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DHD 201 Disability Rights and Culture Weeks 9-11 Notes

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DHD 201 Disability Rights and Culture Weeks 9-11 Notes DHD 201 Disability Rights and Culture

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These are notes from weeks 9-11 of classes.
Disability Rights And Culture
Aly Patsavas
DHD, Disability, Right, Culture
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Date Created: 04/08/16
DHD Weeks 9-11 Figures Austerity and Disability Art Recap from Tuesday Austerity measures: Cuts to spending and supports (usually governmental spending and social supports) o example: the proposed cuts to Illinois Home Services Program The relationship between Neoliberalism and Ableism? Goodley, Lawthom and Runsick-Cole argue that “Neoliberalism provides the ecosystem for the nourishment of ableism” (981). What does this mean, exactly? o Set of ideas and practices that make up current economic and social policies (neoliberalism) may not directly cause ableism, but they make it possible for those ideas and practices to flourish o Provides justification for the structural oppression of disabled people Neoliberal Accounting for Disability Disability costs money o Individuals pay for those costs o Not government responsibility o If Individuals can’t pay: private corporations or charities will pick up the need o Cuts to social supports will help keep the costs down § they are high because too many people are getting too many services o Different way of accounting (1) There are other ways to account for the costs of disability Gary Arnold (and many disability studies scholars and activities) argue that cutting social services costs more money o When you cut programs like the home services program, it forces people to nursing homes o Nursing home care, on average, costs more than independent living Argument: That the cuts to community services will end up costing the state more money in healthcare and nursing care costs than the maintenance of these programs Counter argument: These programs are fully of fraud and abuse and this is the only way to eliminate that excess waste But what happens when disability doesn’t cost less? What happens to this line of argumentation when, in fact, disability does cost more? This is the heart of the questions that Goodley, Lawthom and Runswick-Cole ask at the end of their text: o What would it mean to actually change how we understand the problem: § Not just a problem of what costs more but of how we value work, care, and money? § They do not offer a solution, but merely ask how we might think of this problem differently Different way of accounting (2) Accounting through Art Figures: Liz Crow’s project o What did you learn about her project from reviewing her website? Details Disabled Artist and Scholar Liz Crow wanted to: o tell a different story about disability o call attention to a different type of “cost” (the cost of austerity measures on human beings and the lives of those impacted by these cuts). o Context of Project British Government hired private companies to perform assessments on disabled people to determine their fitness to work o ATOS company first hired o Maximus now runs the assessments o assessments (like the recalibration of need assessments in Illinois) were moving people who formerly qualified for supports and services off those services 2015 Political leaders advocating for (and promising to implement) austerity measures were (re)elected What she did Crafted 650 clay figures out of river mud Each figure represented a person “at the sharp end of austerity measures” She toured with the figures o presenting them unofficially when events on the tour were canceled due to the “too political” content Burned them and ground up the ashes while reading the stories of those figures Dispersed them back into the water on first day of the new government Accounting for Lives “the figures making visible the stark human cost of austerity and creating a talking point for members of the public to grapple with the questions raised by the work” Making visible the human as part of the equation of measuring costs (ie: not just financial) Burning of the figures represents “the firing and crushing of human aspiration,” “the bearing witness of the cairn and the dispersal and forgetting of stories of social injustice,” o according to the We Are Figures website and project description Art as Activism Liz Crow’s piece provides example of how art more broadly and disability art specifically can serve as activism o Raising awareness (about cost of austerity) o Asking difficult questions (what about the people who are most impacted by these cuts) o Reframing the issues (from one of not being able to afford supports to redistribution of resources) Video for Stewards While Crow assembled the figures, stewards (volunteers) engaged with people passing by and people online through social media Video you watched for class today was made for those Stewards o discusses values of the project o What were some of those values? Disability Culture? In class, we’ve talked about disability cultural values such as interdependence, deindividualization and one key feature of disability cultural products (that reflect disability cultural values) o direct confrontation of prejudice, discrimination, and oppression § Crow’s Figures project aims to do this § Project also recognizes shared experiences across differences • The assembling of different stories together under the same