Running head: ABLEISM EDUCATORS 1

17ABLEISM EDUCATORS

Ableism Educators: Moving Beyond Ableism Ally ParadigmTempris Daniels and Brett StachlerLoyola University Chicago

AbstractAccording to Wilson, Getzel, and Brown (2007): After 5 years of undergraduate coursework and one semester as a grad student I have finally figured out how to get what I needits not a matter of what services VCU (Virginia Commonwealth University) has to offer, but how willing they are to work with students like me, doing whatever it takes to get us the support we need to be successful (p. 43).In the last couple of decades, higher education access has increased for students with disabilities, and the student experience has shifted towards equity as the results of initiatives such as disability services offices (Smith, Foley, & Chaney, 2008). However an analysis from history, team observations, and research suggest that more services and support are needed for students with a disability. Instead of facilitating an argument for creating more support and services by means of a singular disability orientated office, we advocate for a well-rounded disability educator role from all student and academic affairs practitioners. In captivating a disability educator role, student affairs practitioners, faculty, and staff can utilize a proactive role in creating a validating learning environment for their students. A brief history will show that although strides have been made to incorporate inclusion in higher education, gaps in advocacy still exist. In deconstructing our own target and agent identities, we demonstrate the importance for student affairs practitioners to understand their own lens of temporary able bodiedness in order to understand the wide spectrum of labeled and unlabeled disability.

History and Current StatusAccording to the Americans with Disabilities Act (ADA), a person is considered to have a disability if she or he has a significant impairment that interferes with a major life activity, such as walking, seeing, hearing, learning, speaking, breathing, standing, lifting, or caring for ones self (Castaeda, Hopkins, Peters, 2013, p. 461). These constructed criteria hinder a person from performing in major life activities that are considered the norm to society today. Approximately ten percent of the worlds population live with a disability making up a large minority group yet we often define someone has having a disability if they are visually or hearing impaired or a person who is in a wheelchair (Castaeda et al., p. 461).In our text, Griffin, Peters, Smith, (2007). Define ableism as:pervasive system of discrimination and exclusion of people with disabilities. Like racism, sexism, and other forms of oppression, ableism operates on individuals, institutional, and cultural levels to privilege temporarily able-bodied people and disadvantage people with disabilities. People targeted by ableism include those with developmental, medical, neurological, physical, and psychological disabilities (p. 335). Ableism was seen in a oppressive state, viewed through a religious lens and considered a unchangeable condition (Griffin et al., 2007). As Western society has become more powerful, our society has shaped disabilities to be perceived as different. From a medical standpoint, doctors believed that they could cure a disability or fix the pain received by the patient (Griffin et al., p. 462). In the 1880s a person diagnosed with mental retardation were considered disabled in the United States while during World War II veterans returning home were viewed as needing physical and/or mental help from others to live a productive life (Castaeda et al., 2013, p. 462). Furthermore, a person who was ill, aged, or in a accident and could not longer keep up in an increased fast pace of life were considered to have some type of disability (Castaeda et al.). The Rehabilitation Act of 1973 required educational institutions to take responsibility to ensure their campus was accessible for anyone with a disability although institutions are still struggling to meet accommodations (Hall & Belch, 2000). The effort to increase awareness of students with disabilities began at Gallaudet University where Abraham Lincoln signed a legislation to give funding to the university for students with disabilities (Hall & Belch). This initiative paved the way towards equity, where higher education professionals like at Roosevelt University consider themselves luckier than others when it comes to the amount of resources given (N. Litke, personal communication, November 6, 2013). After Lincolns push with legislation it was not until 1990 where the ADA started providing federal funding for institutions and programs (Hall & Belch). Since 1986 the demographics on campuses have made a shift. Participation rates in higher education have increased from 1986 to 1994 (29-45%) and in a 1996 survey it was revealed that 6% of students reported having a disability (Hall & Belch). Along with the increase of reported disabilities, the expansions of different types of disabilities increased in reports (Hall & Belch).These statistics support the values in the student affairs field. The strong historical commitment in the field dates back to the Student Personal Point of View (SPPV), a document displaying the obligation of educator to consider the holistic view of the student and not just their intellectual development (Hall & Belch, 2000). As early as 1986, student affairs professionals have shown their commitment to promoting diversity by incorporating programs on their campuses providing a safe community for all, human dignity and pride, and equality (Hall & Belch). McNairy (1996) points out even with the