I have always considered myself a lucky person. I was blessed with the best parents, great siblings, and have had phenomenal family support my entire life. In college I feel in love with an area of study, anthropology, and have been able to cobble together a career that has been rewarding. I thoroughly enjoy writing and have a decent or perhaps modest publishing record. Teaching college students at Purchase College is rewarding in the extreme. I also have a wonderful son who I love very much. I am proud of him and since he left for college am stunned by his growth and maturity. I joke with others that I have spawned a responsible adult. I live in a nice home an hour from New York City, one of the most cosmopolitan cities in the world. I even have a black lab, Kate, I adore who makes me laugh out loud at least once a day. In short, I have much to be thankful for, especially now as I know without family support I would be in a nursing home. Yet even with all these wonderful things going for me I am pretty much miserable. I feel as though I have no joy in life. For the first time work is not enough. Writing is not enough. Reading is not enough. Television is not enough. XBOX is not enough. I want more. I want my life as I lived it. I am not sure when I will get that life back.
What prompted the above? I saw the plastic surgeon last week. I did not see your average plastic surgeon, I went big time and saw a highly respected surgeon from New York City with lot of experience with flap surgery. He examined my wound and told me that flap surgery is not the panacea many believe it to be. There are some very real down sides to such surgery if things go wrong. I have a wound that is healing, it has great granulation and is in the estimation of many "lovely". The surgeon thinks, though cannot promise, the wound and the troublesome undermining will heal on its own. If the undermining does not fill in it can at a later date be filled in with piece of muscle tissue from my thigh. This sounds pretty reasonable to me. Indeed, this is the first time I have seen a surgeon who did not emphatically state surgery was needed now. I don't know what to make of this. In my mind I had envisioned myself operated on and up and about in a week to ten days. My life returned to me. This fantasy did not take place and has sent me into a tail spin. I feel spent. I have accomplished little since September. I can live with that given how sick I was. What I am struggling with is the unknown. I do not when my wound will heal. It could be four weeks or it could be four months. It could need surgery, it might not. Victor Turner, an anthropologist I like coined the position I am in as being a liminal state. That is I am "betwixt and between"--I am not sick nor am I well. I am home but but home bound unable to function as I once did. I am dependent upon others but independent in many ways. I do not like being liminal. I do not like being on the sidelines looking at the world pass me by. As Robert Murphy wrote in the Body Silent, for many years people with a disability were liminal members of society. This was true in the 1970s and 1980s but somewhere in the 1990s things changed. Our rights were recognized, civil rights, were recognized legally. Sure those rights were ignored, belittled, and trounced upon. But they were acknowledged civil rights. I had the power as did other people with a disability. So without getting too analytical I think what has sent me into my tail spin is the overwhelming sense of being powerless. I cannot make my wound heal. No one can do that. Until that wound heals my life is reduced to a liminal state, one that brings back not so fond memories of when I was first paralyzed and treated as less than a sentient being. This was the norm circa 1978. The medical establishment reigned supreme and knew exactly what people with a disability needed--rehabilitation. They were correct, rehabilitation was needed but they failed miserably at suggesting what to do when it was complete. Worse yet was the paternalism--anything a paralyzed person did that approaches "normal" was an inspiration, a great accomplishment. Oh, how this angered me! I wanted, and once a while did, act out in frustration. I was not alone for anger when directed correctly is a powerful tool--it was what motivated a person like Ed Roberts and led to the founding of the independent living movement.
I do not think there is an answer to my tailspin. I am unhappy, miserable really, and think this is a logical response to my life as it is. Would therapy help? Well, I could do this I suppose over the phone. I hate the phone. I could ask for a prescription from my doctor but does taking a pill really make sense. Again, being sad, upset, and unhappy seems like a reasonable response. I do function--I am eating, bathing, caring for myself. I read, write a little, watch TV, play Halo (I have gotten much better), and get through the day. I just do all of this with no zest. I feel as though this is a dark time and one must remember and survive those dark times. I must remember how I feel now because assuming I am back to normal some day will get an abrasion on my skin. I will want to go to work or out of my home and the vivid recall of being in bed month after month will surely prevent me from getting up and taking a risk with my skin care. Likewise, when I do not feel like checking my skin with a mirror I will recall today and reread this entry. So for now I am content to let myself be miserable. I do my best to hide my unhappiness from others though I am not effective all the time. With those I am close to I talk about this problem--I do not want to fall into the rabbit hole of depression that claims the lives of too many people. I do not think I am there yet meaning a depressed state. That is one place I do not want to go-ever.