project critiquing austerity Art as Conversation Crow talks about the importance of the art as a conversation starter o to introduce people “insulated from the sharp end of austerity” to its impact o Tells the Stewards: “do not worry that you do not have all the answers. Your job is to support audiences in the process” Figures on Austerity Austerity is a policy - cut social services and reduce spending 2) Austerity is a political policy, a political choice 3) Austerity has consequences - consequences can be mild or, for some, deadly 4) Austerity equals division o -Between rich and poor Figures on Austerity 5) Austerity doesn’t work o -unless the actual goal is to cut social programs 6) Austerity is meeting resistance o -both in the UK and across the world through policies that put money into social services and through activism 7) Austerity is a choice o -but it is not the only choice o -not an issue of a lack of funds but a lack of equal distribution of funds Narratives “Former welder, Danny, aged 60, was told he was fit for work the day after he had double heart bypass surgery. He says, “I was in intensive care when my daughter came in with the letter. I was shocked. Even the consultant could not believe it.” It took another nine months for him to win on appeal” “A says, “I live in a three-bed house. I am a single mum with a 10-year old daughter. I work part time 18 hours a week and get my wages, Working Tax Credit, Child Tax Credit and Child Benefit. Me and my daughter always had a weekend away in a caravan in the summer but we couldn’t afford this year. I’ve looked for extra work but can’t fid it. We are coping at the moment but I’m worried about paying for gas over the winter” “A teenage says, “The government doesn’t see us as people, it just sees us as exam grades. The pressure on us is immense” “Although they both work, Bradley and his girlfriend struggle for money. He says, “My girlfriend and I have to go without food fairly regularly. I have begun counting calories, not to lose weight, but to try and make sure I get enough. It is difficult to describe our lives now without sensationalising. The best way to put it is like this; with the hunger, and with the way that budging money becomes something that dominates every day, poverty becomes a physical and psychological state, rather than just an economic condition” “Mark was ruled fit for work against the advice of his GP and despite having complex mental health conditions. He was left with an income of 40 pounds per week. He weighted five and a half stone when he died of starvation.” Reflection Types of Narratives Together Crow brings together: o stories of people dying o stories of everyday pressures of school o instances of “we’re making for now” o accounts of unfortunate sacrifices to holidays What does bringing these things together accomplish? Reflections on Through Deaf Eyes What did you learn or gain from this documentary? What surprised you? How does Through Deaf Eyes reflect what we have been learning thus far in this course? How does it challenge or force us to think more complexly regarding disability rights and culture? What is “Normal”? Think, Pair, Share: What is “Normal”? Think On your own, write down some of the words, ideas, or images that come to mind when you think of these terms: o Normal / The Norm o Abnormal / Deviation Pair Pair up with a classmate and discuss what words and terms you thought of. What terms did you have in common? What terms did your partner think of that you did not think of? Was there anything striking or interesting about the terms you both came up with? Share If you want, share what you discussed in your pairs with the class. The History of “Normalcy” Normal is often associated with “natural,” meaning that we take the concept of normalcy for granted as inherent, biological, ahistorical, and apolitical. However, according to Disability Studies scholar Lennard Davis, the concepts of “the norm,” “normal” and “abnormal” did not exist in American or European culture prior to the mid-1800s. The “norm” originated in the discipline of statistics. French statistician Adolphe Quetelet contributed significantly to this idea by calculating a statistical average of human qualities that formed the construct of “l’homme moyen” or “the average man.” The History of “Normalcy” Then, in late 1800s, Sir Francis Galton converted the bell curve from an “error curve” with “probable errors” to a “normal distribution” curve with “standard deviations”. Galton also split the curve into quartiles, ranking each section of the curve from the lowest to the highest. The History of “Normalcy” Those in the bottom quartile (i.e., ranked “lowest”) were targeted for elimination through eugenics (which, as discussed in the previous lecture, is the belief and practice of “improving” the quality of the human population). The lower quartile included people with disabilities, as well as criminals and people in poverty. The History of “Normalcy” As a result of these developments in science and mathematics, the concepts of “normal,” “the norm,” “deviation,” and “the ideal” became increasingly accepted and utilized in American and European culture. Rachel Cohen-Rottenberg: “The highest imperative for citizenship—and humanity—was to be “normal,” and the rights and privileges of a society became apportioned on that basis.” Normalcy in the Quest for Rights/Justice Normalcy and Human Rights The quest for “normalcy” has shaped many movements centered on group rights. Rather than challenge the concepts of “normal” and