I find the notion that one has the right to die impossible to disentangle. Death is not a right it is a biological inevitability. All humans that are born will die. Death is inevitable. The so called right to die is incorrectly framed. People want to control how their life will end. Superficially, this makes sense but typically people die in a hospital or nursing home after a long physical decline. According to various sources, only 25% of Americans die at home. What the right to die really involves is a primal desire for control. In my opinion the belief a person can control one's death is narcissistic in the extreme. As I have noted many times, we do not live or die in a social vacuum. Our death has meaning that extends well beyond the person that has died or is dying. Our lives are not equally valued, a fact those that advocate for assisted suicide legislation refuse to acknowledge. Bias exists in many forms. For me, the bias I deal with on a daily basis is called ableism. I rarely hear this term. In fact the only place I hear this term is on university campuses. Fred Pelka, in the ABC-Clio Companion to the Disability Rights Movement, defined ableism as follows: "Ableism is that set of often contradictory stereotypes about people with disabilities that acts as a barrier to keep them from achieving their full potential as equal citizens in society".
Ableism is deeply ingrained into the fabric of American society. Ableism is everywhere. It is in our language and use of metaphors. It is in the built environment. Ableism surrounds us and is impossible to avoid. I come across the worst sort of ableism and I do not even need set foot outside my door. I continue to research and write about the death of Tim Bowers, a man that experienced a severe spinal cord injury and died within 24 hours. I was looking for follow up stories in small town Indiana newspapers where Bowers lived and died. I discovered a dreadful article about life as a quadriplegic in the Indy Star. Here I refer to Marisa Kwiatkowski entitled "He Had the Right to Die. But Could He?" Link: http://www.indystar.com/story/news/2014/12/20/right-die/20696633/ This article can only be characterized as ablesim run amuck. The article is about Arun Goel and his family. In 2001, Goel broke his neck and as a result is a quadriplegic. Goel had recently retired from a practice in cardiology and his wife, Sarla was a pediatrician. The main reason the article was published was because Goel's daughter, Malini, recently made a short documentary about her father, "Should Tomorrow Be", that won best shorts competition at the Mallorca International Film festival. I have not seen the documentary which is apparently based on films taken at the point of injury and recovered many years later.
I have no idea what sort of life Goel lived before or since his injury. All I know is he has an upper level injury and experiences the typical complications. I have no issues with the family. I do have serious issues with Kwiatkowski. The language used in her poorly written article is deeply objectionable. The emotional rhetoric is over the top.
I quote:
"Tears leaked from the corners of Dr. Arun Goel's eyes, pooling on the pillow under his head. He couldn't brush them away. His daughter, Malini, wiped his cheeks for him. She caressed his forehead. That gentle stroke of her fingers was more than just a tender gesture between father and daughter. It might be the last moments they spent together".
Stunning words even for a small town newspaper. What this conveys and is designed to prompt is quite obvious; in a word pity. Goel's injury "left his mind intact" and required "life sustaining treatment". Equally obvious leap in logic--his injury is a nightmare of the worst sort, a mind intact in a body that can do nothing. Oh the horror. But wait it gets worse. Goel's injury gave him "the legal right to decide whether to continue receiving that treatment. More painfully blunt, Arun had a choice: life or die". Oh please. Every person has the right to receive or refuse treatment. If a typical person had an infection they could refuse to take an anti biotic and untreated would become a life threatening condition. The only difference between Goel and a typical person is that his life as a quadriplegic is inherently different. Different here means less valuable as in his life does not have the same value as a person that is bipedal. I know this because Kwiatkowski thinks Goel's life is "a story of love, of family, and maybe, of incredible will power." This is ableism in its purely emotional form. Goel is a tragic figure of epic proportions. Nothing could be worse than a spinal cord injury. Kwiatkowski breathlessly noted: "Arun, who had walked four miles on the treadmill the day of his accident was a quadriplegic. He would never walk again. The 62 year old couldn't scratch his nose, hug his family, or wipe aways his own tears". I cringed inwardly when I read those words. How misleading. A second reference to Goel crying and tears. And no hugs? I am sure his family hugged him many times. Why people even hug me. Amazing? I think not.
The article blithely moves on to 2006 when Goel decided to die. People flew in from all over the world to say good bye. His family pleaded with him not to die. Goel did not want to be a burden. He feared living in a nursing home. His family tried to bribe him to live with offers of getting him a puppy or taking a trip to France. Goel supposedly told his family dependency was a disease. The family had signed living will stipulating that neither spouse would receive more than three months life sustaining treatment. According to Kwiatkowski, "he decided to exercise his legal right. He decided to die". This is grossly misleading. This too is ableism. It is simply assumed life as a quadriplegic is a fate worse than death. Goel had suffered enough. But wait there is more! I sound like a carnival barker. Goel decided to live and in 2007 he received a diaphragmatic pacemaker that enabled him to breath on his own. This is life changing for a quadriplegic. Not for Goel though--doctors told him his life expectancy was six months to a year. This estimate was made nine years ago and places Goel firmly in the miracle category. His disability and life are individualized. No one wondered about the life changing ability to breath off a ventilator. No one asked why would he require nursing home care. Why did no one deem Goel depressed and in need of psychiatric care and perhaps medication? All that people saw was what he could not do. Apparently Goel's "diagnosis" prevents him from venturing far from home. His wife, Sarla, is apparently his primary care giver and according to Kwiatkowski "takes him to restaurants, concerts, or galas 10 to 12 times a year". The phrase here dehumanizing and infantilizes Goel.
At age 70 Goel apparently has mixed feelings about life. Unlike others his misgivings are about the choice to live or die post spinal cord injury. Again, this is ableism. When I think about my life I never frame it as pre and post paralysis. In fact no one I know does this. Life is what you make it. All people have strengths and weaknesses. My disability, like all others with a disability, is about much more than what my body cannot do. Walking is not relevant in assessing the contributions I have made. Is my disability a variable? Of course as is Goel's but it is not how I frame my existence. Disability is a part of my identity--note the word part. What bothers me is not the physical deficits I adapted to long ago but the social consequences of disability. I decry the fact a wheelchair often acts as a portable social isolation unit. I abhor the fact many lives have been lost and no one seems to care about this outside of the disability rights community. Articles such as the one I have deconstructed are counter productive and represent a real missed opportunity. Like I said ableism run amuck.
Tuesday, December 30, 2014
Saturday, December 27, 2014
Access Fail of the Year
I traveled a lot during the 2013/2014 academic year. I was on the West Coast not once but twice. I was in Boston, New York, City, Baltimore, Washington DC, Atlanta, Hartford, New Haven, and other cities. Travel for a a paralyzed man is never easy. Airline personnel are typically hostile to my presence. Problems abound each and virtually every time I fly. Hotel staff often appeared shocked a middle aged paralyzed man can travel alone and expect an accessible room to be ready upon arrival. Cabbies nationwide are nasty and more than once a cabbie sped by or wanted money to put my wheelchair in the trunk. Bus drivers as a group are better but lifts are supposedly broken or the driver has no idea how to tie down my wheelchair. In short problems abound when I hit the road. I thought about this last night. My left hip woke me at 4:30AM. It feels like hot poker has been placed on my hip. A pronounced pain is present. Not much can be done about my pain. Actually there is nothing I can do. The only mediations that work dull my mind and put me in a stupor. I prefer the pain to a dulled mind. To pass time and wait for the sunrise I thought about the worst access problem I encountered. There was a high end hotel in Boston I stayed at. The bed in the accessible room was so high I could not make the transfer from my wheelchair onto the bed. The box spring was removed and I learned how important a box spring is that night. I did not sleep at all and as a result performed poorly at a public meeting. There was another hotel that accessible entrance was through the luggage room. Each and every time I went in or out about 50 bags had to be moved. There was a aisle chair to get on a plane that was so old and worn out that I had a person sit on it as I was concerned it could not hold my weight. There was a rent-a-car with hand controls that was lost and took two hours to find (it took longer to find the car than it took to fly from New York to Detroit). I checked into an accessible hotel room in San Diego that had so much furniture in it I could not get to the bed. I realized the hotel had used the room to store furniture. Ah, to be such a valued customer. To be fair I had a select number of good experiences. Select as in very few. The gold star for meeting and exceeding my expectations was the Red Roof Inn in Syracuse.
None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter. Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate. Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering. I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.
I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:
What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes. Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.
None of the above problems came close to the worst experience I had this year. The worst experience I had was in fact not that bad but is indicative of why access remains problematic. I skied a few times last winter. Like other skiers, at the end of the day I am sore. If possible I like to swim after I ski. It relaxes and warms my body. Swimming is a real luxury in the winter after skiing. Typically, high end hotels have a pool. Somer resorts even have a heated pool outside. For me, this is the ultimate in luxury. It is very rare I can swim after skiing but I tried to last year. I skied near Syracuse and stayed in a mid level motel because it had a pool. I made the reservation solely because of the pool. I called and wrote prior to making the reservation. Yes, the pool is accessible. Yes, the lift is operating. The hotel staff was correct, the lift did operate. Upon arrival I knew I was in trouble. The motel was a bit run down. It had clearly changed hands many times and the ramp to the front desk was way out of code and steep. I had a room on the first floor next to the pool. I walked into the room and the overwhelming scent of chlorine filled the room. There was no window to the outside. It was bad but would not kill me for one night. I was tired and had no interest in checking out and then finding a new motel in the dark. The pool was easy to find as it was next to my room. As I entered the pool room the smell of chlorine was over powering. I could see the pool. It was big. It had a lift that worked. There were also 4 steps to get the pool level. I went to lobby and asked where is the accessible entrance to the pool. The employee had no idea. She called the manager. He came to the desk and told me he had no idea how I could get to the pool. He then asked "So, you cannot walk up the steps at all? We can carry wheelchair up the steps and then you can get back in. That is what we have done in the past". Sorry, but no I can not walk or stand. A puzzled look resulted in the manager calling the head of maintenance. This man appeared and he had no idea but suggested house keeping might know. At this point there is a small quorum of people. All are perplexed. All agree this is the most unusual request ever made. It is as though I am the only paralyzed person on earth. And here is the core issue: my "request" is individualized. Not one person present was making the leap in logic required that would negate this so called problem in the future. My request was not all about me but rather a disenfranchised class of people who are protected by the law. The law is called the Americans with Disability Act. They were breaking the law and they had no clue they were violating my civil rights.
I was not expecting the people at the motel to understand the larger implications of a pool lift that was not accessible. They were just doing their job. At issue for me is the ingrained ignorance and social exclusion. Disability history and culture is simply not taught in secondary schools and is rarely part of a collegiate education. As a result, disability is rarely if ever framed as a matter of civil rights. Limited access and the social isolation it creates are blithely accepted as the norm. I am a problem that needs solving. Sorry, but no. I am not a problem. I am a sentient human being. I have the same rights as any other American. I have the same rights as any other guest that checked into the motel. What took place at the motel was typical. Access problems abound. I cannot travel without encountering barriers social and physical. I am well aware that the way I approach barriers that abound is complex for I am not a single individual. I am the very representation of all things disability. I am a token, a memorable person that represents all people with a disability. If I get angry all men that use a wheelchair are mad at the world. If I am firm and forthright I am a difficult customer. People, typical bipedal people, do not get it and some days I think they do want to get it. My experiences are far from unique. Liz Henry wrote about the lack of accessibility at technology conferences. Like me, she has been going to conferences regularly for many years. Has progress been made and is disability inclusion valued? In a word no. Henry wrote about a typical experience, one that every person who uses a wheelchair has had:
I ask a hotel employee. I ask another conference goer. I find a conference organizer. The hotel people go and find other hotel people. There is a hubbub. Facilities people with walkie-talkies show up. I am polite and not angry, over and over. Everyone stands around wondering what to do. There is a freight elevator that is locked that you can only get to from the back alley around an enormous city block. I end up in the basement. There is a tiny airlock-style lift but it’s locked and no one is sure who has the key. I demand the key. Consternation. No one has ever thought about this, ever, in the history of the known universe!
I often INVITE
able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.