What am I doing to change my mood? I am going to do something, I just do not know what that something is. For now, I will try to look at the bright side of life. I envision myself skiing, I check the conditions in Vermont and New Hampshire at my favorite ski resorts. I look at pictures online and try to figure out where the people are. I am investigating custom multi use buckets for paralyzed people that can be used skiing, biking, or kayaking. I follow the New York Rangers closely and get satisfaction they are having a good season. I hope they make a deep run into the playoffs so perhaps I can attend a game with my son or brother. I try to talk to my son when he is not surgically attached to the couch, his computer or consuming mass quantities of food. I watch the birds of prey outside my window ride the thermals and hunt. At night with the outdoor lights on I gaze out at the icicles twinkling that now go from the roof to the ground.This is a first in ten years at my home. I try to invent things to cook in less than 20 minutes that are tasty, loaded with protein and easy to clean up after. When I do all this I am okay. I just need to get better at this and look forward to the day I am up and around and this dark time becomes a bad memory.
Sunday, January 16, 2011
Monday, January 10, 2011
Wound Care Again
Last night was very bad. I found blood on my sheets and had a sleepless night filled with worry. Wound care came this morning and found a small tear likely from sheer on my right butt. The wound, though small and superficial, is still a significant worry. I am sitting very little, transferring with extreme caution and yet still having trouble. This makes me wonder what will happen when I am an older man (note the use of the word older). What got to me last night was the fear--fear of the future. For good reason, I have been fearful of skin problems and avoided serious complications. I was proud of this as I knew once such problems arise solving them is a time consuming process. I have now learned this in a visceral way. I am after all these months spent. I am tired, sick of my home, desperate for the ordinary and active life I once had. It has been months since I was outside my home. Sure I have seen various doctors and hospitals but not seemingly normal everyday activities. I wonder if I will ever return to that ordinary life. I cried last night for that loss.
As for my wound, last week wound care appointment was a bust. The doctor following my care could not see me. A surgical emergency came up. Bad timing for sure but those things happen. Perhaps I am more philosophical than most as I know when I was a sick kid I recked many schedules. Tomorrow I see a big time plastic surgeon in New York City. I have avoided seeing these men and women my entire life and must confess to being biased against the field. Any surgery I have had in my life was forced--as in I had no choice and any surgical result could only improve my quality of life. Thus I find it hard to fathom any choosing to do any sort of elective surgical procedure. We will see what the surgeon has to say but I know one thing for sure--he will say surgery. It is what surgeons do. I do not know if this is the right or wrong thing to do. I am going to have to rely on the plastic surgeon and doctor who has followed my care to make that determination. This is a huge leap of faith. I am not good at leaps of faith or trusting others. Here though I have no choice. I have done my research online, know how to have an educated conversation but when push comes to shove I am going to rely on the opinion of the doctors. How I wish I was not in this position. Wishing this is a waste of time. I need to deal with reality. How I deal with that reality has varied greatly in the last few months. A true emotional roller coaster this wound care business is.
As for my wound, last week wound care appointment was a bust. The doctor following my care could not see me. A surgical emergency came up. Bad timing for sure but those things happen. Perhaps I am more philosophical than most as I know when I was a sick kid I recked many schedules. Tomorrow I see a big time plastic surgeon in New York City. I have avoided seeing these men and women my entire life and must confess to being biased against the field. Any surgery I have had in my life was forced--as in I had no choice and any surgical result could only improve my quality of life. Thus I find it hard to fathom any choosing to do any sort of elective surgical procedure. We will see what the surgeon has to say but I know one thing for sure--he will say surgery. It is what surgeons do. I do not know if this is the right or wrong thing to do. I am going to have to rely on the plastic surgeon and doctor who has followed my care to make that determination. This is a huge leap of faith. I am not good at leaps of faith or trusting others. Here though I have no choice. I have done my research online, know how to have an educated conversation but when push comes to shove I am going to rely on the opinion of the doctors. How I wish I was not in this position. Wishing this is a waste of time. I need to deal with reality. How I deal with that reality has varied greatly in the last few months. A true emotional roller coaster this wound care business is.
