The Danger of “Me Before You”

Me Before You. I feel like I would be remiss in not covering this potent disability rights topic. There has been tremendous outcry from the disability community towards this film, in theatres now, which is a love story, if you want to call it that, between a man who uses a wheelchair and his caretaker. It is an old story, a romance between caretaker and patient, or nurse and patient, and it has happened many times in history. I am reminded of Peter Stuyvesant marrying his nurse after she cared for him when his leg was blown off by a cannon, in the seventeenth century. She cared for him for a full year, and during the course of that time, they fell in love. Peter healed, and wore a prosthetic leg afterwards, although he always had discomfort from his accident. Unlike the male protagonist in Me Before You, however, Peter went on to live his life, becoming the director-general of New Netherland, now New York City, and going down in history, his prosthetic leg apparent in many statues and paintings of him. I have never heard of anyone thinking Peter Stuyvesant was pitiful or weak because of his prosthetic leg, which is a disability. No one thought that maybe Peter should just give up and retire, or maybe even kill himself. While historic figures like Stuyvesant can be problematic, and this is not to exalt him, he is an example of a story in history that mirrors Me Before You.

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Peter Stuyvesant. {image is of a bronze statue of Peter in 17th C. clothing; a doublet and short pants. He has a skull cap over his shoulder-length,wavy hair, is resting on a walking stick, and one leg is a prosthetic. He appears strong, confident and somewhat cocky, which he was.} Poor Peter. Maybe he should just have died? What a sad burden.

In Me Before You, Will Traynor, a disabled banker, and his caretaker, Louisa “Lou” Clark, fall in love after she becomes his assistant, or caretaker, or whatever you want to call it. Of course Will is fabulously wealthy, and his family owns a castle, but he is a quadriplegic, so none of that matters, and Will wants to die. He also cannot have sex, another tragedy. Will decides to die by assisted suicide, or euthanasia, because clearly his life is just one tragic farce in which he can no longer do anything, and using a wheelchair to navigate around is a fate worse than death, and god forbid he be a continued burden on Louisa or anyone else. These are the ideas in the film, presented here with a dose of sarcasm.

For those who are unfamiliar with this trope, it is entirely too common and unfortunately is representative of dangerous ideas about disability, paralysis, and those who use wheelchairs. There are many out there who have not had any kind of considerable personal or intimate interactions with disabled people, or, in particular, a person who uses a wheelchair, at the peer level. Many people I meet have never interacted with a Deaf person before, for example, and often do not know how to treat me at first, if ever, and think things that are just astonishing about deafness. For this reason, a story like Me Before You can be very effective, as it plays into stereotypes held by those who do not experience disability, and the prevailing idea is that disability is a tragedy which prevents one from being able to live a full life. For many able-bodied people, the thought of becoming disabled is horrifying, and indeed, a fate worse than death. They believe that their lives will just stop, become meaningless, and they will be thought of only as burdens upon their families, friends and society, and they also can never have sex or a relationship. The human imagination, and a large influence on human imagination, the media, works to propel this notion rather than to dispel it, and Me Before You is just another example in a long line of ableist narratives. So is it just a fantasy, a harmless love story?

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Promotional image from Me Before You. {Image is of the smiling lead actress, looking off camera, wearing red lipstick. Picture is captioned “Push yourself. Don’t Settle. Just Live”. } Live, yes, but not if you are disabled. Then you should maybe think about dying, you total burden on humanity. 

For a story like this to resonate with able-bodied audiences, it must play to their fantasies and biases. It affirms their beliefs rather than challenges them, and unfortunately, has very real-world consequences, in particular, euthanasia of the disabled and mentally ill, which is a huge issue in disability rights. Many disabled people, myself included, are aware that our lives are not viewed as being the same and having the same value as an able-bodied person’s, and in the medical community, we are thought of as defective. When I tell able-bodied people this, they are often stunned, and find it hard to believe. Well, it’s never happened to them. They haven’t experienced it. It’s like race; you’ve got to listen to what people are telling you they experience. If you are part of the mainstream and are not marginalized, you are just not going to have the same experiences. Any marginalized identity is going to experience stigma and biases which often threaten their lives, in particular those with intersecting marginalized identities.

Within the medical model, disability is something to be cured or fixed, and if it cannot be cured or fixed, then the idea becomes that we ought to perhaps humanely put disabled people to sleep. And it happens all the time. This dangerous belief also influences homicide of disabled people, in particular children by their parents, and the resulting sympathy for the murderer over their disabled victim, because the disabled victim was a “burden” and “defective” anyway, and did not have a good quality of life.

Disabled people are murdered at very high rates, they experience abuse and homicide more than other groups. A lot of people with marginalized identities understand that the mainstream is often trying to push them out, get rid of them, or kill them, or in the case of euthanasia, get us to kill ourselves, albeit with a little help. Because if you do not have a mainstream identity, then you are devalued. And there is nothing romantic about that.

Back to Peter Stuyvesant and his nurse, Judith Bayard. When studying history during undergrad at Hunter College in Manhattan, Peter’s story was one we were made to study, as we were living in a city full of things named for him. I was struck by it at the time, and it made my imagination wander. Prior to reading about it, I was certainly familiar with “peg legs”, because as a child, often pirates in the stories I read or cartoons I watched on TV had one. However, I learned that Peter’s injury almost killed him, took a very long time to recover from, and that his prosthetic leg was uncomfortable, and often his injury flared up. His disability experience became more palpable, and I thought at the time of the loving care he received from Judith after he returned to Holland to recover. I thought the story was very romantic. The two had spent a lot of time together, must have gotten to know each other as a result, and fell in love. I wondered about that process and wanted to know more about it. After Peter recovered, he and Judith, his new wife, went to New Amsterdam,  where Peter would go on to live his life as the man he always had been; irascible, steely, energetic, powerful, and poetic. The story is not any less romantic, and Peter’s disability did nothing to fundamentally change his life or who he was, and that is because Peter’s story is real; it actually happened. It is representative of a real disabled life. Real disabled lives are worth living. It is only within fiction that they are not, fiction based upon tired notions and biases. However, these tired notions have a way of seriously influencing the lives of disabled people who are not living in the realm of fictionalized fantasy, and that is where the problem lays. Me Before You is not just stupid, it is dangerous, and will have lasting affects over the lives of those with disabilities, as it contributes to already existing ideas on the quality of our lives.

