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People with Disabilities: An Invisible CommunitybyBenjamin Barnett-Perry
In 1867, San Francisco passed the nation's first "Ugly Law," which was used to prohibit "street begging", specifically by people who were, in the words of the law makers, "diseased, maimed, mutilated, or in any way deformed" from being seen in public. In her book, The Ugly Laws, Susan M. Schweik explains that the law was used as a blueprint for similar legislation throughout major cities in the Western, Midwest, and Eastern parts of the United States and had a detrimental effect on people with both physical and mental disabilities. 1 These laws were used to marginalize people with disabilities, rendering them invisible.
This marginalization was a result of science and industry's push towards efficiency. 2 The ideas that followed laid the groundwork for special education and the parallel education system in which I work. In many ways being labeled as different has led to the creation of a polarization of visibility.
Disability has often been surrounded by the notion of (in)visibility. Societal constructs place people with disabilities, and more specifically "severe" disabilities in categories of dependence and uselessness. Much of this comes from the norms of our built environments and societal hierarchy. Words like "cripple", "handicapped" and even "disabled" only promote these thoughts of separation and inferiority. Physical access is limited in many parts of the country and as a result, people with disabilities are unable to engage with the built environment as efficiently as an able-bodied person can. This lack of physical accessibility only compounds itself to envelope a larger lack of accessibility in the emotional, economic and social realms. If people with disabilities are restricted from engaging in the built world physically, their ability to feel a sense of community, belonging, and acceptance is compromised.
Though the Bay Area of California was the first place to adopt a discriminatory law against people with disabilities, much of the groundbreaking legislation and work towards independence and social equality for people with disabilities occurred there as well. The Bay Area is rich with disability history and has become a Mecca for adherents of the independent living movement and the push for equality for people with disabilities. Activists like Ed Roberts spearheaded this effort towards greater independence for everyone. These efforts have resulted in changing attitudes as well as changing cityscapes. This geographic region has, more than any other in the country, pushed for greater visibility to a largely invisible people.
"Society would accept my experience as "disability culture" which would in turn be accepted as part of "human diversity". There would be respectful curiosity about what I have learned from my differences that I could teach society. In such a world, no one would mind being called disabled. Being unable to do something the way most people do it would not be seen as something bad that needed curing. It would be seen as just a difference." – Carol Gill describing her ideal world 3
The majority of my students are affected by the stigma of needing extra help and being separated from their peers who are often seen by my students as superior. My students only see me for one period, and yet many still feel ashamed that they are separated from the general education population on the basis of their differences. There are other special education classes at my school in which students are separated from the general education population anywhere from 50% of their day to the entirety of it. This construct affects school culture in many ways, but most visibly it attaches a sense of inferiority to special education students in the eyes of the other students in the school. This sequestration establishes, in the brains of the general education population, the precedent that students with disabilities should be treated differently. This is a dangerous precedent as it sets the stage for all subsequent stages of life in which the general education population will have to interact with people with disabilities.
Disability is a social justice issue and much of the humanities curriculum at my school is centered on exploring social justice for a variety of marginalized populations. Within the constructs of society as we know it (much like the construct of our educational system), people with disabilities often lack access or are unable to engage in activities people without disabilities take for granted. Rather than pushing for change in our societal constructs, many people have assumed that members of the disabled community do not want to, or are unable to work or engage in society. This is certainly the case not only with my students, but with all special education students at my school. Much of the non-disabled population holds the belief that people with disabilities should not engage in society like the rest of the population, often being perceived as inferior or less able. This thinking systematically renders students with disabilities invisible and keeps them that way, as the general education students doing the rendering are never taught differently.
The first objective of this curriculum is to frame disability as a social justice issue. This will be achieved through a comparison of the medical model of disability, currently accepted by the majority of mainstream society, and the human centered social minority model that has been adopted by disability rights activists. Because of the widespread acceptance of the medical model most students don't recognize how unjust the segregation of their disabled peers is. Students with disabilities are invisible to the general education population because policy makers have arranged the social and physical structures in such a way that reinforces an unequal and unjust hierarchy. The objective is to dispel the idea of normative hierarchy by reframing for students what it currently means to have access in our educational system and discuss what equal access for all students should mean and look like. To teach young people that it is not the student who is inadequate to perform the task in a particular environment, but that in fact the environment is, because of its lack of accessibility and malleability, an inadequate environment for that student to be successful. To convince them that there is an environment that exists, though it is not yet visible, in which students with disabilities could achieve alongside non-disabled peers. The goal is for students to begin thinking about how we can alter environments to accommodate people rather than how to change people to fit within an environment.