Wednesday, January 5, 2011
Great Quote
I just came across the following quote by Eleanor Roosevelt:
"Where, after all, do universal human rights begin? In small places, close to home – so close and so small they cannot be seen on any maps of the world".
This reminded me of how misguided the parents of children are who seek out growth attenuation. The most vulnerable people among us are in my estimation important. They are humanity reduced to its basest element. How we care and value these lives says much about our culture. To date, we Americans do a very poor job caring for the vulnerable--the elderly, terminally ill and disabled. All are stigmatized, their lives deemed less valuable than those who are "productive". But what exactly does that "productivity" mean? In looking back on one's life are the monetary goals one reaches more important than love, children raised, family, and the contribution made to the world.
When I was a child my father never asked me how I did in school. Instead he would say "Did I ask a good question and think independently". Answers he told me can always be found but asking hard questions is what separates original thinkers from drones. He did not want me to be a drone. In retrospect I suspect he wanted me to carve out a different life than the one he led. Without knowing it he led me to become an anthropologist as we as a group always ask hard questions and defend the rights of the most vulnerable--often indigenous populations or minority groups. Little did I know I would join the largest minority group in America--the disabled. But I was prepared like few others. I had a penchant for questioning and life long propensity to reject the status quo. What I wish and think the above quote by Eleanor roosevelt gets at is that we all must assert our rights and the rights of those that cannot assert them independently. We must look into the eyes of the most vulnerable and see ourselves. We must protect those that cannot protect themselves. This is where I think growth attenuation fails miserably. Growth attenuation is a simple answer to a complex problem. It enables parents and doctors the luxury of no thought--no consideration of the other, people that do not nor will ever fit in with social expectations. What are there needs? Why are those needs not met? How can we force society to change and become a welcoming place for all those with and without expected cognition and physical prowess. I offer no answers today just hard questions. Questions I think my father would be proud I am thinking about.
"Where, after all, do universal human rights begin? In small places, close to home – so close and so small they cannot be seen on any maps of the world".
This reminded me of how misguided the parents of children are who seek out growth attenuation. The most vulnerable people among us are in my estimation important. They are humanity reduced to its basest element. How we care and value these lives says much about our culture. To date, we Americans do a very poor job caring for the vulnerable--the elderly, terminally ill and disabled. All are stigmatized, their lives deemed less valuable than those who are "productive". But what exactly does that "productivity" mean? In looking back on one's life are the monetary goals one reaches more important than love, children raised, family, and the contribution made to the world.
When I was a child my father never asked me how I did in school. Instead he would say "Did I ask a good question and think independently". Answers he told me can always be found but asking hard questions is what separates original thinkers from drones. He did not want me to be a drone. In retrospect I suspect he wanted me to carve out a different life than the one he led. Without knowing it he led me to become an anthropologist as we as a group always ask hard questions and defend the rights of the most vulnerable--often indigenous populations or minority groups. Little did I know I would join the largest minority group in America--the disabled. But I was prepared like few others. I had a penchant for questioning and life long propensity to reject the status quo. What I wish and think the above quote by Eleanor roosevelt gets at is that we all must assert our rights and the rights of those that cannot assert them independently. We must look into the eyes of the most vulnerable and see ourselves. We must protect those that cannot protect themselves. This is where I think growth attenuation fails miserably. Growth attenuation is a simple answer to a complex problem. It enables parents and doctors the luxury of no thought--no consideration of the other, people that do not nor will ever fit in with social expectations. What are there needs? Why are those needs not met? How can we force society to change and become a welcoming place for all those with and without expected cognition and physical prowess. I offer no answers today just hard questions. Questions I think my father would be proud I am thinking about.
Monday, January 3, 2011
What is in a Label?
