Sunday, March 16, 2014
Thursday, April 12, 2012
Why I have been away for so long... and I am back.
Dear friends and strangers as some of you may have noticed I have been away from this blog for a very long time. I am extremely busy. My poetry, my friends, my physical exercises take a long time and I can barely keep up. I dont know if this is my goodbye note to the blog. I think disability and sexuality is a very important topic but I also feel I can use my disability as an excuse to justify my sexual insecurity and put words into other peoples mouths. When maybe it is more simple then what I make it out to be: If people find me attractive they can get over their prejudices if I have played my cards right - if not its their loss, or perhaps it was not meant be, or I said something at the wrong moment but really that happens to people who are not in wheelchairs as well. While know abelisim is real and prejudice is real I refuse now to let that make me fall into a state where I whine about "lack of sexual life." When I think about it I have had some wonderful sexual experiences even if they have been few, Ive known romance, Ive known what is to fall in love, out of love, to be heart broken and break peoples hearts so goodbye self pitty. If I dont compare my sexual life to those of others - Ive had a pretty good time with its ups and downs. So goodbye blog? I dont know. I NEED MORE COMENTS AND FEEDBACK TO KEEP THIS BLOG GOING. I WONT BE OFFENDED IF I DONT GET THEM, BUT IT IS NOT WORTH WHILE IF THEY ARE JUST MESSAGES IN A BOTTLE IN THE MIDDLE OF CYBERSPACE.
Wednesday, August 25, 2010
Interview series: A conversation with Cara Liebowitz
Hello everyone! I am back. Hadn't blogged in while do to the proccess of setting myself up for independent living after college. Its good to get it "rolling again" (pun intended) wheelchair tracks. I am very excited to be beginning our interview series - discussing a variety of topics in relation to disability. It will feature people from many different ages and cultural backgrounds and though it will mostly cover people with disability it welcomes experiences from able bodied people as well who wish to share their questions and comments. Let me warmly introduce Cara Liebowitz!
Cara Liebowitz is a disability rights activist and writer who has cerebral palsy. She is the creator of Abilities4u (http://www.abilities4u.com), an resource designed for parents of children with disabilities,and Mosaic Webzine (http://www.mosaicwebzine.org), a semi-monthly online magazine that focuses on disability culture and pride. She has been featured on News 12 Long Island and Disability News and Views Radio Show, as well as several times in Newsday for her advocacy efforts. In January 2010, she was one of twenty teens from around the country selected to attend a National Youth Inclusion Summit in Washington DC. The ideas explored at the Summit have been expanded into a national campaign for social inclusion of people with disabilities. Visit http://www.iamnorm.org for more information. Cara blogs regularly at http://www.candidlycrippled.blogspot.com under the penname Spaz Girl about growing up with a disability and exploring the realm of disability culture. She generously granted me an interview which begins the “interview series” on this blog!
E: One of the things Ive struggled with is expressing myself as a sexual being. Also Have you struggled with asserting your sexuality in relation to your disability?
C: Although I’m still in my teens and haven’t had much experience with this, I have struggled with it, especially as I get older. I’m very insecure about my sexuality around ABs, especially. I just don’t feel sexy in the “normal” world. When I’m at a dance with a majority of ABs, I dance and I feel awkward and spastic (ha, ironic double meaning there…), and I don’t feel like people acknowledge me as a sexual being. But at a crip dance, like at camp or a similarly crip-dominated event, we’re allcrippled, so it’s like that part of the equation is removed and the playing field is leveled. At a crip dance I do feel sexy, and I feel I can assert the sensual side of myself comfortably when I’m in a crip-dominated environment.
E: Do you think that " able bodied people have can false assumptions about disability and sexuality?
C: I don’t know if they have assumptions so much; at this point in time I think most of the population logically knows that it is possible for us to have sex, they just don’t want to think about it. It just doesn’t fit with the image they have of us, especially those of us who are dependent on others for their personal care needs. Society wants to demean us, so they paint a picture of disabled people being either perpetual children (and therefore sexless beings) or pitiful, tragic objects that only serve as scare tactics (you could end up like THIS!). So neither of those stereotypes fits well with sex. Also, they [ABs] are afraid of being labeled as some kind of pervert for thinking a crippled guy/girl is sexy or attractive, because society dictates that in order to be sexy/attractive, you need to be able-bodied, as well as a whole host of other unrealistic characteristics. Therefore, they spend so much time trying not to think about it, that when the topic comes up they’re awkward and embarrassed because they’re uncomfortable with the subject. I’m still young, as I mentioned before, and I haven’t really had much experience with romantic/sexual relationships, and there’s not much I really want to reveal on the Internet, but I will say that I am in a very loving relationship right now and I wouldn’t trade this relationship for anything. I don’t think people judge my relationship in relation to my disability too much, as my disability is fairly mild. I think a lot more of that stereotyping and judging goes on as the disability gets more severe and as the effects of the disability become a lot less “presentable” to society. There are certain aspects of disability that are very “presentable” in our society, like the “stereotypical crip” image you always see in the media, particularly in the movies and on TV. It’s almost always someone with strictly a lower body disability who uses a very slim and sporty manual wheelchair. That’s the surface face of disability. People can deal with just “my legs don’t work”. It’s simple, easy. So therefore it’s easier for ABs to wrap their minds around those types of crips being sexual beings. But complicate things even a tiny bit – make it quadriplegia instead of paraplegia – and it’s like you’ve just blown people’s minds. The more severe of a disability you get, the harder it is for people to accept that a disabled person is a sexual being, in my opinion. And when a non-disabled or a mildly disabled person dates somebody more severely disabled, that’s a whole other can of worms, so to speak. Like I said before, society dictates that disabled people are not sexy/attractive for a whole host of reasons, so people automatically assume that the non-disabled person is the caretaker, or some other relation to the disabled person, because there’s no way a disabled person can ever be in a romantic relationship, and there’s even less of a chance that a non-disabled person would actually consider the disabled person attractive and want to be in a relationship with that person. (note the sarcasm)
E: What do think are possible strategies to establish a greater dialogue at a personal and collective level about these topics and let "normal people" know that we are sexual beings just like everyone?
C: I think the media has a big part in it. The media doesn’t portray disabled people as sexual beings, so therefore people don’t think of us as sexual beings. If the media portrays us at all, it’s usually only as the “token crippled character” or as a joke, and not as an actual person with a personality and a background of their own. There are almost never regularly appearing disabled characters on TV and if there are, they are usually stereotypical crips (see above). We’ve already seen the media do amazing things for other civil rights movements/minorities, now it needs to start doing things for the disability community.
E:Feel free to share in more broad terms about yourself your interests ways in which you feel your disability does and doesn't define your identity.