commitment to diversity, students have felt underrepresented, a lack of sensitivity, and disaffirmed (cited in Hall & Belch).According to Litke (2013), Some of the students that are here, this are their second, third, or even fourth university. I never put students on a hierarchy, but I would say that our biggest goal is to seek out the students who never asked for help, especially before it is to late in the semester (N. Litke, personal communication, November 6, 2013).As we become educated on a diverse amount of disabilities, it becomes clearly that what is considered a disability may just be a difference in a person. Jean Piaget, developmental psychologist focused on understanding ones body and the development from childhood in the ways they interact with the world, how they feel, and how much knowledge they have (Cadwallader, 2010). As we start to understand the development of others, we are educating ourselves in seeing that having a disability does not mean a cure is needed. Today many of the issues faced with ableism are ones that have been put up for ongoing debate. Examples of these disability issues include attention deficit hyperactivity disorder (ADHD), traumatic brain injury (TBI), and post-traumatic stress disorder (PTSD) (Castaeda et al., 2013).Castaeda et al., (2013), suggested that since the 1960s, cross-cultural misunderstanding have been attributed to racial and ethnic minorities in special education. Donovan and Cross (2002) stated that African American students in particular are over two times more likely than white students to be labeled as mentally retarded (p. 464). Intellectual disabilities are due to limitations in intellectual and cognitive functioning that are needed for everyday use. For students with a intellectual disability in higher education, many have to learn self- advocacy in relation to their target identity. Before entering their undergraduate institution, parents of the students often control their childrens disability in terms of making most of the arrangements for their children (McCarthy, 2007). In higher education it is our responsibility to make resources available for students but it becomes the students responsibility to take action in using their resources.The last important pieces attached with ableism today are the financial means and sexual assault. First, parents of children with disabilities struggle with finances because medical treatments, counseling, or any other necessary means are expensive (Castaeda et al., p. 465). Often due to the severity of someones disability, a personal care taker is needed or assistive equipment is bought as a aid (Castaeda et al.). Secondly, sexism and ableism effect females and can impact their mental and physical health (Castaeda et al.). For example, it is reported that one out of nine women are diagnosed with PTSD after an assault (Castaeda et al.). This statistic shows that much of the time there is a positive correlation made concerning sexual assault, women, and ableism. PTSD is associated with women who have been abused and often diagnosed too soon. This is a harmful for the victim because they are not given time to cope. This is connected to ableism in higher education in relation to students on our campuses. Although in the past women were quick to be diagnosed for PTSD after a sexual assault, it is important that as a institution we are not quick to diagnose but let students heal. In order for proper measures to be taken by student affair professionals, it is important that we are all multiculturally competent in ableism versus just having one department focus on student needs. Although there are financial struggles, current intersections between ableism, and past theories about human development, student affair professionals are still facing challenges within the field. The largest challenged faced are that students still feel underrepresented and devalued in the educational system where the individual does not feel part of the campus community (Hall & Belch, 2000). Much of this feeling of being underrepresented is the fact that students do not have faculty members with disabilities present on campus and/or do not fully understand their disability (Hall et al.). In our interview, Nancy Litke explained that most students who reach out to her office for the first time with an individual educational plan do not understand their disability. She explained that sometimes students want to understand their disability and how it affects their life holistically, and that some students only want the Academic Success Center to just facilitate additional classroom needs from them (N. Litke, personal communication, November 6, 2013).Secondly, the campus universal design has made it challenging to accommodate students in terms of physical space (Watson, Bartlett, Sacks, Davidson, 2013). Due to universal design, retention rates for students can improve or decrease based on access and although universities in the pasts such as North Carolina State University have conducted research to improve design, The University of Wisconsin- Whitewater have shown their commitment to serving students with disabilities meeting more than the requirements of the ADA (Watson et al., 2013). The last major concern surrounding higher education institutions today are the invisible disabilities on campus. Not all students are disclosing their disabilities making support a harder task for student affair professionals. Ethical obstacles including Family Educational Rights and Privacy Act (FERPA) make communication concerning students disabilities harder to become known (Livingston et al., 2013). The lack of competency and knowledge of students with invisible disabilities make it