I read many disability related blogs. The quality of the writing never ceases to impress me. Sure some blogs are poorly written but this flaw is negated by the thought provoking ideas presented. Some blogs are beautifully written and contain equally wonderful thoughts. I will not name names today even though that ranking disability related blogs would be fascinating endeavor. Regardless, I want to write about labels. I am inspired to do so by Eric who has a bog I regularly read, I am a Broken Man/You Cannot Break Me. In a post written on January 2 entitled "There is No Such Things as Disabled" he has thrown down the following gauntlet:
"How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.
I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe. My vote goes for differabled (leading to the use of the differability). I am quite serious so please leave your suggestions".
Eric does not break new ground in this post--a fact he points out. The important issue he raises is what is a disability and by extension how do we as a society disable people. I do not think of myself as having a significant disability in many social contexts. When I teach for instance my disability is not relevant assuming I can enter the classroom (this is no sure thing). Yet I am always perceived as having a significant disability--partial paralysis from the third thorasic verterbrae. This physical deficit is impossible to miss. I navigate the world using a wheelchair, a cool piece of technology in my estimation. This cool factor does not exist outside my household. My wheelchair is the ultimate symbol of disability. Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis. If you doubt me, I suggest you try and use mass transportation or purchase a ticket to see a concert or professional ball game using a wheelchair. The point I am trying to stress is that society makes me feel disabled, it is a notion I cannot escape. Sure I forcefully reject this socially imposed inferiority but my staunch civil rights approach is out of the norm and at odds with what most people have learned or read about disability. What people think they know about disability is as old as it is out dated. Disability is a medical problem. Yes there is a physical element to disability that cannot be ignored but the real issues are largely social. A refusal to negotiate difference and as such disability based bias is the same as what other minority groups rail against. As an anthropologist I would maintain we people with a disability add another layer of complexity to our minority status. We are the other--outsiders within our own culture. We are in the words of Victor Turner "betwixt and between". We are not sick nor are we well. We are not purposely discriminated against but far from welcome. We are treated with benign neglect, out of sight and out of mind. Send a check to the poor bastards at Christmas time and thank out lucky stars we the all mighty normal people rule the world.
None of the above directly answers Eric question. I have an answer though I doubt many will like it. I reject labels and jargon. As an academic I know lots of jargon, lots of theories, lots of polemical arguments. Hell, I have engaged in such debates and never have felt like I learned a thing. I reject the word disabled. I reject the word handicapped. I reject the popular insider term gimp. I reject silly attempts at political correct terms that were fashionable for a nano second such as handicapable and physically challenged. I do not accept academic terms such as ableist because no one outside of disability studies scholars understands what the term means. I reject each of the above terms and years ago settle on the word crippled. Go look it up. Crippled in the dictionary refers to a physical deficit. That is it. Look up disabled and all sorts of connotations are associated with the word I reject. Cripple too has much cultural baggage. I want people, strangers and the uninformed, to think about this baggage. I want them to think--why would a man such as myself use the word. Cripple stops people. Cripple gets one's attention in a way that disabled or handicapped does not. People cringe when I use the word cripple to describe myself. My niece, a wonderful woman and program coordinator at an adaptive sports program is acutely aware of disability issues. She is a gifted person in dealing with those that have cognitive deficits. But when I use the word cripple she cringes and says "Oh, Uncle Bill!". I use the word not for her but the hordes of ignorant. As I have written many times all that people are taught about disability or appears in popular culture is dead wrong. The real problem we people with a disability encounter is the mainstream. Cripple makes these people think--it is not a word used regularly nor is it politically correct. I want to stop people as it is just too easy to gloss over disability related issues. In a newspaper for instance it is easy to glance at a headline "Budget Cuts for Special Education" and think ho hum and move on to more important issues. In contrast, a headline such as "Cripples Protest Budget Cuts" will make one read the article. Likewise, my use of the word cripple forces people to think. In choosing cripple I was inspired by Ed Roberts, founder of the independent living movement, who wrote about "cripple power" in the 1970s. Roberts is my hero. He is a cripple I admire. I am a cripple and embrace this word in the hope it makes others feel uncomfortable. I want people to be uncomfortable because I want them to think about my civil rights. Those civil rights are ignored, belittled, and violated even though it is against the law. One final silly point. I do not weight 145 pounds. I have lost weight since the Fall and developed my wound. I aspire to be 145 or even a buff and manly 150 pounds.
