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Journal of Postsecondary Education and Disability, 29(4), 407-418 407 The Academic and Psychosocial Impacts of Ehlers-Danlos Syndrome on Postsecondary Students: An Integrative Review of the Literature Catherine M. Giroux1 Julie K. Corkett1 Lorraine M. Carter2 Abstract Ehlers-Danlos Syndrome (EDS) is a complex, often invisible, connective tissue disorder that has arguably profound psychosocial and academic impact on postsecondary students. It is an underdiagnosed and misun- derstood condition that is the focus of little research, particularly within the social sciences. Several factors influence the academic experiences of postsecondary students with EDS, including institutional issues, faculty attitudes, accommodations, school attendance, and technology use. Psychosocially, adjusting to new or chang- ing diagnoses, dealing with the stigmas and misperceptions of others, and the ongoing identity formation of youth are major factors for students. Since there is a notable shortfall in academic literature with the specific focus of EDS in postsecondary education, this review draws from the peripheral fields of chronic illness and disability studies for support. Keywords: Ehlers-Danlos Syndrome, chronic illness, post-secondary, psychosocial, academic barriers Ehlers-Danlos Syndrome (EDS) is a connective dition when he published details of a patient with lax tissue disorder where the body does not produce joints, hyper-extensible skin, and inclination to bruis- proper collagen (Ehlers-Danlos National Foundation ing (Parapia & Jackson, 2008). In 1908, Henri-Al- [EDNF], 2009). Collagen is effectively the “glue” that exandre Danlos, a French physician, suggested that holds the body together, and it directly affects approx- skin fragility and vascularity were cardinal features imately 80% of human systems, including skin, or- of this syndrome (Parapia & Jackson, 2008). The gans, joints, and the nervous and circulatory systems classification of EDS began in the late 1960s when it (EDNF, 2009). There are multiple manifestations of was defined according to nine subcategories (Parapia EDS; the most common are the classical, hypermobil- & Jackson, 2008) that have since been revised to six ity, and vascular types. The vascular form of EDS can main types (EDNF, 2015). result in spontaneous organ rupture and often precludes Many people with this disorder become symp- an average lifespan. The diagnosis rate of the different tomatic as young adults (Adib, Davies, Grahame, types of EDS is presently unknown. However, accord- Woo & Murray, 2005; EDNF, 2009), right around the ing to the EDNF (2015), the prevalence of EDS is esti- time that they are considering or are enrolled in post- mated to be about one in 2,500 to one in 5,000. Using secondary education. Daily dislocations cause many these incidence rates, the EDS population in Ontario, problems for students with EDS in the school setting Canada, for example, can be estimated to be approxi- (Tinkle, 2010). Furthermore, low muscle tone and mately 2,700, given a population of 13.7 million peo- delayed fine and gross motor skills cause individuals ple (Statistics Canada, 2014). Vascular EDS is estimat- with EDS to appear clumsy and uncoordinated (Adib ed to have a prevalence of approximately one in 250, et al., 2005). Many students with this disorder are un- 000 (EDNF, 2015). able to participate normally in physical and regular EDS is not a new disease. In 1901, Edward classroom activities. This circumstance negatively Ehlers, a Danish dermatologist, recognized the con- affects their physical and psychosocial development. 1 Nipissing University; 2 McMaster University 408 Giroux et al.; Ehlers-Danlos Syndrome Currently, there is limited research on EDS. Of behavioural complications which require meaningful the research that does exist, little of it focuses on ed- and professional involvement” (p. 5). The consensus ucational accommodations and modifications that can is that a chronic illness is a medical condition, dis- help students with their academic and psychosocial ease, or injury that has lasted more than three to six development. Instead, the focus is clinical issues months and has caused an individual to significantly and, thus, serves medical professionals rather than alter his or her day-to-day activities (Repetto et al., students, educators, and support workers (e.g., Adib 2012). Decreased endurance, mobility, or cognitive et al., 2005; Castori et al., 2012; Milhorat, Bolog- functioning results in a limitation of the individual’s nese, Nishikawa, McDonnell & Francomano, 2007; ability to continue his or her usual lifestyle (Wide- Savasta, Merli, Ruggieri, Bianchi & Sparta, 2011). No man-Johnston, 2015). An individual with chronic ill- studies have been found in which the relationship be- ness is never cured. tween EDS, emotional and social development, iden- Because there is no specific literature on the psy- tity formation, and academic achievement are exam- chosocial and academic development of postsecond- ined. As such, there remains a large gap in the body ary students with EDS and limited literature on the of knowledge about this disease and the postsecond- topic of