C: My disability influences my identity in almost every conceivable way, shape and form. It is not my whole identity; rather, it colors every aspect of my identity. It is a layer of myself that permeates everything I say and do. Picture something wrapped in Saran Wrap or other clear wrap – you can still see what is underneath but it is through the layer of wrap. That’s how disability is to me, if that makes sense. Only I cannot be extricated from my disability. There is no “real me” or “able-bodied me” hidden underneath the disability. It is just who I am. And I’m proud of it – I wouldn’t trade my disability for anything. It has given me a privileged insight into a rich, vibrant culture and community, one which I might never have realized was there if I wasn’t disabled. I feel honored to be a part of such a diverse group of people with such compelling stories to tell. It annoys me when people automatically assume that being disabled is such a horrible and tragic thing, because that’s not how it is at all. It’s just a different experience, and people are always afraid of differences. It would be considered absurd and bigoted if anyone ever said that being black made life less worth living, or that blacks should aspire to be white. Yet those judgments are made without a second thought every single day on disabled people and disability. My blog aims to dispel these myths about being disabled and to throw people into the world of being disabled. It’s very in-your-face, like being thrust into a foreign country where you don’t speak the language. I don’t bother with political correctness or any fluff – that’s why the original title of my blog was Candidly Crippled. My blog and other writing goes right to the core of the disability experience: an experience that is often difficult and painful in more ways than one, but also an experience so breathtakingly beautiful. I want people to get as complete of a journey into “Holland” (reference to an essay written by Emily Perl Kingsley about parenting a child with a disability) as possible – the good, the bad, and the ugly.
E: Some friends and acquaintances I've had with a physical disability don't feel conformable talking in a public way about their sexual experiences. They will say things like “ I'm not an anthropological object to be studied” Others like myself feel its important to be public about it because it defies a silence in our society. Where do you draw the line?
C: Honestly, I really don’t know. I haven’t had really any experience with that type of thing and when I do I’m not sure how publicly I’ll want to smash the stereotypes. So my answer to that one is I really don’t know.
E:What terms labels or language do you feel speaks or doesn't speak of your disability accurately?
C: Honestly, I think all the terms used to describe us are pretty bad. It’s just a question of picking the best bad one. And what language I use depends on who I’m with and what point I’m trying to make. If I’m among fellow disabled people, I’ll use “crip” and “crippled”, because I feel it’s a term of pride at this point, and a way of “taking back” words previously used against us. If I’m among ABs I’ll usually use “disabled person” and “person with a disability” fairly interchangeably; one part of me wholeheartedly embraces the concept of people first language, however, another part of me agrees with the points that Jim Sinclair makes in his essay “Why I Dislike People First Language”. So I usually go back and forth with those two. Obviously labels are needed in terms of legislation and getting us accommodations we need, but for the most part, I don’t think they’re really necessary – we’re just people, just like everyone else.
Cara Liebowitz is a disability rights activist and writer who has cerebral palsy. She is the creator of Abilities4u (http://www.abilities4u.com), an resource designed for parents of children with disabilities,and Mosaic Webzine (http://www.mosaicwebzine.org), a semi-monthly online magazine that focuses on disability culture and pride. She has been featured on News 12 Long Island and Disability News and Views Radio Show, as well as several times in Newsday for her advocacy efforts. In January 2010, she was one of twenty teens from around the country selected to attend a National Youth Inclusion Summit in Washington DC. The ideas explored at the Summit have been expanded into a national campaign for social inclusion of people with disabilities. Visit http://www.iamnorm.org for more information. Cara blogs regularly at http://www.candidlycrippled.blogspot.com under the penname Spaz Girl about growing up with a disability and exploring the realm of disability culture. She generously granted me an interview which begins the “interview series” on this blog!
E: One of the things Ive struggled with is expressing myself as a sexual being. Also Have you struggled with asserting your sexuality in relation to your disability?
C: Although I’m still in my teens and haven’t had much experience with this, I have struggled with it, especially as I get older. I’m very insecure about my sexuality around ABs, especially. I just don’t feel sexy in the “normal” world. When I’m at a dance with a majority of ABs, I dance and I feel awkward and spastic (ha, ironic double meaning there…), and I don’t feel like people acknowledge me as a sexual being. But at a crip dance, like at camp or a similarly crip-dominated event, we’re allcrippled, so it’s like that part of the equation is removed and the playing field is leveled. At a crip dance I do feel sexy, and I feel I can assert the sensual side of myself comfortably when I’m in a crip-dominated environment.
E: Do you think that " able bodied people have can false assumptions about disability and sexuality?
C: I don’t know if they have assumptions so much; at this point in time I think most of the population logically knows that it is possible for us to have sex, they just don’t want to think about it. It just doesn’t fit with the image they have of us, especially those of us who are dependent on others for their personal care needs. Society wants to demean us, so they paint a picture of disabled people being either perpetual children (and therefore sexless beings) or pitiful, tragic objects that only serve as scare tactics (you could end up like THIS!). So neither of those stereotypes fits well with sex. Also, they [ABs] are afraid of being labeled as some kind of pervert for thinking a crippled guy/girl is sexy or attractive, because society dictates that in order to be sexy/attractive, you need to be able-bodied, as well as a whole host of other unrealistic characteristics. Therefore, they spend so much time trying not to think about it, that when the topic comes up they’re awkward and embarrassed because they’re uncomfortable with the subject. I’m still young, as I mentioned before, and I haven’t really had much experience with romantic/sexual relationships, and there’s not much I really want to reveal on the Internet, but I will say that I am in a very loving relationship right now and I wouldn’t trade this relationship for anything. I don’t think people judge my relationship in relation to my disability too much, as my disability is fairly mild. I think a lot more of that stereotyping and judging goes on as the disability gets more severe and as the effects of the disability become a lot less “presentable” to society. There are certain aspects of disability that are very “presentable” in our society, like the “stereotypical crip” image you always see in the media, particularly in the movies and on TV. It’s almost always someone with strictly a lower body disability who uses a very slim and sporty manual wheelchair. That’s the surface face of disability. People can deal with just “my legs don’t work”. It’s simple, easy. So therefore it’s easier for ABs to wrap their minds around those types of crips being sexual beings. But complicate things even a tiny bit – make it quadriplegia instead of paraplegia – and it’s like you’ve just blown people’s minds. The more severe of a disability you get, the harder it is for people to accept that a disabled person is a sexual being, in my opinion. And when a non-disabled or a mildly disabled person dates somebody more severely disabled, that’s a whole other can of worms, so to speak. Like I said before, society dictates that disabled people are not sexy/attractive for a whole host of reasons, so people automatically assume that the non-disabled person is the caretaker, or some other relation to the disabled person, because there’s no way a disabled person can ever be in a romantic relationship, and there’s even less of a chance that a non-disabled person would actually consider the disabled person attractive and want to be in a relationship with that person. (note the sarcasm)
E: What do think are possible strategies to establish a greater dialogue at a personal and collective level about these topics and let "normal people" know that we are sexual beings just like everyone?
C: I think the media has a big part in it. The media doesn’t portray disabled people as sexual beings, so therefore people don’t think of us as sexual beings. If the media portrays us at all, it’s usually only as the “token crippled character” or as a joke, and not as an actual person with a personality and a background of their own. There are almost never regularly appearing disabled characters on TV and if there are, they are usually stereotypical crips (see above). We’ve already seen the media do amazing things for other civil rights movements/minorities, now it needs to start doing things for the disability community.
E:Feel free to share in more broad terms about yourself your interests ways in which you feel your disability does and doesn't define your identity.