abnormal,” many oppressed groups have focused their energies and efforts on trying to assimilate and fit in with the dominant group by being seen as equally “normal.” Case Study: Deaf Culture and Cochlear Implants Entanglements of Disability, Deafness, and Normalcy Tensions exist between how deaf and hearing people view and understand deafness and normalcy. Some deaf people view deafness as a disability through a disability studies lens. o Sparrow (2005): “It remains true that deafness can result in tremendous disadvantage in this society. But as disability rights activists have argued, the key phrase…is “in this society.” Many of the “disadvantages” faced by people who are deaf turn out to have social and institutional causes and could be rectified by the way our society is organized” (p. 137). Some deaf people view deafness as a human variation, making them an ethnic/cultural minority, whose members are still “normal,” just “different.” Normalcy in Through Deaf Eyes “People need to understand that we are normal. Don’t just look at my ear. Don’t look at it as a physical handicap. We are normal, really. Yes, we do have some accommodations to be made in a society where it’s dominated by hearing people. But at the same time, if you were to come into the room and it would be full of deaf people, then you would need the accommodation too!” – Rory Osbrink, Teacher “Maybe a person can’t see, and is that normal? Maybe it is. And maybe a person walks with a bit of a limp. Perhaps that’s normal to one person and not to another. What about left-handedness? Is that abnormal or is that normal?” – Carolyn McCaskill, Professor of ASL and Deaf Studies Normalcy in “Defending Deaf Culture” Sparrow (2005): “To many it seems as though there are things that the Deaf cannot do that “normal” people can, and that these incapacities place them at a disadvantage in a normal environment regardless of any social changes we might make to accommodate the deaf….[But people who argue this are also reluctant] to single our a “normal” human body from the range of variation we currently recognize” (pp. 137-138). Sparrow is asking us to consider: o Deafness as a part of “normal” human variation. o Deafness as a “less important” mark of difference, like hair or eye color. Claims to Normalcy, Cultural Minority Status, and Rights Part of Deaf culture’s claim of normalcy is to establish them as both similar to hearing culture (i.e., part of normal human variation), as well as similar to other minority cultures. (This is somewhat contradictory, of course.) Regardless, these claims reject disability. There are many tensions present in this perspective. This viewpoint is defining disability largely through the medical model of disability, in which disability is a personal problem that needs cured or fixed. Deaf culture sees itself as different from the disability community because (1) disabled people are not traditionally seen as sharing a culture(s) (which we have challenged in this course), and (2) Deaf culture shares features with other cultural minority groups – particularly a language, ASL, which creates distinct customs, values, traditions, spaces, etc. Claims to Normalcy, Cultural Minority Status, and Rights Cochlear implants are thus criticized because (1) they suggest deafness needs to be “fixed” or “cured” rather than viewing it as cultural, (2) they may create situations in which people are not fully accepted within deaf or hearing communities, and (3) they allow medicine and the government to operate from positions of cultural superiority, rather than embracing multiculturalism. “An argument asserting the rights of minority cultures to equal respect and consideration within a multicultural society…offers the best prospect for the defense of the unique culture(s) of the deaf” (Sparrow, 2005, p. 152). Case Study: Marriage Equality Movement Normalcy and Gay Marriage “It’s Time” Campaign by GetUp! Australia o How does the video use the concept of “normalcy” to argue for the legalization of same-sex marriage? Premise of Video: Show a gay couple as similar to a heterosexual couple—everything they do is so “normal” that if you only saw one partner, you might not even know they were gay. Many efforts centered on the “right to gay marriage” campaign have used similar arguments, which sends the message to the dominant, heterosexual group, “We are just like you, and so we should have the same rights as you.” Why Seek Normalcy? The motivation to assimilate is fueled by the desire for equality or rights, but it is also a function of how oppressed groups often want to see themselves and be seen by others. According to Michael Warner (1999), in The Trouble with Normal, “Nearly everyone, it seems, wants to be normal. And who can blame them, if the alternative is being abnormal, or deviant, or not being one of the rest of us?” (p. 53). Normalization Society encourages normalization – i.e., it encourages people to strive toward normalcy. This is accomplished partially through the formation of “normalizing communities,” or dominant groups. Normalization Magolda and Ebben (2007): “Normalizing communities are based on those in power defining a cultural center and “natural order” that renders the dominant group behaviors and values acceptable while marginalizing others. Normalizing communities privilege certain individuals, activities, roles, and relationships, and portray them as normal” (p. 145). Deaf Education and the Push for Normalcy Oralism or Oralist movement that shifted Deaf education Emerged at a time in this country