This abstract concept will be best illustrated to the student body through physical examples of built environments and the struggle people with disabilities have in navigating such an environment. Ed Roberts, a quadriplegic activist and student at the University of California Berkeley in the 1960's is the quintessence of someone that disproved the medical model. My second objective is for students to learn about Ed Roberts and the robust, exciting, and largely unknown disability rights movement that occurred in the 1960's in nearby Berkeley. The disability community represents the largest minority in the United States of which 20% of the country is a member, yet their struggle and history is non-existent in public education. 4 My hope in teaching this material is not only to give students a concrete example of someone who was successful in navigating both the built and social environments when they were altered in order to accommodate him, and how that success improved not only his life, but the lives of everyone in the community.
My students often need accommodations or modifications to the educational, social, behavioral, emotional, or physical environment. As a special education teacher I hope to teach them that if they encounter an obstacle that they are unable to overcome because of their disability, they need to speak up for what accommodations and modifications need to be put in place in order for them to overcome. To do this they need to become comfortable with their disability. This comfort will allow them to explore the limitations it brings. Students can then explore what their environment can provide to help bypass or overcome those limitations and allow them to stay abreast to the rest of the population. Studies show that students that understand their disabilities are more comfortable speaking up for what they need. 5 Ed Roberts was the embodiment of self-advocacy and he felt that it was of the utmost importance to the disability community. 6 I want my students to learn from Ed's story, just how powerful self-advocacy and self-determination can be.
Out of the fog of the battle for disability rights and their social justice comes a new type of built environment that exemplifies the independent living movement. Aligned with the social minority model this built environment is designed not for the norm, but to include as many of the outliers as possible. 7 This architectural and design movement is called Universal Design, and the thought behind it is that structures and objects built for people to interact with or within should be accessible to as many people as possible. 8 In most of this country's built environment there are within each city, two cities. One of these cities is visible to everyone. The other is only visible to those that are unable to navigate the first. This second city is full of barriers and restrictions to those aware of its existence. This city is invisible to the majority of the population and so it continues to thwart those who can see it. Universal design seeks to remove from this invisible city, the obstacles that exist for people who deviate from the norm, and to recreate an inclusive environment that allows for the greatest accessibility without sacrificing aesthetics. The Ed Roberts Campus is the perfect illustration of this concept. I would like to highlight for students the subtleties that make the Ed Robert campus such an inclusive piece of architecture, and push them to think about how this concept of inclusion could be applied to other parts of society.
By contrasting the social and physical structures that were in place before the disability rights movement in with the physical and social structure that is the Ed Roberts Campus I hope to illustrate how effective and beneficial this alternative model is to society. This will lead to more abstract conversations about the non-physical social structures that exist in communities throughout the country and the how applying a universal design like concept can make communities academically, socially, and emotionally accessible to those who deviate from the norm.
In 2011, California Governor Jerry Brown signed the FAIR Education Act into law. This Act mandates the inclusion of the accomplishments of people with disabilities, among others, into California textbooks and social studies curriculum. 9 Apart from a unit in an elective Psychology class, no disabilities curriculum is currently taught at my school. This unit could be used by any of the humanities teachers, or even team taught, integrating students with a wide variety of disabilities. This curriculum will be a jumping off point, from which I hope to team up with general education teachers as well as local disability rights advocates to create a broader and more in-depth curriculum using this document as the centerpiece. It is important that this curriculum promote self-advocacy to my students and assure them that it is not they who need fixing. Just as important if not more is the opportunity to enlighten the general education population about the social justice involved in this movement. Many general education students have not had the opportunity to think this way about disability.
Accessibility is an issue that separates the visible city that the majority of the population lives in from the invisible city; a city infinitely more unnavigable, and one people with disabilities often face. The interesting thing about this invisible city is that for most of us, the temporarily-abled, this city is difficult to see until for one reason or another we become a part of this minority population. Only then do we question its presence and why others cannot see it for what it is. This invisible city does not only exist in the physical realm, but in the social, emotional, economic and so on. The only way to bring this invisible city into focus is to bring awareness to its presence. The past has shown that education is a valuable tool for opening people's eyes to inequalities and my hope with this unit is to begin that process with students so that all students, with and without disabilities, can work towards building a city that is visible to everyone.
Special education students throughout this country and the world are separated from the general education population based on notions of norms; be they social, educational, or behavioral. Because of this separation my students and the other pockets of special education students at my school have been systematically cut off from the "normal" population of the student body, thus rendering them invisible. This sequestration also results in the creation of a segregated school affecting both the majority and minority populations in a variety of ways, all detrimental to their educational, social, emotional, and behavioral health. Just as special education students begin to question their self-worth and have their apparent inferiority reinforced by tests, grades, and separate classes, so too does the general education population learn about their educational, behavioral, and social superiority to their disabled peers, a relationship that continues after matriculation. The special education department and our school administration have been working to move towards a more inclusive environment, however ideological changes from the district, state and federal levels are essential to the continued success of this campaign.