I had to laugh when I read Henry. I get a perverse sort of pleasure when typical bipedal friends get an inkling to what my life is like. I often joke, welcome to the land of disability. Locked elevators and bathrooms abound. Elevators filled with trash and cleaning products are common, obscure entrances to buildings and other access adventure exist; for example lots of trips through tunnels when navigating universities and huge conference centers. I regularly see the worst parts of some of the best buildings. In a way it is interesting but there is no question the lack of access is a slap in the face. This metaphoric slap is fueled by ignorance and a lack of information. Most venues I visit all state they are accessible. To a degree this is correct. Theoretically one can navigate freely but no one know how to get from the lobby area to the bar, pool, health club or restaurant. No one knows if there is an accessible podium where I will be speaking. No one knows the nearest bathroom to the room I will be speaking in is on a different floor and requires the use of an elevator. No one knows if the nearest subway or bus stop is accessible. No one knows if the airport shuttle bus is accessible. No one knows if the pool has a lift. No one knows where the elevator is when I encounter a sign that points down to an impressive stairway to where I want to go. Sure you can get in--sort of. Like Henry, what I have learned if there is an information black out "that tells me right away I'm heading for a world of alienation, in a place where no one has put thought into accessibility". able-bodied strangers and friends alike to find, and ride, the locked, blocked, garbage-filled elevators in the basement with me; to stay by my side and witness how it goes. I have to laugh all the way through it. It’s more than inconvenience. Crappy access says, like a slap in the face, that we aren’t wanted and no one gives a fuck.What Henry describes is exactly what I have experienced the last three times I have attended the American Society of Bioethics and Humanities (ASBH) annual meetings. There is no disability diversity. I rarely if ever encounter another scholar with disability. There is a good reason for this. It is no different from the worst access fail I described above. Scholars with a disability are alienated for good reason. Staff organizing the ASBH meetings treat access issues as an individual problem. Any input from scholars with a disability is rejected. So called access "problems" would not arise if a modicum of thought was spent on access--something I have thought about for nearly 40 years. Some professional organizations think about access issues, the ASBH does not. It never has and I doubt it ever will. The utter lack of interest in access at ASBH meetings is by far the worst of any professional association I have ever been involved with. No information is provided about access. How about a wheelchair route map to the ASBH registration desk? Nope. A list of accessible taxis and bus routes? Nope. Signs pointing out accessible paths to frequently used locations? Nope. Does anyone know how to unlock elevators or bathrooms or is there a contact person available? Nope. Are distances included in maps? Nope. Are microphones lower so wheelchair users such as myself can ask a question? Nope. Are ASL interpreters and CART provided? Sometime yes, sometimes no; and if provided is the deaf scholar followed by ASBH staffers to insure they are getting maximum bang for the buck? Yes. Are conference materials provided in a screen readable format? Nope. Is the app for the conference screen readable? Nope. Are a list of nearby accessible restaurants made available? Nope. The list goes on and on. Not one but two ASBH presidential task forces on disability have been created. I was part of one. Hundreds of emails were exchanged. Telephone conferences were held. Were concrete suggestions enacted? Nope. Were the task forces on disability used to exhaust scholars that wanted to be involved in an effort to make them give up in frustration? I do not know. Here is what I do know: if I am the only person present at a conference using a wheelchair I am mad. I am mad because I know access is not valued. I know without question the professional association is doing something very wrong. Here is a radical idea for the ASBH: stop complaining about cost of CART, ASL interpreters and how access is the hotels problem and that the ADA does not apply. Please just stop, think and do something to be inclusive. Demonstrate that scholars with a disability are valued members of the organization. The ASBH is failing and has failed for quite some time to be inclusive to scholars with a disability. Within the small population of scholars with a disability when access issues and the ASBH are mentioned there is often stony silence and an annoyed roll of the eyes. More than once I have heard "That organization sucks in terms of disability access. I never go, its just not worth the hassle". I am perplexed. No one at the ASBH wakes up in the morning and thinks lets alienate scholars with a disability so they will not attend the meetings yet this is exactly what they are doing. Thoughts that come to mind at 4:30AM are often deeply embedded. My alienation is as heart felt as it is unwanted and unnecessary.
Sunday, December 21, 2014
Mortality: It's About Living
Brittany Maynard has quietly slipped away from the media's attention. For me and many others opposed to assisted suicide this is a great relief. I spent far too much time talking, thinking and writing about Maynard and the slick ad campaign waged by Compassion and Choices. I wish her family well as they endure the grieving process. I know all too well grieving the death of someone you loved is a never ending source of sorrow. I have been pondering end of life issues the last few weeks. Winter is settling in where I live. The days are short and the nights are long. It is cold and crisp. The end of the year is near and this always makes me retrospective. I miss my son who lives in Seattle and he will be celebrating his first adult Christmas away from home. I have been looking at many cherished photos of him when he was a little boy. He was a cute kid but a royal pain in the ass for his secondary school teachers to handle. Think smart and subversive and that is my son. The apple does not fall far from the tree. I am happy to take my share of the blame or credit and this has me thinking. What sort of job did I do as a father? What will he remember? Will he remember how I lived or died?
Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:
In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen.
Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive: http://myhusbandstumor.com/archive Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:
Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.
When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:
Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:
In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen.
Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive: http://myhusbandstumor.com/archive Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:
Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.
When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:
It’s over.
It wasn’t a war or a fight. Those things have rules. This was more like Aaron getting in the ring with the Mohammed Ali of cancers, and smiling for round after round after he got his teeth knocked out and his face rearranged.
Ding.
It ended today at 2:43pm, in the middle of a run-on sentence, my head on his heart and my arms around him in a hospital bed built for one, but perfect for the two of us. We’ve spent the last three years in a variety of hospital beds. We were engaged in the light of a heart rate monitor, snuggled together just feet from his mother on the night of his first seizure. He let me sleep next to him before brain surgeries, even when I was 8 months pregnant and my belly pushed on his IV cords. Our Ralph crawled for the first time in a bed on the oncology floor, desperate to get to the laptop where we were watching The Sopranos after Aaron’s infusion. We snoozed and watched countless movies and TV shows in those little beds, which somehow never felt too small for our tall bodies. Yesterday I spent hours in bed with him, playing songs we loved and remembering stories from our relationship, thanking him for everything he brought to my life and letting him know it was okay to go and chill in the other world with our baby and my father.Today we took our last nap in our last hospital bed, in our home, under a blanket that Megan sewed for our wedding.
It’s okay. It’s okay. Thank you. We had so many good years. Not enough, but really good years. You were so good. You were so good to me. I love you. I’ll keep you in my heart, forever. It’s okay. He breathed out, and I readied for the sharp inhale that would follow 8-10 seconds later, rattling through his body. It never came. That’s how it ends. One quiet second.He was here, and then he was gone. It was tangible, this sudden hole that appeared in the center of the universe when he left his body to become everything all around me, just as he promised to do.But we are stardust, and our bodies are just vessels to help us navigate this earth and to eat Taco Bell. I laid with his body and soaked in his warmth. We dressed him in head to toe J.Crew and his best Nike Dunks. I didn’t even know they cremated you with your clothes, but he’ll be all mixed together with some of his favorite things and the finer things were very important to this man.
Before his first surgery, I stole a marking pen from the surgeon and drew a small heart on his hand. Not so much to reassure him, but to reassure myself. Tonight, I found the same one deep in an old make up and at the urging of his mother, left the same small heart for him with the same stolen marker. I know what Aaron always knew: it might not be true right this second, but it’s going to be okay.
I admire this man. He did not turn his end of life into a made for media event. He and his wife celebrated his life. They had fun writing an obituary. Really, who does this? Few have this sort of wild creativity. What struck me the most though, was that Purmort's son will be able to go back and read about how his parents met, what music he liked, his work life, and how how he died. His death that was not funeral dirge but celebration. Purmort was the antithesis of Maynard. While his end of life experience got some media attention it was dwarfed by Maynard. Everyone had an opinion about Maynard--positive and negative. Purmort made people laugh and think. He enjoyed life to the fullest and died in the arms of his wife. He led a life worth living. A life worth living. That is what people should be remembered for.
Wednesday, December 10, 2014
Social Safety Net and Fear: Be Very Afraid
As I write these words snow is falling heavily outside my window. Think winter wonderland gorgeous in every way possible. Silence reigns. The animals are hunkered down for the time being and it is silent outside. Rather than enjoy the beauty of the winter landscape I love so much I am agitated--highly agitated. A few hours ago I read an article by Andrea Louise Campbell, a professor of political science at MIT, entitled "How Medicaid Forces Families Like Mine to Stay Poor". Link: http://www.vox.com/2014/12/9/7319477/medicaid-disability Two thoughts have dominated my mind:
1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?
2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?
In the article by Campbell, based on her book Trapped in America's Safety Net she details what took place to her sister-in-law after she had a car accident. At the time her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably the baby survived the accident as did Wagner. However Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was after all a professor at MIT and had taught social policy for many years. What she discovered though was quite different. She could provide little help.
Adapting to a spinal cord injury is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a SCI extends well beyond the body. Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time the vast majority of people who have a SCI eventually adapt. Today however newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:
The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor... The programs Marcella now needs as a quadriplegic have helped her in many ways, but have also thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.
Ah, welcome to the land of disability. Our current means tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following her injury it was clear to Campbell that her sister-in-law's career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:
In order to get poor people's health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it--they have to meet the programs income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit.
Again, welcome to the land of disability. The poor are not to be trusted. Those with a disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damn well better hold onto the receipts and be able to demonstrate you have used up the allotted amount. If you need more be prepared for a mountain of pile work and documentation.
The system is punitive in a myriad of ways and while it helps it hurts and grinds people down.
Assets cannot exceed $3,150.
Money cannot be used to pay student loans or household bills.
One cannot save for retirement.
An emergency fund cannot be created in the event they have a household or personal emergency.
One cannot save for a child's education.
A family member cannot pay for their niece or nephew education. That would be considered income.
Any inheritance for their son would go to Medi-Cal.
In short, Campbell's sister-in-law and brother are barred from doing what everyone else in America tries to do--save for retirement, pay for their child's education, and earn as much money as possible or desired.
Campbell gets to the bottom line, a twisted bottom line at that.
America's social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well.
Campbell put the perfect face on why so many paralyzed people are forced to live in poverty. That is live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse, is the cost of empowering technology in the form of a wheelchair. Sure it is covered but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fund raiser because those funds are not going to appear.
Campbell and others come to a basic conclusion: American social policy is rotten to the core. So on this lovely day as I look out at a thick blanket of snow and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can't be trusted. Our desire to be connected to the community is cut off--go to the nursing nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to "read through the heart breaking stories" and the "many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise". I wonder though, are such stories helpful. Some will dismiss it as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story Campbell's sister-in-law only heightens that fear. If people cared, that is if people wanted to have the elderly, poor and disabled as vibrant members of society, we would not have accepted a rotten social support system. Campbell is correct--rotten to the core. Leave it to me to spoil a wonderful day.
1. How did we as a society allow the social safety net to be warped into a penurious system that keeps people with a disability on the edge of disaster?
2. Why are disability rights perceived to be an onerous burden that we begrudgingly and with great resistance supposedly meet?
In the article by Campbell, based on her book Trapped in America's Safety Net she details what took place to her sister-in-law after she had a car accident. At the time her sister-in-law, Marcella Wagner, was seven and a half months pregnant. Remarkably the baby survived the accident as did Wagner. However Wagner experienced a severe spinal cord injury that left her a quadriplegic. Campbell initially thought she would be able to provide her sister-in-law with a lot of help. She was after all a professor at MIT and had taught social policy for many years. What she discovered though was quite different. She could provide little help.
Adapting to a spinal cord injury is not easy. The higher the level of injury the more complex and expensive life becomes. The difficulty adapting to a SCI extends well beyond the body. Forget the physical adjustment. Forget the stigmatized identity and the diminished social status. Over time the vast majority of people who have a SCI eventually adapt. Today however newly minted cripples enter an even more hostile world than the one I adapted to long ago. Campbell vividly detailed the harsh reality her sister-in-law encountered:
The accident caused more than the physical and emotional devastation that upended Marcella's career plans. It also brought about an economic tragedy that hurtled her young family into a world of means tested social assistance programs, the safety net of public programs for the poor... The programs Marcella now needs as a quadriplegic have helped her in many ways, but have also thrust her, my brother, and their young son into poverty, with little hope of escape. Until this accident, I did not realize the depth of the trap.
Ah, welcome to the land of disability. Our current means tested social assistance programs are designed to keep people with a disability impoverished and on the edge of disaster. Immediately following her injury it was clear to Campbell that her sister-in-law's career plans were in tatters. She, her husband, and infant were going to have to be impoverished to survive. They were told to get rid of everything they owned, spend down, and declare bankruptcy. Campbell wrote:
In order to get poor people's health insurance, Dave and Marcella must stay poor forever. Marcella qualified for Medi-Cal because she is disabled, but because Medi-Cal is for poor people, Dave and Marcella have to be poor to receive it--they have to meet the programs income test. Counterintuitively, meeting the income test does not mean having enough income (as in doing well on the test), but rather having low enough income. The income test is actually an income limit.
Again, welcome to the land of disability. The poor are not to be trusted. Those with a disability cannot be trusted. Do not exceed the allotted number of catheters per month. You had damn well better hold onto the receipts and be able to demonstrate you have used up the allotted amount. If you need more be prepared for a mountain of pile work and documentation.
The system is punitive in a myriad of ways and while it helps it hurts and grinds people down.
Assets cannot exceed $3,150.
Money cannot be used to pay student loans or household bills.
One cannot save for retirement.
An emergency fund cannot be created in the event they have a household or personal emergency.
One cannot save for a child's education.
A family member cannot pay for their niece or nephew education. That would be considered income.
Any inheritance for their son would go to Medi-Cal.
In short, Campbell's sister-in-law and brother are barred from doing what everyone else in America tries to do--save for retirement, pay for their child's education, and earn as much money as possible or desired.
Campbell gets to the bottom line, a twisted bottom line at that.