C: My disability influences my identity in almost every conceivable way, shape and form. It is not my whole identity; rather, it colors every aspect of my identity. It is a layer of myself that permeates everything I say and do. Picture something wrapped in Saran Wrap or other clear wrap – you can still see what is underneath but it is through the layer of wrap. That’s how disability is to me, if that makes sense. Only I cannot be extricated from my disability. There is no “real me” or “able-bodied me” hidden underneath the disability. It is just who I am. And I’m proud of it – I wouldn’t trade my disability for anything. It has given me a privileged insight into a rich, vibrant culture and community, one which I might never have realized was there if I wasn’t disabled. I feel honored to be a part of such a diverse group of people with such compelling stories to tell. It annoys me when people automatically assume that being disabled is such a horrible and tragic thing, because that’s not how it is at all. It’s just a different experience, and people are always afraid of differences. It would be considered absurd and bigoted if anyone ever said that being black made life less worth living, or that blacks should aspire to be white. Yet those judgments are made without a second thought every single day on disabled people and disability. My blog aims to dispel these myths about being disabled and to throw people into the world of being disabled. It’s very in-your-face, like being thrust into a foreign country where you don’t speak the language. I don’t bother with political correctness or any fluff – that’s why the original title of my blog was Candidly Crippled. My blog and other writing goes right to the core of the disability experience: an experience that is often difficult and painful in more ways than one, but also an experience so breathtakingly beautiful. I want people to get as complete of a journey into “Holland” (reference to an essay written by Emily Perl Kingsley about parenting a child with a disability) as possible – the good, the bad, and the ugly.
E: Some friends and acquaintances I've had with a physical disability don't feel conformable talking in a public way about their sexual experiences. They will say things like “ I'm not an anthropological object to be studied” Others like myself feel its important to be public about it because it defies a silence in our society. Where do you draw the line?
C: Honestly, I really don’t know. I haven’t had really any experience with that type of thing and when I do I’m not sure how publicly I’ll want to smash the stereotypes. So my answer to that one is I really don’t know.
E:What terms labels or language do you feel speaks or doesn't speak of your disability accurately?
C: Honestly, I think all the terms used to describe us are pretty bad. It’s just a question of picking the best bad one. And what language I use depends on who I’m with and what point I’m trying to make. If I’m among fellow disabled people, I’ll use “crip” and “crippled”, because I feel it’s a term of pride at this point, and a way of “taking back” words previously used against us. If I’m among ABs I’ll usually use “disabled person” and “person with a disability” fairly interchangeably; one part of me wholeheartedly embraces the concept of people first language, however, another part of me agrees with the points that Jim Sinclair makes in his essay “Why I Dislike People First Language”. So I usually go back and forth with those two. Obviously labels are needed in terms of legislation and getting us accommodations we need, but for the most part, I don’t think they’re really necessary – we’re just people, just like everyone else.
Thursday, July 8, 2010
THE WOODS
She pushed
my wheelchair
into the woods
Before I could
tuck myself under
the heavy blanket
of a metaphysical subject—
a midsummer night descended
suddenly upon us
and we slipped
into bodies of moss and leaf,
braided by the thin strands of the rain.
Her hair,
a labyrinth of orange light,
her eyes alert like skittish mares
the turn of her voice
bright autumn
I, with her in my arms...
became at once
a line of smoke
where sky meets sea
over the worlds
curved blue lip
and one coherent piece
of cosmic clay
feeling wanted for the first time
not in spite of my body
but because of it
every one of my cells opening
into gardens of motion and silence.
Then like a smiling skull
cut out of tissue paper
and strung in a row of prayer flags
for the time when the dead
laugh with the living
our day floated thru the night...
my wheelchair
into the woods
Before I could
tuck myself under
the heavy blanket
of a metaphysical subject—
a midsummer night descended
suddenly upon us
and we slipped
into bodies of moss and leaf,
braided by the thin strands of the rain.
Her hair,
a labyrinth of orange light,
her eyes alert like skittish mares
the turn of her voice
bright autumn
I, with her in my arms...
became at once
a line of smoke
where sky meets sea
over the worlds
curved blue lip
and one coherent piece
of cosmic clay
feeling wanted for the first time
not in spite of my body
but because of it
every one of my cells opening
into gardens of motion and silence.
Then like a smiling skull
cut out of tissue paper
and strung in a row of prayer flags
for the time when the dead
laugh with the living
our day floated thru the night...
Saturday, June 26, 2010
Prejudice towards disability fron a historical stand point
This is a paper I wrote in college. Its long and a little outdated but I think despite the amateur writing style I learned some useful things in the process:
When I was born I weighed 900 grams and was literally the size of a mango. My dad could carry me in a single cupped hand. I have been accompanied all my life by one physical characteristic that as irrelevant as it might be to my personhood has determined much of the circumstances of my life: a disability. I have been in a wheelchair ever since I can remember. My limited mobility is due to having cerebral palsy, which is a muscular condition brought about by my premature birth. The part of my brain responsible for communicating with my legs to enable me to walk unaided did not receive enough oxygen, causing muscular spasticity in my lower extremities. The degree of spasticity varies from person to person .Luckily in my case my upper body has close to normal mobility and my speech and intellectual abilities are intact.
Everyone that I have met has treated me with dignity and love and contrary to what one might expect, no one has made fun of me in a negative way because I am in a wheelchair. However being disabled has presented me with challenges and barriers that I am working through. It has taken me a long time to develop friendships where people consistently come to visit me and invite me to participate in social events. Finding a girlfriend and shifting people’s perception so that they may see me as a fully erotic and sexually capable human being has been an even harder endeavor.
While being in a wheelchair has meant that at times I am much slower at accomplishing every day tasks than other people, and having to undergo surgeries can be painful with a long process of recuperation, for the most part being in a wheelchair is so natural to me that I am not bothered or upset by it. This has lead me to think that the “problem” that physically disabled people have to face is not that we are disabled but rather that we can be limited by subtle social prejudices that parents, teachers and peers can unconsciously impose upon us as a result of our difference causing an implicit form of segregation. This problem cannot be solved only by making more places wheelchair accessible. It is deeply connected with the ability to embrace diversity and must be treated from the inside out to change an attitude of exclusion to one of inclusion.
My aim is to examine several theories regarding the origins of prejudice treating disability as a historical phenomenon relating the information to my own experience to then offer tentative solutions to demystify the distance and fear that some individuals feel when meeting a disabled person. This investigation places a greater emphasis on physical disabilities because they are closer to my own experience but its repercussions should not be confined to disabled persons, it should also invite us to dismantle the false illusion of normality to give dissimilarity the acknowledgment and worthiness it deserves.