chronic illnesses and postsecondary educa- ary student experience. Moreover, because EDS and tion, the literature of disability studies was considered its co-morbidities are under-recognized in the general in this review. Furthermore, as the rights of individ- population, there is a systemic lack of awareness of the uals with chronic illness are governed by the same accommodations required for students with this condi- legislation as disabilities, many of the examples cited tion. Even in the broader context of chronic illness and within the disability studies literature can be applied postsecondary education, there are few resources. In to people with chronic illnesses as well. While EDS is short, students with chronic illnesses, such as EDS, are a chronic illness by definition, many of its symptoms an under-studied, under-represented population in the result in temporary or long-term disablement; thus, postsecondary environment. within the body of the paper the terms chronic illness This literature review builds around two over- and disability are both used. As further context to the arching interconnected themes: academic consider- review, as appropriate, the ideas presented within the ations and psychosocial considerations. Within these aforementioned sub-sections will focus on issues and themes, specific subcategories are explored. They barriers with recommendations and strategies out- include institutional issues, faculty attitudes, accom- lined in a Summary section. modations, school attendance, technology, and stig- mas and (mis)perceptions relating to chronic illness. Legislation Before relevant literature in these areas is explored, In Canada, Section 15(1) of the Charter of Rights essential terminology is explained and a number of and Freedoms (1982) stated the following: key ideas drawn from Federal and Provincial legisla- tion are offered as important context. The grounding Every individual is equal before and under the theoretical framework is also presented in advance of law and has the right to the equal protection and the literature itself. equal benefit of the law without discrimination and, in particular, without discrimination based A Note on Terminology Use on race, national or ethnic origin, colour, religion, The terms chronic illness and disability are not sex, age, or mental and physical disability. interchangeable nor are the concepts mutually ex- clusive. The United Nations (2007) used the term Notably absent from the above statement is mention disability to apply to all persons with disabilities in- of geography. Hence, accommodations for persons cluding those who have long-term physical, mental, with disabilities enrolled in postsecondary institu- intellectual, or sensory impairments, which, in in- tions varies according to where the student lives. Ad- teraction with various attitudinal and environmental ditionally, the Charter is quite broad and, therefore, barriers, hinder the person’s full and effective partic- open to interpretation when accommodations for ipation in society on an equal basis with others. The persons with disabilities are developed and regulated term chronic illness is less formally defined. Larson (Black, 2004). Further, health status and chronic ill- (2006) defined chronic illness as “an ongoing medical ness are not mentioned specifically in this legislation, condition with a spectrum of social, economic, and thus generating questions about how they should be Journal of Postsecondary Education and Disability, 29(4) 409 addressed and accommodated. By comparison, in the Academic Considerations United States of America, the passing of Section 504 For the purposes of this review, the term academic of the Rehabilitation Act of 1973 allowed, for the first considerations is used to refer to logistical concerns time, many people with severe limitations to enter that affect learning within the postsecondary educa- higher education (Stephens & Norris-Baker, 1984). tional setting. These concerns include but are not lim- At the provincial level, in Ontario, important ited to institutional issues, faculty attitudes, accom- strides have been made that mandate accommodation modations, school absence, and technology. of persons with disabilities. In 2001, the Ontarians Institutional issues. Recent research indicates that with Disabilities Act was passed. It requires the gov- more than half of Americans experience at least one ernment and wider public sector including colleges, chronic illness (Goodwin & Morgan, 2012). Despite universities, hospitals, and school boards to devel- the challenges that persons with chronic illnesses face, op accessibility plans (Ministry of Community and they can be highly productive members of the academic Social Services, 2013). In 2005, the Government of community. The key to their success lies in institution- Ontario passed the Accessibility for Ontarians with al policies and practices that ensure equity and support Disabilities Act; the aim of this act is to make Ontario productivity. In a 2005 postsecondary report entitled barrier free for individuals with disabilities (Mullins “Ontario: A Leader in Learning,” the following direc- & Preyde, 2012). Additionally, according to the On- tives were set