America's social assistance programs are stingy and difficult to access because of an age-old suspicion of the poor. They are designed to be less attractive than work. One problem is that they are so miserly as to be impossible to live on. For a disabled person like Marcella, whose expenses will be greater than for an able bodied person, the limits are truly problematic. And because insurance for the poor is the only source of the long term supports and services the disabled need, they get caught up in the anti-poor dragnet as well.
Campbell put the perfect face on why so many paralyzed people are forced to live in poverty. That is live in poverty forever. To raise children in poverty. To be unable to have careers. To lack the ability to get a higher education. To travel. The list of impossibilities is heart breaking. Worse, is the cost of empowering technology in the form of a wheelchair. Sure it is covered but not an appropriate wheelchair. A used power wheelchair costs about $25,000. Need a wheelchair cushion to prevent pressure sores? Good luck. For me I must have a demonstrated medical need. That means being hospitalized with a pressure sore three times in one calendar year. Yes, to have a cushion designed to prevent pressure sores one must develop a pressure sore first and do so three times. Need to renovate your home to be wheelchair accessible? Good luck. Create a fund raiser because those funds are not going to appear.
Campbell and others come to a basic conclusion: American social policy is rotten to the core. So on this lovely day as I look out at a thick blanket of snow and I get it. I really do. Crippled people are unwanted. Corporations consider us a drain on profits. Our elected officials think we are crooks looking for a free ride. The poor and disabled can't be trusted. Our desire to be connected to the community is cut off--go to the nursing nursing home from which you will never emerge. Mass transportation is too expensive. A lift on the bus? Sorry you are not worth it. Housing that is accessible. Dream on. Campbell did a great job putting a human face on what can happen. It is instructive to "read through the heart breaking stories" and the "many similar horrible situations, including many who thought they had good health insurance until a catastrophic accident or expensive medical condition proved otherwise". I wonder though, are such stories helpful. Some will dismiss it as anecdotal and not an accurate representation of the social safety net. My real fear is such stories will be counter productive. People have always feared disability. The story Campbell's sister-in-law only heightens that fear. If people cared, that is if people wanted to have the elderly, poor and disabled as vibrant members of society, we would not have accepted a rotten social support system. Campbell is correct--rotten to the core. Leave it to me to spoil a wonderful day.
Sunday, December 7, 2014
Home, Society and Exclusion
Last Friday night I went to a Christmas tree lighting ceremony. It was mercifully short. It was a typical Central New York small town affair. There were gaggles of teenagers running around. The small crowd was dominated by mothers and fathers with little children, many being carried or in strollers. Everyone was congregated in one area. All the town shops were open. High school and middle school kids were selling a wide array of over priced goods. This is not a critique: as a parent I helped my son sell plenty of popcorn, Christmas wreaths, manure, and wrapping paper in support of his school or Boy Scout and Cub Scout activities. I kept my wallet firmly in my pocket, head down and Kate close by my side. One and all appeared to be having a good time. I was miserable. Really truly unhappy. I was not miserable at the time. Sure I was a little cold and wet but was happy to see two close friends. We watched the tree lit up from afar. We chatted and slogged through a crowd to get to my car. All in all a pleasant evening.
Like many, I struggle during the holiday season with depression. For weeks I have been quietly unhappy. I have no reason to be unhappy. I have a lovely little place to live. My neighbors are friendly and kind. I know most of the neighborhood dogs. There is a chocolate lab named Laker that reminds me of my old yellow lab Burt. Laker is dumb as a post just like Burt. Laker is also loyal in the extreme. I love my job. I have outstanding under graduate students and fascinating graduate students. I have the support of my peers at work. The university where I work is an outstanding university. I have a small but tight knit number of friends who live nearby. I go out on a regular basis and have shared many fine meals with friends. I have thought provoking discussions with my colleagues and students. And yet I am miserable. I chalk this up to the season of cheer. I work hard at convincing myself I should be cheery. This effort rarely works. I bury myself in work and books and ethical conundrums with no solutions. I have cleaned my house today to a high shine. I vacuum daily and polished my kitchen floor before sunrise. All this provides relief but not a cure to the misery in my soul.
I was awake most of the night lost in thought. My brain would not turn off. What is wrong with me? Why can't I be happy like everyone else? Why can't I be content? I gave up the pretense of sleep at 4AM. A gorgeous sunrise lifted my spirits a little.
Along with this lift in mood I made connection via a book I recently read, two short essays, and of all places a long thread on Facebook. Essentially the proverbial light bulb went off in my mind. I realized I have no home. I had a loving home as a child. I was blessed with ideal parents. The home I grew up in felt real. In fact I still have a deep connection to the house on Rich Bell Close. Yet the notion of home has slipped away from me as my body became increasingly dysfunctional. Another variable is that I never expected to live an adult life hence I did not think about the concept of home very much. Fast forward a few decades and here I sit a middle aged man and come to the harsh realization I have no place to go that makes me feel good. There is not at this time a physical or social environment that makes me relax and feel at ease. I have no sense of home. I do not care about the house where I raised my son. I do not care about the place I reside. I do not care about Hofstra or Columbia University where I spent my youth and early adult life. Worse, I have almost no connection with others. By connection I mean a deep bond that defies logic and enables one to share deep inner thoughts. What is wrong with me? Where have I failed? Why am I alone? Surely the fault lies within me. Maybe not. I made a connection that I think enlightens me and I suspect many others with an atypical body.
The connections I have made are as follows:
First I read Lenny Davis book The End of Normal in which he discusses biopolitics or biocultures defined as "the study of the scientificized and medicalized body in history, culture and politics". This resonated with me in that it sought to undermine something I know all too well--disability is socially constructed and as Robert Murphy liked to joke disability is a social disease. Second, I read a post at Musings of An Angry Womyn entitled "I have No Refuge". Link: http://www.angryblackwomyn.com/blog/i-have-no-refuge This short essay really struck a cord with me. Third, I read a post by Stephen Kuusisto at his consistently thought provoking blog Planet of the Blind entitled "Normal". Kuusisto referenced Davis book and railed against "the tyranny of industrial normal" and speculated we must insist on ending this pejorative construction. Link: http://www.stephenkuusisto.com/disability-news/normal-2 Fourth, my experience at the Christmas tree light ceremony in my small town in Central New York.
In reaction to Davis' book Kuusisto wrote:
I’ve been trying unsuccessfully for years to imagine the kind of society that cultural theorist Lennard J. Davis envisions in his book The End of Normal. Briefly: we know race, gender, and disability are social constructions—which means in the widest sense “normality” might be, conceivably, on the ropes. A boxing analogy is appropriate. We’ve been punching Old Normal for a long time. The maddening thing is how “Normal” keeps smiling, taunting us, snarling through his tombstone perfect American teeth. And if you think his teeth are infuriating, well, his odor is worse. He smells like “Brut” and bacon.
Taunts. Oh how I know all about taunts. I know about social injustice. I know all about stigma, fear and alienation. I have been refused service in restaurants. I am often segregated or directed to special services--special being a code word for inferior, not worthy of real inclusion. The short bus or para transit for you! Social injustice is a daily part of my life and others with typical bodies. I cannot nor will I ever live in a utopia where disability based bias does not exist. In "I have No Refuge" I was struck to read:
There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in time of disaster.
I have no refuge from fear, exclusion, discrimination, bothering. I cannot shut down. I cannot get away. I'm forever open to it.
Forever. Think about that word. I often think about forever. Nothing is forever--a very old and trite line. Well for me social injustice is worse not better. Social injustice might not last an eternity, forever, but ableism will not be eradicated in my lifetime. This is where I depart from Davis. He is a first rate theoretician and The End of Normal resonated in my mind. Great book but so what. It did not help me one iota. What is the good of theory if a norm free society does not exist. Reading Davis I was reminded of Thorsten Veblen, an economist by trade and sociologist at heart. I read his 1899 text Theory of the Leisure Class. Veblen was a harsh and humorous critic of capitalism yet never was active in labor politics or social movements. Veblen thought he was merely an observer above the fray. Disability studies scholars such as Davis and other key figures in the field also work as observers above the fray. This is not a critique. We need theory. We need disability studies to be a vigorous field of academic inquiry. We need Davis and other theoreticians. I would suggest we need a lot more than theory. We need to be engaged. We people who work in what is called disability studies need to be socially and personally invested in creating social change. We in short should be leaders of a social and economic revolution. Lives are stake. If we do not become far more active in a boots on the ground style I fear we will all end up like Veblen. He died alone and impoverished in California. No human life should end that way.
I have no idea how to jump start a revolution. Disability is perpetually thought of as a medical problem. The social model of disability is virtually unknown in popular culture. Disability is rarely if ever framed as a civil rights issue. When I try to explain this to others they often reject it out right. Some even laugh at me. The ADA is an unfunded mandate. Disability rights is political correctness run amuck! No one burned a cross on your lawn! No disabled people have been lynched! This is correct. Instead we place people with a disability in institutions and their existence is quickly forgotten. Supposed kindness and care are killers. We continue to design buildings that are grossly inaccessible. Physicians refuse to treat people with a disability. People with a disability often die of physical and social neglect. Schools rely on resource rooms and segregated short buses. Airlines routinely discriminate against passengers with a disability. Wheelchairs are often broken by airlines and disrupt lives for months. Mass transportation remains a challenge to access.
People tell me I am too serious. I need to lighten up and get away and relax. Do something fun I am told. This is sound advice I have heard often. It is not easy to put into action and highlights the cultural divide between those with and those without a disability. When one has a disability throw normal out the window. Want to go out to dinner? Forget Friday and Saturday nights. Good luck dealing with other dinners, narrow aisles that cannot be navigated, and obviously annoyed staff who think you are taking up too much space. Need a bathroom? Dream on. What about going to a concert or sporting event? You must buy tickets through the box office. You leave messages and no one returns your call. At the Christmas tree lighting ceremony all the bipedal people that surrounded me appeared full of good cheer. I was across the street with my friends. I had no desire to be run into or have my view reduced to the backs of people. I also had no desire to be bumped, prodded, blessed or cursed by heavy duty Christians that abounded. Trying to depart was far from easy. People are in their own social vacuum and appear to think it is my job to laterally move around them. Wheelchairs do not move laterally. I get to the curb cut and no one moves. I am not invisible. How I wonder do people think I am going to get by. Excuse me rarely works. People are stunned I can speak. Most ignore my existence.
Go have fun. Sure, have fun in world not designed to be inclusive. Yes, lets try to eradicate the idea of normal. Good luck with that. Normal as Kuusisto noted is taunting us. I am well aware my existence is not valued. This message is far from subtle. On Facebook I described the Christmas tree ceremony and a fellow cripple who I respect suggested I should "be the change you want to see this world" and that I should "honor yourself" and to "be worthy of appreciation from others". These are nice sentiments devoid of reality. I value my existence. I like my body. I assert my civil rights. I teach. Since the day I was paralyzed I have tried to educate others. I advocate for myself and all those disenfranchised. Like other people with a disability I am the real and symbolic form of resistance. I am the blue wheelchair logo sign. But those blue logos lead to nowhere-- an observation my son made many times as a child. People do not want to know about injustice. People do not want to think about inconvenient truths that cloud American myths we hold near and dear. Being depressed seems like a logical response to a world that is hostile to the presence of the atypical body. It is not just me. Try being black. Try being an obese person. Try being deaf. Try being blind. Try being paralyzed. Try being a conjoined twin. Try being gay, transgender, lesbian or bi. Try being different from the norm. Try this and you will realize the end of normal is a pipe dream.
Like many, I struggle during the holiday season with depression. For weeks I have been quietly unhappy. I have no reason to be unhappy. I have a lovely little place to live. My neighbors are friendly and kind. I know most of the neighborhood dogs. There is a chocolate lab named Laker that reminds me of my old yellow lab Burt. Laker is dumb as a post just like Burt. Laker is also loyal in the extreme. I love my job. I have outstanding under graduate students and fascinating graduate students. I have the support of my peers at work. The university where I work is an outstanding university. I have a small but tight knit number of friends who live nearby. I go out on a regular basis and have shared many fine meals with friends. I have thought provoking discussions with my colleagues and students. And yet I am miserable. I chalk this up to the season of cheer. I work hard at convincing myself I should be cheery. This effort rarely works. I bury myself in work and books and ethical conundrums with no solutions. I have cleaned my house today to a high shine. I vacuum daily and polished my kitchen floor before sunrise. All this provides relief but not a cure to the misery in my soul.
I was awake most of the night lost in thought. My brain would not turn off. What is wrong with me? Why can't I be happy like everyone else? Why can't I be content? I gave up the pretense of sleep at 4AM. A gorgeous sunrise lifted my spirits a little.
Along with this lift in mood I made connection via a book I recently read, two short essays, and of all places a long thread on Facebook. Essentially the proverbial light bulb went off in my mind. I realized I have no home. I had a loving home as a child. I was blessed with ideal parents. The home I grew up in felt real. In fact I still have a deep connection to the house on Rich Bell Close. Yet the notion of home has slipped away from me as my body became increasingly dysfunctional. Another variable is that I never expected to live an adult life hence I did not think about the concept of home very much. Fast forward a few decades and here I sit a middle aged man and come to the harsh realization I have no place to go that makes me feel good. There is not at this time a physical or social environment that makes me relax and feel at ease. I have no sense of home. I do not care about the house where I raised my son. I do not care about the place I reside. I do not care about Hofstra or Columbia University where I spent my youth and early adult life. Worse, I have almost no connection with others. By connection I mean a deep bond that defies logic and enables one to share deep inner thoughts. What is wrong with me? Where have I failed? Why am I alone? Surely the fault lies within me. Maybe not. I made a connection that I think enlightens me and I suspect many others with an atypical body.