Whether students choose to pursue higher education or transition right into the workplace these learned hierarchies based on norms carry over into adulthood. If young people are accustomed to a minority group of students being sequestered away and made invisible, they assume that that group isn't meant to be visible, and that they should continue to be isolated from "normal" people in all aspects of society. If a minority group of people is seen as inferior throughout adolescence that person is far less likely to be given the chance to be successful in the world of higher education or employment.
The majority of students are unfortunately unfamiliar with the concept of the two contrasting models this unit will investigate. There has been a steady push from disability rights activists to work towards moving away from the medical model in which homogeneity and "normal" dictate the way a person must interact with society. Activists are advocating for a model in which society and the built environment bend to fit the needs of people with disabilities. It aims to decrease the importance of normal and average, and in turn decrease the stigma that comes along with not fitting in.
My students, all of whom qualify for special education, have been impacted by the disability rights movement, yet know nothing of the history that lies just to the north of them and to a larger extent across the Bay. The life of Activist Ed Roberts and section 504 of the Rehabilitation Act of 1973, have made a deep impact on this country's education system and one of the goals of this curriculum is to illustrate to students that it did not come easily; most of the legislation only passed through hard-fought battles.
Almost all of the students I teach are college bound, and when they reach college the accommodations and services they are currently receiving will cease. More importantly they will not have someone like me who checks in with them to make sure they are on track with all of their classes and are receiving the accommodations to which they are entitled. These students need to become comfortable with advocating and speaking up for their needs; greater success will come from being self-advocates and self-directed learners. By asking students to study a movement in which success came after people with disabilities stood up for what they needed from schools, workplaces, and society at large, I hope to impart unto my students the confidence to stand up for injustices and unequal treatment of people with disabilities.
Armed with self-advocacy and self-direction these students will in turn become more confident and as a result of that confidence, more successful in both post-secondary school and beyond. 10 Studying this material will not only help their confidence but I hope will afford them the opportunity to join a welcoming and increasingly influential community towards further change if they so choose. There is also the possibility for students to enact change on our own campus. This effort could be increased greatly with the possibility of this curriculum being taught to the general education population.
Normal and the birth of the deviant
Normal is a relatively recent concept. The word normal, as we think of it, only entered the English language around 1840. 11 It was preceded by the concept of the ideal. This Grecian concept maintained that a person could have some ideal traits, but could never be completely ideal. The only beings seen as ideal were the gods. By these standards everyone is disabled to an extent, no one is perfect. It was not until industrialization and its subsequent byproduct, statistics, that different slices of humanity (politics, health, etc.) began to be measured. The result of these measurements was the creation of the average person, and the notion of the norm, or normal, which was used to calculate and ensure steady production in industry. When measuring swathes of a population, the norm dictates that the majority of a population should fall into the middle of the bell curve and those who are outliers or "deviate" from the norm are, in the case of the disabled, labeled deviants. This idea was created and pursued in the name of efficiency, at a time when the success of industry hinged upon it. 12
Many of the early statisticians were eugenicists, a pseudoscience based on Charles Darwin's theory of evolution. After statisticians calculated the norm, they set about working on curing, fixing and improving the outliers, those who deviate from that norm; the disabled deviants. The goal then, of the eugenicists, was to norm the outliers and create a more standardized society.
The view that with the help of the medical community a subgroup of people can move from the outskirts of a bell curve towards normalcy is referred to in disability studies as the medical model. Within this model, people who are unable to fit into the constructs of society neatly, a society largely created for the average human, need to be "fixed" in order for them to do so. It is interesting to note that the ideas of vocational rehabilitation, special education, and social welfare are based on this model. 13 As a special education teacher my job is to push my "deviant" students towards the center of the bell.
Within this system, the students I teach, marginalized outliers, are either made invisible by the system into which they do not fit snugly, or are illuminated and focused on, as if upon an examination table. These students are singled out and thrown into the spotlight in society's attempts to mend them. When this spotlight is thrust upon them many of the students I teach often prefer the invisibility of quietly disengaging to undergoing whatever treatment has been assigned to correct them.
Some of my students have successfully moved from special education to the general education population and have relished the notion of being out of the spotlight, singled out as inferior or abnormal. Too often, when this transition occurs the celebration is not for their improved skills or self-advocacy, but for their transcendence from abnormality to the mass of the general population. The invisibility they seek is not that of a marginalized outlier, but that of someone in the norm who isn't noticed for the masses they resemble. The medical model that my students are forced to navigate through is flawed on many levels, specifically as it relates to the transition from the secondary school to society at large, and the unfortunate stigma they carry with them through this progression. This discrimination is unlikely to end anytime soon, as this concept of normal dictates the notions of inferiority and superiority that are engrained into our culture.
