I obviously didn't write the essay posted below but I agree with it.
(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was born extremely premature and has cerebral palsy as a result, her needs as a child were so demanding that she was sent to a hospital convent to be raised there, she spent much of her youth unable to walk or having surgeries. She raised 4 kids and is now nearly 80.) My grandfather went blind when my mum was still a kid. I grew up with a little brother who was deaf but through surgery and speech therapy had overcome that issue by the first grade. My father was very seriously ill multiple times during my lifetime and we now know he shares the same genetic condition I was recently diagnosed with--possibly accounting for much of his past and continuing trouble.
I know illness and constant pain. In myself and others. In people I love. I know broken bodies. I've experienced and seen first hand the loss of dignity involved. And I know minds deemed different or unfit as well.
And all I ever saw in any of it in the end, was beauty and value and strength of character which you often don't get to see in "normal" people. And also often a certain kind of love that is open, innocent, communicative, full of trust and wonder. I am not using these words lightly. I am dead serious. There can be such a refreshing honesty to disabled people I've found as well. Just read the tattoo on the back of my neck. Which makes the way we who's needs can be so different are treated so much more deplorable.
When I taught and tutored special needs kids I learned--it came very easily to me but it doesn't for many people: YOU adapt to the child's individual needs. That's how you succeed. You do not try to bend or force the individual to the "normal","accepted","standard", usual way of doing things.
That doesn't just apply to people categorized as disabled or special needs. It applies to everyone. When you individualize your approach to education, healthcare, parenting, interpersonal relationships to a persons unique needs you will likely get healthier happier results.
That "usual" way--hasn't worked out for many people I know. Very very few in fact. It certainly did me more harm than good.
The medical community could do to learn that lesson as well as the rest of society in general. Current attitudes and practices do get tiresome, insulting, hurtful. Both physically and emotionally.
http://www.withalittlemoxie.com/
Tuesday, March 27, 2012
What the Cultural Value of Disability and Star Trek Have in Common
The Spirit Catches You and You Fall Down is a the story of a fiercely frustrating cultural clash, the crux of which lies the differing perceptions of one particular disability: epilepsy.
In the story, a Hmong refugee child living with her family in Central California has epilepsy, complete with grand mal seizures. Epilepsy, viewed within the Hmong culture, is a blessing, a gift from the gods, in which the spirit of the gods catches within the mortal soul and makes one fall. The Hmong family doesn't want to "cure" their daughter; the American social, health and protection workers do.
***
This story has been tickling the edges of my mind for a while in that 'what was it?' kind of tantalizing, trying-to-put-my-finger-on-it way. Like picking a sliver of eggshell out of a bowl of eggs, the tiny piece slipping once again just as I get a little closer.
And then, I got it. I got that little thing under my finger. I connected what it was that I wanted to remember: the cultural value of disability.
***
In this storm that has been raging regarding disability, prenatal testing and the economics of disability, case after case is made on the value of a life that is different - or the power of choice. The importance of accurate advice to those women who need and want it.
I agree with all that and what I also think is that nothing will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as "inspiration".
We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not unique as that condescending "special"; rather, unique as each flower is unique, each star, blade of grass, hummingbird - unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.
***
As a society, we do not seek out what an individual with Down syndrome - or _______ fill in the blank disability - is going to offer us; we try and force that person into the societal box. We say, fix that, that and that and you'll be good for this, this and that. We assess, we measure, we say, fine you are at this level and so you are fit for x,y.z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.
We don't say: you dance like a wild mad woman and your joy brings joy so let us use you as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.
We don't say, you are Deaf - you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.
We don't say, you are highly sensitive - your body is like the canary in the mine. Let us respect and honour your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.
We don't say, you are depressed - and so many of us are depressed! What is happening within our collective whole - the framework in which we build this thing called 'culture' upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively: let's find it. Change it. Live in different ways that do not cause us to become sad.
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.
Those of us with a child with a disability know that our children bring with them gifts, just as all children do. We clamour for attention - we want the world to know this truth.We say, 'hey! hey! look - look at my kid, look at my life! we are normal - I was wrong, so wrong, before disability came into my life!' and the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, "she's making the best of a bad situation," they say. And we want them to know, 'no, no! REALLY! I am telling you the solid gold truth!"
Perhaps I am jaded, but while I think that jumping up and down and clamouring does more good than nothing, I have a hard time seeing that anything will truly change unless our collective perception of disability itself changes.
***
One last thought: Star Trek provided scientists with the inspiration to do more, try harder. They saw what was fantasy on TV in the time in which computers were as big as a room. Engineers were inspired to try and create cell phones, smaller computers, visual phones, automatically-opening doors - and they did.
They didn't see Star Trek as an "intergalactic" floating bucket of impossible dreams. They saw it as opportunity.
This is what I crave for us with disabilities: that disability be recognized as an opportunity for growth. That it be respected for contributing in valid ways to our society, in and of itself as the diverse thinking and experience that all people inherently bring contribute to a vastly richer human race.
(Related--
This article is great too. )
I know SGs on here with disabled kids. I worked with severely medically fragile and special needs kids myself. I am disabled and was sick (often seriously) as a kid too. Both my maternal grandparents have been disabled my whole life (my grandmother was born extremely premature and has cerebral palsy as a result, her needs as a child were so demanding that she was sent to a hospital convent to be raised there, she spent much of her youth unable to walk or having surgeries. She raised 4 kids and is now nearly 80.) My grandfather went blind when my mum was still a kid. I grew up with a little brother who was deaf but through surgery and speech therapy had overcome that issue by the first grade. My father was very seriously ill multiple times during my lifetime and we now know he shares the same genetic condition I was recently diagnosed with--possibly accounting for much of his past and continuing trouble.