The connections I have made are as follows:
First I read Lenny Davis book The End of Normal in which he discusses biopolitics or biocultures defined as "the study of the scientificized and medicalized body in history, culture and politics". This resonated with me in that it sought to undermine something I know all too well--disability is socially constructed and as Robert Murphy liked to joke disability is a social disease. Second, I read a post at Musings of An Angry Womyn entitled "I have No Refuge". Link: http://www.angryblackwomyn.com/blog/i-have-no-refuge This short essay really struck a cord with me. Third, I read a post by Stephen Kuusisto at his consistently thought provoking blog Planet of the Blind entitled "Normal". Kuusisto referenced Davis book and railed against "the tyranny of industrial normal" and speculated we must insist on ending this pejorative construction. Link: http://www.stephenkuusisto.com/disability-news/normal-2 Fourth, my experience at the Christmas tree light ceremony in my small town in Central New York.
In reaction to Davis' book Kuusisto wrote:
I’ve been trying unsuccessfully for years to imagine the kind of society that cultural theorist Lennard J. Davis envisions in his book The End of Normal. Briefly: we know race, gender, and disability are social constructions—which means in the widest sense “normality” might be, conceivably, on the ropes. A boxing analogy is appropriate. We’ve been punching Old Normal for a long time. The maddening thing is how “Normal” keeps smiling, taunting us, snarling through his tombstone perfect American teeth. And if you think his teeth are infuriating, well, his odor is worse. He smells like “Brut” and bacon.
There is no hiding for me. I see, eat, hear, taste, smell injustice every waking minute. I live the struggle to keep people with disabilities from unnecessary institutionalization, to keep us from being killed, either by neglect or legislation, to ensure that we are thought of in the building of public spaces, in the Governor's budget, or in time of disaster.
I have no refuge from fear, exclusion, discrimination, bothering. I cannot shut down. I cannot get away. I'm forever open to it.
Forever. Think about that word. I often think about forever. Nothing is forever--a very old and trite line. Well for me social injustice is worse not better. Social injustice might not last an eternity, forever, but ableism will not be eradicated in my lifetime. This is where I depart from Davis. He is a first rate theoretician and The End of Normal resonated in my mind. Great book but so what. It did not help me one iota. What is the good of theory if a norm free society does not exist. Reading Davis I was reminded of Thorsten Veblen, an economist by trade and sociologist at heart. I read his 1899 text Theory of the Leisure Class. Veblen was a harsh and humorous critic of capitalism yet never was active in labor politics or social movements. Veblen thought he was merely an observer above the fray. Disability studies scholars such as Davis and other key figures in the field also work as observers above the fray. This is not a critique. We need theory. We need disability studies to be a vigorous field of academic inquiry. We need Davis and other theoreticians. I would suggest we need a lot more than theory. We need to be engaged. We people who work in what is called disability studies need to be socially and personally invested in creating social change. We in short should be leaders of a social and economic revolution. Lives are stake. If we do not become far more active in a boots on the ground style I fear we will all end up like Veblen. He died alone and impoverished in California. No human life should end that way.
I have no idea how to jump start a revolution. Disability is perpetually thought of as a medical problem. The social model of disability is virtually unknown in popular culture. Disability is rarely if ever framed as a civil rights issue. When I try to explain this to others they often reject it out right. Some even laugh at me. The ADA is an unfunded mandate. Disability rights is political correctness run amuck! No one burned a cross on your lawn! No disabled people have been lynched! This is correct. Instead we place people with a disability in institutions and their existence is quickly forgotten. Supposed kindness and care are killers. We continue to design buildings that are grossly inaccessible. Physicians refuse to treat people with a disability. People with a disability often die of physical and social neglect. Schools rely on resource rooms and segregated short buses. Airlines routinely discriminate against passengers with a disability. Wheelchairs are often broken by airlines and disrupt lives for months. Mass transportation remains a challenge to access.
People tell me I am too serious. I need to lighten up and get away and relax. Do something fun I am told. This is sound advice I have heard often. It is not easy to put into action and highlights the cultural divide between those with and those without a disability. When one has a disability throw normal out the window. Want to go out to dinner? Forget Friday and Saturday nights. Good luck dealing with other dinners, narrow aisles that cannot be navigated, and obviously annoyed staff who think you are taking up too much space. Need a bathroom? Dream on. What about going to a concert or sporting event? You must buy tickets through the box office. You leave messages and no one returns your call. At the Christmas tree lighting ceremony all the bipedal people that surrounded me appeared full of good cheer. I was across the street with my friends. I had no desire to be run into or have my view reduced to the backs of people. I also had no desire to be bumped, prodded, blessed or cursed by heavy duty Christians that abounded. Trying to depart was far from easy. People are in their own social vacuum and appear to think it is my job to laterally move around them. Wheelchairs do not move laterally. I get to the curb cut and no one moves. I am not invisible. How I wonder do people think I am going to get by. Excuse me rarely works. People are stunned I can speak. Most ignore my existence.
Go have fun. Sure, have fun in world not designed to be inclusive. Yes, lets try to eradicate the idea of normal. Good luck with that. Normal as Kuusisto noted is taunting us. I am well aware my existence is not valued. This message is far from subtle. On Facebook I described the Christmas tree ceremony and a fellow cripple who I respect suggested I should "be the change you want to see this world" and that I should "honor yourself" and to "be worthy of appreciation from others". These are nice sentiments devoid of reality. I value my existence. I like my body. I assert my civil rights. I teach. Since the day I was paralyzed I have tried to educate others. I advocate for myself and all those disenfranchised. Like other people with a disability I am the real and symbolic form of resistance. I am the blue wheelchair logo sign. But those blue logos lead to nowhere-- an observation my son made many times as a child. People do not want to know about injustice. People do not want to think about inconvenient truths that cloud American myths we hold near and dear. Being depressed seems like a logical response to a world that is hostile to the presence of the atypical body. It is not just me. Try being black. Try being an obese person. Try being deaf. Try being blind. Try being paralyzed. Try being a conjoined twin. Try being gay, transgender, lesbian or bi. Try being different from the norm. Try this and you will realize the end of normal is a pipe dream.
Sunday, November 30, 2014
Inspiration Fail: The Cure Industry Misleads and Paralyzed People Suffer the Consequences
I love hockey. I am an avid fan of the game. I go to a few games a year. I enjoy watching players develop in the OHL and the AHL. I find it fascinating how players fix "flaws" in their game and develop into NHL players. To make the NHL is a hard road. Players, teenage boys, leave their homes at an early age and precious few become NHL regulars. Hockey players are tough in the extreme. Injuries are common and can be devastating. Concussions happen with alarming frequency. Broken bones, torn tendons and severe lacerations are routine. Career ending injuries could happen on any given shift. Frankly it is amazing no professional players have been killed. What is relatively uncommon in hockey are spinal cord injuries. They happen for sure but spinal cord injuries is not what leaps to mind when you read about injured hockey players. Based on various Canadian spinal cord injury websites it is estimated 17 players above the age of 9 will experience a spinal cord injury in a given year. Given the popularity of the sport, that number is quite low. Younger players, teenagers, are most likely to experience a spinal cord injury. Most spinal cord injuries are a result of sliding into the boards head first at full speed. Thus cervical injuries abound.
The paralyzed hockey players I have read about are typically high school or college students. The most well known person I can think of is Travis Roy who was paralyzed during his freshman year at Boston University in 1995. Post injury, he has become a motivational speaker whose sole interest is a cure for SCI. With help from wealthy donors he founded the Travis Roy foundation. Another young man, Jack Jablonski, an American high school student experienced a cervical SCI in 2012. Like Roy, Jablonski created a foundation specifically designed for finding a cure to spinal cord injury. A cure for spinal cord injury is a laudable goal. I totally support this effort. As I often jokingly note, I do not recommend the paralysis. Here is where I depart from Roy and Jablonski. I take issue with the social ploys used to raise money for a cure to SCI. Simply put, pity sells. A charity model of disability creates revenue streams that empower people like Roy and Jablonski. They can make a career out of their injury and desire to skate again. I get why the charity model is embraced. It is highly effective. Christopher Reeve perfected this model. The charity model of disability, in this case SCI, is an unquestioned financial success. The general public sucks it up like nectar of the gods. Pity sells newspapers, magazines, creates high television ratings, inspires people to donate and hold fund raisers, and provides great visuals. Cue the dramatic images: tall young man standing or skating juxtaposed to the same person in a large power wheelchair post cervical SCI. This results in tear jerking emotional videos of Jack Jablonski Be13eve in Miracles and the tag line "stick tap to hope". Sorry but this video is so over the top I cannot even provide a link.
Here is what is lost in the tears, pity, out pouring of support, and invitation to drop ceremonial pucks: the greatest obstacles people with paralysis encounter is social exclusion and stigma. The statistics associated with disability are grim. The vast majority of people with a spinal cord injury are unemployed, poorly educated, and typically live on the razor edge of financial oblivion. Accessing mass transportation and affordable housing remains exceedingly difficult. The last 40 years of progressive legislation designed to empower people with a disability that reached its zenith 24 years ago with the passage of the ADA has put the law on the side of supporting the civil rights of people with a disability but has utterly failed to resonate culturally. Again, cue up the charity model of disability. The more emotional the manipulation the better the yield--that is an adequate revenue stream for various charitable foundations whose sole or primary goal is a cure for spinal cord injury. This is wonderful for young men who become the public face of a foundation. If the Canadian statistics mentioned above about the prevalence of SCI are reasonably accurate I wonder what happened to the 16 other young men who experienced a comparable injury. Where are these young men? Are they employed? Are they in college? Are they living in a nursing home? Who is providing their basic care? These people are the dark underbelly of the cure industry. These are the people we do not want to think about.
Surely I exaggerate. Sorry but no. I must be bitter! Sorry but no. I am an angry narcissist! Sorry but no. I am angry but my anger is not about my paralysis; I made peace with that a very long time ago. I am angry because people are being duped and mislead. Worse, lives are being destroyed in part because it is all too easy to individualize disability. Writing a check, shedding a few tears after watching a video about a young man who is paralyzed in a hockey game empowers people to assume they did their bit to help the less fortunate (think the ASL Ice Bucket challenge). This may make people feel better but it does nothing for the vast majority of people who are paralyzed. I am advocating for myself but my main concern is never me but rather the next person who is paralyzed. I am happy to take the lead and social abuse that comes with advocating for disability rights. In terms of people with a disability I am privileged. I have a first rate education replete with a PhD from Columbia University. I have a son who I love very much. I work at Syracuse University, an institution with a long and distinguished history in support of disability rights. I have formed a family of friends in Central New York where I live. All these ordinary and wonderful aspects of life make me an exception. In terms life with a disability I am a rarity. And this is what we should be focused on-the lives of paralyzed people. Thus I wonder why has the unemployment rate for people with a disability not changed in 25 years? Why are most people with a disability living on the edge of poverty? Why is accessible housing and mass transportation grossly inadequate? Why are these issues not front and center when discussing disability?
The answer to the questions above are deeply rooted. Culturally we individualizes disability. Disability is not about an oppressed minority group. Disability is not about empowering people via education and employment. Disability is a problem. An individual's problem and bad luck. We will do our best to help the disabled within reason. Reason here is a code word for money. We will do our best provided it does not cause a significant financial burden. Hence the laws that support people with a disability are perceived to be an onerous burden and people often object. The ADA is an unfunded federal mandate critics shrilly proclaim. The fact this is wrong is utterly lost when disability is consistently framed as an individual problem. This gets me back to hockey.