harder to advocate for their well-being (Livingston et al., 2013). Even with the current obstacles concerning ableism in our higher educational system, there is much of an effort to increase awareness and accommodations.Considering a Holistic Disability Educator ModelWhile there are many different ways a disability identity model can be viewed from a university perspective, the models fall under the umbrella of two camps: disability accommodating and disability educating. As citied by Wilson, Getzel, & Brown (2000), Vogel conceived of university initiatives for students with disabilities on a continuum, where on one end a university provides a single staffed office for students with disabilities. On the other end, colleges and universities with a multi-staffed office are trained on the wide spectrum of disabilities, and can provide initiatives in the form of accommodations and education to students. This spectrum captures the need for more initiatives taken by university disability offices, but does not speak for the need disability education model to become holistic at the university.Since the mid 1980s, researchers have been documenting growing numbers of students with disabilities at colleges and universities (Hall & Belch, 2000). Additionally, 82% of those students in a higher education setting have an invisible disability (learning disabilities, health impairments, speech impairments, low vision, and low hearing), yet students express that too much emphasis is placed on architectural, rather than service orientated barriers (Hall & Belch, 2000; Wilson et al., 2000). Student and academic affairs practitioners need to consider a disability education model as a shared and collaborative responsibility rather than centering the diverse needs and responsibilities to a singular office (Watson et al., 2013; Hall & Belch, 2000; Livingston et al., 2013). Hall & Belch (2000, p. 13) cite the dilemma faced between having an identity-based office to meet the needs for students with disabilities, while most of the responsibilities to do so fall at the feet of that office. However, student affairs professionals need to consider if, as an unintended consequence, special programs and centers also relieve staff who are not located in those centers from acting on their responsibility to understand and address the diverse needs of underrepresented groups. The same concern potentially arises when student affairs departments designate an individual staff member as liaison to a special programin this case, the disabilities services office. The liaison should not be the only person to provide services to students with disabilities. A part of the unique need for a comprehensive disability education model in higher education exists because of a disability responsibility shift in the transition between secondary and higher education. Because federal policies place the responsibility of disability services with educational institutions in primary and secondary education, the institutions and the students parents facilitate accommodations. Students have little or no educational background about their disability identities when entering higher education, even though they are now responsible for the advocacy of their needs (McCarthy, 2007). A straightforward path to implementing a student affairs disability education model is a difficult concept, when taking into consideration how disjoined and fragmented organization and governance structures in higher education can make it difficult to create coordinated and comprehensive responses for underrepresented identities (Hall & Belch, 2000). Wilson et al. (2000) touches on this climate by explaining how students feel real and/or perceived lack of consideration of special needs by Student Activities personnel has directly impacted the capability of students with disabilities to fully participate and become actively involved in campus life (p. 46). Despite challenges, universities have begun to implement a disability education model using the framework of Universal Instructional Design (UID), which can be used for students so that they can learn, recognize, and articulate their own learning needs (Higbee & Barajas, 2007). The first intentional step in creating a disability education philosophy is understanding the diverse needs of students with disabilities and how their experiences are different in higher education. The University of Wisconsin-Whitewater (UW-Whitewater) applied UID by applying seven principles - equitable use, flexibility inuse, simple and intuitive use, perceptible information, tolerance for error, low physical effort, and size and space for approach and use in the construction of UW-Whitewaters newest residence hall (Watson et al., 2013). With the intention to go beyond ADA requirements (stemming from a Residence Life mission statement to meet and exceed UID requirements), the residence life staff coordinated a two-day educational training to focus on the philosophy and application of UID, which was facilitated by the director of the Disabilities Services office. During this two-day training, a focus group of UW-Whitewater students with disabilities provided feedback and ideas for the new residence hall initiative. The practice of having students participate with the planning of such university initiatives is key, since it results in the disability education pedagogy of dual learning on part of the student or academic practitioner and the student (McCarthy, 2007). The student participating in the dual learning process is able to understand and communicate their diverse needs, and will be able to develop the necessary skills of agency. Additionally, students with disabilities have expressed eagerness