As a result of the stigma that came with being "abnormal", families of people with disabilities in the early 20 th century began to feel ashamed and embarrassed to have an offspring or family member with such a condition. As a result, these people were hidden away from society at home, often sequestered in a backroom where there was the least opportunity for visibility. 14 This act, preventing the disabled person from engaging in education or vocation, only served to lend fuel to the argument that people with disabilities were unable to navigate or exist in modern society. I have unfortunately come in contact with many parents that limit their children based on preconceived notions they likely learned growing up in the same system. These students are frequently reminded by their parents that they do not fit snugly within the system and that they are not working hard enough to achieve normalcy.
Much like my students, if these people with disabilities in the early 20 th century were not able to make progress towards the center of the bell they were deemed unproductive and assigned professional supervision. This supervision was enlisted in order to move a group of people towards "normalcy," however when professionals failed to fit these people into the mold, the eugenicists called for euthanasia as the only answer, that it violated the laws of nature to keep alive these "feebleminded" and otherwise disabled people, lest they progenerate. Not only was the call made for their extermination, but they were blamed for social problems, such as poverty, crime and vice. 15
When the eugenicists' call for a cull of the disability community fell through, sterilization became the next best option. Most of the states in this country went on to pass sterilization statutes that went into effect for the "unfit". Due to lack of sufficient assimilation on the part of many people with disabilities, in addition to sterilization some were permanently sequestered and others were segregated. With the notion of permanent sequestration the era of institutionalization began and did not begin to cease until the late 1950's. 16 One of the biggest reasons for the cessation was the growing strength and numbers of disability rights groups and advocates; and though the movement did not start with him, Ed Roberts has embodied the struggle and the fight of the disability rights movement.
Ed Roberts and the Disability Rights Movement
"We tried cripples, they don't work." These are the words uttered to Ed Roberts by the administration at the University California Berkeley in 1962. 17 This did not stop Roberts, who had become severely disabled from polio at age 14. Roberts sued Berkeley and won his right to attend the University as their first "severely" disabled student. The same semester James Meredith, after winning a similar lawsuit, walked through the doors of the University of Mississippi as the first black student to ever attend. 18
Because of Roberts' disability, he had to sleep in an 800 pound iron lung. As a result, the University decided to house him in Cowell Hospital, the Berkeley infirmary. Roberts was attended to by orderlies who decided to take the position as an alternative to serving in the military. Other quadriplegics followed suit and they all lived on the third floor of the hospital. The atmosphere at Berkeley during this time was electrified. Activists fighting for a variety of causes mingled and exchanged ideas with one another, and Roberts was no different. He felt that the injustice and segregation that he dealt with as a disabled person was connected to the other groups who were fighting for equality. The friendships he made with other activists paired with late night discussions in Cowell about their place in society lead Roberts and some of the other quadriplegics to get involved in the activism that was so prominent on campus. 19
A former college advisor invited Roberts to submit a proposal to a program that dealt with minority groups on college campuses. She approached Roberts because he had always advocated the disabled were just that. After receiving funding, the new minority group comprised of students with disabilities became known as the Disabled Student Program. The program dealt with a wide variety of student needs such as wheel chair repair, accessible housing, and attendant care. 20 This program also funded the creation and support of the Rolling Quads, which strove to make wheelchairs and their users visible within the community. The Rolling Quads worked towards independence above all else and to do this they pressured the city to bend and change to accommodate them. 21
Invigorated by their new-found independence the Rolling Quads moved out of the hospital and into the community. Lead by Roberts, the group founded the Center for Independent Living, which was run by and for people with disabilities. Independence was the common ideal that Roberts embodied throughout his life. He felt it inextricably linked to a person's feeling of self-worth, and essential to the greatest extent possible. There are now hundreds of Centers for Independent Living all over the world, offering services for people with disabilities that range from legal assistance, to counseling, to training, and help with navigating employment. 22 As a result of this independence and the influence of Roberts and the CIL people with disabilities quickly and easily integrated into the Berkeley community. This inclusion into the broader community prompted the New York Times to refer to Berkeley as "Mecca for the handicapped." 23
The movement gained a foothold and Roberts alongside the Rolling Quads helped to lobby legislators for the first curb cut in the country, located on the corner of Bancroft Way and Telegraph Avenue. Roberts and company worked hard to convince the powers that be that accommodations like these benefit everyone, not just those who use wheelchairs. 24
Roberts earned both a bachelors and masters degree from Berkeley, yet people still struggled to separate his intellectual ability from his physical. This was not the case for Governor Jerry Brown. When Brown was elected governor of California in 1975, he tapped Roberts for the position of state director of the Department of Rehabilitation, an agency that in 1962 had refused Roberts' services, citing that he was "too disabled to work". 25 Brown didn't seem to question Roberts' ability to perform the tasks assigned to the position even going to Roberts directly with any disability questions he had. During his eight year tenure as director of the DoR Roberts established Independent living centers in every county in California and worked tirelessly to help people with disabilities advocate for their needs and rights. 26
Roberts left his position as Director to cofound the World Institute on Disability with fellow activist Judith Heumann in 1983. The WID was and still is a kind of think tank dedicated to improved independence and quality of life for people with disabilities worldwide. Roberts traveled the world meeting with policy makers and corporations as well as a variety of organizations to raise awareness of the issues facing the disability community. 27
Much of Roberts' life was dedicated to the idea that all people should have the opportunity to live as independently as they are able and should be given the support to do so. Everyone needs help; only the amounts and areas of need differ. With independence as the end goal, Roberts pushed the disability community to advocate for what they needed in order to achieve it. This self-advocacy is the key component that helped disability rights get where it is today. Because it is such a powerful tool it is one that I relentlessly impart to my students. If students aren't taught to speak up for their rights and the rights of others this forward momentum will cease.