The latest young man led to believe disability is an individual and largely medical problem is Michael Nichols. He experienced a cervical spinal cord injury playing high school hockey in New Jersey earlier this year. I heard him interviewed on the radio and was saddened. I wondered where and when did rehabilitation go wildly wrong. Spinal cord injury is now complicated. Partial injuries are more common thanks to broad based advances in medical care. A protocol exists that limits the damage at the point of injury. This is wonderful as are the many websites that provide detailed information about how to adapt to a SCI. But post injury rehabilitation has embraced the cure industry. Walking as an idea has been embraced. I am aware walking, if a reasonable goal, should be attempted. Post paralysis life is all about maximizing remaining functional movement. If that includes a narrow range of walking, standing or slight movement great. This however is boring stuff. It is not inspirational. No miracles are involved. Rehabilitation and adapting to a SCI involve hard work. The focus on adaptation to SCI does not generate revenue. It does not warm the soul. The ability to assert one's authority and question disability based bias and stigma does not endear one's self to bipedal, typical, others. Just as I was brain washed into embracing a fierce form of autonomous behavior post paralysis circa 1978, newly minted paralyzed people are sold the idea life can be put on hold until a cure exists. Walking as an idea, a glorious ideal, is used to mislead people. Cure is a revenue source--an industry that markets and sells itself via imagery of disability as tragedy. The goal is not to lead a productive life but rather maintain one's body until a cure exits. Thus it is understandable how young men are not taught to be autonomous but rather become professional patients waiting for a miracle. Video such as the hockey themed song abound:
I have followed Nichols, Roy and Jablonski from afar via various media outlets. I shake my head in wonder. To me, they represent a much larger cultural failure. I do not fault them. They are very young men whose life was radically altered in a fraction of a second. They are a product of their time just as I was. My mentors were hard foremost among them was Robert Murphy. Disability is a social disease was a favorite quip Robert Murphy, author of the Body Silent often made. This quip and its larger meaning does not resonate for people recently injured. Instead, I read statements by Nichols and I cringe: "I'll do anything to win. I hate to lose. This injury, I'm not going to lose to this injury." One reporter gushed: He views his recovery like a hockey game that needs his constant effort, shift by shift, day by day.". I admire the spirit but bemoan the focus. Ignored is the very different reality most people post SCI will encounter. Any connection to the larger disability rights movement or disability studies is utterly absent. In place of autonomy far fetched ideals abound. Be a paralympian! Do not let SCI win! Work toward a cure! The result is people leave rehabilitation unprepared for life. Yes, it takes a while for the body to adjust to paralysis but the focus is not placed on the most basic needs. The biological reality of life post injury has not changed. Pressure sores are to be avoided. Urinary issues must be dealt with carefully. For those with a cervical injury, autonomic dysreflexia is a serious and life threatening reality that can in most instances be avoided.
I would suggest we need to radically alter rehabilitation post SCI. Invest in the young men and women with a SCI. Extend rehabilitation from mere weeks to months as a first step to reclaiming autonomy. Focus on immediate needs. Teach people how to manage bowel and bladder care. Provide people with excellent equipment such as wheelchair cushions and power or manual wheelchairs that are appropriate for the level of injury. Educate people about how to care for their body. Teach people how to avoid common secondary complications associated with SCI. Once able to control their body and medically stable move to step two that as of today does not exist. Create, on a state by state basis, cripple universities that operate like a halfway house. Teach people disability history. Detail what what disability rights activists and disability studies scholars have accomplished. Empower people via education. Teach them how to assert their civil rights. Assign them mentors. I am not referring to paralympians but rather ordinary people that are paralyzed and lead a typical life. A fundamental part of all this eduction is employment. Include a human resources department as the final step to the resumption of life. For those without family support or an existing network of friends provide temporary housing and temporary work. Plan and implement activities nationwide. Job fairs, university programs, adaptive sports festivals, equipment expos, and exposure to independent living centers. Expose people to ADAPT, Not Dead Yet and the Disability Education Defense Fund.
All of the above costs money. Millions of dollars would be needed. The savings personally and financially would be astounding. Invest in newly minted cripples! Let's go wild and dream big. Invest heavily at the point of SCI. Provide the best education. Provide the best equipment. Expose people to adaptive sports of all kinds. Create sport and fitness centers. Locate accessible housing and mass transportation. Do not let any person leave cripple university without employment. Do all this and we will have funded a social and technological revolution. To my fellow cripples, I ask for your help and ideas. How do we make this happen? How do we revolutionize lives post SCI? How do we undermine the medical and charity model of disability so that those who know nothing of disability can be empowered to be, gasp, typical and equal.
The paralyzed hockey players I have read about are typically high school or college students. The most well known person I can think of is Travis Roy who was paralyzed during his freshman year at Boston University in 1995. Post injury, he has become a motivational speaker whose sole interest is a cure for SCI. With help from wealthy donors he founded the Travis Roy foundation. Another young man, Jack Jablonski, an American high school student experienced a cervical SCI in 2012. Like Roy, Jablonski created a foundation specifically designed for finding a cure to spinal cord injury. A cure for spinal cord injury is a laudable goal. I totally support this effort. As I often jokingly note, I do not recommend the paralysis. Here is where I depart from Roy and Jablonski. I take issue with the social ploys used to raise money for a cure to SCI. Simply put, pity sells. A charity model of disability creates revenue streams that empower people like Roy and Jablonski. They can make a career out of their injury and desire to skate again. I get why the charity model is embraced. It is highly effective. Christopher Reeve perfected this model. The charity model of disability, in this case SCI, is an unquestioned financial success. The general public sucks it up like nectar of the gods. Pity sells newspapers, magazines, creates high television ratings, inspires people to donate and hold fund raisers, and provides great visuals. Cue the dramatic images: tall young man standing or skating juxtaposed to the same person in a large power wheelchair post cervical SCI. This results in tear jerking emotional videos of Jack Jablonski Be13eve in Miracles and the tag line "stick tap to hope". Sorry but this video is so over the top I cannot even provide a link.
Here is what is lost in the tears, pity, out pouring of support, and invitation to drop ceremonial pucks: the greatest obstacles people with paralysis encounter is social exclusion and stigma. The statistics associated with disability are grim. The vast majority of people with a spinal cord injury are unemployed, poorly educated, and typically live on the razor edge of financial oblivion. Accessing mass transportation and affordable housing remains exceedingly difficult. The last 40 years of progressive legislation designed to empower people with a disability that reached its zenith 24 years ago with the passage of the ADA has put the law on the side of supporting the civil rights of people with a disability but has utterly failed to resonate culturally. Again, cue up the charity model of disability. The more emotional the manipulation the better the yield--that is an adequate revenue stream for various charitable foundations whose sole or primary goal is a cure for spinal cord injury. This is wonderful for young men who become the public face of a foundation. If the Canadian statistics mentioned above about the prevalence of SCI are reasonably accurate I wonder what happened to the 16 other young men who experienced a comparable injury. Where are these young men? Are they employed? Are they in college? Are they living in a nursing home? Who is providing their basic care? These people are the dark underbelly of the cure industry. These are the people we do not want to think about.
Surely I exaggerate. Sorry but no. I must be bitter! Sorry but no. I am an angry narcissist! Sorry but no. I am angry but my anger is not about my paralysis; I made peace with that a very long time ago. I am angry because people are being duped and mislead. Worse, lives are being destroyed in part because it is all too easy to individualize disability. Writing a check, shedding a few tears after watching a video about a young man who is paralyzed in a hockey game empowers people to assume they did their bit to help the less fortunate (think the ASL Ice Bucket challenge). This may make people feel better but it does nothing for the vast majority of people who are paralyzed. I am advocating for myself but my main concern is never me but rather the next person who is paralyzed. I am happy to take the lead and social abuse that comes with advocating for disability rights. In terms of people with a disability I am privileged. I have a first rate education replete with a PhD from Columbia University. I have a son who I love very much. I work at Syracuse University, an institution with a long and distinguished history in support of disability rights. I have formed a family of friends in Central New York where I live. All these ordinary and wonderful aspects of life make me an exception. In terms life with a disability I am a rarity. And this is what we should be focused on-the lives of paralyzed people. Thus I wonder why has the unemployment rate for people with a disability not changed in 25 years? Why are most people with a disability living on the edge of poverty? Why is accessible housing and mass transportation grossly inadequate? Why are these issues not front and center when discussing disability?
The answer to the questions above are deeply rooted. Culturally we individualizes disability. Disability is not about an oppressed minority group. Disability is not about empowering people via education and employment. Disability is a problem. An individual's problem and bad luck. We will do our best to help the disabled within reason. Reason here is a code word for money. We will do our best provided it does not cause a significant financial burden. Hence the laws that support people with a disability are perceived to be an onerous burden and people often object. The ADA is an unfunded federal mandate critics shrilly proclaim. The fact this is wrong is utterly lost when disability is consistently framed as an individual problem. This gets me back to hockey.
The latest young man led to believe disability is an individual and largely medical problem is Michael Nichols. He experienced a cervical spinal cord injury playing high school hockey in New Jersey earlier this year. I heard him interviewed on the radio and was saddened. I wondered where and when did rehabilitation go wildly wrong. Spinal cord injury is now complicated. Partial injuries are more common thanks to broad based advances in medical care. A protocol exists that limits the damage at the point of injury. This is wonderful as are the many websites that provide detailed information about how to adapt to a SCI. But post injury rehabilitation has embraced the cure industry. Walking as an idea has been embraced. I am aware walking, if a reasonable goal, should be attempted. Post paralysis life is all about maximizing remaining functional movement. If that includes a narrow range of walking, standing or slight movement great. This however is boring stuff. It is not inspirational. No miracles are involved. Rehabilitation and adapting to a SCI involve hard work. The focus on adaptation to SCI does not generate revenue. It does not warm the soul. The ability to assert one's authority and question disability based bias and stigma does not endear one's self to bipedal, typical, others. Just as I was brain washed into embracing a fierce form of autonomous behavior post paralysis circa 1978, newly minted paralyzed people are sold the idea life can be put on hold until a cure exists. Walking as an idea, a glorious ideal, is used to mislead people. Cure is a revenue source--an industry that markets and sells itself via imagery of disability as tragedy. The goal is not to lead a productive life but rather maintain one's body until a cure exits. Thus it is understandable how young men are not taught to be autonomous but rather become professional patients waiting for a miracle. Video such as the hockey themed song abound:
I have followed Nichols, Roy and Jablonski from afar via various media outlets. I shake my head in wonder. To me, they represent a much larger cultural failure. I do not fault them. They are very young men whose life was radically altered in a fraction of a second. They are a product of their time just as I was. My mentors were hard foremost among them was Robert Murphy. Disability is a social disease was a favorite quip Robert Murphy, author of the Body Silent often made. This quip and its larger meaning does not resonate for people recently injured. Instead, I read statements by Nichols and I cringe: "I'll do anything to win. I hate to lose. This injury, I'm not going to lose to this injury." One reporter gushed: He views his recovery like a hockey game that needs his constant effort, shift by shift, day by day.". I admire the spirit but bemoan the focus. Ignored is the very different reality most people post SCI will encounter. Any connection to the larger disability rights movement or disability studies is utterly absent. In place of autonomy far fetched ideals abound. Be a paralympian! Do not let SCI win! Work toward a cure! The result is people leave rehabilitation unprepared for life. Yes, it takes a while for the body to adjust to paralysis but the focus is not placed on the most basic needs. The biological reality of life post injury has not changed. Pressure sores are to be avoided. Urinary issues must be dealt with carefully. For those with a cervical injury, autonomic dysreflexia is a serious and life threatening reality that can in most instances be avoided.
I would suggest we need to radically alter rehabilitation post SCI. Invest in the young men and women with a SCI. Extend rehabilitation from mere weeks to months as a first step to reclaiming autonomy. Focus on immediate needs. Teach people how to manage bowel and bladder care. Provide people with excellent equipment such as wheelchair cushions and power or manual wheelchairs that are appropriate for the level of injury. Educate people about how to care for their body. Teach people how to avoid common secondary complications associated with SCI. Once able to control their body and medically stable move to step two that as of today does not exist. Create, on a state by state basis, cripple universities that operate like a halfway house. Teach people disability history. Detail what what disability rights activists and disability studies scholars have accomplished. Empower people via education. Teach them how to assert their civil rights. Assign them mentors. I am not referring to paralympians but rather ordinary people that are paralyzed and lead a typical life. A fundamental part of all this eduction is employment. Include a human resources department as the final step to the resumption of life. For those without family support or an existing network of friends provide temporary housing and temporary work. Plan and implement activities nationwide. Job fairs, university programs, adaptive sports festivals, equipment expos, and exposure to independent living centers. Expose people to ADAPT, Not Dead Yet and the Disability Education Defense Fund.
All of the above costs money. Millions of dollars would be needed. The savings personally and financially would be astounding. Invest in newly minted cripples! Let's go wild and dream big. Invest heavily at the point of SCI. Provide the best education. Provide the best equipment. Expose people to adaptive sports of all kinds. Create sport and fitness centers. Locate accessible housing and mass transportation. Do not let any person leave cripple university without employment. Do all this and we will have funded a social and technological revolution. To my fellow cripples, I ask for your help and ideas. How do we make this happen? How do we revolutionize lives post SCI? How do we undermine the medical and charity model of disability so that those who know nothing of disability can be empowered to be, gasp, typical and equal.
Tuesday, November 25, 2014
A 9 Year Old Girl with a Disability Was Assaulted: Her Disability Awarded her a "Protective Factor"
It is all to easy to locate horrific news stories about the abuse of people with a disability. A simple google search will yield a plethora of stories. I read stories every day about people with a disability that have been killed by strangers or family. Sexual assaults are commonplace for women with a disability. There is a cavalcade of stories that are by and large used as fillers. Ho hum yet another story about the violation of the civil rights of people with a disability. I sometimes think I am impervious to such news. For better or worse I am far from impervious. Last night it was obvious that I care deeply. I slept little because I read about a disturbing story about a cognitively disabled 9 year old girl who was sexually assaulted last year. During the trial Stan Katz provided expert testimony that the 9 year old girl's low IQ (between 64 and 70) provided a "protective factor" that could reduce the emotional distress she experienced as a result of being sexually assaulted. A "protective factor"? Yes, my heart sinks to a new low.