when large numbers immigrants coming in from Eastern Europe o Sparked fears over a loss of American Society o What is American Society? o What role does normalcy plan in understandings of American Society Oralism The Oralist movement was build on the impulse to normalize Deaf people ASL made Deaf people different, teaching them to speak would assimilate them into American Society and normalize This move cut off many Deaf people from education, community, and expression Normalization created/creates barriers o Built on an unacknowledged belief that normal is best for everyone, and desired by everyone One More Perspective Betweenity Brueggemann (2009) coined the term “betweenity” to describe the state of being “in between” and applies it to Deaf identity, culture, and language. There is not a single definition of deafness (Deaf, deaf, hard-of-hearing, hearing impaired, late-deafened, etc.). Some deaf people are oral, others use ASL, others are both. While certain deaf people may identify as disabled, many in the Deaf community do not. And even though they may not personally see themselves as disabled, it is likely that others perceive them that way and label them accordingly. In other words, many Deaf people live between solid and neat categories or classifications in terms of their identity, culture, and language. Betweenity (Continued) This betweenity is often a source of tension and discomfort. For instance, as we discussed, many Deaf people have fought against cochlear implants because they see them as “fixing” something that is not broken while simultaneously hurting Deaf identity and Deaf culture (Sparrow, 2005). But Brueggemann (2009) argues cochlear implants may transgress boundaries and perhaps lead to something opportunistic, interesting, and beautiful. Betweenity (Continued) In other words, cochlear implants may challenge both deaf and hearing people’s ideas about normalcy and force us to think beyond binaries of normal/abnormal. Brueggemann is thus hopeful Deaf identity/culture will survive in this “in between” space. Perhaps this “in between” space is also a place to challenge ideas of “normalcy” and break down binaries/dichotomies of normal/abnormal. If Time Allows… Normalization We are taught specific “norms” and encouraged to follow them. When we do not follow these norms, we are sanctioned. Examples: o Feminine or non-athletic boys are ridiculed for “throwing like a girl,” or “running like a girl” or “acting like sissies.” o People who break age norms are chastised and told to “act your age.” o Disabled people receive messages to “overcome” their disability through hard work and determination. But…is there a problem with seeking human rights through the establishment of “normalcy”? The Trouble with Normal Establishing “normalcy” as a basis for human rights is often ineffective because: Dominant groups will never accept others as “normal” because it will require them to give up power to do so, and It further oppresses other groups by excluding or alienating them and casting them as “the real deviants.” Back to Deafness/Disability Deaf culture asks us to challenge our assumptions about normalcy. This is important. However, when some Deaf people make the argument they are normal and not disabled, this implies that to be disabled is to be abnormal. At the same time, some Deaf people criticize cochlear implants because they view this technology as an attempt to make Deaf people “normal” – in other words, as similar to hearing people who use oral communication methods as possible. Again, this is a significant tension. What effect does this have on Deaf Rights/Disability Rights? (And Deaf/Disability Justice)? What does it mean to reject disability as a strategy to achieve rights? Normalcy/Oppression Back to the Case Study of the Marriage Equality Movement… Thus, the quest for normalcy and assimilation politics has shaped many movements centered on group rights while simultaneously harming others. Disability is frequently assigned to other groups as a justification for inequality (Baynton, 2001). Implications for Human Rights/Social Justice If we are to achieve human rights and social justice for marginalized groups, we must constantly (re)envision strategies to seek rights and justice in a way that considers all people rather than just some. Furthermore, these strategies should acknowledge that the problem is the concepts of normalcy/deviance. Intergroup justice is possible—but we must work together rather than against each other. Deaf Culture Through Deaf Eyes (2007) Film that explores the history and richness of Deaf Culture Features Deaf actors, poets, scholars, activists Includes history of Deaf Education and Deaf Rights Movement Disability Culture and Deaf Culture Disability Culture is not the same thing as Deaf Culture Many Deaf people do not identify as part of the disability community Deaf Culture has distinct features language poetics, movement, expressions Institutions (schools, social clubs, etc) history of oppression unique to Deafness For Class We are not debating the merits or limits of cochlear implants in this class. Reading about the debates around cochlear implants in order to learn about Deaf culture and its importance to deaf people. Difficult Questions How do we recognize the overlap between Disability Culture and Deaf Culture while recognizing the position of many in Deaf culture that it is distinct and different? Distancing of Disability Many Deaf people argue that they are not disabled and deafness should not be viewed as a disability Changing