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Protesters outside a showing of Me Before You, holding posters made by disability rights organization Not Dead Yet

 

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Historic Disability Rights protest with many famous disability activists.

 

Orientalism, French Romanticism, War and Terror

Orientalism, a concept which examines the phenomenon of the west being the lens through which the east is analyzed and understood in contemporary western academic, social, artistic and political societies; reaches back to European antiquity with ancient Greece and its representations of Persia in the plays of Aeschylus. There has long been a dissemination of ideas about the east filtered through western predispositions, and the impact and consequences of this have been enormous.

Western positionality towards the east has influenced imagination and has therefor caused a significant level of unconscious perception possessed by those who do not have eastern heritage, in regards to the nature of it. The perception is unconscious because it has been largely absorbed through media, art, education and social influences over time, resulting in the existence of a collective fantasy, dreamed concurrently by a group far removed from the actuality of eastern culture and heritage. 

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Edward Said, Palestinian Literary Theoretician 1935-2003

 

 

Edward Said, a professor of history, comparative literature, and English at Columbia University developed the academic concept of Orientalism in his book by that name, published in 1978. In chapter one, Said writes: “On a visit to Beirut during the terrible civil war of 1975-1976 a French journalist wrote regretfully of the gutted downtown area that ‘it had once seemed to belong to . . . the Orient of Chateaubriand and Nerval.'” Beirut is the capitol of Lebanon. When I first started reading this chapter, I realized that I had been thinking of the East in terms of the Far East, as many Americans tend to, which Said addresses in his book. I was thinking of China and Japan, my mind sort of automatically went there. The term “orient”, I realized, is one I am familiar with, but does not really mean anything in and of itself; it is a construct, and it varies how people envision or think of it. While it does include the far east, this essay focuses on what is now known as the Middle East. 

There are so many ways in which Orientalism is pervasive and has manifested in western society, and a major area in which this phenomenon is represented is in French Romanticism. The French journalist quoted by Said in the above passage references “the Orient of Chateaubriand and Nerval.” Francois-Rene de Chateaubriand (1768-1848) was a viscount, or vicomte, which is an aristocratic title. His father was a slave trader, and the family lived in a mansion in Brittany. Chateaubriand is known, among other things, for his novella Rene, published in 1802, a semi-autobiographical work about a melancholy young man who is disillusioned with France and travels to North America to live among Native American tribes there. Supposedly, Chateaubriand lived among the Natchez during his own travels to America, although this has been disputed. It might make sense, due to his propensity to romanticize people of color and look to their cultures as an escape from his own, which he felt disenchanted by.

 

 

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French Romantic author and editor Francois-Rene de Chateaubriand

 

 

Chateaubriand was the editor of the Mercure de France, a magazine with a tradition dating back to the 17th century, and the first western publication to feature fashion. Among its pages were articles tailored to the elite, the elegant and refined, covering the latest in French artistic, literary and intellectual culture, and mentioning the names and activities of high society denizens, not unlike Vogue magazine today, which has its roots in the tradition of the Mercure.

Chateaubriand, as a leading member of the French literary scene, helped to define French Romanticism with writings about his travels to the east, which is what the French journalist in Said’s quote was referring to: “the Beirut of Chateaubriand”; the formularized theoretical enclave that exists only as a concept in collective western imagination, an incidence not started by Chateaubriand, but propelled along by him. What, exactly, is Chateaubriand’s Beirut, and Chateaubriand’s East, and did it ever exist?

France was a leading global colonizer from the 17th to 20th centuries and its territories included the Middle East, South Asia, Southeast Asia, Oceania; east, west, North and equatorial Africa, Antarctica and the Americas. During these centuries in the west, France was a leader in art and culture. Part of this colonial oppression was the extraction of certain cultural elements from what was for centuries known as the Orient; the countries of Asia, which were then reconfigured by Imperialist powers.

One way to understand the concept of Orientalism is to look at art from the era of Chateaubriand. A common theme is the Odalisque, based on the Turkish word for chambermaid, which under western interpretation became synonymous with a concubine or harem woman. Almost always a fair-skinned white woman, the Odalisque is represented reclining and presented as sexually available, an image constructed to invoke desire. The superimposing of the white, submissive, sexualized female body upon a scene effulgent with eastern architecture, the ubiquitous hookah, and the ever-present slave in the background, waiting to attend to any need the viewer may have, is representative of the superimposition of western values upon the east as a whole. The replacement of cultural values local to the region with sexual fantasies of white women and dark-skinned slaves, the creation of the Orient as a place where forbidden, hedonistic desires, free from the confines of Christianity, can become real, has nothing to do with what the countries of the east are really about. It is merely a fantasy created to serve the needs of those in power. This fantasy is not just represented in art, but in all spheres of interaction from west to east during the era of Chateaubriand and continues today.

 

 

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Jean-Auguste-Dominique Ingres Odalisque with Slave, 1842

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Grande Odalisque also by Ingres, 1814

 

Romanticization of the east continues, an historical thread that has winded its way through centuries and continues to manifest in contemporary western fetishization of eastern cultures. Another aspect to this of course, is war and violence.

While fantasies of the east may serve to support and fulfill western desires to feel cultured, empowered and sexually titillated, the supremacy inherent to these feelings has also culminated in another fantasy of the east that fulfills western ambitions: a Middle East, as this part of the world is now called, full of religious extremists who must be subdued by war and the imposition of neoliberal values.