Here is the background. The sexual assaults took place in 2010. The girl in question was not assaulted once but rather multiple times by a boy at her school. The abuse took place at various location at the girl's school. Her family sued LAUSD arguing that the girl needed to be financially compensated because she would require long term therapy to cope with the emotional trauma. Katz testified that any problem the girl in question experienced had nothing to do with being sexually molested but rather the result of not having her father in her life and her mental disability. Katz opined that the girl's "mental disability" acted as a protective factor. He stated "There's a relationship between intelligence and depression. What happens is the more you think about things, you can ruminate, you can focus on things, you can look at the complexities of the matter and become more depressed. The girl's lawyer in response to this assessment asked "So because she may be less intelligent than a general education student, she's going to suffer less depression because of it?" Katz reply was "Very possible, yes".
I have never heard of cognitive disability as a "protective factor". If anything a profound cognitive disability creates a high risk factor for physical and sexual assault. The idea a cognitive disability is a "protective factor" is offensive. It has no basis in reality. Evidently the jury felt the same way. Expected to receive $10,000 to $12,500 the jury instead awarded $1.4 million.
Who is Stan Katz? Based on what I have read on line Katz is a small time celebrity. He has appeared on several reality television programs. Katz has appeared on a show "It's Complicated" with Denise Richards. Most of his time appears to be spent as an expert witness or mediator in child custody disputes. Not surprisingly the most information I could locate was provided by a television news service. Apparently Katz is by trade a forensic psychologist with degrees from Boston University and UCLA. Katz has 25 years of clinical practice in Beverly Hills.
How this man gets in the news makes me shake my head in disgust. How stories such as this all too often end up as a news filler is a human rights tragedy no one seems to care about. But some people do care. I do. I know Dave Hingsburger cares. On his blog, Rolling Around in My Head, he asks the most important question no one asked:
While many people have written, powerfully, about the implications of his testimony and the outrageous contention that people with disabilities don't experience real trauma and emotional pain. I am astounded that this guy even got to testify at all. The acceptance of the question. "Do people with intellectual disabilities experience pain and trauma" or more bluntly, "Would a 9 year old girl, with an intellectual disability, who is repeatedly sexually assaulted, against her will and without her consent, by a non-disabled peer be able to experience trauma" is the real outrage. Link: http://davehingsburger.blogspot.com/2014/11/can-she-feel.html
Outraged I am. I have seen this story appear online at Jezebel and Raw Story, and a few local LA news outlets. The national papers remain uninterested. I suspect this story will get no traction or attention outside of LA and disability related news services. This is the ultimate insult and empowers people to accept the status quo culturally. We do not value people with a disability. They are different. They do not even feel what others, typical others, feel. I urge you to read what Dave Hingsburger has written. He has the experience I do not have. What we share is our outrage. What this story also does is reinforce my gut feeling that when it comes to disability all the wrong lessons are being taught in our secondary schools. Resource rooms and separate and "special" transportation is good and dandy. Point out that this is a form of segregation and one is instantly labeled a problem. I know this because I was characterized as such when my son was in secondary school. I would suggest the root cause of the prejudice I encounter and this terrible story of sexual assault are one in the same. People with a disability are different. They are the feared other. Indeed, the fear factor is significant. Disability is the one minority group you can join by taking a bad step or being involved in a car crash or a myriad other cases of "bad luck". What people do not get is that disability is part of life, a variable that we humans have been adapting to for centuries. All people with a disability can feel as much as a typical bipedal human being. And that includes people with the most profound cognitive deficits. Thus I utterly and forcefully reject the idea that human beings must reach certain thresholds to be declared human. It may help Katz and others to think that a 9 year old girl with a low IQ has a "protective factor" but this sort of thinking is wrong. Horribly wrong. It has no foundation in reality. It is in fact dehumanizing in the extreme. It dismisses the fact a 9 year old girl was repeatedly sexually assaulted. Instead of dismissing this assault it should have led to immediate and profound social and structural changes in our educational system. That is the only logical response. I am reminded of the classic film When Bill Broke his Head. My favorite line in the documentary was "Not a good day for the home team". Not a good day here. I weep for a 9 year old girl I have never met.
Here is the background. The sexual assaults took place in 2010. The girl in question was not assaulted once but rather multiple times by a boy at her school. The abuse took place at various location at the girl's school. Her family sued LAUSD arguing that the girl needed to be financially compensated because she would require long term therapy to cope with the emotional trauma. Katz testified that any problem the girl in question experienced had nothing to do with being sexually molested but rather the result of not having her father in her life and her mental disability. Katz opined that the girl's "mental disability" acted as a protective factor. He stated "There's a relationship between intelligence and depression. What happens is the more you think about things, you can ruminate, you can focus on things, you can look at the complexities of the matter and become more depressed. The girl's lawyer in response to this assessment asked "So because she may be less intelligent than a general education student, she's going to suffer less depression because of it?" Katz reply was "Very possible, yes".
I have never heard of cognitive disability as a "protective factor". If anything a profound cognitive disability creates a high risk factor for physical and sexual assault. The idea a cognitive disability is a "protective factor" is offensive. It has no basis in reality. Evidently the jury felt the same way. Expected to receive $10,000 to $12,500 the jury instead awarded $1.4 million.
Who is Stan Katz? Based on what I have read on line Katz is a small time celebrity. He has appeared on several reality television programs. Katz has appeared on a show "It's Complicated" with Denise Richards. Most of his time appears to be spent as an expert witness or mediator in child custody disputes. Not surprisingly the most information I could locate was provided by a television news service. Apparently Katz is by trade a forensic psychologist with degrees from Boston University and UCLA. Katz has 25 years of clinical practice in Beverly Hills.
How this man gets in the news makes me shake my head in disgust. How stories such as this all too often end up as a news filler is a human rights tragedy no one seems to care about. But some people do care. I do. I know Dave Hingsburger cares. On his blog, Rolling Around in My Head, he asks the most important question no one asked:
While many people have written, powerfully, about the implications of his testimony and the outrageous contention that people with disabilities don't experience real trauma and emotional pain. I am astounded that this guy even got to testify at all. The acceptance of the question. "Do people with intellectual disabilities experience pain and trauma" or more bluntly, "Would a 9 year old girl, with an intellectual disability, who is repeatedly sexually assaulted, against her will and without her consent, by a non-disabled peer be able to experience trauma" is the real outrage. Link: http://davehingsburger.blogspot.com/2014/11/can-she-feel.html
Outraged I am. I have seen this story appear online at Jezebel and Raw Story, and a few local LA news outlets. The national papers remain uninterested. I suspect this story will get no traction or attention outside of LA and disability related news services. This is the ultimate insult and empowers people to accept the status quo culturally. We do not value people with a disability. They are different. They do not even feel what others, typical others, feel. I urge you to read what Dave Hingsburger has written. He has the experience I do not have. What we share is our outrage. What this story also does is reinforce my gut feeling that when it comes to disability all the wrong lessons are being taught in our secondary schools. Resource rooms and separate and "special" transportation is good and dandy. Point out that this is a form of segregation and one is instantly labeled a problem. I know this because I was characterized as such when my son was in secondary school. I would suggest the root cause of the prejudice I encounter and this terrible story of sexual assault are one in the same. People with a disability are different. They are the feared other. Indeed, the fear factor is significant. Disability is the one minority group you can join by taking a bad step or being involved in a car crash or a myriad other cases of "bad luck". What people do not get is that disability is part of life, a variable that we humans have been adapting to for centuries. All people with a disability can feel as much as a typical bipedal human being. And that includes people with the most profound cognitive deficits. Thus I utterly and forcefully reject the idea that human beings must reach certain thresholds to be declared human. It may help Katz and others to think that a 9 year old girl with a low IQ has a "protective factor" but this sort of thinking is wrong. Horribly wrong. It has no foundation in reality. It is in fact dehumanizing in the extreme. It dismisses the fact a 9 year old girl was repeatedly sexually assaulted. Instead of dismissing this assault it should have led to immediate and profound social and structural changes in our educational system. That is the only logical response. I am reminded of the classic film When Bill Broke his Head. My favorite line in the documentary was "Not a good day for the home team". Not a good day here. I weep for a 9 year old girl I have never met.
Thursday, November 13, 2014
Do Not Anger Pre ADA Cripples
My last post was written in support of my good friend and colleague Stephen Kuusisto. He is angry and upset about recent financial decisions made by Guiding Eyes for the Blind that will adversely impact the lives and careers of guide dog trainers and by extension the blind men and women who will form a guide dog team. I get his anger. I admire Kuusisto's willingness to publicly object. It would be far easier to remain silent. And, here is the rub. People with a disability who came of age before the ADA existed spent their childhoods being told what they cannot do. We people with a disability were barred from the right to an eduction until 1975. We were told we were a fire hazard and that our very existence was too upsetting to other children. With parental support, people like Kuusisto and myself fought for an education. Secondary schools were hostile to us as were virtually all colleges and universities. The general public had no idea what to do with us. One thing was for sure--our desire to lead a typical life was seen as an affront. We were uppity. We cripples had no rights. We were known to be an expensive burden that was rejecting the charitable hands that were feeding us. Hence when I became a bus buddy in the early 1980s and fought to get on MTA buses with wheelchair lifts more than once my fellow citizens spit on me. Kuusisto and I were repeatedly told what we could not do. The bias and stigma associated with disability was deeply entrenched. Even when each of us got advanced we continued to encounter one obstacle after another. The result of routine degradation and discrimination was the creation of firm resolve. Go ahead and tell me what I cannot do. I will turn around and not only accomplish the supposedly impossible but do it in a world class fashion. I not only wanted to get ahead in academics I wanted to crush my peers. Hence, we pre ADA cripples became ambitious and hard. Childhood taunts and the bigotry of adults only made us work harder. In short, we pre ADA cripples are highly skilled at defending our rights and looking out for our peers. Both of Kuusisto and I know not all people with a disability had the financial, personal, familial, and professional support that enabled us to advocate for others with a disability. For myself, I consider such advocacy a moral obligation as an unknown number of people with a disability slipped into silence and quietly lived in an institution or family home from which they never emerged.
Kuusisto and I as pre ADA cripples know our lives are worth living. Many people think otherwise. There is no question disability based bias is rampant. How else can one justify the existence of QUALY--quality adjusted life year--in health care. Enter Peter Singer and utilitarian philosophy. QUALY is as much about social capital as it is about economics. Living with a disability is expensive. People deeply resent the expense associated with educating children with "special needs". I have been to countless meetings when the first line item cut had to do with making a school or university building accessible or funding a program for a small group of students with a disability. The point is, we are living in an era of the glorification of money and power. Wealth distribution is increasingly diverted to the so called 1% Exactly how rich does one need to be? Well, for the 1% the answer is an obscene amount of wealth. Money is power. Capitalism has run amuck and the 1% does not care about anything else but money. This has filtered through our entire capitalistic system and has gripped all industries. This now includes guide dog schools. Kuusisto wrote:
Kuusisto and I as pre ADA cripples know our lives are worth living. Many people think otherwise. There is no question disability based bias is rampant. How else can one justify the existence of QUALY--quality adjusted life year--in health care. Enter Peter Singer and utilitarian philosophy. QUALY is as much about social capital as it is about economics. Living with a disability is expensive. People deeply resent the expense associated with educating children with "special needs". I have been to countless meetings when the first line item cut had to do with making a school or university building accessible or funding a program for a small group of students with a disability. The point is, we are living in an era of the glorification of money and power. Wealth distribution is increasingly diverted to the so called 1% Exactly how rich does one need to be? Well, for the 1% the answer is an obscene amount of wealth. Money is power. Capitalism has run amuck and the 1% does not care about anything else but money. This has filtered through our entire capitalistic system and has gripped all industries. This now includes guide dog schools. Kuusisto wrote:
By reducing retirement benefits; summarily dismissing senior staff; and pretending that these things are necessary in order to serve the blind, the new style administrators and Wall Street directors of the guide dog schools are destroying the morale and undermining the security of people who have given their “all” for blind people.
The guide dog schools have plenty of money. These heartless management ideas come from the current corporate driven management idea fix—that reducing investment in employees is good for the bottom line. But I say this is hogwash. And I say the very idea—the very adoption of Bain Capitalism where guide dog employees are concerned puts the blind at risk.
I can say these things because I’m not afraid. The guide dog schools may well put me on a “do not admit” list and prevent me from getting another dog. But I can live with myself. I can’t live with the knowledge that guide dog trainers are now working in fear for their very livelihoods.