"How about we finally lay disabled to rest? I'd like to hear suggestions please. I'd like William Peace to put all 145 lbs behind this and chime in on what he thinks should replace disabled.
I looked at simply changing the spelling to dysability, but since dys still carries its meaning of bad or wrong, that won't work. Differently able. Different from Differe. My vote goes for differabled (leading to the use of the differability). I am quite serious so please leave your suggestions".
Eric does not break new ground in this post--a fact he points out. The important issue he raises is what is a disability and by extension how do we as a society disable people. I do not think of myself as having a significant disability in many social contexts. When I teach for instance my disability is not relevant assuming I can enter the classroom (this is no sure thing). Yet I am always perceived as having a significant disability--partial paralysis from the third thorasic verterbrae. This physical deficit is impossible to miss. I navigate the world using a wheelchair, a cool piece of technology in my estimation. This cool factor does not exist outside my household. My wheelchair is the ultimate symbol of disability. Society has a penchant for forcefully reminding me of my disability and inferior social status on a regular basis. If you doubt me, I suggest you try and use mass transportation or purchase a ticket to see a concert or professional ball game using a wheelchair. The point I am trying to stress is that society makes me feel disabled, it is a notion I cannot escape. Sure I forcefully reject this socially imposed inferiority but my staunch civil rights approach is out of the norm and at odds with what most people have learned or read about disability. What people think they know about disability is as old as it is out dated. Disability is a medical problem. Yes there is a physical element to disability that cannot be ignored but the real issues are largely social. A refusal to negotiate difference and as such disability based bias is the same as what other minority groups rail against. As an anthropologist I would maintain we people with a disability add another layer of complexity to our minority status. We are the other--outsiders within our own culture. We are in the words of Victor Turner "betwixt and between". We are not sick nor are we well. We are not purposely discriminated against but far from welcome. We are treated with benign neglect, out of sight and out of mind. Send a check to the poor bastards at Christmas time and thank out lucky stars we the all mighty normal people rule the world.
None of the above directly answers Eric question. I have an answer though I doubt many will like it. I reject labels and jargon. As an academic I know lots of jargon, lots of theories, lots of polemical arguments. Hell, I have engaged in such debates and never have felt like I learned a thing. I reject the word disabled. I reject the word handicapped. I reject the popular insider term gimp. I reject silly attempts at political correct terms that were fashionable for a nano second such as handicapable and physically challenged. I do not accept academic terms such as ableist because no one outside of disability studies scholars understands what the term means. I reject each of the above terms and years ago settle on the word crippled. Go look it up. Crippled in the dictionary refers to a physical deficit. That is it. Look up disabled and all sorts of connotations are associated with the word I reject. Cripple too has much cultural baggage. I want people, strangers and the uninformed, to think about this baggage. I want them to think--why would a man such as myself use the word. Cripple stops people. Cripple gets one's attention in a way that disabled or handicapped does not. People cringe when I use the word cripple to describe myself. My niece, a wonderful woman and program coordinator at an adaptive sports program is acutely aware of disability issues. She is a gifted person in dealing with those that have cognitive deficits. But when I use the word cripple she cringes and says "Oh, Uncle Bill!". I use the word not for her but the hordes of ignorant. As I have written many times all that people are taught about disability or appears in popular culture is dead wrong. The real problem we people with a disability encounter is the mainstream. Cripple makes these people think--it is not a word used regularly nor is it politically correct. I want to stop people as it is just too easy to gloss over disability related issues. In a newspaper for instance it is easy to glance at a headline "Budget Cuts for Special Education" and think ho hum and move on to more important issues. In contrast, a headline such as "Cripples Protest Budget Cuts" will make one read the article. Likewise, my use of the word cripple forces people to think. In choosing cripple I was inspired by Ed Roberts, founder of the independent living movement, who wrote about "cripple power" in the 1970s. Roberts is my hero. He is a cripple I admire. I am a cripple and embrace this word in the hope it makes others feel uncomfortable. I want people to be uncomfortable because I want them to think about my civil rights. Those civil rights are ignored, belittled, and violated even though it is against the law. One final silly point. I do not weight 145 pounds. I have lost weight since the Fall and developed my wound. I aspire to be 145 or even a buff and manly 150 pounds.