Roberts died in Berkeley California of cardiac arrest in 1995. He was 56 years old. 28 Because of Roberts' many contributions to the disability rights movement, the city of Berkeley chose to memorialize him. When tasked with the creation of something to commemorate Roberts, representatives from the city and disability community set to work brainstorming. Ideas for commemorative stamps and sculptures were shot down by the city who said to think bigger. The result of this big thinking was the conception and realization of the Ed Roberts Campus: a building designed to showcase the concept of universal design and to accentuate the visibility of people with disabilities. 29
Universal Design and the ERC
"Why aren't people with disabilities a source of reassurance to the general public that although life is unpredictable and circumstances may be unfavorable, versatility and adaptation are possible; they're built into the coding of human beings?" – John Hockenberry 30
The disability rights movement ushered in new thoughts about the built environment and the many ways people navigate within these spaces. The name for this new concept, Universal Design, was coined by Ronald Mace, who founded and directed the Center for Universal Design at the University of North Carolina. 31 This definition has evolved and morphed within the different organizations that have popped up to embrace this concept. The Center for Inclusive Design and Environmental Access developed the most prominent iteration of Mace's original idea: "Universal design is a process that enables and empowers a diverse population by improving human performance, health, wellness and social participation." 32 Along with this working definition IDeA Center developed eight goals that correspond to measurable outcomes:
1. Body fit—accommodating a wide range of body sizes and abilities;
2. Comfort—keeping demands within desirable limits of body function and perception;
3. Awareness—insuring that critical information for use is easily perceived;
4. Understanding—making methods of operation and use intuitive, clear, and unambiguous;
5. Wellness—contributing to health promotion, avoidance of disease, and prevention of injury;
6. Social integration—treating all groups with dignity and respect;
7. Personalization—incorporating opportunities for choice and the expression of individual preferences; and,
8. Appropriateness—respecting and reinforcing cultural values and the social and environmental context of any design project. 33
The notion of designing something that is inclusive to as many people as possible is a far cry from the medical model that dominates the architectural world. One of the best examples of this radical design is Berkeley's Ed Roberts Campus.
The Ed Roberts Campus is located directly above the Ashby BART station in Berkeley, California. This is significant because of the hard fought battles disability rights advocates went through to gain access to transportation in the Bay Area, specifically on the BART train. Housed within the Campus are seven disability service providers including two Roberts started: the Center for Independent Living and the World Institute on Disability. 34
Upon exiting the elevator from the train you are faced with an impressive two story glass façade that is as symbolic as it is eye-catching. Throughout history people with disabilities have been hidden away and forced to use alterative entrances, appending a shameful connotation to their differences. Institutions designed to assist and benefit people with disabilities have often been built in a windowless and sterile way so as to hide their clients from the unnavigable world and the world from having to interact with their clients. This forced invisibility is confronted at the ERC when people who come up from the BART station and see people of all abilities navigating this built environment with pride and shamelessness. Commenting on the façade Bill Leddy, architect and owner of the architecture firm that built the ERC feels a sense of pride knowing that "this building serves folks who spent much of their lives going in the back doors of buildings and feeling like second-class citizens." 35 This type of open design seeks to integrate the building and its wide variety of users to the community in which it is placed.