out: tario Human Rights Commission, service providers must take the needs of persons with disabilities into Require institutions to reach out to students with account and remove all existing barriers to services disabilities at their schools and in their commu- like education. nities to ease the transition to postsecondary ed- ucation. Provide funding for enhanced academic Models for the Conceptualization of Disability, and career counseling on campus. Allow for the Illness, and Health: Biopsychosocial Model evolution of centres of research and service ex- cellence and distribute funding to institutions for The biopsychosocial model of disability, illness, supports and services on the basis of the size of and health grounds the examination of the academic a given institution’s population of students with and psychosocial considerations required for students disabilities. (Higher Education Quality Council of with chronic illnesses including EDS. The biopsycho- Ontario, 2013, p. 1) social model suggests a complex interaction of bio- logical, psychological, and social factors that play a Each of the above touches on a major facet of the is- significant role in an individual’s ability to function sue of access to postsecondary education for persons (Falvo, 2014). Conceptualizing chronic illness and with disabilities and/or chronic illness. According to disability as health conditions that affect functional Jung (2003), in postsecondary education, accessibili- capacity allows for increased understanding of in- ty refers to “the institution’s legal obligation to create dividual experiences of such health conditions. The genuine learning opportunities for people with dis- World Health Organization (WHO, 2014) accepted abilities to participate in all aspects of university life” the biopsychosocial model as the dominant approach (p. 92). The duty to accommodate requires the institu- to understanding disability and health. The WHO ac- tion to take an active part in modifying practices, fa- knowledges that all persons may experience elements cilities, and/or services that prevent the inclusion and of disability over the course of a lifetime through participation of students with disabilities who are oth- changes in health or environment and the impact of erwise qualified to attend school. In addition to bigger the disability/health condition on the functioning of picture issues such as inadequate funding to reach out an individual. Just as people vary in relation to their to students with chronic illness and make systemic functional capacity, people vary in their personal and structural changes, other more subtle barriers also resources, access to social supports, and abilities to hinder the full participation of students with chron- cope (Falvo, 2014). Through the application of the ic illnesses. Some of these barriers include a lack of biopsychosocial approach, an understanding of dis- faculty and peer awareness; lack of participation in ability and health that incorporates all aspects of an academic and non-academic discourse; and financial, individual’s life experience will be obtained. time, and other resource constraints (Hutcheon & Wolbring, 2012). Each of these barriers is problemat- 410 Giroux et al.; Ehlers-Danlos Syndrome ic since they lead to diminished postsecondary school Accommodations. People with chronic illnesses experiences and negative effects on students’ beliefs, represent a significant proportion of the population of identities, and self-concept. persons with disabilities (Jung, 2003). Most students Faculty attitudes. According to Jackson (2013), with chronic illnesses like EDS depend on disability educators may be uncomfortable dealing with students policies and supports in order to access the same post- with chronic illness because they lack knowledge and secondary educational opportunities as their non-dis- understanding of specific conditions. In the case of abled peers (University of Manitoba, 2014). For some, a chronic illness, the faculty member must feel ade- making higher education more accessible and includ- quately prepared to help the student. Faculty attitudes ing previously excluded groups in the classroom are and responses can dramatically affect the academic perceived as disruptive and even threatening to the success of students with chronic illness. How open existing institutional order of the university (Hutcheon faculty is to learning about different medical condi- & Wolbring, 2012; Jung, 2003). Students who receive tions and modifications and accommodations that academic accommodation as a result of a chronic ill- support their students with such illness is particularly ness may also be the target of resentment on the part important. Faculty who are positive and approachable of their peers because accommodations may be seen as help students with chronic illnesses to feel secure and unfair despite the fact that, in reality, accommodations included in their learning environments. Too often, correct inequitable outcomes of social arrangements there is a level of skepticism about chronic illness on (Jung, 2003). the part of faculty that students need to overcome in Students with chronic illnesses, like EDS, experi- addition to their