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While eastern cultures serve to satisfy romantic notions, they ultimately must stick to that, as the only other role the Middle East can occupy in regnant western consciousness is a desert full of machine gun toting radicals who want to destroy everything that is beautiful, particularly western culture. Orientalism continues today with the denigration of Muslims and Muslim Americas, painted in yet another type of collective picture as threatening and malicious, without any culture that is of value; stone-age people who only seek to destroy and oppress. In order to maintain western neoliberal supremacy, to continue to exalt it and prove that it truly is ideal, to continue the dream that it really works, that it is so valuable others must be murdered in mass numbers in other countries, these fantasies must remain in place. Because any usurpation of such fantasies threatens not western democracy, but western racist and sexist supremacies.

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Theoretical Infographic by Kate Pollack (c) 2016, based on Said’s Orientalism. Image must be used with permission. All rights reserved.

 

 

 

“When the Area Was Redlined, We Took the American Dream With Us When We Left.” Poverty in Syracuse, NY

Stories and experiences from different groups of people are important to collect and put together in order to understand the whole of what has happened to cause such devastation in the city of Syracuse, New York, and to connect people who have been driven apart by decades of racist policies. In this article, it is not my intention to speak for anyone but myself, and in doing so I wish to contribute to dialogue about Syracuse by writing about my family’s history here, and my experiences.

Recently, a few articles, including one from the Atlantic, have been making the rounds on the internet, as Syracuse has been declared the number one city in the United States for concentrated poverty rates in its inner city among black and latino people.

I grew up in Syracuse, mostly, with some time spent also in Oregon, and now I am a student of Syracuse University after also having lived in Utica and Brooklyn. I have noticed recently  that my professors and fellow academics have been discussing the Syracuse poverty issue in emails, on social media, as well as in person.

The attention the city of Syracuse is getting, now, feels surprising to me. For so much of my childhood it seemed as if no one really knew about what happened here except my family or those who lived in the city, because they were the only ones I ever heard talk about it. And Syracuse University, well… it seemed like another universe to me. I used to think of it growing up as the castle on the hill, almost like a medieval fortress beyond highway 81, always in the distance. Certainly it was never a place I ever expected to end up. I regarded the university somewhat disdainfully, because everyone knew it was for the elite. Other than the disdain, I didn’t think about SU very much at all. It is surreal for me to experience being on the other side of the discussion now, and hearing about the issues that have tried to destroy the soul of this city, for decades, from within the university. 

I was born in Eugene, Oregon, but my parents moved back here to Syracuse, where my mother is from, when I was an infant, because her father contracted cancer. I am an only child, and our little family lived at first in Elbridge, which is in the country side near Syracuse. When I was three, my grandfather passed away, and my mother inherited his house, in which she had spent some of her teenage years growing up. It was located on Stanley Drive in the Syracuse suburb of Fairmount, in a housing division modeled after Levittown and built by Stanley Westfall. Our house belonged to Mr. Westfall, and he lived in it with his wife and children when the subdivision was being built in the 1950s and early 60s. Many years later, we found some of the plastic 1950s toys that Stanley’s children had hidden in the attic; miniature yellow cowboys and red plastic cars.

There was a neighborhood near Fairmount that my parents and I often returned to for visits, and that was the West End; the Irish and Ukrainian neighborhood, where many of our family members lived, located about five minutes from downtown in a working class area. And adjacent to that, there was the neighborhood where my mother grew up, the Near West Side. When I was a child, for about as far back as I can remember, I heard the story of what had happened to our family house on Rowland Street.

My mother was born in 1952, a first generation Scottish and second generation Irish child from an immigrant family. When you are from an immigrant family, there is a certain narrative that you may hear growing up, and for me it was about how my ancestors escaped famine and hardship in the old country to come here and toil and make a better life. Everyone worked, there was no other way about it. I remember asking my mother why her mother and grandparents came here from Scotland to live in Solvay, by way of England in the 1920s. She said that they never would have graduated above the level of maids and servants, and they never could have had a single hope of owning a house, because of the rigid class system in England and the poverty in Ireland and Scotland.  When my mother’s parents were married, they lived in the house on Rowland Street in Syracuse in the 1950s,  which my great grandparents and my grandparents all  worked to pay for, and all lived in, along with my grandfather’s brother, Edward Corbett, and his wife, Ethyl, who both paid rent. In those decades, many immigrants lived in the neighborhood. My mother spoke of Polish and Ukrainian neighbors, part of the influx of immigrants escaping occupied lands leading up to and after WW II.

“When my parents finally paid off the mortgage,” my mother would tell me as part of the oft-repeated story I heard as a child, “they threw a BIG party. It was such a big deal.” And, inevitably, her sense of pride would be followed by tears of heartbreak and despair, because my family lost that house they worked so hard for shortly after they paid it off. The area was red-lined.

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011809firescenegw photo by Gary Walts 1-18-09 Burned house at 203 Rowland St., Syracuse, NY.

My grandmother had a friend who worked at the bank, and she heard of the illegal action the bank had taken to red-line the Near West Side, so she told my grandmother of it. It is rare that anyone I tell this story to knows the meaning of red-lining, which always strikes me as odd, because to me it was absolutely a term I grew up hearing. Red lining, as it was told to me, is an illegal activity when, in essence, a bank takes a red pen and draws a circle around a neighborhood on their map and refuses to approve loans for anyone who lives there. That means no mortgage loans, no small business loans, no car loans, no college; nothing. This filled my grandparents with terror and they seemed to be acutely aware of what this meant. Because they were white, they were able to buy a house in Fairmount, and leave the old one behind.

For my mother and grandmother, this was a positive change. My mother was suddenly in a class of suburban people that did things like go to college after high school. She says her girlfriends that remained behind in the city all worked in offices upon graduating high school.