to participate in all aspects in advocacy and policy planning at their institutions (Wilson et al., 2000). Upon completion of the residence hall, UW-Whitewater completed a through assessment to determine how the residence hall was functioning, and if there were any unmet needs. UW-Whitewater described the process of determining needs of students with disabilities as fluid and ongoing educational process, with proactive education and assessment as necessary tools to creating a UID environment (Watson et al.). Within the realm of academic affairs, a faculty member at the University of Minnesota has implemented UID in their classroom by assigning students the task of constructing major projects in the course, instead of the faculty member creating and assigning them (Higbee & Barajas, 2007). This creates an environment of ableism pedagogy, since in the course student groups examined how individuals learn differently and how these differences play out in group processes (Higbee & Barajas, 2007, p. 19). The Roosevelt University Academic Success Center implements educational ally workshops for students with disabilities with all new faculty members entering the university (N. Litke, personal communication, November 6, 2013). The training covers education policies and practices (e.g. UID), a panel of current students to go over their experiences and answer questions, and a break-up of small group discussions based on scenarios. Initiatives to engage ableism pedagogy in academic affairs is vital since students perceive that instructional faculty hold the final determination of success in higher education (Wilson et al., 2000). Yet those in academic and student affairs have reported feeling unsupported in terms of educational training from the university, and knowledge of information and resources present at the university (Wilson et al. 2000). A dilemma faces higher education regarding this responsibility. At one end of the spectrum, a disability services office for students can represent all of the responsibility for students with disabilities. On the other end of the spectrum, multicultural competent practitioners in academic and student affairs have a disability education pedagogy they can intentionally use to implement equitable policies and practices in higher education. Tempris Personal and Professional Impact

Being a future professional, reflecting on both my target and agent identities from an ableism lens. What I failed to realize in reflection was that my target identity was not visible to others or considered marginalization. I wear contacts/glasses and without them I would not be able to see. In McCarthy 2007, she says that there is growth and knowledge that come with self-advocacy. The importance in understanding that I had to wear glasses at a young age and what that really meant allowed me to take pride and ownership in my identity. This made me believe that wearing glasses was considered a standard in our society. Overall, our culture overlooks ablest identities such as visual impairment if a person is not visually impaired to the point that others feel obliged to assist them. From my point of view, I never really saw having glasses to be a sign of oppression because our society sees wearing glasses as a sign of intelligence and a fashion trend. Because my eyesight can be easily altered, I am still considered temporarily abled-bodied. Understanding my marginalized identity has made me view the topic of ableism in a more personal way because of personal identification.Identifying my agent identities was personally satisfying because I was able to acknowledge three different ones. The first was that I am temporarily physically abled body where it is important to note that my health and/ or physical needs can change due events such as illness or accidents. Castaeda et al., (2013), suggested that illness, weakness, devaluing and neglecting ones body can lead to a lack of being abled body. As I reflect on having a temporality physically abled body, I consciously think about what if statements in regard to health and/or physical needs changing. How may my life differ than what it is like now? Would I be able to change my lifestyle to accommodate my bodys needs? My second identity is that I have access to good nutrition and distribution to basic resources, allowing my body to function properly. I have ample amounts of water, food, clothing, shelter and any other basic needs allowing my body to function properly. A major effect on disabilities is the direct and indirect results from malnutrition and diseases and the lasting harm both have on a persons body (Castaeda et al., 2013). While components like stress is sometimes good for the body, what can hurt the body are low public safety standards, poverty, neglecting of self, high-risk working conditions, and constant stress, tearing the body down. I have the privilege of not having many of these constant components as a struggle. My third agent identity is one I never realized as a major privilege at this point in my life, which is prenatal care. Castaeda et al., (2013) reported that the lack of good prenatal care and dangerous or inadequate obstetrical practices can cause disabilities for a baby and mother giving birth. Medical care plays a major role in the United States to help prevent disabled physical damages. As a female, I am blessed that I can receive medical attention when needed.As a educator, it is my responsibility to help alert students on the importance of self-advocacy. Staying healthy and taking pride in the privileges that we have is something that should be noticed by students. In relation to female students, I believe we should make aware the importance of knowing all the opportunities out there in relation to medical care. The best way to demonstrate this practice in my work is by leading by example. Showing self-advocacy will help students self-advocate for themselves. Working in student activities will give me opportunities for advocacy and to celebrate the differences of all through programming, mentoring, and reflection. In the interview with Litke, a student shared her story where the student mentioned that by reaching out and facilitating her admission process with Academic Success, she better understands her disability and how it will impact her following her graduation (N. Litke, personal communication, November 6, 2013). This is the perfect example in how I would like my students to self-advocate. Bretts Personal and Professional Impact