Theories about the history of disability as prejudice
The non disabled population often is subliminally reminded of the archetype of the monster when encountering a person with a disability. I don’t mean to suggest that they believe we are evil but there seems to be a strong instinct to turn away from us or stare in shock as if frozen for a moment by the gaze of Medusa. Carol Poore unmasks this association in her essay Disability as Disobedience by illustrating the way that people viewed the disabled in the middle ages:
“The view that misshapen or mentally defective infants were somehow less than human was connected to a perception of their differences as the physical evidence of magical or divine intervention into their lives… – this is vividly evidenced in artist’s depictions of witches and devils as both lustful and hideously deformed creatures... Luther saw the devil as the source of all deafness, dumbness, lameness and fever and believed that “idiots” as the devils changelings should be drowned in order to stamp out the devils work. (Poore: 5:11)
The association between the hideously evil monster and the deformed body was a vital agent in the creation of an irrational hidden sensation of fear when encountering a disabled person in passing. I don’t think the non disabled necessarily would identify the feeling as fear, but at an unconscious level the shock a “normal person” might feel when encountering someone with a disability is linked with the old impulse to stay away from what is supernatural in the sense that it transcends what is commonly seen as natural.
Susan Schoon Eberly finds that “children born with physical defects have evoked a religious response since at least as early as 2000 B.C.”(” Page 1, paragraph 2) and uncovers evidence of people’s early reactions to disability in the myth of the changeling:
“The pattern this grieving process takes is clear, both in clinical practice and in many of the changeling’s tales. First there is a time of rejection, of denial: the patterns which this denial takes are repeated in tale after tale. Wentz tells of a family near Breadge in which there was a “…fine baby girl,… and the piskies came and took it and put a withered child in its place. The withered child lived to be 20 years old and was no larger when it died than when the piskies brought it”
(Page 4, paragraph 4)
The myth of a supernatural species taking away a normal child and replacing it with a supernatural one is really a metaphor for the foreignness some parents may feel when encountering a disabled child Both with the disabled person and the changeling a common parental response is: “this is not my child”. Then comes a phase where the parents in their anger and guilt often
“either force the changeling to reveal its true nature or force its
fairy parents to return their original child” (Page 4, paragraph 5).
This alludes to the phase where the parents of the disabled battle between seeking to understand their child’s distinct identity and overcoming the feelings of guilt that something could have been done to prevent the “damage”. Finally we can witness the acceptance of the disabled person in this stunning description of the changelings’ splendor:
“Nothing under heaven could have had a more beautiful face… (but) he could not move so much as one joint… he was seldom seen to smile but if anyone called him fairy elf, he would frown and fix his eyes earnestly on those who said it, as if he would look them through.” (page 4, paragraph 4).
The descriptions of changelings documented way before and through the middle ages astoundingly fit many of the physical characteristics of a disabled child. “It is just possible that the wild dance of a changeling may in fact describe the movements of a person with severe athetoid cerebral palsy, where there is a predominance of involuntary movements. This is merely one of the examples she offers to prove the medical validity of her interpretation.
Unlike what the myth of the changeling proposes I was accepted ever since I was born and my parents did not undergo the process of grief that Schoon Eberly depicts. Yet I am aware that not everyone is as fortunate as I am. Eberly notes that in the pagan era the disabled were linked to the underworld and sometimes to a formidable divine power, suggesting the potential gifts of people with different abilities. Whether this is true or just another form of prejudice it is necessary for the non-disabled population to be aware that they might carry in their collective unconscious the weight of that belief when encountering someone with a disability. In my case, being in a wheelchair along with having a strong spiritual path has given me some supernatural or extra sensorial abilities such as “lucid dreaming”, an avid grasp of people’s emotional makeup at first glance, and a heightened sense of intuition. The peers I know who are in wheelchairs also possess a freedom of imagination that must be exploited and respected; their earned or inherent intuitive gifts should be cultivated. On the other hand, in these times there can be an immediate sense of admiration and distant respect for somebody that has a disability simply because they do; sanctifying people simply because they are in a wheelchair is another form of prejudice that allows the non-disabled person to contemplate us at a distance and prevent true inclusion. While this irrational form of praise can be unpleasant, pity and disgust are far more brutal forms of racism. Racism is a term that can no longer be applied on the basis of a certain skin color; it is at its very root any kind of categorization that is applied to people who share a physical, mental or social status that is seen as deficient. The repulsion that a non-disabled person may feel when encountering someone who drools a little or eats in a messy way may come from a very strong old urge to be part of a perfect race which can only include the strong, the beautiful, the brave. Intelligence is a desirable virtue as long as it is capable of serving society in a tangible, measurable way. Even great minds, like Plato and Aristotle were seduced by a longing for a perfect race. They held that :
“… infirm children should be done away with in order to further the rearing of the ideal man… midwives were… legally obliged to do away with those infants not recognized as truly human…only a healthy appearance guaranteed that it was.”
(Disability or Disobedience?, Poore, page 4, paragraph 2).
It saddens me to realize how much of modern medicine and science are invested in perfecting nature’s plan, tampering with the very substances that give us birth. Attempting to heal sickness is a worthy cause, but when this involves manipulating the way in which God or Chaos decides to bring life into the world it is a whimsical experiment to change the components of life itself just for the sake of beauty and the concern with preventing something that may be a blessing and not a curse. The implications that this manipulation of nature can have on our environment have already begun to show evidence that this could lead us to our destruction as a human race.
Today modern medicine is concentrating so much of its resources- human and economic, on “genetic medicine”. They are chasing after the gene behind Alzheimer’s, obesity, alcoholism, drug abuse, etc. etc, dissecting the human genome to offer a few and very rich elite the possibility of cures for diseases that are so often related to bad eating habits and emotional suffering. Instead, millions of children will continue to go hungry and die of easily curable diseases, because they are clearly not part of their idea of a superior race:
“Since the dawn of time, man has been trying to figure out how to procreate the “perfect” child—free of hereditary diseases, physical defects and internal imperfections. Now, more than ever, that urge still exists…. (Page 1, paragraph 1)
The Nazis believed that if any German citizens were diseased, were born physically or mentally disabled, or were part-Jewish, it was necessary to sterilize them to prevent further breeding (pg. 3, paragraph 2)”
(Human Eugenics: Whose Perception of Perfection, Parendi Mehta, page 1, paragraph 1)
The obsession to be absolutely free of sickness and deformity adds to the unconscious prejudice that a non-disabled person has toward someone that reminds them that nature itself is beyond the control of men. I suspect the need for racial cleansing comes from a very strong impulse to survive. Humans in their earliest incarnation coexisted with animals that were much stronger then they were. To survive they needed to use brutal force and a cunning intelligence. When they discovered it was easier to hunt and live in small communities there was more time for reflection, sweetness and luxury but in the beginning those with a physical deformity or disability probably died quickly. The reality that we needed to eat or be eaten is so engraved within us that we can get caught in valuing strength over softness, kindness, lightheartness and beauty. Later disability stopped becoming something supernatural and became a medical condition. This new scientific understanding had its advantages— disabled people were no longer seen as evil or as a people to be afraid of. In the future this could help them receive treatment to strengthen and relax their muscles and alleviate their pain. In the eighteenth century with the introduction of science a new form of prejudice emerged. Disabled people were linked indiscriminately with those that suffered from, a highly destructive degenerative disease. Psychopaths, autistic and disabled people were in the same category of people who “strayed from medical normalcy”.