Part of the story of our old family house was accompanied by drives to look at it. My mother would take me, over the years, on a drive down to Rowland Street, which was still only about ten minutes away from our suburban house. She would relate the story to me again, of my immigrant relatives working for decades to pay it off, the party; and the red lining. And she would cry. I remember sitting in the car outside the house on Rowland Street at night, and my mother breaking into sobs that as a child, I could not understand. The house looked so different; it had been carved up into ramshackle apartments by some slumlord who didn’t love it or care for it the way my family had. The street lights were mostly out, the street was dimly lit. People were murdered there. It had become one of the most dangerous, impoverished and violent parts of Syracuse. When you look up the news for Rowland Street now, it is murder after murder.

My mother never blamed local black and latino people for the crime in her old house, or on her old street. She knew what happened, she knew that they had also lived in that area and in the nearby SouthSide and she knew that the poverty and subsequent crime was created by racism and redlining, and that some, unlike her, could not move into Stanley Westfall’s house. It was never a question, there was never a wonder why it had all happened. The only thing to do was cry. “It was like the heart had been ripped out of the street,” my mother said recently. I asked her why she thought that the street and the house had deteriorated so much, she responded,  “When you do not own, or have a stake in the place that you live…where you raise your family, you have a different outlook on the property.”

“I also think that the concept of future goals is different. If you do not feel good about yourself, where you live, what your opportunities are, you are not putting energy into where you rent.” I asked her if she thought the future goals were different when she was growing up on Rowland Street. “Yes!” she said. “It might not have been my idea of a great future, but it was a future. One where your children were doing better than you, or at least as well. Get a job, have kids, the American Dream.When the area was redlined, we took those dreams with us when we left.”

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Gothic Cottage, 19th C. South Side. Recently torn down.

The Atlantic article says that things in Syracuse have gotten much worse in the last ten years. My experience differed from my mother’s. I spent about two years going to high school at Westhill, which is where she went, located in the suburban Fairmount/Westvale area, and I got a good education, one that had not been available to me in Oregon, which is a story for another time. From there, however, I was on my own, and at age 18 moved to Utica to attend community college. I had not been sheltered up to that point, but the culture of the west coast is very different from the east. In Utica, I lived in neighborhoods very much like the one Rowland Street has become. I was somewhat used to dodging crime as a teenager, and I knew children who were addicted to drugs and all of that kind of thing, without getting too much into it, back in Eugene. But Utica involved gunfire, which I was not used to, and constant murder and arson. The problems were severe. I don’t know why, but it didn’t seem to scare or upset me as much as it probably should have. Some things certainly did, like the looks of utter hopelessness on the faces of some of the children I knew who lived on my street; I was really not much older than they were and it struck me. These children would often come and sit on the stoop with me and talk. There was also a terrifying homicide of a sixteen year old girl that occurred right around the corner; her body lay in an abandoned house for weeks; a house which I used to walk by every day on my way to the corner store. I was very bothered by that. Things I had seen were definitely upsetting in Eugene, but I did not know children who had been murdered. I also had not felt too much fear of being murdered myself, and that was certainly something that became palpable in Utica. When I was 18, I was tiny, and many people driving their cars around the area where I lived and took the bus thought I was one of the many child sexual trafficking victims (aka “prostitutes”) that worked Oneida Square. The looks on the faces of men who drove by me in their cars, leering, was truly terrifying, and I learned not to stand in one spot for too long. I worried taking the bus to campus through neighborhoods where teenagers like me were shot every week. I was worried that gunfire would hit the city bus, as happened in Syracuse very recently, to the South Ave/OCC bus, a bus that many young people take to Onondaga Community College, one that I took almost daily for about two years myself.

I mention Utica because for me it seems very similar to areas of Syracuse. It seems like the same kind of thing, only with a different history of how the crime and poverty came about. Like Syracuse, it has a concentration of abandoned houses which dot each street.

I think for a long time, I became somewhat resigned to that kind of thing, but also felt like I had to work very hard to not stay in those areas. I tried to make a go of it in Eugene as a young adult, but it was way too expensive and there were no jobs. So I moved back to Utica. I had friends there, and it felt like home. I found the old houses and the decay to be somewhat beautiful and comforting. I did not feel much hope at the time and had no idea really what I could do other than try to get by. Being poor was ok there, because everyone was. Eventually it just got too hard, and I moved back to Syracuse and tried to make a go of it there for a few years in my young twenties. It was an absolute nightmare of hardship and I had a total breakdown of my health. There was nowhere I could afford to live other than the worst areas, and I tried very hard to avoid them. Most of my friends and some of my family were falling into heroin, which again has become a serious problem here. One of my cousins was almost murdered. The crime at that point in Syracuse had spread into most areas of the city, including the old Irish neighborhood. Heroin and gunfire. I left. I went to college in New York. I saved up as much as I could and drove the moving van myself, straight to South Brooklyn.

Now I am back, going to graduate school at SU, after a few years of trying to make a go of it working here, which did nothing to lift me out of poverty or keep me off of food stamps. I got sick in New York, so I came home. New York is a hard road, but it wasn’t as grim as upstate, not for me. I didn’t see the type of horror-show, Nightmare on Elm street type bullet riddled, boarded up houses you thought only existed in Detroit or Flint, Michigan, in New York. When I moved back, I moved about two minutes away from the poorest neighborhood in the state of New York, worse than Brooklyn, worse than Bronx: the near west side.

I would wait outside in the wind and snow, in twenty degree weather outside the Civic Center in downtown Syracuse, lined up with the mothers and infants the welfare office made stand out in the cold until the church bells struck eight o’clock am, a grim reminder of the beggars we were.

I didn’t know if I would ever escape any of that. Every day, I would take the city bus through the Near West Side, marveling at the influence of Syracuse University’s Near West Side Initiative, which resulted in new side walks, probably for the first time in over thirty years, curb cuts for wheelchairs, fixing up the falling-down houses. I had, at that time, which was only a few years ago, that same feeling of hopelessness which I had had for so long. I told my best friend at the time about how scared I was that I would be stuck down there, end up in that area, so near to me, the poorest neighborhood in the state of New York. It didn’t feel very far away from my more working class area at all, and I knew my Deafness prevented me from many ways to make money.