understandings of disability (as a social and cultural experience not just a medical problem) puts pressure on this distinction “Arguments about the purported rights of the Deaf to preserve their culture will most likely be perceived as perverse if we understand deafness as a disabling medical condition” (Sparrow 136). Sparrow walked us through the different belief systems and ways of valuing culture that are behind decisions about CI If Disability is a medical condition, then, for Deaf people, Deafness is not a disability But what happens if we think of disability as we have done in this class? At the very least, many disability studies scholars and disabled people we have read thus far in class complicate the idea of disability as a medical condition in need of a cure While reading Sparrow, that different should have jumped out at you. If it didn’t, take another look at the definition of disability he works with and think back to Linton and others Specificity of Experience However, there are specific things about Deaf Culture and the experience of deafness. We should not dismiss the claims of specificity made by Deaf people and Deaf Culture Something would be lost if Deaf Culture would be subsumed under Disability Culture. For this class: Deaf Culture shares some of the values of Disability Culture but recognize that they are not the same thing What are some examples of Disability Cultural values that Deaf Culture, as depicted in Through Deaf Eyes, appear to share? What role does deaf culture play in debates about cochlear implants Cochlear implants are a contentious topic in the deaf community. o argument has room for improvement Deaf culture plays a key role in the debates surrounding cochlear implants. o argument is present Cochlear implants are a contentious topic in the deaf community because they are seen to threaten deaf culture. o very good argument. The Deaf community views cochlear implants as a threat to their culture, and proponents of cochlear implants view them as important interventions largely because they do not recognize Deaf culture. o excellent argument Unit IV: Contemporary Issues in Disability Rights and Culture So far this semester, we have presented voices of disabled people and disability studies scholars who argue for seeing disability as a political issue This provides us with the leverage to see some of the bigger issues that frame how we view disability o dominant cultural beliefs o historical events and movements (from eugenics to the Disability Rights Movements) o political structures (like the rights process) that shape how people can or cannot claim rights o economic systems and contexts Economic Systems Some of the authors we read (Charlton) refers actually to political economy as a way of acknowledging the interconnectedness of political and economic systems. In what ways does the economy shape how we understand disability? Our tasks for Unit IV Explore pressing issues facing disabled people To look at these issues from multiple perspectives o Centralizing the perspectives of disabled people because these are perspectives that are often missing from the dominant discourse (popular conversations). We will explore: o Austerity o Concerns over Disability Fraud o Institutions and Nursing Homes o Violence against Disabled People Reminder: that this classroom is intended to be a space for constructive dialogue. Upcoming Event Today’s Main Question What do we do with disability when it costs money? As Rob Gould discussed with us, most accommodations are inexpensive However, some accommodations do cost money Social Security Disability Insurance costs money Healthcare for disabled people costs money How do we handle that, particularly in times of “economic crisis?” Economic Crisis What does the phrase “economic crisis” mean? What makes something a “crisis”? Crisis To call something a crisis, makes certain things possible: In public health: often mobilizes resources In political arena: often mobilizes legislation In cultural arena: often mobilizes awareness and dialogue In social arena: often mobilizes action What does it mean in the economic arena? What happens when the economy itself talked about as being in crisis? Definitions Austerity o dictionary definition of the word: sternness, severity or simplicity o Also describes: set of economic policies aimed at reducing spending § typically heard within the context of governmental spending Neoliberalism o economic, political and cultural system of beliefs characterized by privatization (of governmental resources, responsibility, etc), reduced governmental regulation (in economy, and in laws and policies) Austerity measures often part of neoliberalism Other Definitions or Concepts to clarify from reading? Limited Resources Budget Deficits: The state of Illinois currently has no budget. This means that the social services are in danger, the University is not receiving state funds, programs and agencies are being shut down. What is the stalemate? How does this happen? o No easy answer to this. Why does this matter for our class? o The focus here not on discussing solutions or saying who has the best answer o The focus for us is on what it means and how do we understand it Gary Arnold: Cuts will have devastating impact What does Arnold’s piece outline? What are the issues that he and his colleagues at Access Living are most concerned about? Community-based services Supports that allow people to live in the community Funding to hire Personal Assistant Services Programs that allow disabled people