
The mayor smiling at her side.
"I will support you in anything
You decide to do," she told me, years later --
"But it is up to you to decide it."
And so, for her sake, I sang
And told no one the reason.
"The water's wide, and I can't cross over.
And neither do I have wings to fly.
But give me a boat that will carry two
And both shall row
My love and I."
Reincarnation, she once said, happened
When daisies pushed up from the grave,
And bugs ate the flowers, and birds ate the bugs.
She assured me that the energy of her life,
(Like the energy of an electron) would be conserved --
And if I needed to, I could find her
In the downbeat stroke of a crow's wing.
In those first years, my grief demanded
All my attention, and care.
Now there are long stretches of silence between us
But it still wanders home in the middle of the night
Waking me from dreams.
For twenty-one years,
I have watched for the shadows of crows.
And told no one the reason.
Until now.
The Hospital Psychologist Story:
One of the persistent assumptions about cerebral palsy is that intellectual developmental delay often accompanies the physical developmental delay, and so testing for mental retardation was (and perhaps still is) common practice with children who are diagnosed with C.P..
When I was two years old, I was scheduled for a psychologist's evaluation, to test my I.Q.. Mother, Father and I were sitting in the hospital waiting room, having a conversation, in a little circle, with my back to the door.
The nurse came in, said "Hello," to my parents, and nothing to me. She grabbed the back of my wheelchair (actually, at that point, I think I was still using a stroller), and wheeled me down the hall to another room, where I was left waiting alone. I still have a very vague memory of the long metal table where I was parked, and the blue-green-grey paint on the walls. I was probably only in there a minute or two, but it felt longer.
Then, the psychologist came in, and started presenting me with puzzles, and asking me question. I, being two, and shy, just stared at him and didn't say a word. And he was prepared to mark me down as "severely retarded" and recommend I be institutionalized.
Meanwhile, Mother was out in the waiting room, fuming over the disrespect I'd been shown, and thinking over how she could get us out of there without worse repercussions; she decided to use what her father had learned at Virginia Military Institute, when answering superiors: answer all questions with: "Yes," "No," or "I don't know," and nothing more.
When she was called into the room, she came in, sat down and smiled at me. And the psychologist started to repeat the puzzles, to demonstrate to her how "unresponsive" I was. But with Mother there (and now, some context), I answered everything perfectly. The doctor crossed out the "severely retarded" diagnosis, but he marked Mother down as: "Hostile and manipulative --" hostile to him (which was true), and manipulative of me (since, by his estimation, her presence was clearly pressuring me to perform -- it's kind of scary to me how little a psychologist could understand about two year olds).
Just to be clear: People with intellectual disabilities have just as much humanity, dignity and worth as anyone. But when the diagnosis is misapplied, it can do great harm. An analogous situation would be to have an educational policy that forbade students with Down Syndrome from engaging in physical activity or sport without a safety harness and close supervision from a physical therapist, who made sure that that everything was done with minimal exertion.
What vexes me most is that all the people with C.P. I've met who've been labeled with "intellectual disability," and treated accordingly, have had difficulty speaking, due to C.P.'s effects on muscle coordination. But none of those I've known with fluent speech have been diagnosed with I.D.. The reasoning seems to be: "If we can't understand the answer, then clearly the patient didn't understand the question."
The Protest Letter Story:
It was a day in third grade (if I recall correctly), and the class was being particularly rowdy and talking to each other, and not listening to the teacher. Finally, fed up, she announced, as class-wide punishment, she would write the instructions on the board, and not talk at all.
Since I was parked in my wheelchair, in the front corner of the classroom, right next to the blackboard, I couldn't read what she had written, because all I saw was glare from the window. I called the teacher over, and explained that I couldn't see the board, and (unlike the other students), I could not get up from my seat for a better perspective. Since I had been trying to listen, I asked her if she could please just whisper the instructions in my ear, so others couldn't hear. She refused, saying that that would be cheating, and "special treatment" -- the punishment was for the whole class, and I was part of the class, so I had to take the punishment with the others.
Since I couldn't read the instructions, I couldn't do the assignment, and got a zero mark.
I came home extremely upset, and Mother suggested I write a protest letter, for her to deliver at the meeting that night. She taught me how to format a formal letter, how to structure my argument, check my spelling and grammar, and how to erase my mistakes cleanly, rather than just crossing them out.
She got home from the P.T.A. meeting after I was in bed. But when I came down to breakfast in the morning, Mother told me that I must have been telling the truth, and the teacher must have known it, because when she finished the letter, and folded it back up, she creased it so hard, she tore a big hole down the middle of the paper -- and that if she'd been in the right, it wouldn't have bothered her so much.