The best I could do was a part time, $8 an hour job, even though with my New York education. When I was laid off from that job, I went to the welfare office yet again, because I was so fearful of how I would pay rent or eat on the $100 a week unemployment benefits that were offered. Attempting to get Temporary Assistance for Needy Families (aka welfare) was an almost worthless endeavor; they gave you nothing for forty days, and made you apply to twenty jobs. A man in the office said that he had trouble reading and writing and it hindered him from filling out applications, and they told him to use a dictionary. He had just gotten out of prison and state mandated rehab, and I thought to myself at the time, there is so much incentive for him to just go back into crime. There was incentive for me to become involved in it, too. It often seemed like the only way to make money.

Luckily I did not need to keep begging for scraps at the welfare office, and I got hired at Syracuse University. I made twelve dollars an hour and worked full time. It raised my standard of living a little bit, but not much. Getting accepted to graduate school at SU made me feel that I had finally managed to tether my grasp to something that would likely result in me finally, for real, being able to escape what I felt had loomed so close to me for so long.

There is no better representation of all of these decades of racial and ethnic hatred foisted upon the city of Syracuse by those in charge than the abandoned house pictured in the banner photo of the Atlantic article. A house that once was beautiful, that someone owned and lived in, and washed the outside of, and swept the sidewalk. Perhaps their elderly parents lived upstairs, and they had a job in one of the long vanished factories, factories which moved to the developing world once labor movements in Syracuse demanded and got a living wage. Or maybe they ran a local store, a neighborhood shop that didn’t primarily sell lottery tickets and cigarettes, in an age before corporate chains were allowed to take over and funnel money out of the city.

Reform is cyclical, and there always must be vigilance. The marginalized win small victories here and there, only to be horrifically quashed again by fear and hatred, violence and greed. Racist policies affect everyone, even those who make them, and they destroy cities like this one. Segregating people of color and those with disabilities, who are impoverished in high numbers, into the worst areas, areas with no resources, is a negative for the city of Syracuse and this has become evident now to others in the world, that our city is impoverished and racist. The big, beautiful houses that line the streets of every city neighborhood, the West Side, South Side, North and East sides; they’re falling to decay and there was a time when they were beautiful, and the people who lived in those houses owned them. Why shouldn’t people own their homes?  There are those who have come to blame the poor for how their lives are, ignoring the decades and centuries of oppressive policies enforced by those in power. They do not want to see anyone given “a free ride” in the form of social support programs, so social services is routinely underfunded and policed, subjecting the poor to drug tests, or refusing to help people in desperate need for 40 days, a long time when you are hungry and looking at becoming or are homeless.

So here we are. I am still hopeful, however. Out of the rubble of a vacant lot can grow a garden full of food, chipboard can be torn away and houses refurbished and built again. Industry can come back. Maybe Syracuse can be beautiful again in every area, because we have the infrastructure; we have the lovely old houses and buildings that still stand in this city, and downtown is starting to look much better. Moving forward, we cannot be racist. We cannot segregate. And we have to make housing accessible for the disabled. Discrimination and segregation have manifested in the ultimate symbol: the once beautiful, once cared for, abandoned house covered in rotting chipboard, falling to decay because of hate.

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Beautiful old houses in a West Side area neighborhood, restored.

 

 

 

 

 

 

 

 

Sometimes its OK.

Awesome new blog from my social justice friend who is also a mother! She loves elephants and works hard at her job, which we all know can be stressful. I love Mo’s reminder to enjoy the simple things.

the mo you know: pages on social justice, life and elephants

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From where I stand…things are going to be OK.

Sometimes your day doesn’t go like you planned it…you forget about an 8am meeting with the administrators at work, you have more work to do than will fit in the 4 hours that you usually work on Fridays, hell, you have more work to do than would fit in a regular, 9 hour day.

But sometimes, that’s OK.

Today I forgot a meeting. I was late. I hate being late. It ended up being OK because I’m not usually late – they were understanding. Once I got back to the office, I was supposed to go over talking points for Monday BUT I had to finish getting the Federal grant ready for signatures of alllllll the people. Of course, because I’m on a deadline, the link that I was given didn’t work. AGAIN. SO it took a whole lot longer than…

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Two Lovely Gals

Melissa

Melissa and Possum Melissa

I know it is annoying to be asked to for donations, but these are two good friends of mine and they are both having health issues.

This is Melissa. She’s so cute, just like the possum featured alongside her; it is her power animal. Melissa needs some help with dental bills so she can get a root canal, and she’s in constant pain everyday, going to work full time and dealing with her dental stuff which insurance won’t cover fully. I know how hard it is to get dental in the U.S. If you can spare, please donate! Even a dollar is good. Thank you so much. I really want Melissa to be ok, she’s a very cool lady and she’s a social justice advocate who really gets disability. Help turn Melissa into a healthy, happy possum.

https://www.gofundme.com/74f5xgas

 

madison

Madison in the hospital recently

This is Madison. She is an awesome young woman, and works as a disability advocate. She really “gets” disability, as we say in Disability Studies, and is a great help to so many people. However, Madison has serious health issues. She is on her own and there is no one to support her. I have some of the same health problems that she does, and I know how debilitating they are. Madison had surgery and needs help covering living expenses like rent and food since there were some setbacks with the surgery and her savings will not cover her recovery time. Please help if you can! Even a dollar helps.

https://www.gofundme.com/pdd9pd58

 

 

Thank you!!

Kylie Jenner and Disability Fetish

By Kate Corbett Pollack

o-KYLIE-JENNER-INTERVIEW-MAGAZINE-900

An image of Kylie Jenner sitting in a wheelchair, used on the cover of Interview magazine (December 2015), has stirred up controversy in the Disability Rights community.