to have control over their own SSDI money o If someone lives in a nursing home, the nursing home facility receives the bulk of their money to pay for care 30,000 people in Illinois use Illinois Home Services Program o To qualify, you must go through a process called determination of need o Determination of Need Score Proposal to raise the determination of need score from 29 to 37 What does that mean? Raises the “level” of disability required to qualify for support services People who have qualified for services will suddenly lose their services with no change in their disability or impairment status o Why? o What precipitated this: Lack of resources Thinking Broader The case in Illinois is not isolated and its not only about disability and disabled people Read piece from Goodley, Lawthom, and Runswick-Cole o Cuts in the British system of Disability Living Allowance § 2,000 to 3,000 pounds for the average household • 2,899 to 4,250 US dollars § 9 billion pounds nationally • 12.7 Billion US dollars Easy to say: o This is unfair or absurd o This is necessary given the lack of overall resources Austerity and Neoliberalism as set of Ideas Neoliberalism is not just a set of economic policies, it’s a belief system that invests in the idea that those policies are the best way to solve the problem of limited resources o Who is responsible : individuals o What best course of action for dealing with limited resources: austerity measures (cuts to governmental and social support spending) Read two cases about cuts: From US and British contexts This set of beliefs is, arguably, part of a global economic system Does Austerity Work? Austerity, as it has been applied in both US and British context has lead to worsening conditions for many people o We will talk more about this on Thursday Two sets of beliefs: o Austerity measures have not worked because they have not been fully implemented. More cuts to social programs and a greater influx of money to private companies will allow these measures to work o Austerity cannot work because private companies are driven by different set of beliefs and concerns (profit and business viability) than social services (providing people access to what they need to survive and thrive) § What is actually needed is greater resources into social services not fewer In the meantime, what happens? The relationship between Neoliberalism and Ableism? Goodley, Lawthom and Runsick-Cole argue that “Neoliberalism provides the ecosystem for the nourishment of ableism” (981). What does this mean, exactly? Set of ideas and practices that make up current economic and social policies (neoliberalism) may not directly cause ableism, but they make it possible for those ideas and practices to flourish Provides justification for the structural oppression of disabled people Different way of accounting There are other ways to account for the costs of disability Gary Arnold (and many disability studies scholars and activities) argue that cutting social services costs more money o When you cut programs like the home services program, it forces people to nursing homes o Nursing home care, on average, costs more than independent living Argument: That the cuts to community services will end up costing the state more money in healthcare and nursing care costs than the maintenance of these programs Counter argument: These programs are fully of fraud and abuse and this is the only way to eliminate that excess waste But what happens when it doesn’t cost less? What happens to this line of argumentation when, in fact, disability does cost more? This is the heart of the questions that Goodley, Lawthom and Runswick-Cole ask at the end of their text: What would it mean to actually change how we understand the problem: Not just a problem of what costs more but of how we value work, care, and money? They do not offer a solution, but merely ask how we might think of this problem differently For Thursday For Thursday, you will be looking at an art project by artist and scholar Liz Crow Think about this broader context as you go through the website and read the stories there. Her project is, in some ways, a different way of accounting for limited resources. Community, Culture and 504 Why Did the Sit In Persist in San Francisco? They weren’t kicked out (enough people (HEW officials, police, etc) supported it) Support from other groups like the Black Panthers and donations from Safeway and the Health Department Media Coverage – administration did not want bad press removing them from building Culture of protest and activism in San Francisco Persistence of the protestors Good leadership Protestors were united Califano’s refusal to sign played a part Sheer numbers of the protestors Protest was peaceful Strong belief in the importance of the protest and the signing of the regulations Urgency of the change needed Community Many of those who participated in the 504 Sit In speak about the complicated feeling of joy and sadness when the Sit – In ended. Joy, Excitement, Pride that they persisted through the signing Sadness that the experience itself was over 28 Days People with disabilities living in what was essentially one floor of an office building No showers Few bathrooms People with support needs in spaces that are not their homes Numbers or Community or Both? Many people argued that it was the number of protestors in San Francisco that allowed their sit-in to persist. What, exactly, is it about the number of people that sustains a movement like the sit in? Occupying Public Space Section 504 was, in