Kuusisto has put himself in harm's away. There is no question the twelve guide dogs schools in the country could black ball him. His life could be adversely affected if he cannot obtain another guide dog when Nira retires. Let's address risk. By risk I fear a blind person will be killed some day as a result of training that did not include the expertise required. This should keep people up at night. As for the financial concerns of guide dogs schools, they have no significant worries. Give me a break. The photos of cute labrador puppies are a cash cow. In 2012 Guiding Eyes of the Blind according to Charity Navigator, total revenue was $25,793 537. Total functional expenses amounted to $22,907,296. I call this breaking even. This is good. Very good in fact. Here is the big number, the really important number. Guiding Eyes for the Blind Net assets amount to $56,974,077. If you do not believe me see this link: http://www.charitynavigator.org/index.cfm?bay=search.summary&orgid=3786#.VGTbzb41e-9
Here is more financial evidence. As a charity, Guiding Eyes for the Blind is required by law to file a form 990 with the IRS. This is a matter of public record. Read this 47 page report. I am no financial whiz but I cannot see any justification for the actions of the Guiding Eyes for the Blind.
990 link: https://www.guidingeyes.org/files/form990.pdf
At the end of the day we have a social failure. What is lost is that guide dog trainers "career" is about in the words of Kuusisto the "knowledge and empathy and a profound awareness of disability in all its myriad forms". This knowledge and empathy money cannot buy. However, money can undermine it.
Here is more financial evidence. As a charity, Guiding Eyes for the Blind is required by law to file a form 990 with the IRS. This is a matter of public record. Read this 47 page report. I am no financial whiz but I cannot see any justification for the actions of the Guiding Eyes for the Blind.
990 link: https://www.guidingeyes.org/files/form990.pdf
At the end of the day we have a social failure. What is lost is that guide dog trainers "career" is about in the words of Kuusisto the "knowledge and empathy and a profound awareness of disability in all its myriad forms". This knowledge and empathy money cannot buy. However, money can undermine it.
Monday, November 10, 2014
A Lost Art: Changing Lives of the Better
I almost took a bad fall this morning. I was transferring from my wheelchair to my car and I was being lazy. My right leg was not where it should have been. I knew this but was in a rush and as I transferred I landed in limbo land. I was not in my wheelchair nor had I landed on the car seat. Falling to the ground was a very bad option and my brain automatically kicked into self preservation mode. I leaned heavily into the car and held on to the center console. I dragged my lower body into the car with all my power until I was relatively safe. I then reached down to lift my legs with one hand and with the other hand pulled on the center console. At the same time I twisted my torso and safely maneuvered myself on the car seat. I will be more careful tomorrow.
I did not fall because of the lessons I was taught 38 years ago. Rehabilitation circa 1978 was hard core. Rehabilitation was a long arduous process. It was in fact a form of brain washing that was in retrospect the best thing that ever happened to me. Autonomy was drummed into my brain. Never ask for help. You must be self sufficient. I was taught how to dress myself. I was taught to make transfers from wheelchair to toilet. I was taught to turn my body every two hours all night long. I did this for many years. I was taught about skin care and until 2010 had avoided a severe wound. I was taught how to pop a curb and do wheelies. I was taught how to fall to the ground and get back in my wheelchair. I was taught how to crawl without injuring myself in case my wheelchair was out of reach. I was taught how to get in and out my car. I did not use a model car as most rehabilitation units now use. I was taught how to transfer into my car in all condition (snow, rain and wind). I was taught to transfer on steep hills with an incline up and an incline down. Physical therapists told me to forget about life pre spinal cord injury. My old life was over and you must be fully autonomous. I was repeatedly told my new life requires creativity and adaptation. I could not rely on anyone else. To do so was to become less of a human being. Physical Therapists worked with me daily for months on end. The patient to physical therapist ratio was one to one. These young women, and they were almost all women, taught me lessons that have lasted a lifetime. They held me when I cried. They laughed with me and endured my sadness and rage. What they did changed my life. They made my life possible. They also forged a life long bond with those they worked with. Without them I would have taken a bad fall today.
Rehabilitation circa 1978 was primitive. It was an intense primal experience. Fear drove me. I hated rehabilitation but I knew it was a must. I needed to be taught how to care for my body to insure I was going to have the sort of life I envisioned for myself. I worked extremely hard. I listened carefully and pushed my body as hard as humanly possible. In long and difficult physical therapy sessions I worked out until my muscles quivered with exhaustion. My day began early and by dinner time I was mentally and physically spent. The goal was to make me independent, to master my activities of daily living. No time table was placed on me. I would be discharged when one and all agreed I was ready for a world that was hostile to my existence. Prepared I was.
Fast forward to today. Recently paralyzed people get mere weeks in rehabilitation. Many leave woefully unprepared for the real world. Most have physical therapy classes. A physical therapist will work with many people at the same time and direct physical therapy assistants to carryout her therapeutic rehabilitation plan. This is cost efficient. It is also negates the bond I formed with my physical therapists. Physical therapy is more than just about the body. It is a way of thinking about paralysis and disability in general. I learned anything is possible if you work hard enough. This belief system cannot be taught or absorbed in a group lesson. I am not suggesting we return to the primitive ways of the past. Spinal cord injuries, thanks to broad based medical advances at the time of injury, are far more complex and designed to limit damage. In the olden days one had a complete or incomplete injury. Today, an entire spectrum exists within spinal cord injury. No two injuries are the same. No injury is static. To be blunt the cookie cutter cost saving brand of physical therapy practiced today is ineffective. The failure to prepare men and women for life post spinal cord injury was at the forefront of my mind after I had a long chat with my friend and colleague Stephen Kuusisto. He remains deeply troubled that the premier guide dog school in the country, Guiding Eyes for the Blind has adopted to use his words "the Bain Capital model of employee management".
Kuusisto has every right to be angry and worried. There are just twelve guide dog schools in the country. All guide dog schools operate as charities. None charge their clients for the dogs who will become part of a remarkable team. By remarkable I mean empowering. Guide dog trainers do exactly what the physical therapists did for me except they are not nearly as well paid. They change lives for the better. No job could be more rewarding. I had the deepest respect for guide dog schools. Note my use of the past tense. I am not an expert about training guide dogs. Indeed, I am far from expert. But I do know what the implications are for people who are blind. I have observed the cost cutting insurance dictated approach to physical therapy. It has devastated rehabilitation and the ability for people post spinal cord injury to resume their life. The implications for blind people are more dangerous. Without experienced guide dog trainers, who will understandably leave the profession given the lack of adequate retirement plans, one can readily imagine the knowledge acquired over time is being sucked out of the guide dog schools as I write these words. Experienced trainers could justify bad pay knowing they at least had a good retirement plan. Not anymore. Who will suffer? People who are blind.
For those interested, and that should be every single person that reads my blog, please read what Kuusisto has written at his outstanding blog Planet of the Blind. Link: http://www.stephenkuusisto.com/uncategorized/whats-wrong-with-the-guide-dog-schools
Kuusisto has generously allowed me to quote his entire post "What's Wrong with the Guide Dog Schools?" below. If you are moved by my words was well Kuusisto's words please write or call the Guiding Eyes for the Blind President and CEO Thomas Planek and let them know you support guide dog trainers and object to the Bain Capital model Kuusisto and I rail against. The general phone # is 914 245-4024. One last point. The suggestion to call and complain was my idea and mine alone. Here is Kuusisto:
I did not fall because of the lessons I was taught 38 years ago. Rehabilitation circa 1978 was hard core. Rehabilitation was a long arduous process. It was in fact a form of brain washing that was in retrospect the best thing that ever happened to me. Autonomy was drummed into my brain. Never ask for help. You must be self sufficient. I was taught how to dress myself. I was taught to make transfers from wheelchair to toilet. I was taught to turn my body every two hours all night long. I did this for many years. I was taught about skin care and until 2010 had avoided a severe wound. I was taught how to pop a curb and do wheelies. I was taught how to fall to the ground and get back in my wheelchair. I was taught how to crawl without injuring myself in case my wheelchair was out of reach. I was taught how to get in and out my car. I did not use a model car as most rehabilitation units now use. I was taught how to transfer into my car in all condition (snow, rain and wind). I was taught to transfer on steep hills with an incline up and an incline down. Physical therapists told me to forget about life pre spinal cord injury. My old life was over and you must be fully autonomous. I was repeatedly told my new life requires creativity and adaptation. I could not rely on anyone else. To do so was to become less of a human being. Physical Therapists worked with me daily for months on end. The patient to physical therapist ratio was one to one. These young women, and they were almost all women, taught me lessons that have lasted a lifetime. They held me when I cried. They laughed with me and endured my sadness and rage. What they did changed my life. They made my life possible. They also forged a life long bond with those they worked with. Without them I would have taken a bad fall today.
Rehabilitation circa 1978 was primitive. It was an intense primal experience. Fear drove me. I hated rehabilitation but I knew it was a must. I needed to be taught how to care for my body to insure I was going to have the sort of life I envisioned for myself. I worked extremely hard. I listened carefully and pushed my body as hard as humanly possible. In long and difficult physical therapy sessions I worked out until my muscles quivered with exhaustion. My day began early and by dinner time I was mentally and physically spent. The goal was to make me independent, to master my activities of daily living. No time table was placed on me. I would be discharged when one and all agreed I was ready for a world that was hostile to my existence. Prepared I was.
Fast forward to today. Recently paralyzed people get mere weeks in rehabilitation. Many leave woefully unprepared for the real world. Most have physical therapy classes. A physical therapist will work with many people at the same time and direct physical therapy assistants to carryout her therapeutic rehabilitation plan. This is cost efficient. It is also negates the bond I formed with my physical therapists. Physical therapy is more than just about the body. It is a way of thinking about paralysis and disability in general. I learned anything is possible if you work hard enough. This belief system cannot be taught or absorbed in a group lesson. I am not suggesting we return to the primitive ways of the past. Spinal cord injuries, thanks to broad based medical advances at the time of injury, are far more complex and designed to limit damage. In the olden days one had a complete or incomplete injury. Today, an entire spectrum exists within spinal cord injury. No two injuries are the same. No injury is static. To be blunt the cookie cutter cost saving brand of physical therapy practiced today is ineffective. The failure to prepare men and women for life post spinal cord injury was at the forefront of my mind after I had a long chat with my friend and colleague Stephen Kuusisto. He remains deeply troubled that the premier guide dog school in the country, Guiding Eyes for the Blind has adopted to use his words "the Bain Capital model of employee management".
Kuusisto has every right to be angry and worried. There are just twelve guide dog schools in the country. All guide dog schools operate as charities. None charge their clients for the dogs who will become part of a remarkable team. By remarkable I mean empowering. Guide dog trainers do exactly what the physical therapists did for me except they are not nearly as well paid. They change lives for the better. No job could be more rewarding. I had the deepest respect for guide dog schools. Note my use of the past tense. I am not an expert about training guide dogs. Indeed, I am far from expert. But I do know what the implications are for people who are blind. I have observed the cost cutting insurance dictated approach to physical therapy. It has devastated rehabilitation and the ability for people post spinal cord injury to resume their life. The implications for blind people are more dangerous. Without experienced guide dog trainers, who will understandably leave the profession given the lack of adequate retirement plans, one can readily imagine the knowledge acquired over time is being sucked out of the guide dog schools as I write these words. Experienced trainers could justify bad pay knowing they at least had a good retirement plan. Not anymore. Who will suffer? People who are blind.
For those interested, and that should be every single person that reads my blog, please read what Kuusisto has written at his outstanding blog Planet of the Blind. Link: http://www.stephenkuusisto.com/uncategorized/whats-wrong-with-the-guide-dog-schools
Kuusisto has generously allowed me to quote his entire post "What's Wrong with the Guide Dog Schools?" below. If you are moved by my words was well Kuusisto's words please write or call the Guiding Eyes for the Blind President and CEO Thomas Planek and let them know you support guide dog trainers and object to the Bain Capital model Kuusisto and I rail against. The general phone # is 914 245-4024. One last point. The suggestion to call and complain was my idea and mine alone. Here is Kuusisto:
Its not easy to be an advocate for human rights because the engines of neo-liberalism smog the village square. I think history will show this is an age of ruinous acquiescence, a time when its easier to prefer convenience over complexity–a hint of Al Gore here–truth is always inconvenient.
Recently some of the schools that train guide dogs for the blind, non-profit agencies all, have adopted the Bain Capital model of employee management, laying off vital staff (translate “older” and “experienced” if you like) and several have chosen to reduce staff retirement benefits by shelving long standing retirement plans for 403B packages–plans designed for churches and non-profits. Almost no one can actually retire on a 403B plan–they're essentially “cafeteria” plans that allow employees to put aside money from their pay checks in a temporarily non taxable and limited investment fund.
There are roughly twelve guide dog schools in the United States and all are charities. Each breeds and trains dogs for the blind. Because 80% of the blind are unemployed (even twenty five years after the adoption of the Americans with Disabilities Act) the guide dog schools provide dogs to blind clients free of charge. The cost of a guide dog is guess-estimated to be around $40,000 per unit–that is, per finished product–a successful dog and person team. It's expensive work. Puppies must be bred, then raised until they're old enough for training at about a year and a half. Training requires 6-8 months of consistent, daily work by professional guide dog trainers who teach dogs how to navigate country roads and inner city traffic, all the while encouraging each and every dog to trust its instincts and recognize it must often think for itself and countermand its human partner's orders.