This image depicts Kylie as a human love/sex doll. These dolls are life-sized, somewhat realistic representations, typically of women, made to order from various companies.  They can cost as much as $5,000-sometimes more. A wheelchair is often used by the doll’s owner to move them from place to place. Kylie’s blank stare and stiff limbs, along with her position in the wheelchair and other photos in the shoot indicate that she is posed as a Real Doll,  although there are a few fetishes represented. Kylie is wearing a black vinyl corset, a collar, and black spike heels with straps and buckles around the ankles.

Some say that in this representation Kylie is appropriating disability. I suppose that means she is using an image of disability for her own gain as a non-disabled person. That perspective and the accompanying critique of her are both valid, but what bothers me about the image is the fetishization of disability and of rape culture; namely, male-gaze sexism and objectification. The wheelchair also appears to be gold-plated, indicating that money bought this woman’s submission and sexuality. There is a combination of stereotypes and oppressive and otherwise negative aspects present.

The problem with disability fetishization is that it often rests upon the ableist idea that disabled people are weak, helpless, defenseless and need to be taken care of. In the case of a wheelchair fetish, the fetish is based upon a false premise, and the fantasy oftentimes involves the presumed helplessness of those considered “bound” or “confined” to a wheelchair by disability. What I have read on wheelchair fetishes typically involves an able-bodied person taking care of and pushing the disabled person around, because they believe that a disabled person needs them and relies on them. The fantasy cannot develop independently of ableist assumptions; moreover, these assumptions create a lot of weird, uncomfortable, and disgusting feelings for people like me.

I don’t know if you have ever used a wheelchair. I don’t mean those cumbersome, over-sized things at the hospital, I mean a real chair–like an athletic chair, as used in wheelchair basketball, for example, or an everyday chair used by many disabled people. Wheelchairs are not pathetic; they’re strong and powerful. A power chair can go over many types of terrain, even snow and ice, and can have speeds of five to ten miles per hour. Handcycles are also impressive. Have you seen Olympic athlete Tatyana McFadden? She could kick your ass. 

tatiana

Paralympic Athlete and Gold Medalist Tatyana McFadden and her hand cycle. {Image description: a woman wearing a bike helmet and a red vest over a black athletic shirt bends with her head forward over a metal handcycle. She is on a track marked with white lines. Her hands are on the wheels of the bike, two of which are in the back and one in the front, extended on a long part of the bike frame.}

Other types of disability fetishes, such as those related to d/Deaf people, are irritating because they’re based on bullshit, too. I have encountered disability fetishization from hearing people (some of whom have worked in the d/Deaf and disability communities) and it’s unsettling. Disability fetishes can range from annoying to outright violent and tend to cross easily into rape culture and territory. These representations invoke or may otherwise cause or promote feelings of real oppression. They are not pretend.

I don’t have an issue with fetishes, in general, but disability fetishes are generally not sexy. Consensual dominant/submissive role playing is one thing, but using someone’s physical, intellectual, sensory, psychiatric or emotional disability to put them (or representations of them) in a subjugated position is problematic for me, even if the disabled person consents. However, the image of Kylie is not about what people are doing in the privacy of the boudoir (or wherever else), as consenting adults. Kylie’s sexuality and image are being used for the male gaze, and the regnant, ableist hierarchy that infantilizes women and views them as powerless objects for sexual pleasure. This image was not created for, say, the lesbian community. It’s marketed towards white, middle class, cisgendered, straight men, audience members of the majority of mainstream magazines. Even mainstream women’s magazines are largely about how you can please and appeal to straight men. Most things in the media are designed for straight men. And we all know what that means:  images of bodies that are hairless, skinny, young, able-bodied and submissive with flawless complexions… the list goes on. What is designed to be sexy and appealing to straight men often repulses the rest of humanity, and feels degrading. It is also oppressive to men who do not wish to be a part of that dynamic, but feel social pressure from patriarchal society to be a certain way.

Honestly, I feel bad for Kylie. She’s 18, right? So…is she planning on going to college?  I hope so. Can Kylie please go to college and major in disability studies, women’s and gender studies, and queer studies or something? Because that would be awesome. I don’t put all of the onus for this cavalcade of prosaic effigies upon Kylie herself. I might be wrong, but I don’t think she has the background, growing up in the Kardashian clan, to fully critically dissect being represented this way, which is another problem that ties into the oppression of women. Many eighteen year old young women are starting their first year of college, and most people at that age still need to learn how to deconstruct or “unpack” what is typically taken for granted.

The image of Kylie is not shocking; rather, it’s over-played and tired. What is revolutionary, subversive, and edgy is not the same old trope of the doll-like, highly made-up, plastic lips and boobs look of a woman with a very specific body shape. There is nothing wrong with that shape, but it is the same one that is almost always used to advance the stereotypes and power dynamics discussed above. Throwing this image into a wheelchair just affirms the unimaginativeness of the photograph’s creators. Their choices betray their uninformed reality: because they cannot think of anything having to do with a wheelchair except the same old shit, and they’re still perpetuating the same shit about women’s sexuality, too.

Another problem with the passive body of Kylie Jenner as Real Doll/Paralyzed Disability Fetish Object is it perpetuates the notion that disabled people are not sexual, cannot be sexual even if they want to, do not have sex, and are not found desirable by anyone without a specific fetish. According to this point of view, they can only be objects when it comes to sex; they can’t really be involved in sexual experiences as full participants. This discourse is why so many young disabled people are never talked with or taught about sexuality growing up, because able-bodied adults assume the disabled are not sexual, or should not be sexual. These assumptions align with Kylie being represented as a submissive young woman who is bendable and modifiable to fit male desire, because women shouldn’t have sexuality independent of male control and desire, while disabled sexuality is simultaneously denied or controlled.

Just like any group of humans, a wide range of sexualities and preferences abound in disability communities, and these sexualities develop on their own trajectories, as do those of the able-bodied. They are valid and real, belong to each individual, and should be free from any oppressive hierarchy which seeks to control disabled bodies, women’s bodies, bodies of people of color, or anyone with any marginalized identities.