Thursday, December 30, 2010
Not Dead Yet Asks For Donations
Anyone who has read my blog knows I deeply respect two disability rights groups--ADAPT and Not Dead Yet. There are other disability rights groups I like, Disability Rights and Education Defense Fund for instance but I reserve my greatest admiration for ADAPT and Not Dead Yet. I am by no means in favor of all that these two groups do but my differences are minor, a matter of style if you will. What draws me to ADAPT and Not Dead Yet is exactly what I do not have--a direct confrontational in your face approach. I am just too damn polite. Sure I am polemical when writing but in real life do my best to avoid confrontation. Yes, I have had confrontations but I do y best to avoid them.
Not Dead Yet is a national organization that is operating on a shoe string budget. Not Dead Yet is strongly opposed to any and all efforts that would lead to assisted suicide becoming legal. The proponents of assisted suicide in contrast have no financial constraints. They have much money at their disposal and are accustom to using its power to push assisted suicide legislation. Frankly the disparity between those for and opposed to assisted suicide is puzzling to me. Sadly I think part of the reason why assisted suicide groups are so well financed may have to do with the fact many people do not have a good death. This can be a traumatic experienced for loved ones who vow to change how we Americans die. Part of that process may include suicide. On the surface this seems like a reasonable belief. However, it ignores a significant social problem--namely not all people are valued in life nor as it is ending. I am among one population that is at great risk--people with a disability. Other populations include the elderly and terminally ill. All these lives have value. And it is these lives that Not Dead Yet seeks to protect. This is where I am in total agreement with Not Dead Yet.
I was shocked to learn just how little money Not Dead Yet has at their disposal. I am as a result amazed at what they can and have accomplished. They do much with very little. They deserve your support and mine. To this end, in a rare appeal for donations, Not Dead Yet is asking for help. I am sending a check today. Yes, me, a man so cheap my brother says my wheelchair squeaks everywhere I go, is sending a check to Not Dead Yet. It is the very least I can do. I urge everyone that comes to my blog to send a check too and if you cannot at least read the blog and book mark Not Dead Yet site on your computer. I suspect this is the only time I will ever make such a suggestion. We need Not Dead Yet. It is as simple as that.
Here is the donation information:
Tax deductible contributions would need to be made payable to:
“Center for Disability Rights” (CDR), designated for “Not Dead Yet” in the memo section of your check and mailed to 497 State Street, Rochester, NY 14608. Donations can also be made online by going to the Network for Good donation page, and following the prompts to donate to the Center for Disability Rights through the Network for Good (which allows credit card donations, adding a five percent charge), and designating the Not Dead Yet program. The default setting is for a one-time donation, but if you have the money and believe our work is important, please consider giving on a monthly or quarterly basis.
Not Dead Yet is a national organization that is operating on a shoe string budget. Not Dead Yet is strongly opposed to any and all efforts that would lead to assisted suicide becoming legal. The proponents of assisted suicide in contrast have no financial constraints. They have much money at their disposal and are accustom to using its power to push assisted suicide legislation. Frankly the disparity between those for and opposed to assisted suicide is puzzling to me. Sadly I think part of the reason why assisted suicide groups are so well financed may have to do with the fact many people do not have a good death. This can be a traumatic experienced for loved ones who vow to change how we Americans die. Part of that process may include suicide. On the surface this seems like a reasonable belief. However, it ignores a significant social problem--namely not all people are valued in life nor as it is ending. I am among one population that is at great risk--people with a disability. Other populations include the elderly and terminally ill. All these lives have value. And it is these lives that Not Dead Yet seeks to protect. This is where I am in total agreement with Not Dead Yet.
I was shocked to learn just how little money Not Dead Yet has at their disposal. I am as a result amazed at what they can and have accomplished. They do much with very little. They deserve your support and mine. To this end, in a rare appeal for donations, Not Dead Yet is asking for help. I am sending a check today. Yes, me, a man so cheap my brother says my wheelchair squeaks everywhere I go, is sending a check to Not Dead Yet. It is the very least I can do. I urge everyone that comes to my blog to send a check too and if you cannot at least read the blog and book mark Not Dead Yet site on your computer. I suspect this is the only time I will ever make such a suggestion. We need Not Dead Yet. It is as simple as that.