Upon walking through the automatic doors, the next visually dynamic piece of architecture cannot be missed. A huge, red helical ramp that winds its way to the second floor is the centerpiece of the ERC. This is another symbolic choice, as this particular category of gateway to accessibility is often hidden away and thought of as an eyesore. The ramp is 56 feet in diameter and suspended from cables. The sides are made of bright red resin paneling derived from milk cartons, so it is impossible to miss. 36 A huge skylight sits above the ramp. This natural spotlight assures that if the giant red ramp doesn't bring the public's attention to the users of the ERC, it will. The massive light source also cuts down on costs, making the design environmentally friendly and with the help of the moon, causes the red resin paneling to glow at night drawing the eye of any passersby.
The ramp is not only an impressive sight, it also solves a problem that many ambulatory people rarely think about. The seven foot wide ramp allows two wheelchair users to traverse it side by side. In most situations pairs of people, be they two wheelchair users or a single wheelchair user and an ambulatory person are forced to suspend their conversation when confronted with the average ramp, and in the case of two wheelchair users, ascend or descend to their destination single file. Pairs consisting of a wheelchair user and an ambulatory person are forced to choose to continue single file or separate, one taking the stairs, the other the ramp, highlighting their status within society and stigmatizing the person responsible for the separation and suspension of conversation. 37
The floor of the ERC both inside and out front is composed of multicolored concrete. The subtle differences in color help to assist people who have low vision in navigating the space. This concept is taken even further when one examines the inconspicuous texture of the different colored concrete slabs. Dmitri Belser, the President of the ERC and Executive Director of the Center for Accessible Technologies, which is housed in the center explains that when designing the ERC a variety of disabilities had to be taken into account, especially when designing the forecourt to the Campus. People with visual impairments, who, like Belser use a white cane to navigate, have difficulty with wide open spaces and curvature, preferring instead walls and angles that can be easily followed. Belser explained that it would have been best for people with visual impairment to have rows of planters or some other barrier-like structure to lead them to the entrance of the center. Barriers and sharp angles of this kind however, pose problems for wheelchair users who prefer the wide open spaces and arcing curvature through which they can most efficiently get to their destination. The solution was to texturize portions of the concrete to create a path that leads from the Bart and from the crosswalks to the entrance of the center. The subtle texture was easily detectable by people who use a white cane, though doesn't feel bumpy or uncomfortable for wheel chair users who ride over it. 38
The design of the ERC often needed to strike a balance of this kind. Carpet has been installed that is hard enough for wheelchair users to roll on but absorbs sound, which is beneficial to those with hearing impairments. Not only that but the patterns and colors are deliberately subtle so as not to induce seizures for people with epilepsy. 39 The ceilings are covered in stretched cloth to catch some of the sound and the paneling along the walls is made from the same polymer that is used on scientific work-benches which does not ding, scratch or mark when slammed into by wheelchairs or canes. 40
Another unique element of the ERC geared towards people with visual impairments is a fountain on one end of the center's atrium. This atrium is a unique trapezoidal shape that is also difficult for the visually impaired to navigate, as they often rely on the bouncing around of sound to orient themselves. The fountain in this case does just that, this sonic landmark is just one seemingly invisible component of a universally designed building. 41
If a person chooses to skip the ramp en route to the second floor the elevator is available for use by just about anyone. Buttons to call for the elevator are both on the wall panel in the usual place as well as about three inches off the ground. The exciting thing about these lower buttons is that they are about five inches in diameter and made of metal so that people who are unable to press the button on the wall panel only have to give the metal buttons a kick, or simply bump into them with their wheelchair to call for the lift. This thoughtful piece of design doesn't just aid people with disabilities. Anyone who has tried to press the button for the elevator with their arms full of groceries can attest to that. Inside the elevator the buttons for each floor are again foot height and located on the side of the elevator, which opens from the opposite end on the second floor than it does on the first floor so that wheel chair users do not have to back out or spin themselves around inside the elevator. 42
The bathrooms in the ERC far exceed the demands set forth by the ADA. 43 Things like stalls that are large enough to accommodate a person in a wheelchair as well as their attendant are rare in the world of architecture. These elements of design are helpful not only to people with disabilities but to everyone as they get further into their old age.
In 1990 the Americans with Disabilities Act was signed into law which mandated that all public and commercial places of business be accessible to people with disabilities. This decision was met with much outcry from many of the "normal" members of the citizenry, and was alternatively quite exciting for those that had previously been excluded from engaging with and in these environments. The problem that arose after the ruling was that though compliance came, it was often in the separate but equal fashion of the pre-Civil Rights era. Compliance often made use of a side door or a freight elevator that only served to reinforce the second class status of people with disabilities, and keep them invisible to the rest of the population. This was often done to cut costs or avoid changes in aesthetic to public entrances.