As I reflected on my target and agent identities, I concluded that there are a variety of different temporary able bodied agent identities that I have, even though I am diagnosed with a couple of target identities under the same spectrum. I have been diagnosed with a reading comprehension learning disability, as well as attention defect hyperactivity disorder. There is a history of invisible disabilities in my family stemming from my father, who although knows he has a learning disability, never was formerly diagnosed with one. In his eyes, he grew up in a time where learning disabilities were an excuse for the students being lazy. He never had a disability services office in primary or secondary education, and never sought out services at Southern Illinois University. He dropped out after two years when he became overwhelmed with the classes. In a family of three siblings, my sister has never been formerly diagnosed with, but has symptoms of dyslexia, and my brother has been diagnosed with an autism spectrum disorder. My mother was my biggest advocate for my disabilities, and advocated for me to receive services from my community college. Without her persistence, I would not have advocated for these different services, and I am privileged in this way. My mother sadly passed away after my first year in higher education, and after that I had to become my own advocate. I began the process of learning what McCarthy (2007) called the difference between understanding what was difficult because of a disability, and what was difficult due to the inherent challenge in learning. Among the most difficult differences in my learning is an impaired executive function, and comprehending the readings for a class before the topic is explained verbally. Because of these target identities, I actively work to understand how students are doing in their classes, and if they understand the services that exist on campus. I currently work in a gender and sexuality student affairs area, and plan on working with identity based offices. Because of my target and agent identities within the realm of ability, along with the other oppressed and privileged identities I have, I will continuously advocate for the importance of intersectionality in the identity based work and discussions in my life. Within this are of intersectionality student affairs educators must not presume what is most central to individuals, but must instead listen for how a person sees herself (Jones & McEwen, 2000, p. 412). Nancy Litke reinforced this philosophy, stating that even though her office does serve a role for addressing the diverse disability spectrums at Roosevelt, it should be everyones job to think about how others may learn differently. Because of my experience, and the experience of my family, I know the price is high for not addressing differences in learning. In considering my agent identities, there are a variety of different perspectives that can be taken to explain my temporary able-bodied privileges. I was born healthy, with good prenatal care, ate nutritional food, took vitamins regularly, had parents that advocated for my disabilities, attended a school that fostered disability education, and had mentors who fostered cultural capital that motivated me to enroll in higher education. These are all factors that derive from having privileges in the social construction of disability, and accumulating cultural capital from family, friends, and mentors (Oesterreich & Knight, 2008; Wendell, 1996). There are a variety of different developmental, medical, neurological, physical, and psychological disabilities I do not have. I have also been formerly diagnosed with invisible disabilities, meaning I can be susceptible to overlook particular struggles that a student is having if they do not have a formal diagnosis. Because of this I need to have a growing orientation, rather than a knowing one, in order to be a disability educator for students who may have similar and dissimilar stories compared to mine. ConclusionThrough the lens of our own target and agent identities, and given the analysis from history and current initiatives, it is important to cite the emerging gains of a holistic disability educator role in higher education from multicultural competent student and academic practitioners (Hall & Belch 2000; Higbee & Barajas, 2007 Watson et al., 2013). A student or academic affairs practitioner reflecting on their own personal identities can enhance an understanding of broadening the role of a disability educator and how they are target and agents in ableism. Hall & Belch (2000) write that time spent in thinking and reflecting may lead student affairs professionals to provide an improved learning environment for underrepresented students, specifically students with disabilities, and more thoughtful consideration of programs, policies, and practices in the light of their needs (p. 13).