Later, in class, after doing the morning attendance, my teacher came over, knelt down beside my chair and yelled at me in a whisper, while holding the letter up in my face, about how I had no right to protest her punishment: I was the student, she was the teacher, and her word was law, and I must know my place from now on.
But all I could do was stare at the letter; I could see, now, the tear my mother had described. I'd originally thought she'd torn the letter with her fingernails, and the tear would be parallel to the crease. But the tear was vertical -- almost as if she'd cut through the paper with scissors -- and I could now imagine how violently she must have pulled at the paper when she folded it back up. Furthermore, I could see, in that moment, how the paper was shaking because she was so nervous.
And so her "yelling" at me had the opposite effect from the one she desired: I was never cowed by her, or any other teacher, again.
And because this entry is written with the intent of being part of a larger, cross-blog conversation, I am going to allow anonymous comments (though screened) for a short period (Short = my comfort level).
This video now has proper closed captions
If my grief over Mother's death were a person,
This would be the year it could buy its first drink
With friends at the bar
Slamming the mug down in triumph,
Froth crowning its upper lip.
Then, maybe, there'd be singing.
Or, maybe, my grief, taking after me,
Would be a teetotaler, content
To drift on the rising tide
Of friends' besotted laughter.
If my grief over Mother's death were a person,
I'd make a wish that its friends,
When drunk, would only laugh --
Opening their arms wide for tipsy hugs
And slurred "I love yous!"
I remember the year my grief was born --
Seems like only yesterday, sometimes.
I, a grad student a hundred miles from home,
Rolling across campus in my motorized chair,
Would sing aloud, not caring
If my spastic throat Pulled the tune off-key.
I needed to sing, to give my voice
The power to cut through helplessness
Like the prow of an ice-cutter
Through the North Atlantic:
"My life flows on, in endless song
Above Earth's lamentation.
I hear the sweet, though far off, hymn
That hails the new creation.
Above the tumult and the strife
I hear its music ringing.
It finds and echo in my soul.
How can I keep from singing?"
Of course I got noticed.
Moving through the cafeteria,
The song's final notes trailing behind me,
I'd overhear: "She's such an inspiration --
Always so happy!"
The irony sparked
Even through my grief-fogged mind.
This woman: my mother,
Daughter of a mathematician,
Graduate of the Bronx High School of Science,
Asked me to work magic on her behalf --
To arm myself with Hope and Vision,
To battle at her side from a hundred miles away.
Whether she believed the Power of Thought
Could alter the progress of her cancer,
Or merely deflect the pity and disgust
That Oncoming Death inspires,
I do not know.
But when I was two, this woman, my mother
Refused to be cowed by the hospital psychologist
And saved me from a life behind institutional walls.
When I was eight, she taught me
How to write a letter of protest.
She hand delivered it to my teacher
At the PTA meeting, that night.
The next morning, I learned that the authority of justice
Could make the authority of position tremble.
When I was thirteen, in the spring of 'Seventy-seven,
We rallied together under hand-painted signs
So that I (and others) could roll across campus.
(While waiting for the elevator,
An acquaintance finds the courage to ask
If I dream of walking, or hope for a cure.
I say there is no cure. And anyway,
I'd rather spend my numbered days
Out in the world, writing stories, or teaching children,
Then behind the walls of a physical therapy gym.
My answer earns rebuke
For 'giving in to my disability')
When I was sixteen, Mother fought our town hall
For a wheelchair access ramp,
And cut the ribbon at the opening ceremony,
The mayor smiling at her side.
"I will support you in anything
You decide to do," she told me, years later --
"But it is up to you to decide it."
And so, for her sake, I sang
And told no one the reason.
"The water's wide, and I can't cross over.
And neither do I have wings to fly.
But give me a boat that will carry two
And both shall row
My love and I."
Reincarnation, she once said, happened
When daisies pushed up from the grave,
And bugs ate the flowers, and birds ate the bugs.
She assured me that the energy of her life,
(Like the energy of an electron) would be conserved --
And if I needed to, I could find her
In the downbeat stroke of a crow's wing.
In those first years, my grief demanded
All my attention, and care.
Now there are long stretches of silence between us
But it still wanders home in the middle of the night
Waking me from dreams.
For twenty-one years,
I have watched for the shadows of crows.
And told no one the reason.
Until now.
The Hospital Psychologist Story:
One of the persistent assumptions about cerebral palsy is that intellectual developmental delay often accompanies the physical developmental delay, and so testing for mental retardation was (and perhaps still is) common practice with children who are diagnosed with C.P..
When I was two years old, I was scheduled for a psychologist's evaluation, to test my I.Q.. Mother, Father and I were sitting in the hospital waiting room, having a conversation, in a little circle, with my back to the door.