Quoting David Pfeiffer, Dais reminds us, in his article Crips Strike Back, that normality is an ideology and a cultural illusion that is closely linked to our modern society:
David Pfeiffer writes that normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal”…. The use of the word normal in reference to physical bodies appears in English merely 150 years ago, coinciding with the birth of statistics and eugenics… The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand.
Crips Strike back: The Rise of Disability Studies Leonard J. Dais 5: 2 & 3
In Mexico I have experienced a form of prejudice when people in passing ask my dad, “poor thing, he’s sick, right?” The pity towards the disabled is the “sickness” of the non-disabled, i.e. their feelings of superiority and lack of connection with their own limitations. As a friend of my mom once told her, we all have a disability, the advantage that people in wheel chairs or any other kind of physical difference have over us is that their limitations are obviously visible and ours are not. The concept of normality is fuelled or created by a rigid concept of beauty- This narrowness of aesthetics related to the buying and selling of products is linked to a concept of what is attractive and acceptable by those countries who have economic power and influence. An example is that world-wide it is more usual to see white, blond babies announcing disposable diapers, even when they are being sold to an indigenous population.
Leonard J. Dais speaks of the importance of recuperating honesty when addressing the issue of disability. Terms like different abilities and wheelchair bound are a counter-producing effort to disguise or soften our physical condition. Like Dais I advocate that we should not use light terms to describe our disabilities. For me the goal is to get to the point where that limitation of movement becomes so transparent and irrelevant to who we are, that we do not need to constantly come up with new names to justify it.
Mark Mossman, in his essay Visible Disability in the College Classroom coins the term “super-crip” to mock the attitude that the normates never give us the opportunity of seeing us just like them. As soon as we do something that the non-disabled population would do, we become heroes. I have witnessed that when I get up to walk with my braces and people start applauding, assuming that it is a big effort. For me it is a time to exercise my body, and a pleasure. Also, when we excel in something that usually only normal people can do, we are not invited to the community of normals, we are thrown into exile by becoming heroes; super-crips!
The idea of the super-crip as with the stereotype of the sick makes our sexual identity denied until we find someone that is open enough to see past a dark, still hidden history of separation. To solve this it is important for the disabled community to provide more literature and information to help the general population bypass their prejudice. I found no scholarly articles regarding the issue of sexuality and disability. This compels me to research more deeply into the topic in a utopian dream so that one day disabled people are integrated as valuable actors in the movies, in commercials, and in any kind of job they wish to pursue, with the same possibility of being in a couple that a non-disabled person would have. Disability should be treated as a historical issue that has changed over time and it is as much of a racial and cultural struggle as the fight against aids, or gay-lesbian movement and gender equality. Once we treat disability as a cultural phenomena, disability studies could be integrated as a required study that might be placed in the branches of history, sociology and, or, cultural perspectives. This would imply not only a better world for the persons with a disability but also for anyone that in any way is outside of what society views as acceptable.
When I was born I weighed 900 grams and was literally the size of a mango. My dad could carry me in a single cupped hand. I have been accompanied all my life by one physical characteristic that as irrelevant as it might be to my personhood has determined much of the circumstances of my life: a disability. I have been in a wheelchair ever since I can remember. My limited mobility is due to having cerebral palsy, which is a muscular condition brought about by my premature birth. The part of my brain responsible for communicating with my legs to enable me to walk unaided did not receive enough oxygen, causing muscular spasticity in my lower extremities. The degree of spasticity varies from person to person .Luckily in my case my upper body has close to normal mobility and my speech and intellectual abilities are intact.
Everyone that I have met has treated me with dignity and love and contrary to what one might expect, no one has made fun of me in a negative way because I am in a wheelchair. However being disabled has presented me with challenges and barriers that I am working through. It has taken me a long time to develop friendships where people consistently come to visit me and invite me to participate in social events. Finding a girlfriend and shifting people’s perception so that they may see me as a fully erotic and sexually capable human being has been an even harder endeavor.
While being in a wheelchair has meant that at times I am much slower at accomplishing every day tasks than other people, and having to undergo surgeries can be painful with a long process of recuperation, for the most part being in a wheelchair is so natural to me that I am not bothered or upset by it. This has lead me to think that the “problem” that physically disabled people have to face is not that we are disabled but rather that we can be limited by subtle social prejudices that parents, teachers and peers can unconsciously impose upon us as a result of our difference causing an implicit form of segregation. This problem cannot be solved only by making more places wheelchair accessible. It is deeply connected with the ability to embrace diversity and must be treated from the inside out to change an attitude of exclusion to one of inclusion.
My aim is to examine several theories regarding the origins of prejudice treating disability as a historical phenomenon relating the information to my own experience to then offer tentative solutions to demystify the distance and fear that some individuals feel when meeting a disabled person. This investigation places a greater emphasis on physical disabilities because they are closer to my own experience but its repercussions should not be confined to disabled persons, it should also invite us to dismantle the false illusion of normality to give dissimilarity the acknowledgment and worthiness it deserves.
Theories about the history of disability as prejudice
The non disabled population often is subliminally reminded of the archetype of the monster when encountering a person with a disability. I don’t mean to suggest that they believe we are evil but there seems to be a strong instinct to turn away from us or stare in shock as if frozen for a moment by the gaze of Medusa. Carol Poore unmasks this association in her essay Disability as Disobedience by illustrating the way that people viewed the disabled in the middle ages:
“The view that misshapen or mentally defective infants were somehow less than human was connected to a perception of their differences as the physical evidence of magical or divine intervention into their lives… – this is vividly evidenced in artist’s depictions of witches and devils as both lustful and hideously deformed creatures... Luther saw the devil as the source of all deafness, dumbness, lameness and fever and believed that “idiots” as the devils changelings should be drowned in order to stamp out the devils work. (Poore: 5:11)
The association between the hideously evil monster and the deformed body was a vital agent in the creation of an irrational hidden sensation of fear when encountering a disabled person in passing. I don’t think the non disabled necessarily would identify the feeling as fear, but at an unconscious level the shock a “normal person” might feel when encountering someone with a disability is linked with the old impulse to stay away from what is supernatural in the sense that it transcends what is commonly seen as natural.
Susan Schoon Eberly finds that “children born with physical defects have evoked a religious response since at least as early as 2000 B.C.”(” Page 1, paragraph 2) and uncovers evidence of people’s early reactions to disability in the myth of the changeling:
“The pattern this grieving process takes is clear, both in clinical practice and in many of the changeling’s tales. First there is a time of rejection, of denial: the patterns which this denial takes are repeated in tale after tale. Wentz tells of a family near Breadge in which there was a “…fine baby girl,… and the piskies came and took it and put a withered child in its place. The withered child lived to be 20 years old and was no larger when it died than when the piskies brought it”
(Page 4, paragraph 4)
The myth of a supernatural species taking away a normal child and replacing it with a supernatural one is really a metaphor for the foreignness some parents may feel when encountering a disabled child Both with the disabled person and the changeling a common parental response is: “this is not my child”. Then comes a phase where the parents in their anger and guilt often
“either force the changeling to reveal its true nature or force its
fairy parents to return their original child” (Page 4, paragraph 5).