The Ed Roberts Campus is the perfect illustration of how aesthetics and good design do not have to be sacrificed to create a structure that can be accessed by all. As proof of this notion of excelling both in form and function, since opening in 2010, the ERC has won multiple awards for its architectural design and application of Universal Design. 44
Much of this separate but equal accessibility continues to exist today and it will take things like government incentives to bring about thoughtful and equitable accessibility, as well as the continued spread of the concept and implementation of Universal Design. My hope is that because Universal Design in the physical realm will benefit so many people, the world of education will begin to look at what Universal design could look like in the classroom. Not only design for physical access, but for educational, and most importantly social access for all. If the move towards complete integration of special education continues, classrooms and the people who manage them will need to design them in a way that all students have a fair shot at getting social, emotional and educational stimulation from a wide variety of people if they are to be successful. A group of people that mirror the culture and community into which they will eventually matriculate.
Social Justice in Special Education
"Why is it that a person would not be considered educated or privileged if he went through school and never learned there was a France or a French language? But if a person went through school and knew nothing about disability, never met a disabled person, never heard of American Sign Language, he might be considered not only educated, but also lucky?" – John Hockenberry 45
Teaching all students, not just those in special education about these different models of disability will be beneficial to the universal knowledge of how the current system is set up. Although this student knowledge is important, we don't have time to wait for these students to grow into policy makers. Systematic change needs to be implemented now. Teaching students about inequity in education will be less impactful, even hypocritical, if they continue to be segregated. Experts argue that the system in which special education students have historically been placed, one of separation, denies them the opportunity to be taught alongside their general education peers. 46 This, paired with programs that are inherently inferior, creates a social injustice not unlike the government mandated accommodations to barriers imposed upon the physically disabled community; separate and unequal.
There is a movement called inclusion that aligns itself with the sentiments of the social minority model. Inclusion, as its name suggests, advocates for all students, regardless of their ability to be included in general education classes. Simply placing special education students in general education classes within our current system poses an obvious problem as what is needed is a complete transformation of our educational construct. When approaching this problem Dyson (1999) identifies two discourses in relation to inclusion, justification and implementation. 47 These discourses highlight how and why inclusion is a model that could help to shape a more equitable education system.
Justification speaks to reasons we need inclusion in our schools. The main argument is that within our current system, general and special education students are taught in parallel systems and as a result the powers that be are less likely to make changes to the entire system based on the lack of one group's success. If both groups of students were housed under the general education system, disabled students would be more likely to prompt systemic change if they were not successful. 48
A second argument arises that deals with how effective special education is in comparison to general education. Studies show that special education students learning within segregated classrooms do not perform better than their peers who are integrated into the general education classroom. Not only that, but this segregation prevents special education students from feeling a sense of belonging. 49 Segregation causes the sense of community to suffer in a parallel system.
The discourse on the implementation of inclusion within such a fixed system claims that it is necessary to involve political action. 50 This political action would be used to work towards altering the inequalities that have been inherent in the current education system. If inclusion were implemented it would take strong political and grassroots action, as it would be a major deviation from the structure of the current education system.
These ideas look wonderful in the vacuum of theory; however, as educators we know of the wide variety of factors that can influence change. The shift to a successful inclusion model can never happen if the social identities of students are not depolarized. This must be done carefully however, so as to keep intact each student's distinct identity and not fall again into the medical model. 51 The transition to inclusion must be calculated so as to not miss a golden opportunity to progress desegregation.
The social benefit that comes from integration of different groups within populations is priceless. Looking at the countless cultural enhancements given to us by other minority groups that have been integrated into our society it should be no question whether or not there should be a push to make this invisible community more visible by creating access for them. The thought of mono-sex, racially segregated classrooms is, at this point, a preposterous one; and the benefit students get from having diversity in their classrooms is a boon to education. Diversity is not only beneficial to students but to society as a whole. Learning about disability rights will allow these young people to go through school being more accepting of each other. As students grow older and integrate into adult society, so too does their acceptance and tolerance of different people, and the rights of those people to be successful in society. Why then can we not adopt this model for people with disabilities?
This activity seeks to make the invisible visible. My students all have disabilities though only a few of them are physical. These invisible disabilities are often difficult to identify for students. Some of them are aware of the barriers they are up against and some have no idea. To bridge the gap between the very visible barriers of the physical built world and the invisible barriers of the educational and emotional world, students will partake in a simulation exercise. Students will be investigating the built environment with a "physical disability". This can be done with actual implements that people in the disability community use, such as wheelchairs, white canes, etc., or students can simply be asked to survey the environment for obstacles that might impede the movement or restrict people with physical disabilities.