References

Griffin, P., Peters, M. L., Smith, R. M. (2007). Ableism curriculum design. In Adams, M. J., Bell L. A., & Griffin P (Eds.), Teaching for diversity and social justice (335-358) (2nd ed.). New York: Routledge. Castaeda, R., Hopkins, L.E., Peters M.L. (2013). Introduction. In Adams, M., Blumenfeld, W. J., Castaeda, R., Hackman, H. W., Peters, M. L., & Ziga, X. (Eds.). Readings for diversity and social justice (461-468) (3rd ed.). New York: Routledge.Cadwallader, J. (2010). Stirring up the sediment: The corporeal pedagogies of disabilities. Discourse: Studies In The Cultural Politics Of Education, 31(4), 513-526. doi:10.1080/01596306.2010.504366Kristi, W., Elizabeth, G., & Tracey, B. (2000). Enhancing the post-secondary campus climate for students with disabilities. Journal Of Vocational Rehabilitation, 14(1), 37.Hall, L. M., & Belch, H. A. (2000). Setting the context: Reconsidering the principles of full participation and meaningful access for students with disabilities. New Directions For Student Services, (91), 5.Higbee, J. L., & Barajas, H. L. (2007). Building effective places for multicultural learning. About Campus, July-August, 16-22.Livingston, W. G., Scott, D. A., Rush, S., Watson, L. A., Neiduski, M. L., & Pinkenburg, S. J. (2013). When community and conduct collide: Residents with invisible disabilities and the student conduct process. Journal Of College & University Student Housing, 39/40(2/1), 214-227.Litke, N. (2013, November 6). [Personal interview by the author].McCarthy, D. (2007). Teaching self-advocacy to students with disabilities. About Campus, 12(5), 10-16.McLean, M. A. (2011). Getting to know you: The prospect of challenging ableism through adult learning. New Directions For Adult & Continuing Education, (132), 13-22. doi:10.1002/ace.427.Oesterreich, H.,& Knight, M. (2008). Facilitating transition to college for students with disabilities from culturally and linguistically diverse backgrounds. In Adams, M., Blumenfeld, W.J., Castaeda, R., Hackman, H. W., Peters, M. L., & Ziga, X. (Eds.), Readings for diversity and social justice (3rd ed.; pp. 455-477). New York: Routledge.Smith, L., Foley, P. F., & Chaney, M.P. (2008). Addressing classism, ableism, and heterosexism in counselor education. Journal of Counseling & Development, 86, 303-309.Watson, E., Bartlett, F., Sacks, C., & Davidson, D. L. (2013). Implementing universal design: A collaborative approach to designing campus housing. Journal Of College & University Student Housing, 39/40(2/1), 158-171.Wendell, S. (1996). The social construction of disability. In Adams, M., Blumenfeld, W.J., Castaeda, R., Hackman, H. W., Peters, M. L., & Ziga, X. (Eds.), Readings for diversity and social justice (3rd ed.; pp. 481-485). New York: Routledge.Wilson, K., Getzel, E., & Brown, T. (2007). Enhancing the post-secondary campus climate for students with disabilities. Journal of Vocational Rehabilitation, 14, 37-50.