other challenges. ence unique issues that often require specific and tar- Perceptions of negative attitudes by faculty may geted educational accommodations. In a study com- prevent students with chronic illnesses like EDS from paring young adults with childhood onset of chronic disclosing their health situations, using self-advocacy illness with their healthy peers, those with chronic skills, and requesting accommodations (Rao, 2004; illness experienced lower rates of high school grad- Sachs & Schreuer, 2011). In a survey conducted by uation, college attendance, college graduation, and Sachs and Schreuer (2011), 50% of students with dis- employment (Maslow, Haydon, McRee, Ford, & abilities indicated that faculty members understood Halpern, 2011). Better educational accommodations their needs but only 25% of faculty members were in secondary school and an increased emphasis on willing to help accommodate them. In an effort to cap- the transition to postsecondary education for students ture the faculty perspective, Bruder and Mogro-Wil- with chronic illnesses might encourage students re- son (2014) examined faculty awareness and attitudes quiring accomodations to enroll in postsecondary towards students with disabilities. While their study degree or diploma programs and experience success was limited to one university and to disabilities in (Haas & Fosse, 2008). In Ontario, transition planning general, their study consisted of 2,056 faculty and for students moving from secondary school to post- graduate students. Despite the fact that half of the secondary education is part of a student’s Individual faculty reported having a student with a disablity in at Education Plan (IEP) (Ontario Ministry of Education least one of their classes, faculty members still report- [OME], 2002). If the student does not have an IEP, he ed feelings of pity, akwardness, embarrassment, and or she will likely not have a transition plan in place admiration for students with disabilities. Within the prior to graduation from secondary school. classroom the majority of faculty members provided While students with EDS have needs similar to accommodations to students with disablities. Howev- those of students with disabilities, they also have er, 7% of the faculty viewed the provision of accom- unique challenges and issues that may require devi- modations as inconvenient, disruptive, and caused ation from the standard academic accommodations feelings of unfairness in other students. Furthermore, typically provided in the postsecondary institutional 59% of the faculty were uncertain as whether students setting (Korbel, Lucia, Wenzel, & Anderson, 2011). with disablities were being fairly treated by the uni- Often students do not realize that they are allowed to versity, with 18% stating that the university was do- advocate for themselves and ask for different accom- ing a poor job including students with disabilities in modations if the ones in place are ineffective (Kurth social organizations and co-curricular activities. Oth- & Mellard, 2006). Kurth & Mellard examined how er findings indicate that faculty may be reluctant to postsecondary students with disabilities perceived the provide certain accommodations for fear of lowering accommodations available at 15 community and tech- academic standards (Barazandeh, 2005). nical colleges in California, Minnesota and Kansas. Journal of Postsecondary Education and Disability, 29(4) 411 Their findings suggest that the accommodations of- commodate multiple student needs is the practice of fered to postsecondary students who have disabiltiies Universal Design (UD). UD is a philosophy and set are often ineffective and inappropriate because the of principles that relate to the structuring of teaching accommodations focus on the disability rather than and course design (Davies, Schelly & Spooner, 2013). on the students’ contextual and functional needs. For While primary and secondary school environments example, a common accommodation offered to stu- have adopted some of the practices of UD, postsec- dents is writing tests and examinations in an alterna- ondary institutions have been slower in adopting this tive location. While this accommodation meets the design. This slow uptake may be due to the fact that academic needs of a student, the student may feel iso- faculty rarely have formal teacher training. Hence, lated from classmates. Thus, accommodations must unless institutions offer specific UD workshops, it is be examined to ensure that they are meeting both ac- unlikely that faculty will have experience in designing ademic needs as well as the student’s personal needs. courses using its principles (Dallas, Upton, & Sprong, The postsecondary students in Kurth and Mellard’s 2014). Incorporating UD into higher education re- study also stated that independence was one of the quires an institutional shift from the individualized most important factors when selecting an accommo- nature of accommodation to training opportunities for dation. While adaptive technology (e.g., computers, faculty in the use of UD. tablets, voice-to-text, text-to-voice) provides academ- Perhaps there has been a lack of emphasis on ic independence, accommodations were not provided