The image of Kylie is also one that many able-bodied people have of the “wheelchair bound” populace: not muscular, not dominant, not smart, but instead, passive, frail, without strong convictions and opinions, in need of charity, guidance, benevolence and assistance, forever “confined and bound” to the chair. The truth is, there is a spectrum of bodies in disability communities just like there is an array of sexualities.

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{Image description: Two dancers on a stage, lit in blue light in front of a blue background. Rik, in an all-black outfit, extends his body in the air, his legs and body in an angle, with one muscular arm  used to hold up his body. He looks down at the stage. Tina, behind him, is facing the backdrop, has one arm on the stage, the other arm the air, and one leg extended on the stage, and the other leg bent behind her. In the background is Rik’s empty wheelchair, which is in the left side of the frame. The blue light reflects off the rims.} Photograph by Diane Wiener.

So why don’t we encounter more of the kind of image featured above? This photograph was taken at a recent performance at a multi-layered Syracuse University event on December 1, 2015, celebrating the 25th Anniversary of the Americans with Disabilities Act, with Disability Studies author and speaker Simi Linton.  Linton and Christian von Tippelskirch’s film, Invitation to Dance, was screened during the event, which also featured an inclusive dance workshop hosted by the performers depicted in the image above (Artistic Director of Aspire Dance Company, Tina Christina-Price, and dancer Rik Daniels), and a post-film screening dance party. Dancing, genuine and sensual, is something that is really happening in the disability communities–something happening that is not about being subjugated, patronized, or objectified. In this image, the wheelchair is a tool of dance, expression, movement, and beauty.

dance4

{Image description: The two dancers, again in a closer shot to the camera, standing upon the stage which appears orange in the foreground. The backdrop is a pink starting in the lower left hand corner and turns to purple and then blue. Rik shows his muscular dancer’s frame as he begins to extend himself vertically out of his chair using his arms, which are placed upon the wheels, to do so. Tina is next to him, standing upon a folding chair, arms loosely positioned in front of her.} Photograph by Diane Wiener.

While this performance was not necessarily about disability and sexuality, but beauty and dance, it is important to understand and recognize that this dance is an honest portrayal of disability. The able-bodied mainstream did not manufacture these images to fit a bleak and dispiriting belief system that functions to facilitate oppressive continuities.

What is revolutionary and subversive? Not images like the Kylie Jenner shoot. What is revolutionary is real, and what is real is crip sexuality: powerful wheelchairs and accessible devices; a range of body types -muscular, athletic,thin, fat, anything and everything in between. Beauty need not be so narrowly defined, and women’s sexuality and disabled sexuality need not always be portrayed in catenation with some kind of abuse or control. Isn’t that boring, at the very least; aren’t we tired of that? True subversion, true edginess and creativity, are not confined by narrow constructs that have long been in place. What is truly subversive is liberation.

Stories of a Deaf Identity

FEATURED ARTICLE: SU DCC-NEWS: “Stories of a Deaf Identity”

by Kate Corbett Pollack

Originally written for the Disability Cultural Center Newsletter at Syracuse University.

A sound booth, where I spent seemingly half of my childhood

A sound booth, where I spent seemingly half of my childhood getting hearing tests.

[Names have been changed where appropriate.]

No one ever told me I was Deaf growing up. I didn’t know that I would ever be considered as such, because deaf and disabled were pejorative terms that well-meaning adults did not want associated with me. They feared I would be discriminated against and excluded from mainstream life were such labels applied. And they were probably right.

When my hearing loss was discovered, I was four years old. It was detected during a routine hearing test at my nursery school, and the word deaf was never used, at least not to me. The hearing loss was discovered when I was at the end of my nursery school career, and I was fitted with hearing aids and sent to a regular public kindergarten full of hearing children. I know now that I possess what audiologists refer to as some usable hearing. What this means is that I am able to hear the pitch and the range of sound used by the human voice at a level that other Deaf people may not. Hearing loss is complex, and on a spectrum. Just as people need different prescriptions for their glasses, people need different types of hearing devices and accommodations for their hearing loss. Because I was able to hear the human voice with hearing aids fairly well at this time, I was sent to public school and not to a residential Deaf school or put in special education.

The world before hearing aids was peaceful and beautiful; somewhat monastic. When I look back to those early years, when I was unaware of very much sound, I feel that I was myself. I was able to draw and think and read for hours uninterrupted, and I was content. I was unaware of many societal constructions, particularly regarding gender. The concept of either feeling like a boy or a girl did not occur to me. I just was, and I still feel that I just am; neither male nor female. It felt very free. My parents were not strict about upholding gender norms and the early 80s was a somewhat unisex time for children’s clothing and haircuts anyway. I could not hear television, radio, or other people’s conversations. I remember seeing many things and thinking about them and deciding for myself what they meant and were, as sound did not accompany images for me. I am grateful for this time in my life. My nursery school teacher wrote then in a progress report to my parents that I had an active imagination and was a bit too much in my own world, but otherwise there were no issues noticed regarding my hearing.

In elementary school, I sat up front in my classes and read the teacher’s lips. The faculty and staff at the school were aware that I was hearing impaired, which was the term used. I knew I was hard of hearing and that I had a hearing loss and a hearing impairment, all words that my audiologists applied to me, but I was not deaf. At school, on the playground, the word “deaf” was hurled at me as an insult by jeering boys whom I later learned to beat up, thanks to my father. I was not deaf.

As I continued into Middle School, I was still not among other students that were like me, and I had hearing friends, although my closest friends often had some kind of disability, because that is who I identified with, even if I wasn’t fully aware of and conscious of it. As a child, you just get along with whom you get along with, and that is the way it goes. I didn’t need to be able to hear very well in Middle School anyway, because the classes were so easy that I mostly skipped school. I skipped school for years and so did my best friends. We went downtown instead and hung around the city, often with people who were young adults. Just walking around all day long. I don’t think school really missed us, and we certainly didn’t miss it. I could hear my close friends because I was familiar with the timbre of their voices and how they moved their lips when they spoke. My hearing aids helped, too, but if anyone was going to be a close friend of mine, they had to be disability friendly and accommodate me, and stick up for me if people were assholes. Not that I needed a lot of help with that, but the fact that my best friends were as tough as I was really helped. They were actually much tougher than I ever was.