Here is the donation information:
Tax deductible contributions would need to be made payable to:
“Center for Disability Rights” (CDR), designated for “Not Dead Yet” in the memo section of your check and mailed to 497 State Street, Rochester, NY 14608. Donations can also be made online by going to the Network for Good donation page, and following the prompts to donate to the Center for Disability Rights through the Network for Good (which allows credit card donations, adding a five percent charge), and designating the Not Dead Yet program. The default setting is for a one-time donation, but if you have the money and believe our work is important, please consider giving on a monthly or quarterly basis.
Monday, December 27, 2010
Glee and the Glorification of Walking
I read many blogs on a regular basis. One such blog is Wheelie Catholic. Two fascinating posts made me think and get mad. The first dealt with the question of walking. People who cannot walk ask people such as myself who are paralyzed if they wish they could walk again. I answer this question with a resounding no and try to appear pissed off (an easy thing to do). I find the question itself insulting. It assumes the answer will be yes. That I desperately wish I could walk when that has not nor has ever been the case. Sure shortly after paralysis I wanted to walk again but knew such hopes were futile. Such hopes or dreams about walking are akin to wishing one would not age. It is just not possible and not worthy of thought. It does not take most newly paralyzed people long to move on with life--all those I know who are paralyzed are quite content. Yet popular culture via the mainstream media glorifies the small number of people that want to walk again. These people are often desperate, willing to undergo questionable surgeries, hold fund raisers for these efforts and do not question the overall significance of their actions. I have written about this before and gotten a few extremely critical replies. I do not mean to intentionally upset people that want to walk--I just reject their efforts as dehumanizing to the vast majority that do not share such a goal. If they want to waste their time on an unrealistic, though noble goal, fine for them. I just ask them to do so with a modicum of thought as the the bigger picture.
The second post I read at Wheelie Catholic had to do with a show I do my best not to watch--Glee. I do not at any level understand the shows popularity. I am usually offended by the character Artie who is portrayed by an actor without a disability. Artie and the show's writers are obsessed with walking. This works out well since they made sure not to hire an actor without a disability. Anyone familiar with paralysis and wheelchairs knows Artie is a poser--a bad one at that. He is also a sad sack--the show always has him wishing he could be, dare I say the word, normal. As Wheelie Catholic perceptively pointed out
"Participants emphasized that myths and assumptions about disability continue to be perpetuated in the popular show. Instead of using the show as a vehicle to turn this negativity around another generation is being honed on plots that include ablest notions. For example the Christmas show portrayed walking and a cure as every disabled persons wish. The plots include Artie wanting to play football, wanting to dance and do other things but never deal with the fact that sports and dancing are done by people in wheelchairs. Rather Artie is portrayed as depressed because he can't do these things.
It's a real slap in the face to those of us who live with a disability to see this kind of thing week after week. It completely ignores our disability culture and reinforces old and backward notions about disability."
A slap in the face--perfect words for what Glee represents. The Christmas show was particularly offensive as they had Artie using an exoskeleton to walk. I find such an invention a preposterous waste of time, resources, and labor. I showed the exoskeleton to my son earlier this year when the contraption appeared in technology magazines and he burst out laughing. "Dad" he said "obviously they never talked to anyone with a disability to come up with such a stupid design and idea". My boy gets it. And this as Wheelie Catholic points out is the real tragedy with Glee. The message sent remains the same--walking is Artie's goal, his dream to do things "normal" people can do like dance, play sports, and dance. Let me clue the writers in to a basic fact: people with disabilities do all these things, and quite well. I am a decent skier. I am a good kayaker. I am and always have been a bad dancer. I know some superb skiers, some can walk some cannot. I have seen some amazing dancers that could not walk as well. Just try a google video search if you doubt me. Or better yet watch the X Games or the Paralympics. I do not see any of these people wishing they could walk sporting a silly exoskeleon. Too bad we cannot make Artie as cranky as me. Imagine the scenes possible? A scary though my son just chimed in! Imagine this: "Artie don't you wish you could walk again?" Artie replies "That is ableist propaganda. Walking I will have you know is highly over rated. My wheelchair rules. I can sing, I can dance, I can do anything I want and none of it involves the ability to walk. You are a bigot!" When that sort of dialogue appears on a mainstream television program I will be living in the utopia of nondiscrimination. I doubt I will ever live in such a world but will always work toward that goal
The second post I read at Wheelie Catholic had to do with a show I do my best not to watch--Glee. I do not at any level understand the shows popularity. I am usually offended by the character Artie who is portrayed by an actor without a disability. Artie and the show's writers are obsessed with walking. This works out well since they made sure not to hire an actor without a disability. Anyone familiar with paralysis and wheelchairs knows Artie is a poser--a bad one at that. He is also a sad sack--the show always has him wishing he could be, dare I say the word, normal. As Wheelie Catholic perceptively pointed out
"Participants emphasized that myths and assumptions about disability continue to be perpetuated in the popular show. Instead of using the show as a vehicle to turn this negativity around another generation is being honed on plots that include ablest notions. For example the Christmas show portrayed walking and a cure as every disabled persons wish. The plots include Artie wanting to play football, wanting to dance and do other things but never deal with the fact that sports and dancing are done by people in wheelchairs. Rather Artie is portrayed as depressed because he can't do these things.