many ways, about disabled people’s access to public spaces Mandated all federally funding buildings and programs be made available to disabled people Federally-funded means funded through public funds Disabled people occupying public building not insignificant Private Subjects in Public Spaces Disabled People historically relegated to – thought to belong to – private spaces inside homes, away in institutions, prisons, hospitals all these places share the distinct feature that they are NOT PUBLIC spaces think back to the explicit banning of disabled people in public with the Ugly Laws Private Subjects/Public Spaces To have these people claim public space is a really radical act of self-claiming Using public spaces to perform private acts of care – whether washing hair in the sinks or changing catheters in the Regional Director of HEW’s office Re-claiming of public as a space that disabled people belong Group Discussion Questions Section 504 and the Sit-Ins provide us with an example of the relationship between rights, culture, and community So what have we learned? How might we characterize this relationship? Community Work We tend to remember individual policy makers, movement leaders, or even individual moments in the history of a civil rights fight. The victory of 504 was achieved because of all the work of all the hundreds of thousands of people that were involved in the advocacy and policy writing process Why is this community and group effort important to remember? Tendency to Individualize We have a tendency to individualize history and even social movements We remember Judy Heumann as the voice and leader of the 504 Sit-In, but she could not have been in front of the camera without the 60 plus people in the building. Those people could not have been in the building without the coalitional work of the Black Panthers and the food and supplies donated Individual/Overcoming Narratives The tendency to individualize successes misses the importance of community Also cannot be separated from the tendency to see disability as an individual problem that individual people overcome. By remembering the community and coalitions that made such actions possible, we are actually resisting this narrative and this tendency. Richard Scotch tell us: “Many organizations representing disabled people received a major portion of their operating expenses from various wings of HEW in the form of training grants, technical assistance contracts and funds for demonstration projects” (86). “Government officials became private consultants to advocacy groups while advocates joined staff or HEW agencies” (86). Government vs Advocates Scotch’s article reminds us that the story of the relationship between disabled people and government agencies far more complicated Government funding made possible (and to a lesser degree still does) disabled people’s organizations Key people working in Congress and the HEW offices, some of whom were disabled, were instrumental in drafting the regulations Bad vs Good Easy to romanticize the history of activism (as bad government vs good activists or vice versa). Job as students and scholars: To think beyond good/bad to ask: how and why does conflicts between groups happen How and why did the regulations take so long to be written and signed? How and why did disabled people feel the most effective strategy was direct action? Charity Model and the Regulations Mathews concerns over the inclusion of addiction as a disability covered by Section 504 “He certainly had a more-or-less charity mentality toward disabled people, not in the malevolent sense but in a paternalistic sense. He really just didn’t get the idea that these were rights and that you weren’t really talking about nice things to do for Easter Seals children. Then when we got to alcoholics and drug addicts, he really flipped out. These were obviously derelicts, and they were so far from Easter Seals children, things had truly run amok” (88). Deserving vs Undeserving The charity model allows for separation between those deserving of (rights, support, etc) and those undeserving This separation built on a power dynamic where Mathews (or anyone employing a charity model) exercises power by deciding who is worthy or deserving Rights, in theory, not something someone can decide to grant or not Charity leads to protectionism Dr. Andrew Adams, commissioner of rehabilitation services writes, “Because of the tone, the very broad scope and reach of the draft regulations, it is our view that without addition of some time-phased and comparable provisions for implementation (allowing more time for compliance), there might well be a backlash reaction against the population the law aims to benefit…” (89). Bad Subjects The activists who occupied the Federal building were, in effect, breaking the law Engaged in Direct Action: which is a strategy that uses action in the sense of protests, demonstrations, occupations, and other embodied action (versus negotiation, letter writing, petition signing, lobbying etc). 60’s and 70’s moment in US history with active protest culture Contemporary movements borrow from this history but adapt it to contemporary contexts 504 and Direct Action Charity Mentality, among other things, delayed the writing of the 504 regulations Direct Action protests by disabled people explicitly reject and upend the charity model approach to disability With all we talked about: what would you say if someone asked you why the Story of Section 504 is significant?


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