training faculty to work with students and colleagues to ensure that the participants were able to maintain with chronic illnesses and disabilities because people independence in terms of transportation, extracurricu- with disabilities/chronic illnesses comprise a small lar activities, housing, and accessible facilities. Over- minority of the overall postsecondary population. all, Kurth and Mellard conclude that while postsec- Barnes (1999) noted the following: ondary institutions are meeting their legal obligations a greater focus must be given to the entire context of The current presentation of disability in universi- student life by incorporating system wide universal ties fosters the notion that disability is an individ- design concepts. ual or family ‘problem’; that the disabled voice is At the postsecondary level, it is the responsibili- absent from the curriculum; that disabled people ty of the student to self-advocate to ensure his or her are objectified as a result; that there is a lack of needs are being appropriately met. While many ser- critical analysis and that this is due to the absence vices are often available within institutions, the stu- of disabled scholars and researchers within uni- dent must still advocate for him or herself in order versities. (p. 567) to receive appropriate accommodations. Additional- ly, while students generally have the opportunity to Although Barnes’ remarks are a valuable commen- select accommodations from a list of possibilities, it tary, it is also possible that there is a presence of dis- is their responsibility to work with faculty and dis- abled scholars and researchers in the academy who ability service professionals to tailor them to their cir- choose not to disclose their disabilities or chronic ill- cumstances (Kurth & Mellard, 2006). Further, facul- nesses. Making a systemic change, like institutional ty have different interpretations of accommodations. implementation of UD, could help all students since Thus, students must communicate with their instruc- individual learning needs and styles are recognized tors to ensure that their needs are being met while the and valued in the UD context. Furthermore, accom- integrity of the postsecondary institution is still main- modations would likely not need to be individually tained (Korbel et al., 2011). Faculty need to recognize sought to the degree they presently are. that no two days will be the same for students with School attendance. A student with chronic ill- chronic illnesses and that some of the most helpful ness may be absent from class due to appointments accommodations are discretion, understanding, and or hospitalizations. As a result they will miss valuable adaptability. learning time and risk falling behind in their studies. A further challenge affecting student success is a Students with a chronic illness are absent, on average, pedagogical one. Faculty often lack the knowledge ten days per academic year compared to a three-day and experience to prepare materials, classes, and absence for those who do not have chronic condi- courses for students with chronic illness. One way tions (Jackson, 2013). This higher rate of absenteeism of designing lessons and classroom activities to ac- contributes to lower levels of academic achievement 412 Giroux et al.; Ehlers-Danlos Syndrome which can negatively affect success in receiving and Psychosocial Considerations retaining bursaries and scholarships. Financial stress, For the purposes of this review, the social and health stress, social isolation, and slower maturation emotional impacts of chronic illness on postsecondary are all negative outcomes of prolonged absence (Mar- students will be examined under the broad category of tinez & Ercikan, 2009; Maslow, Haydon, McRee & “psychosocial considerations.” Social and emotion- Halpern, 2012). As health declines, so too does ac- al considerations are, arguably, linked in the case of ademic achievement and school attendance (Haas & EDS in an academic environment. Health conditions Fosse, 2008). can trigger significant change, resulting in stress asso- Technology. As noted previously, students with ciated with psychological turmoil and physical imbal- chronic illness tend to be absent from school more ance as individuals adjust to lifestyle changes, loss of frequently than their healthy peers. According to control, pain and discomfort, and potential alterations Jackson (2013), there is high value when faculty and in status, independence, and financial stability (Falvo, institutions support the learning of chronically ill 2014). Given that EDS is chronic, painful, and poten- students during periods of absence. By continuing tially disabling, it follows that it may include some to complete course requirements at home, the stu- degree of psychosocial impairment (Lumley, Jordan, dent will be aware of what is being covered in class Rubenstein, Tsipouras & Evans, 1994). and be better prepared when he or she does return to Many people with EDS experience co-morbidities school. Another possible solution to allay concerns like dysautonomia, a disorder of the autonomic ner- about absence is enabling students who are unable vous system function that can be local or generalized, to