The nurse came in, said "Hello," to my parents, and nothing to me. She grabbed the back of my wheelchair (actually, at that point, I think I was still using a stroller), and wheeled me down the hall to another room, where I was left waiting alone. I still have a very vague memory of the long metal table where I was parked, and the blue-green-grey paint on the walls. I was probably only in there a minute or two, but it felt longer.
Then, the psychologist came in, and started presenting me with puzzles, and asking me question. I, being two, and shy, just stared at him and didn't say a word. And he was prepared to mark me down as "severely retarded" and recommend I be institutionalized.
Meanwhile, Mother was out in the waiting room, fuming over the disrespect I'd been shown, and thinking over how she could get us out of there without worse repercussions; she decided to use what her father had learned at Virginia Military Institute, when answering superiors: answer all questions with: "Yes," "No," or "I don't know," and nothing more.
When she was called into the room, she came in, sat down and smiled at me. And the psychologist started to repeat the puzzles, to demonstrate to her how "unresponsive" I was. But with Mother there (and now, some context), I answered everything perfectly. The doctor crossed out the "severely retarded" diagnosis, but he marked Mother down as: "Hostile and manipulative --" hostile to him (which was true), and manipulative of me (since, by his estimation, her presence was clearly pressuring me to perform -- it's kind of scary to me how little a psychologist could understand about two year olds).
Just to be clear: People with intellectual disabilities have just as much humanity, dignity and worth as anyone. But when the diagnosis is misapplied, it can do great harm. An analogous situation would be to have an educational policy that forbade students with Down Syndrome from engaging in physical activity or sport without a safety harness and close supervision from a physical therapist, who made sure that that everything was done with minimal exertion.
What vexes me most is that all the people with C.P. I've met who've been labeled with "intellectual disability," and treated accordingly, have had difficulty speaking, due to C.P.'s effects on muscle coordination. But none of those I've known with fluent speech have been diagnosed with I.D.. The reasoning seems to be: "If we can't understand the answer, then clearly the patient didn't understand the question."
The Protest Letter Story:
It was a day in third grade (if I recall correctly), and the class was being particularly rowdy and talking to each other, and not listening to the teacher. Finally, fed up, she announced, as class-wide punishment, she would write the instructions on the board, and not talk at all.
Since I was parked in my wheelchair, in the front corner of the classroom, right next to the blackboard, I couldn't read what she had written, because all I saw was glare from the window. I called the teacher over, and explained that I couldn't see the board, and (unlike the other students), I could not get up from my seat for a better perspective. Since I had been trying to listen, I asked her if she could please just whisper the instructions in my ear, so others couldn't hear. She refused, saying that that would be cheating, and "special treatment" -- the punishment was for the whole class, and I was part of the class, so I had to take the punishment with the others.
Since I couldn't read the instructions, I couldn't do the assignment, and got a zero mark.
I came home extremely upset, and Mother suggested I write a protest letter, for her to deliver at the meeting that night. She taught me how to format a formal letter, how to structure my argument, check my spelling and grammar, and how to erase my mistakes cleanly, rather than just crossing them out.
She got home from the P.T.A. meeting after I was in bed. But when I came down to breakfast in the morning, Mother told me that I must have been telling the truth, and the teacher must have known it, because when she finished the letter, and folded it back up, she creased it so hard, she tore a big hole down the middle of the paper -- and that if she'd been in the right, it wouldn't have bothered her so much.
Later, in class, after doing the morning attendance, my teacher came over, knelt down beside my chair and yelled at me in a whisper, while holding the letter up in my face, about how I had no right to protest her punishment: I was the student, she was the teacher, and her word was law, and I must know my place from now on.
But all I could do was stare at the letter; I could see, now, the tear my mother had described. I'd originally thought she'd torn the letter with her fingernails, and the tear would be parallel to the crease. But the tear was vertical -- almost as if she'd cut through the paper with scissors -- and I could now imagine how violently she must have pulled at the paper when she folded it back up. Furthermore, I could see, in that moment, how the paper was shaking because she was so nervous.
And so her "yelling" at me had the opposite effect from the one she desired: I was never cowed by her, or any other teacher, again.
no subject
no subject
... Now that YouTube's/Google's auto-transcription is supposedly out of beta testing, I was hoping to use that to generate a subtitle track (full of ridiculous errors, no doubt), which I could then edit by pasting in the actual written lines of the poem.
But the Auto-transcription algorithm is set for male, non-disabled, voices as default, and YouTube doesn't even recognize the existence of a human voice in this video... which is rather dispiriting, if you want to be taken seriously.
So I think I'm going to have to do the whole thing manually... I should get to work on that, now.