Guide dog trainers have demanding jobs: they work in rain and snow. They walk thousands of miles a year. Moreover they undergo a long and poorly paid apprenticeship with a senior trainer to master the rare skills necessary both to train exceptional dogs and work with blind people. When they finally become guide dog trainers after years of brutally hard work they're still paid rather poorly. The average guide dog trainer makes a salary roughly equivalent to the earnings of a high school teacher. But the rewards of guide dog training are great. You work with dogs, help people, and change lives for the better.
In former times a guide dog trainer could imagine having a career. Although they were poorly paid, they could count on a solid retirement plan. In general guide dog schools valued veteran employees who possessed long experience working with the blind and their dogs.
Enter neo-liberalism: “capitalism with the gloves off” as Robert W. McChesney calls it.
Two years ago “The Seeing Eye” (the oldest guide dog school in America) suddenly fired over twenty long time employees–trainers, field representatives, even a veterinarian. The fired staff didn't even have time to clean out their desks. They were simply told not to come back.
Following suit, “Guide Dogs for the Blind” a famous school in California eliminated staff. Later, after protests, employees there were reinstated.
If you're blind and travel with a guide dog you count on veteran staff: folks who know the complex and challenging circumstances of vision loss and safe mobility. Additionally you want to be assured those who work with you–support you–are being taken care of.
Now “Guiding Eyes for the Blind” –the guide dog school from which I've received three guide dogs, and where I once worked, where in fact I played a role in hiring some extraordinary people, has announced summarily, without warning, they're eliminating their retirement benefits plan in favor of a second rate 403B.
In this digital age with its “Instant Karma” public relations administrators can say almost anything. When I posted my dismay about Guiding Eyes treatment of its employees, one PR person wrote on Facebook that the new retirement plan was long studied and it was necessary to ensure that guide dogs can be provided free of charge to blind people.
The guide dog schools I've mentioned have combined endowments in the neighborhood of 700 million dollars. I'm not convinced cutting veteran staff and making it harder for people to achieve a career is necessary at all. What I am convinced of is that the justifications of neo-liberalism have become the narrative template of management in our time. Everything should be lean and mean.
The alumni of the guide dog schools can't really protest. They're not cash paying customers like college alums. Many guide dog users fear criticizing the schools will hurt them–they'll be branded as “difficult” or “disloyal” or “uppity”.
Right now I'm finishing a book about guide dog life for Simon and Schuster. I've been a loyal and upbeat spokesman for the guide dog movement for years, appearing on national TV and writing widely on the advantages of traveling with a professionally trained dog.
I fear for my friends who train the dogs. I dare to say so.
Sunday, November 9, 2014
Too Nice?
One of the very few things I do not like about my little rental home is the lack of a washing machine and dryer. I was initially worried. Last academic year when the Red Roof Inn was my home away from home I used a laundromat in East Syracuse. I was not impressed. The cleanliness was far from ideal and the machines were ancient. However the same company has a laundromat in my town. Thankfully the local laundromat is exceptionally clean and, better yet, has free wifi. I do my laundry once a week and as winter sets in will likely do laundry twice a week. I do not mind this one iota however I am careful when I do laundry. Prior to day light savings, I did laundry just before or after sunrise on Sunday. I rarely interacted with others as I was done by 7AM--and yes this was design. I continue to think of times the laundromat will be empty. Given the little college that is in town, night time treks are a bad idea. I have no interest in interacting with college students. I love college students but that love is restricted to the classroom where they are on their best behavior. Post 7AM mornings on the weekend are a bad idea--especially on Sunday as the holy rollers are likely to want to pray for me. Being an anonymous cripple takes some advanced planning, flexibility, and creativity. I have been very lucky to date. I have come across a few college students who had inhaled too much, a few men my age who were very drunk, one parent that was dreadful, and more than a few people who looked like they had a hard time scratching enough cash together to do laundry. There many people down on their luck in the Syracuse area. The poor abound in fact.
My laundry luck ran out yesterday afternoon. I had a lot of laundry--much more than usual. I put my laundry basket on my lap and it is was over flowing and stinky. Dirty clothes and towels were piled up to my neck. I can manage the double doors but it is a somewhat slower process than normal. As I get through the first set of doors a man is standing in my way in an effort to hold open the door. His timing was bad as I was half way through doorway and he really was simply acting as an obstacle. Of course this being central New York the man and his wife who prompted him to "help" is overly friendly. I politely ask that he move aside. I look at him and then his wife sitting at a nearby table. I am screwed. I have encountered Mr. & Mrs. Too Friendly and Eager to Help. I take my dirty clothes to the most distant machine and I am asked "Can I help you put the laundry in the machine?" I politely say "no", being sure to use a neutral tone and not respond with a thank you. I proceed to load the machine and I am then asked "May I help you put the money in the coin slot?" Again I reply with a flat no with the thank you absent. This exchange of questions plays out not just once but twice as I used two washing machines. I do my level best to ignore the couple who watched me like hawks hunting while riding the thermal winds. So much for a relaxing hour. As expected as the machines finish the wash cycle I am subjected to the duplicated offers of help. "Do I need help with the laundry cart? Do I need help loading the dryer? Do I need help putting the coins in the slot? Do I need help folding my clothes? Do I need help getting to the car? Do I need help with the doors?" Each and every answer was met with a simple no. No was the only word I spoke. At no point did they get the obvious message. I do not need nor do I want help. I do not want to engage and by gosh they were desperate to engage.
I suspect every person with a disability has been accosted by such do gooders. Such do gooders are not being helpful at all. In fact they have no interest in helping. What such do gooders are really doing is asserting their social and physical superiority. These social interactions are tiresome. Do not misunderstand me. I do not mind helping others and once in a while I appreciate some help. But the help I accept is based on equality and a sincere offer. I often hold doors open when it is raining. I appreciate it when a person offers to close my car door on a rainy day. I was not being offered help at the laundromat. The help the couple wanted to deliver came with certain expectations. Help was based on the assumption I was not competent. I was a dependent and inferior human being in need of charity. Once help was accepted my life was an open book for them to question. I have had this experience thousands of times and in every state of the nation. It pissed me off 38 years ago when I was first paralyzed and it pisses me off today. The only difference is I have the social skills to cut people off from asking all the intrusive and rude questions they are so eager to ask. Believe me, this couple was desperate to learn facts they would not dream of asking a person who did not use a wheelchair.
The exchange described above made me realize the hardest part of living in the Syracuse area is getting accustom to interacting with overly friendly people. I am a New York City kind of guy. I do my best to never make eye contact. I move fast and keep my eyes directed forward and down. I do not stop if humanly possible. I am a point A to point B kind of person. I am gruff and quick to cut someone off. When going up a curb cut I pick up a lot of speed and assume the person standing in my way is going to move once they get the idea I am not even thinking about slowing down. News flash to bipedal readers: lateral movement using a wheelchair is not possible. None of this goes over in certain areas of Syracuse. I cannot make it across campus with my lab Kate without an undergraduate saying something to me about the dog she or he left behind. To not engage in a brief conversation would be deemed rude. At Wegmans. the best super market in the world, employees and customers are routinely nice. I need to move much slower than I want to duplicate a typical bipedal pace. When I eat out at a restaurant I am usually asked "Where would you like to sit?" In New York City when I go a restaurant I am directed to the cripple table. The one table, usually the worst table in the house, is where all wheelchair users sit. This is not subtle and more than once I have left a New York City restaurant in disgust.
The above may sound like minor social differences but they are not. The cultural mind set in Central New York is different. I have to think differently every day. This has been by far the hardest adjustment to living out side the New York City bubble. Truth be told I miss New York City a lot. I want to be an anonymous human being in a crowded deli like Zabars; elbows out and parrying with little old ladies who use shopping carts as weapons. I want good rye bread still hot from the oven. I want New York City pizza. I want to wonder around the American Museum of Natural and Metropolitan Museum of Art. I want to ride my bike down the West Side bike trail. I want to people watch on 5th avenue as masters of the universe speed by with a cell phone surgically attached to their ear--the men in expensive business suits and women in power heels and skirts. I want to use the reading room at Columbia University Butler library. I want the hard edge of life. I like that toughness. Raw emotion instead of formulaic politeness. Ah, the thoughts that pass through your mind on a Sunday when you are vacuuming and mopping the kitchen floor and bathroom. Truth be told: I lead a solitary life I never expected and I often think of the title of Harriett McBryde Johnson's wonderful memoir Too Late to Die Young. I never imagined the life I have led and look at the sunrise and wonder daily how the hell did I end up here. Life is indeed an eternal mystery.
My laundry luck ran out yesterday afternoon. I had a lot of laundry--much more than usual. I put my laundry basket on my lap and it is was over flowing and stinky. Dirty clothes and towels were piled up to my neck. I can manage the double doors but it is a somewhat slower process than normal. As I get through the first set of doors a man is standing in my way in an effort to hold open the door. His timing was bad as I was half way through doorway and he really was simply acting as an obstacle. Of course this being central New York the man and his wife who prompted him to "help" is overly friendly. I politely ask that he move aside. I look at him and then his wife sitting at a nearby table. I am screwed. I have encountered Mr. & Mrs. Too Friendly and Eager to Help. I take my dirty clothes to the most distant machine and I am asked "Can I help you put the laundry in the machine?" I politely say "no", being sure to use a neutral tone and not respond with a thank you. I proceed to load the machine and I am then asked "May I help you put the money in the coin slot?" Again I reply with a flat no with the thank you absent. This exchange of questions plays out not just once but twice as I used two washing machines. I do my level best to ignore the couple who watched me like hawks hunting while riding the thermal winds. So much for a relaxing hour. As expected as the machines finish the wash cycle I am subjected to the duplicated offers of help. "Do I need help with the laundry cart? Do I need help loading the dryer? Do I need help putting the coins in the slot? Do I need help folding my clothes? Do I need help getting to the car? Do I need help with the doors?" Each and every answer was met with a simple no. No was the only word I spoke. At no point did they get the obvious message. I do not need nor do I want help. I do not want to engage and by gosh they were desperate to engage.
I suspect every person with a disability has been accosted by such do gooders. Such do gooders are not being helpful at all. In fact they have no interest in helping. What such do gooders are really doing is asserting their social and physical superiority. These social interactions are tiresome. Do not misunderstand me. I do not mind helping others and once in a while I appreciate some help. But the help I accept is based on equality and a sincere offer. I often hold doors open when it is raining. I appreciate it when a person offers to close my car door on a rainy day. I was not being offered help at the laundromat. The help the couple wanted to deliver came with certain expectations. Help was based on the assumption I was not competent. I was a dependent and inferior human being in need of charity. Once help was accepted my life was an open book for them to question. I have had this experience thousands of times and in every state of the nation. It pissed me off 38 years ago when I was first paralyzed and it pisses me off today. The only difference is I have the social skills to cut people off from asking all the intrusive and rude questions they are so eager to ask. Believe me, this couple was desperate to learn facts they would not dream of asking a person who did not use a wheelchair.
The exchange described above made me realize the hardest part of living in the Syracuse area is getting accustom to interacting with overly friendly people. I am a New York City kind of guy. I do my best to never make eye contact. I move fast and keep my eyes directed forward and down. I do not stop if humanly possible. I am a point A to point B kind of person. I am gruff and quick to cut someone off. When going up a curb cut I pick up a lot of speed and assume the person standing in my way is going to move once they get the idea I am not even thinking about slowing down. News flash to bipedal readers: lateral movement using a wheelchair is not possible. None of this goes over in certain areas of Syracuse. I cannot make it across campus with my lab Kate without an undergraduate saying something to me about the dog she or he left behind. To not engage in a brief conversation would be deemed rude. At Wegmans. the best super market in the world, employees and customers are routinely nice. I need to move much slower than I want to duplicate a typical bipedal pace. When I eat out at a restaurant I am usually asked "Where would you like to sit?" In New York City when I go a restaurant I am directed to the cripple table. The one table, usually the worst table in the house, is where all wheelchair users sit. This is not subtle and more than once I have left a New York City restaurant in disgust.
The above may sound like minor social differences but they are not. The cultural mind set in Central New York is different. I have to think differently every day. This has been by far the hardest adjustment to living out side the New York City bubble. Truth be told I miss New York City a lot. I want to be an anonymous human being in a crowded deli like Zabars; elbows out and parrying with little old ladies who use shopping carts as weapons. I want good rye bread still hot from the oven. I want New York City pizza. I want to wonder around the American Museum of Natural and Metropolitan Museum of Art. I want to ride my bike down the West Side bike trail. I want to people watch on 5th avenue as masters of the universe speed by with a cell phone surgically attached to their ear--the men in expensive business suits and women in power heels and skirts. I want to use the reading room at Columbia University Butler library. I want the hard edge of life. I like that toughness. Raw emotion instead of formulaic politeness. Ah, the thoughts that pass through your mind on a Sunday when you are vacuuming and mopping the kitchen floor and bathroom. Truth be told: I lead a solitary life I never expected and I often think of the title of Harriett McBryde Johnson's wonderful memoir Too Late to Die Young. I never imagined the life I have led and look at the sunrise and wonder daily how the hell did I end up here. Life is indeed an eternal mystery.
Subscribe to:
Posts (Atom)