Students will be instructed to navigate through the city of Berkeley in chaperoned groups and take note of obstacles and barriers they were and were not aware of. A graphic organizer will be employed to focus students on the obstacles they come upon as well as ideas of what accommodations or modifications could be put in place to overcome them. After navigating different parts of the community with different "disabilities" the students will take a tour of the Ed Roberts Campus to contrast the environment they just navigated with one that was built specifically for optimal accessibility. Students will note which of the alterations of environment would have been beneficial to them earlier in the exercise.
Notes on Disability Simulation
The stated objective for students during the disability simulation will be to investigate how barriers impede their movement within an environment. Making this objective clear is of the utmost importance, lest students begin to feel pity or disdain for those in the disability community. Sally French makes the point that often when the aim of the disability simulation is to emulate the experience of someone that has a disability for the sake of emulating what life would be like, it does very little to change attitudes towards the lives of the people in those communities. In many cases it ends up doing the reverse. 52 It is silly to think that blindfolding a person for an hour will give them the experience of being blind, rather than simply disorienting them. This is one of many reasons that French advocates for disability simulation never being used; it often highlights the negative aspects of disability, those in line with the medical model. This in turn causes students to think of those with disability as having difficult or even horrible lives. 53
Burgstahler and Doe state that this issue can be overcome by focusing the simulation on strategies and structures that can and should be in place to accommodate for the differences in people. They also note that it is imperative that the objectives of the simulation are clearly stated and tightly focused on a particular outcome. 54 It is highly recommended if not essential that teachers who are interested in disability simulation first read Burgstahler and Doe's Disability-related Simulations: If, When, and How to Use Them in Professional Development. Details will follow in the resources section.
Unpacking What Was Learned
The class after students return to school they will use the information they took down to have a fishbowl discussion about the differences in the medical and social minority models. Students will be encourage to apply the concepts they learned about the medical model as it relates to physical accessibility to other forms of accessibility including social, educational, economic and so on. As an extension to the discussion students will be asked to write down three things they interact with in their lives that, with their new knowledge of disability inequality, they feel needs to be improved to become more inclusive. This could be a physical structure or object. It could also be an assignment in school or an emotional or behavioral situation. Examples can be given to get the ball rolling. Students should also be encouraged to think of family members, specifically those who are elderly or disabled for inspiration.
In a fishbowl discussion a small group of students are randomly or selectively placed inside a circle of the remaining students. The students in the middle are in the "fishbowl" to be observed by those outside of it. The students inside the circle are directed to have a conversation about a specific topic. Students can be asked to do this on the spot or given time before the activity begins to write some thoughtful responses to the prompt. The students in the outer circle are given observation tasks, such as noting who speaks and how often which will then be shared with the entire group at the end of the activity. After the observers share their findings, they are allowed to weigh in on the different points raised throughout the activity and on the benefits the activity lends to a topic of this kind.
What Do You See As A Curb?
Students will be asked to share out the barriers they have identified in their lives. They will then be placed in assigned or self-selected groups of three to five and tasked with discussing the barriers that each of them brought with. Through this discussion, students should select one barrier that they as a group agree is the greatest barrier. Students will then be asked to create a detailed model, either with the modeling materials or as a model design on paper. Modeling materials can either be provided by the teacher or brought from home by the students. The first design or model should detail the barrier as it currently exists and students should label the different parts of the designs that exclude groups of people and how/why this occurs.
The second part of this activity will involve students recreating this (former) barrier with Universal Design. As students rebuild or redesign their barrier to be as inclusive as possible a similar procedure will follow. Students will make note of each change, giving reasons for the change and highlighting who this will increase accessibility for and why. The project will culminate with a gallery walk in which all students will participate.
A gallery walk is an activity in which projects are peer reviewed and constructively criticized. In this particular gallery walk each student will be asked to give feedback to at least five of their peers, but can give feedback to as many as they would like. This feedback can be written on small sheets of paper that can be folded and placed in a pile or on the back of a sticky-note, that can then be stuck to the desk or table the project is on. A discussion about what constitutes constructive feedback will precede this activity. Positive feedback should be highly encouraged.
Alternative: What For You Is A Curb?
An alternative activity special education students, though it could be used with the general education population as well, is to focus on what for that particular student is a curb. Students will focus on something that they personally struggle with, an individual barrier. Rather than think about what they could do to "fix" themselves, students will be asked to detail what accommodations and modifications can be put in place within their environment to allow access to whatever their end goal may be. Students will proceed with this project much like the activity previously listed: They will outline what for them is a struggle, then detail each barrier that makes what they are attempting to do difficult. They will then Universally Design this task putting in place environmental accommodations and modification they believe will be beneficial. Students should also include a section on how and to whom they will advocate for these changes. A Gallery Walk or a short presentation to discuss their findings will follow to wrap things up.
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