This alludes to the phase where the parents of the disabled battle between seeking to understand their child’s distinct identity and overcoming the feelings of guilt that something could have been done to prevent the “damage”. Finally we can witness the acceptance of the disabled person in this stunning description of the changelings’ splendor:
“Nothing under heaven could have had a more beautiful face… (but) he could not move so much as one joint… he was seldom seen to smile but if anyone called him fairy elf, he would frown and fix his eyes earnestly on those who said it, as if he would look them through.” (page 4, paragraph 4).
The descriptions of changelings documented way before and through the middle ages astoundingly fit many of the physical characteristics of a disabled child. “It is just possible that the wild dance of a changeling may in fact describe the movements of a person with severe athetoid cerebral palsy, where there is a predominance of involuntary movements. This is merely one of the examples she offers to prove the medical validity of her interpretation.
Unlike what the myth of the changeling proposes I was accepted ever since I was born and my parents did not undergo the process of grief that Schoon Eberly depicts. Yet I am aware that not everyone is as fortunate as I am. Eberly notes that in the pagan era the disabled were linked to the underworld and sometimes to a formidable divine power, suggesting the potential gifts of people with different abilities. Whether this is true or just another form of prejudice it is necessary for the non-disabled population to be aware that they might carry in their collective unconscious the weight of that belief when encountering someone with a disability. In my case, being in a wheelchair along with having a strong spiritual path has given me some supernatural or extra sensorial abilities such as “lucid dreaming”, an avid grasp of people’s emotional makeup at first glance, and a heightened sense of intuition. The peers I know who are in wheelchairs also possess a freedom of imagination that must be exploited and respected; their earned or inherent intuitive gifts should be cultivated. On the other hand, in these times there can be an immediate sense of admiration and distant respect for somebody that has a disability simply because they do; sanctifying people simply because they are in a wheelchair is another form of prejudice that allows the non-disabled person to contemplate us at a distance and prevent true inclusion. While this irrational form of praise can be unpleasant, pity and disgust are far more brutal forms of racism. Racism is a term that can no longer be applied on the basis of a certain skin color; it is at its very root any kind of categorization that is applied to people who share a physical, mental or social status that is seen as deficient. The repulsion that a non-disabled person may feel when encountering someone who drools a little or eats in a messy way may come from a very strong old urge to be part of a perfect race which can only include the strong, the beautiful, the brave. Intelligence is a desirable virtue as long as it is capable of serving society in a tangible, measurable way. Even great minds, like Plato and Aristotle were seduced by a longing for a perfect race. They held that :
“… infirm children should be done away with in order to further the rearing of the ideal man… midwives were… legally obliged to do away with those infants not recognized as truly human…only a healthy appearance guaranteed that it was.”
(Disability or Disobedience?, Poore, page 4, paragraph 2).
It saddens me to realize how much of modern medicine and science are invested in perfecting nature’s plan, tampering with the very substances that give us birth. Attempting to heal sickness is a worthy cause, but when this involves manipulating the way in which God or Chaos decides to bring life into the world it is a whimsical experiment to change the components of life itself just for the sake of beauty and the concern with preventing something that may be a blessing and not a curse. The implications that this manipulation of nature can have on our environment have already begun to show evidence that this could lead us to our destruction as a human race.
Today modern medicine is concentrating so much of its resources- human and economic, on “genetic medicine”. They are chasing after the gene behind Alzheimer’s, obesity, alcoholism, drug abuse, etc. etc, dissecting the human genome to offer a few and very rich elite the possibility of cures for diseases that are so often related to bad eating habits and emotional suffering. Instead, millions of children will continue to go hungry and die of easily curable diseases, because they are clearly not part of their idea of a superior race:
“Since the dawn of time, man has been trying to figure out how to procreate the “perfect” child—free of hereditary diseases, physical defects and internal imperfections. Now, more than ever, that urge still exists…. (Page 1, paragraph 1)
The Nazis believed that if any German citizens were diseased, were born physically or mentally disabled, or were part-Jewish, it was necessary to sterilize them to prevent further breeding (pg. 3, paragraph 2)”
(Human Eugenics: Whose Perception of Perfection, Parendi Mehta, page 1, paragraph 1)
The obsession to be absolutely free of sickness and deformity adds to the unconscious prejudice that a non-disabled person has toward someone that reminds them that nature itself is beyond the control of men. I suspect the need for racial cleansing comes from a very strong impulse to survive. Humans in their earliest incarnation coexisted with animals that were much stronger then they were. To survive they needed to use brutal force and a cunning intelligence. When they discovered it was easier to hunt and live in small communities there was more time for reflection, sweetness and luxury but in the beginning those with a physical deformity or disability probably died quickly. The reality that we needed to eat or be eaten is so engraved within us that we can get caught in valuing strength over softness, kindness, lightheartness and beauty. Later disability stopped becoming something supernatural and became a medical condition. This new scientific understanding had its advantages— disabled people were no longer seen as evil or as a people to be afraid of. In the future this could help them receive treatment to strengthen and relax their muscles and alleviate their pain. In the eighteenth century with the introduction of science a new form of prejudice emerged. Disabled people were linked indiscriminately with those that suffered from, a highly destructive degenerative disease. Psychopaths, autistic and disabled people were in the same category of people who “strayed from medical normalcy”.
Quoting David Pfeiffer, Dais reminds us, in his article Crips Strike Back, that normality is an ideology and a cultural illusion that is closely linked to our modern society:
David Pfeiffer writes that normal behavior is a statistical artifact which encourages people with power and resources to label people without power and resources as abnormal”…. The use of the word normal in reference to physical bodies appears in English merely 150 years ago, coinciding with the birth of statistics and eugenics… The introduction of the concept of normality, however, created an imperative to be normal, as the eugenics movement proved by enshrining the bell curve (also known as the “normal curve”) as the umbrella under whose demanding peak we should all stand.
Crips Strike back: The Rise of Disability Studies Leonard J. Dais 5: 2 & 3
In Mexico I have experienced a form of prejudice when people in passing ask my dad, “poor thing, he’s sick, right?” The pity towards the disabled is the “sickness” of the non-disabled, i.e. their feelings of superiority and lack of connection with their own limitations. As a friend of my mom once told her, we all have a disability, the advantage that people in wheel chairs or any other kind of physical difference have over us is that their limitations are obviously visible and ours are not. The concept of normality is fuelled or created by a rigid concept of beauty- This narrowness of aesthetics related to the buying and selling of products is linked to a concept of what is attractive and acceptable by those countries who have economic power and influence. An example is that world-wide it is more usual to see white, blond babies announcing disposable diapers, even when they are being sold to an indigenous population.
Leonard J. Dais speaks of the importance of recuperating honesty when addressing the issue of disability. Terms like different abilities and wheelchair bound are a counter-producing effort to disguise or soften our physical condition. Like Dais I advocate that we should not use light terms to describe our disabilities. For me the goal is to get to the point where that limitation of movement becomes so transparent and irrelevant to who we are, that we do not need to constantly come up with new names to justify it.