It's a real slap in the face to those of us who live with a disability to see this kind of thing week after week. It completely ignores our disability culture and reinforces old and backward notions about disability."
A slap in the face--perfect words for what Glee represents. The Christmas show was particularly offensive as they had Artie using an exoskeleton to walk. I find such an invention a preposterous waste of time, resources, and labor. I showed the exoskeleton to my son earlier this year when the contraption appeared in technology magazines and he burst out laughing. "Dad" he said "obviously they never talked to anyone with a disability to come up with such a stupid design and idea". My boy gets it. And this as Wheelie Catholic points out is the real tragedy with Glee. The message sent remains the same--walking is Artie's goal, his dream to do things "normal" people can do like dance, play sports, and dance. Let me clue the writers in to a basic fact: people with disabilities do all these things, and quite well. I am a decent skier. I am a good kayaker. I am and always have been a bad dancer. I know some superb skiers, some can walk some cannot. I have seen some amazing dancers that could not walk as well. Just try a google video search if you doubt me. Or better yet watch the X Games or the Paralympics. I do not see any of these people wishing they could walk sporting a silly exoskeleon. Too bad we cannot make Artie as cranky as me. Imagine the scenes possible? A scary though my son just chimed in! Imagine this: "Artie don't you wish you could walk again?" Artie replies "That is ableist propaganda. Walking I will have you know is highly over rated. My wheelchair rules. I can sing, I can dance, I can do anything I want and none of it involves the ability to walk. You are a bigot!" When that sort of dialogue appears on a mainstream television program I will be living in the utopia of nondiscrimination. I doubt I will ever live in such a world but will always work toward that goal
Friday, December 24, 2010
Merry Christmas to All
Twas the night before Christmas... Shoot someone stole my line. So tomorrow is the big day. I look forward to seeing my son's face when he opens his gifts. I look forward to a good meal and family. I look forward to seeing my black lab happy to have many humans about with whom she will play. I look forward to a roaring fire in the wood burning stove. I even look forward to Christmas music because I only listen to it on the day of Christmas. I am thankful I am healthy for I spent more than one Christmas sick and in the hospital a child. And truth be told those were the best Christmas' I ever had. Why? Well who does not feel bad for a kid in the hospital? I even got sympathy from my siblings! Staff went way out of their way to make kids happy as did my parents. And this is what Christmas is all about--good cheer and giving to others. By good cheer I mean putting on a smile and trying to make others feel better emotionally. This does not entail gifts but giving of one's sprit--the real meaning of Christmas. In terms of giving I do not mean gifts, sure gifts are fun to receive and give. The real giving is the gift of time and care for loved one's. Yikes, this may all sound trite as I am trying to get across sentiments that are hard if not impossible to express. It is in essence the most basic aspects of life I am thrilled to have. The love of my son, a good home, a wonderful family, friends. These things make me feel like a rich man. And so I extend my best to all those that come across these words. Merry Christmas to all and to all a goodnight.
Subscribe to:
Posts (Atom)