physically attend class to interact with their peers acute, or chronic (National Institute of Neurological and the course material through various new technol- Disorders and Stroke, 2013). One of the effects of this ogies (e.g., podcasting lectures, discussion forums, co-morbidity is orthostatic intolerance (Mayo Clinic, Skype sessions, webinars). Increasing opportunities 2009), which affects recreation and social develop- for distance and online education education are being ment. Students with EDS and various co-morbities offered through Canadian postsecondary institutions may find it harder to participate in common postsec- (Ontario Ministry of Training, Colleges and Univer- ondary social settings including going to the gym and sities, 2015). Wilkie (2011) asserted that the impacts going out with their peers. Socialization is important and implications of chronic illness on students deny since studies show that students with friends and so- them the normal social interactions of school. In these cial supports recover more quickly from illnesses and cases, technology-mediated education may be a vi- are healthier overall than those who are isolated from able option for facilitating learning and socializing. peers and classmates (Ryan, 2001; Wentzel, Barry, & Web cams, voice and video streaming, along with Caldwell, 2004). This finding suggests how substan- other technologies including asynchronous course tive the effect of EDS and related conditions is on dai- methods, can help students who are in hospital or re- ly functioning and how important accommodations covering at home to stay engaged in their coursework and a normalized social context are. (Jackson, 2013). While there are ethical factors such In addition to the physical aspects of EDS that af- as gaining consent from all other students to appear fect an individual’s social and emotional wellbeing, on video, technology has emerged as an important how individuals view their conditions, causes, and means of providing engagement and socializing op- implications greatly affects their social interactions portunities for the EDS student at home. These new- (Falvo, 2014). The diagnostic process for EDS is a er forms of technology provide wonderful flexibility significant predictor of reaction as well; reactions of and new opportunities for people who were previous- grief, fear and anxiety, anger, depression, and guilt are ly marginalized, limited, and prevented from seeking common following diagnosis (Smart, 2012). The lack educational experiences through alternative models of obvious disease in relatively high functioning of (Black, 2004). people with EDS may lead physicians to suggest psy- chiatric diagnoses rather than physical or medical ones (Lumley et al., 1994). When these reactions are expe- rienced simultaneously, they can affect the emotional state of a student pursuing a postsecondary education. Positive social interaction and interpersonal support can help students with chronic illness to offset some of Journal of Postsecondary Education and Disability, 29(4) 413 this emotional turmoil. Conversely, health conditions set of psychosocial implications than a visible dis- can lead to a change in social status whereby students ability or illness does. Because there are no apparent with chronic illnesses may find themselves in a socially outward physical signs to indicate limitations, others devalued role (Falvo, 2014). Social isolation can easily have no basis on which to alter their expectations precipitate an emotional spiral. regarding the functional capacity of the individual Although many young people cope well with the (Falvo, 2014). In this situation, there is often a need emotional aspects of having a chronic illness, many to “prove” the validity of the illness because it is not chronically ill young people are likely to have a low- immediately visible to others. Many individuals with er level of emotional wellbeing than their healthy invisible illnesses and disabilities have remarked that peers (Herts, Wallis, & Maslow, 2014; Yeo & Sawyer, “you get tired of defending yourself all the time” 2005). This circumstance makes sense given the vari- (Smart, 2012). ous physical symptoms of chronic illnesses, including Conversely, with an invisible illness or disabili- the following: ty, the individual has the ability to fully control his or her identity since there is no visible “evidence” of • Fatigue and limited physical endurance due to disability (Olney & Brockelman, n.d.). In a study con- the drain of energy on the person’s body or the ducted by Olney and Brockelman, students with visi- presence of chronic pain; ble disabilities appeared to have integrated disability • Fluctuating capacity to participate in daily ac- into their identities to a greater degree than those who tivities due to exacerbations and remission of had invisible disabilities. The researchers also discov- the disease itself; ered that, if students with disabilities felt that faculty • Difficulty concentrating due to emotional fac- viewed them as competent, they would be more likely tors, medication side effects, or pain; to disclose their disabilities than otherwise. The poli- • Difficulty with mobility due to inflamed