At this time in my life, I began to gain a reputation as a bit of a delinquent, although my teachers knew that I was smart. I was just bored in school and the streets where I lived were much more interesting and full of adventure, even if it meant having to dodge some scary situations. I had been arrested twice by age 14 and spent a day at juvenile hall in a “scared straight” type of program, because it looked like that was where I was headed. Part of that day was a class for the juvenile offenders during which a teacher asked us all what we wanted to be when we grew up. “A writer,” I said.

Because I was getting into so much trouble, my wary single father decided to put me in a private Quaker school. It wasn’t so much a private school as it was a last resort for a lot of parents, and many of my classmates had arrest records, but some were just from backgrounds where they had not been to public schools much. One of these students was named Claire. Claire was a teenager, had cerebral palsy, was deaf and used a wheelchair. Claire had spent her entire life up until that year in some type of group home where she was largely ignored and left in the corner. No one knew she was deaf until she was adopted by a caring lesbian couple when she was 13. The school was small, and we all had classes with Claire and wanted to communicate with her, so the Headmaster brought in a Deaf teacher who would teach an American Sign Language class. I was instantly interested.

I cannot recall exactly which day it was, but very shortly after joining the class, I hung around after to talk to Susan, the teacher. I told her I wore hearing aids. “Oh!” She exclaimed, “You’re Deaf!” I remember being shy and starting to say, “No, I am not…” but I could not finish the sentence because Susan had wrapped her arms around me in a giant bear hug. “Welcome,” she said. It hit me in the most powerful way, which I will never forget, what Susan meant: welcome to the Deaf community. You are appreciated and understood here. I knew then that “deaf” was no longer a bad word and for the first time in years I started to care about school.

Since Claire was in my other classes, that meant her interpreter, Maj, was also with her. So even though it wasn’t for me specifically, my classes were interpreted and I struck up a friendship with Maj. Although I benefited from sign language, my teachers other than Susan didn’t really think that I needed it. I may be remembering it wrong, but it felt like I learned sign language almost instantaneously. I remember the wonderful feeling of liberation that followed my newfound method of communication. The usual worry and strain that accompanied communicating with other people had lifted, because I could do so without talking or hearing. I believe that is why learning ASL was so easy. I absolutely loved it and it made perfect sense to me. Within a short time I was fluent and helping Maj to teach ASL classes at her house.

Unfortunately, life continued to be very hard in almost every other way, and I fell into a serious depression. I ended up being sent by my father to live in Syracuse with my mother. The high school I went to luckily had a Deaf program and I had interpreters in class, and the school was actually challenging. It was hard, however, for me to maintain my Deaf identity after graduating high school. I needed a job, my community college did not have a disability services office, and surviving and getting by became more of a priority for many years. I began to forget sign language. No one I knew used it; teachers didn’t know it, jobs and medical settings never offered interpreters and I didn’t know that I had a right to them anyway. I went through many very hard years and the stress negatively impacted my health. I struggled through undergrad in New York City without accommodations, but I still got high grades because of how hard I tried, even though this often led to me being hospitalized from stress and illness. This was a difficult stage for me and is a story for another time, perhaps.

It wasn’t until I started graduate school at Syracuse University that I began to reclaim my Deaf identity. The Disability Cultural Center at Syracuse University and its director, Diane Wiener, are the reasons that I was able to once again find the Deaf world, as was Professor Wendy Harbour (now at AHEAD) and others in Disability Studies and the School of Education. I was not sure how to transition from living as a hearing person, relying on my hearing aids, back to having a Deaf identity. I was also not sure how other Deaf people would feel about me; if I was “really” Deaf any more. I was nervous about it and worried that I could not go back, but no one ever treated me like I was not really Deaf. The Deaf people I met all were exceedingly aware of how many of us grow up being forced to hear and speak, constantly going to audiologists, taking years of speech therapy and not having interpreters or being taught to sign. It wasn’t just me.

I know now that there are many ways to be a Deaf person. I capitalize the D because that indicates that I am culturally Deaf and that I speak sign language and I identify as Deaf. I have Deaf friends and professors and colleagues. When the small d is used, that refers to a more medical model of deafness, deafness as a diagnosis, not an identity. That was how I had been defined growing up, as having a medical impairment that required constant audiology, therapy and hearing tests. There were teams of people working to make me into a hearing person as much as they could. When I speak aloud today, years of speech therapy go to work and I am always conscious of how I am mouthing my words and moving my tongue. My parents did not have any experience with Deaf children and they too learned about it through the medical model of disability. My parents, like many parents of disabled children, felt very concerned and wanted what was best for me. I believe that a Disability Studies model should be used to educate parents and children about disability so it won’t seem so frightening, as if a disabled child should be made as close to an able-bodied child as possible. Being unable to hear like hearing people is not a bad thing. The feeling of those early years during which I could not hear is starting to return to me. I feel more like myself, not someone who is being stretched and pulled to fit some kind of social model of an acceptable human. I do not anticipate that I will have to leave my Deaf identity behind again and I hope that it never happens. There are many ways to be Deaf, as I said. My story is one example of a Deaf life. Yes, many of us can speak, yes some of us can often hear more than you would think. And, I have met Deaf people who do not speak aloud, and do not have hearing very much at all. I have met Deaf people who wear hearing aids and speak aloud. I have met people who only use sign. I have met people with my level of hearing loss who never wore hearing aids growing up at all and do not want them. Some people use Cochlear Implants. Some wear hearing aids, and there are many types of those. Sometimes I wear hearing aids and often I do not. There is no real way to define Deafness for someone else. We are allowed to have differing identities and to claim those identities for ourselves.