Mark Mossman, in his essay Visible Disability in the College Classroom coins the term “super-crip” to mock the attitude that the normates never give us the opportunity of seeing us just like them. As soon as we do something that the non-disabled population would do, we become heroes. I have witnessed that when I get up to walk with my braces and people start applauding, assuming that it is a big effort. For me it is a time to exercise my body, and a pleasure. Also, when we excel in something that usually only normal people can do, we are not invited to the community of normals, we are thrown into exile by becoming heroes; super-crips!
The idea of the super-crip as with the stereotype of the sick makes our sexual identity denied until we find someone that is open enough to see past a dark, still hidden history of separation. To solve this it is important for the disabled community to provide more literature and information to help the general population bypass their prejudice. I found no scholarly articles regarding the issue of sexuality and disability. This compels me to research more deeply into the topic in a utopian dream so that one day disabled people are integrated as valuable actors in the movies, in commercials, and in any kind of job they wish to pursue, with the same possibility of being in a couple that a non-disabled person would have. Disability should be treated as a historical issue that has changed over time and it is as much of a racial and cultural struggle as the fight against aids, or gay-lesbian movement and gender equality. Once we treat disability as a cultural phenomena, disability studies could be integrated as a required study that might be placed in the branches of history, sociology and, or, cultural perspectives. This would imply not only a better world for the persons with a disability but also for anyone that in any way is outside of what society views as acceptable.
Wednesday, June 23, 2010
Bodies and imagined physical and emotional fragility
ENCUENTRO EXPRESIONES
I was once invited to an Arts and Disability festival in Veracruz,called Encuentro Expresiones. It was awesome. Deaf actors told their story through sign language which was then partly translated into Spanish. The clarity and playfulness of the performers, their ability to transmit the essence of an emotion with a single expression and gesture, was astounding. There were also blind singers playing salsa and typical Mexican music -- they were so spirited the crowd was dancing and romping all over the place, and the band didn't miss a beat. Young men and women with down syndrome danced folkloric dances with a sincerity and tenderness that was palpable enough to melt a cynic. Jorge Font talked with impeccable eloquence on the journey of fulfillment through sacrifice -- the process of adjusting to a limited level of physical mobility after an accident and finding strength, independence, and the love of his life within that new beginning. He has been married for quite some time now, a proud father and a big inspiration to all of us. I read my poetry.
The most invigorating thing about the festival was the sharing of art, not to inspire pity compassion or charity in people, but simply to share ourselves with the world. I could make many interconnections between distinct disabilities, sharing sharing laughter, struggles, and information.
FRAGILITY (?) AND DISABILITY
Lexi Luca, an extraordinary workshop leader who break dances on crutches elevating himself up and doing impossible twists with his arms and back, invited us to dance with him on the main stage. Below the stage there was a pretty sharp drop and a few feet below a little platform were actors could step onto the stage. Below that was the hard cobbleston ground and the tremendous roaring crowd. When it came time for me to do my solo dance I crawled on the stage floor after a little while of dancing in my wheelchair. I could see in peoples expressions a look of surprise.
I suspect that some people unconsciously assume that being in a wheelchair means being stuck in it twenty four seven. That varies depending on the person. People who don't know my level of mobility are often extra careful to offer their assistance when I am transferring from one chair to another or from a car seat into my wheelchair and even hold me when I say I can do it myself. When I lie sprawled on the grass reading a book often passersby look at my empty wheelchair with confusion and ask with a tone of grave concern " Are you Okay? Is everything all right?" When I say I'm reading in the sun or meditating I've noticed a faint smile of recognition dawning on their faces.
Sometimes when friends or acquaintances push my wheelchair or lower me into a pond or a pool of water a phrase I've heard is " Tell me if anything hurts" or more directly " I'm afraid to hurt you." They are often surprised when I get into the deep water and start swimming with ease into the distance. A friend of mine who is a physical therapist in Mexico admitted to me that when she first started working with people in wheelchairs she was afraid we were like porcelain cups that could shatter into a million pieces if we were not handled correctly. Now she finds the thought amusing. That's not to say that people in wheelchairs don't have serious limits in their mobility or sensitive spots but usually we are pretty confident about gaging our limits and asking for help when and how we need it. I accept the generous help and interest from fully mobile people in their quest to assist me and also ask them to be a little more trusting in our ability to verbalize our own needs.
THE DANCE PERFORMANCE EXPERIMENT
I had suspected that some peoples assumptions about my fragility were quite strong but I wanted to do an experiment to test just how deeply rooted they were. So in the Lexi Luca dance I crawled to the edge of the stage as part of my dance and then allowed my body to gracefully slide down onto the second platform right below it. Then I crawled to the brink of that with a big smile on my face and poised myself there. Several hundred people were at the festival outdoors in a section of the market and suddenly it grew so quiet you could have heard a pin drop. Simultaneously people stood up and started dashing to the stage in a panic. I could hear voices shouting : "quick: he is going to fall! whats he going to do?"
One of the organizers of the conference admitted later that evening that he had to go the doctor and take some tranquilizers that night to recover from the shock. Just as the audience was about to grab hold of and "rescue me" I slipped out of their grasp and hoisted myself smoothly back on to the center of the main stage and continued to dance, visibly enjoying the music as if nothing had occurred. Several audience members asked me: "Did you intend to that? I answered somewhat obliquely in the hopes of engraving the question in their minds through the use of mystery."
Curiously enough my fellow dancers in wheelchairs or with disability didn't seem alarmed; they were smiling and enjoying the dance for its wackiness or artistic composition or busy rocking out to the music. javascript:void(0)My friend Manuel who has worked assisting me with some of my physical needs looked a little concerned but didn't rush in a frenzy to help.
WHAT DOES ALL THIS HAVE TO DO WITH SEX?
The assumption of fragility can contribute to the idea that we are ethereal beings with very delicate bodies that could be hurt during sex. Who would have sex with a porcelain cup that could at any moment break into a million pieces? The few times in my life that I have had sex, more then once someone has asked: What if I hurt you? Am I too heavy? Slowly the women I was involved with grew more comfortable with following their impulses and trusting my ability to tell them if something was too much. Even then, I noticed, as with any relationship, it takes time to reach a balance of trust, confidence and mutual curiosity.
Another pattern at play is the perception that because I am in a wheelchair I am not only more fragile physically but emotionally as well. In other words the thought that if someone were to date me, have a relationship, and then break up with me they could hurt my feelings more because of the perceived extraordinary adversity often associated with disability.
My first serious girlfriend (now a friend) expressed a strong fear that if she left me I would be devastated and that my parents would resent her for it. I think gradually she came to realize the hurt I could experience was no lesser or greater than what a "normal" person would feel in a break up. Her initial certainty that she would be the one to break off the relationship when and if it happened also was revised as we deepened our bond. She could leave me, or I could leave her or it could be a mutual decision.
A LITTLE SIDE NOTE
Have you noticed in airports, when someone in a wheelchair boards a plane and transfers to an aisle chair he or she is always strapped in? And not just strapped in - the amount of seat belt material around their torso waist and legs is enough to evoke the image of a convict chained on his way to prison. Do you know what I mean?