I know illness and constant pain. In myself and others. In people I love. I know broken bodies. I've experienced and seen first hand the loss of dignity involved. And I know minds deemed different or unfit as well.
And all I ever saw in any of it in the end, was beauty and value and strength of character which you often don't get to see in "normal" people. And also often a certain kind of love that is open, innocent, communicative, full of trust and wonder. I am not using these words lightly. I am dead serious. There can be such a refreshing honesty to disabled people I've found as well. Just read the tattoo on the back of my neck. Which makes the way we who's needs can be so different are treated so much more deplorable.
When I taught and tutored special needs kids I learned--it came very easily to me but it doesn't for many people: YOU adapt to the child's individual needs. That's how you succeed. You do not try to bend or force the individual to the "normal","accepted","standard", usual way of doing things.
That doesn't just apply to people categorized as disabled or special needs. It applies to everyone. When you individualize your approach to education, healthcare, parenting, interpersonal relationships to a persons unique needs you will likely get healthier happier results.
That "usual" way--hasn't worked out for many people I know. Very very few in fact. It certainly did me more harm than good.
The medical community could do to learn that lesson as well as the rest of society in general. Current attitudes and practices do get tiresome, insulting, hurtful. Both physically and emotionally.
http://www.withalittlemoxie.com/
Tuesday, March 27, 2012
What the Cultural Value of Disability and Star Trek Have in Common
The Spirit Catches You and You Fall Down is a the story of a fiercely frustrating cultural clash, the crux of which lies the differing perceptions of one particular disability: epilepsy.
In the story, a Hmong refugee child living with her family in Central California has epilepsy, complete with grand mal seizures. Epilepsy, viewed within the Hmong culture, is a blessing, a gift from the gods, in which the spirit of the gods catches within the mortal soul and makes one fall. The Hmong family doesn't want to "cure" their daughter; the American social, health and protection workers do.
***
This story has been tickling the edges of my mind for a while in that 'what was it?' kind of tantalizing, trying-to-put-my-finger-on-it way. Like picking a sliver of eggshell out of a bowl of eggs, the tiny piece slipping once again just as I get a little closer.
And then, I got it. I got that little thing under my finger. I connected what it was that I wanted to remember: the cultural value of disability.
***
In this storm that has been raging regarding disability, prenatal testing and the economics of disability, case after case is made on the value of a life that is different - or the power of choice. The importance of accurate advice to those women who need and want it.
I agree with all that and what I also think is that nothing will fundamentally change so long as our culture continues to regard disability as nothing but a lodestone, occasionally paraded out as "inspiration".
We do not, as a society, look at individuals with disabilities as unique people with unique gifts. Not unique as that condescending "special"; rather, unique as each flower is unique, each star, blade of grass, hummingbird - unique as each and every human being is unique. No more, no less, and all worthy of delight in their respective ways.
***
As a society, we do not seek out what an individual with Down syndrome - or _______ fill in the blank disability - is going to offer us; we try and force that person into the societal box. We say, fix that, that and that and you'll be good for this, this and that. We assess, we measure, we say, fine you are at this level and so you are fit for x,y.z. Go make some coffee at Starbucks because you can handle repetition and have a skill-set suited to simple tasks.
We don't say: you dance like a wild mad woman and your joy brings joy so let us use you as a healer. Let us respect that you have this energy and power and can bring real good and positive change to the depressed, the unhappy, the people that need your light.
We don't say, you are Deaf - you see, observe and note: let us respect that you have the power to communicate without words, let us use your power and you will be our ambassador in situations in which we need to observe, see, and note.
We don't say, you are highly sensitive - your body is like the canary in the mine. Let us respect and honour your sensitivity and learn what needs changing in our environment. Something is wrong, is off, and you can help us understand what that is.
We don't say, you are depressed - and so many of us are depressed! What is happening within our collective whole - the framework in which we build this thing called 'culture' upon? We were not born with this kind of sorrow; something about the way we are choosing to live is affecting us negatively: let's find it. Change it. Live in different ways that do not cause us to become sad.
We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.
Those of us with a child with a disability know that our children bring with them gifts, just as all children do. We clamour for attention - we want the world to know this truth.We say, 'hey! hey! look - look at my kid, look at my life! we are normal - I was wrong, so wrong, before disability came into my life!' and the outside world scoffs and thinks we are somehow trying to validate the fact that we have a child who is different, "she's making the best of a bad situation," they say. And we want them to know, 'no, no! REALLY! I am telling you the solid gold truth!"
Perhaps I am jaded, but while I think that jumping up and down and clamouring does more good than nothing, I have a hard time seeing that anything will truly change unless our collective perception of disability itself changes.
***
One last thought: Star Trek provided scientists with the inspiration to do more, try harder. They saw what was fantasy on TV in the time in which computers were as big as a room. Engineers were inspired to try and create cell phones, smaller computers, visual phones, automatically-opening doors - and they did.
They didn't see Star Trek as an "intergalactic" floating bucket of impossible dreams. They saw it as opportunity.
This is what I crave for us with disabilities: that disability be recognized as an opportunity for growth. That it be respected for contributing in valid ways to our society, in and of itself as the diverse thinking and experience that all people inherently bring contribute to a vastly richer human race.
VIEW 18 of 18 COMMENTS
lethal:
jayded1:
So glad I stumbled across this blog post. As a person with M.S since age 11 I know exactly how you feel.