I was once invited to an Arts and Disability festival in Veracruz,called Encuentro Expresiones. It was awesome. Deaf actors told their story through sign language which was then partly translated into Spanish. The clarity and playfulness of the performers, their ability to transmit the essence of an emotion with a single expression and gesture, was astounding. There were also blind singers playing salsa and typical Mexican music -- they were so spirited the crowd was dancing and romping all over the place, and the band didn't miss a beat. Young men and women with down syndrome danced folkloric dances with a sincerity and tenderness that was palpable enough to melt a cynic. Jorge Font talked with impeccable eloquence on the journey of fulfillment through sacrifice -- the process of adjusting to a limited level of physical mobility after an accident and finding strength, independence, and the love of his life within that new beginning. He has been married for quite some time now, a proud father and a big inspiration to all of us. I read my poetry.
The most invigorating thing about the festival was the sharing of art, not to inspire pity compassion or charity in people, but simply to share ourselves with the world. I could make many interconnections between distinct disabilities, sharing sharing laughter, struggles, and information.
FRAGILITY (?) AND DISABILITY
Lexi Luca, an extraordinary workshop leader who break dances on crutches elevating himself up and doing impossible twists with his arms and back, invited us to dance with him on the main stage. Below the stage there was a pretty sharp drop and a few feet below a little platform were actors could step onto the stage. Below that was the hard cobbleston ground and the tremendous roaring crowd. When it came time for me to do my solo dance I crawled on the stage floor after a little while of dancing in my wheelchair. I could see in peoples expressions a look of surprise.
I suspect that some people unconsciously assume that being in a wheelchair means being stuck in it twenty four seven. That varies depending on the person. People who don't know my level of mobility are often extra careful to offer their assistance when I am transferring from one chair to another or from a car seat into my wheelchair and even hold me when I say I can do it myself. When I lie sprawled on the grass reading a book often passersby look at my empty wheelchair with confusion and ask with a tone of grave concern " Are you Okay? Is everything all right?" When I say I'm reading in the sun or meditating I've noticed a faint smile of recognition dawning on their faces.
Sometimes when friends or acquaintances push my wheelchair or lower me into a pond or a pool of water a phrase I've heard is " Tell me if anything hurts" or more directly " I'm afraid to hurt you." They are often surprised when I get into the deep water and start swimming with ease into the distance. A friend of mine who is a physical therapist in Mexico admitted to me that when she first started working with people in wheelchairs she was afraid we were like porcelain cups that could shatter into a million pieces if we were not handled correctly. Now she finds the thought amusing. That's not to say that people in wheelchairs don't have serious limits in their mobility or sensitive spots but usually we are pretty confident about gaging our limits and asking for help when and how we need it. I accept the generous help and interest from fully mobile people in their quest to assist me and also ask them to be a little more trusting in our ability to verbalize our own needs.
THE DANCE PERFORMANCE EXPERIMENT
I had suspected that some peoples assumptions about my fragility were quite strong but I wanted to do an experiment to test just how deeply rooted they were. So in the Lexi Luca dance I crawled to the edge of the stage as part of my dance and then allowed my body to gracefully slide down onto the second platform right below it. Then I crawled to the brink of that with a big smile on my face and poised myself there. Several hundred people were at the festival outdoors in a section of the market and suddenly it grew so quiet you could have heard a pin drop. Simultaneously people stood up and started dashing to the stage in a panic. I could hear voices shouting : "quick: he is going to fall! whats he going to do?"
One of the organizers of the conference admitted later that evening that he had to go the doctor and take some tranquilizers that night to recover from the shock. Just as the audience was about to grab hold of and "rescue me" I slipped out of their grasp and hoisted myself smoothly back on to the center of the main stage and continued to dance, visibly enjoying the music as if nothing had occurred. Several audience members asked me: "Did you intend to that? I answered somewhat obliquely in the hopes of engraving the question in their minds through the use of mystery."
Curiously enough my fellow dancers in wheelchairs or with disability didn't seem alarmed; they were smiling and enjoying the dance for its wackiness or artistic composition or busy rocking out to the music. javascript:void(0)My friend Manuel who has worked assisting me with some of my physical needs looked a little concerned but didn't rush in a frenzy to help.
WHAT DOES ALL THIS HAVE TO DO WITH SEX?
The assumption of fragility can contribute to the idea that we are ethereal beings with very delicate bodies that could be hurt during sex. Who would have sex with a porcelain cup that could at any moment break into a million pieces? The few times in my life that I have had sex, more then once someone has asked: What if I hurt you? Am I too heavy? Slowly the women I was involved with grew more comfortable with following their impulses and trusting my ability to tell them if something was too much. Even then, I noticed, as with any relationship, it takes time to reach a balance of trust, confidence and mutual curiosity.
Another pattern at play is the perception that because I am in a wheelchair I am not only more fragile physically but emotionally as well. In other words the thought that if someone were to date me, have a relationship, and then break up with me they could hurt my feelings more because of the perceived extraordinary adversity often associated with disability.
My first serious girlfriend (now a friend) expressed a strong fear that if she left me I would be devastated and that my parents would resent her for it. I think gradually she came to realize the hurt I could experience was no lesser or greater than what a "normal" person would feel in a break up. Her initial certainty that she would be the one to break off the relationship when and if it happened also was revised as we deepened our bond. She could leave me, or I could leave her or it could be a mutual decision.
A LITTLE SIDE NOTE
Have you noticed in airports, when someone in a wheelchair boards a plane and transfers to an aisle chair he or she is always strapped in? And not just strapped in - the amount of seat belt material around their torso waist and legs is enough to evoke the image of a convict chained on his way to prison. Do you know what I mean?
Saturday, June 19, 2010
Love song to my motorized wheelchair
Though we are almost married
I often forget you
You're bulky and stout
I sit around you most of the time.
you're cranky and lumbering.
But then I turn you on
And I remember
I love you
on high speed
all cracked
up. I love you
recklessly
rolling with me
the joystick is yours
throbbing in full gear
as we bump
denting the floor—
Every night you wait
for me to charge you up
and you come squeaking
like an ungainly pigeon
asking for more.
If I don't please you right
your weight might
crush my bones
When you tie me down
I only soar higher.
Yet you love to see me wriggling
all bound up and when I try
to pull out you hold me in.
The women who fall for me
are often paralyzed by you
They are jealous of how
I'm always lap dancing on you.
were almost sewn at the hip.
Oh my
dark dawn
Oh my loyal task master
Oh my electric
steel tempered mistress.
I often forget you
You're bulky and stout
I sit around you most of the time.
you're cranky and lumbering.
But then I turn you on
And I remember
I love you
on high speed
all cracked
up. I love you
recklessly
rolling with me
the joystick is yours
throbbing in full gear
as we bump
denting the floor—
Every night you wait
for me to charge you up
and you come squeaking
like an ungainly pigeon
asking for more.
If I don't please you right
your weight might
crush my bones
When you tie me down
I only soar higher.
Yet you love to see me wriggling
all bound up and when I try
to pull out you hold me in.
The women who fall for me
are often paralyzed by you
They are jealous of how
I'm always lap dancing on you.
were almost sewn at the hip.
Oh my
dark dawn
Oh my loyal task master
Oh my electric
steel tempered mistress.
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