joints, tics of visibility has significant psychosocial impacts limited nerve function, or decreased strength; on postsecondary educational accommodations as • Periods of diminished productivity through- well as relationships with faculty, peers, and the in- out the day; and volved students themselves. • Frequent absence from class. (University of Stigmas and (mis)perceptions. Another dominant Manitoba, 2014, pp. 23-24) theme in the literature pertains to how students with chronic illnesses are perceived by their peers and fac- Chronic illness is particularly frustrating when stu- ulty. Stigma is related to what society considers to be dents feel well enough to complete their studies most deviations from the norm (Falvo, 2014). Often, healthy of the time. It becomes additionally problematic when individuals view those with chronic illnesses as their the limitations of their illness coincide with the time conditions rather than as individuals (Smart, 2012). For needed for preparing assignments, meeting deadlines, the most part, stigmatization occurs because of a lack of and/or taking exams. These frustrations can trigger understanding about the condition. Unfortunately, the negative thoughts and self-perceptions. Chronic ill- power of stigma can overshadow the positive charac- nesses, like EDS, can be a barrier to self-confidence teristics of individuals with chronic illnesses like EDS; and a sense of self-efficacy since it is associated with it can impact self-perceptions and the person’s willing- the risk of failure (Cunningham & Wodrich, 2006). ness to accept or divulge the health condition (Falvo, Feelings of uncertainty, being unable, incapable, or 2014). One of the most significant causes of misper- not good enough result from challenging and unpre- ceptions about students with EDS is the symptom of dictable physical symptoms. They are often exhaust- easy bruisability which is often misconstrued as abuse. ing and have significant and longstanding emotional An altered body image because of scarring and the use impacts (Falvo, 2014). of adaptive equipment (e.g., braces and mobility aids) Another important psychosocial consideration is may add to feelings of stigmatization (Berglund, Nord- the invisibility of EDS. Matthews (1994) defined in- stron, & Lutzen, 1999). visible disability as “one that is hidden so as not to Stigmatization is a characteristic of postsecondary be immediately noticed by an observer except under life and is particularly prevalent in cases of invisible unusual circumstances or by disclosure from the dis- illnesses or disabilities. People with invisible illnesses abled person or other outside source” (p. 7). Having or disabilities often receive negative comments about a chronic illness that is not visible leads to different their disability. Comments can range from belittling 414 Giroux et al.; Ehlers-Danlos Syndrome comments about the severity of their issues to com- provides fundamental information about how ments that suggest that people with disabilities are to manage the health problems associated with bad, unstable, or incapable. In an effort to avoid stig- the illness can be beneficial (Obeng & James, ma, individuals with chronic illnesses may deny, min- 2010). In the case of EDS, the training should imize, or ignore their condition and/or management address the fact that certain activities like plans (Falvo, 2014). Invisible illnesses, like EDS, can repetitive motions and daily activities (e.g., be very difficult interpersonally because the person carrying heavy books, note taking, standing with EDS appears to be healthy when he or she, in or shifting positions in class, etc.) may cause actuality, is not (Vash & Crewe, 2004). This differ- damage to joints or fragile tissues (Snuggs, ence in appearance and health often elicits negative 2013) and put the student at risk for injury. comments and perceptions from others such as when • Encouraging disability service educators to people with invisible illnesses or disabilities use the work collaboratively with faculty and students accommodations to which they are entitled (e.g., an to develop supportive environments. This accessible parking permit). There is likewise the per- way, faculty learn to understand the need for ception that people with disabilities or illnesses do not student accommodation as well as the process belong in a college or university setting. Chronically of developing reasonable accommodations ill students and students with disabilities may be seen that do not compromise the academic integ- to unnecessarily drain or waste scarce educational re- rity of the institution. Disability services need sources, especially when there is fierce competition to ensure appropriate treatment of the students for funding and enrolment (Jung, 2002; Hutcheon & using their services by faculty and other pro- Wolbring, 2012). Having access to normal life and fessionals within the institution. social activities including attending school, gaining • Allowing students with EDS access to accom- meaningful employment, and maintaining contact modations, such as those outlined by the Uni- with peers are essential for boosting self-esteem and versity of Manitoba (2014), encourages full improving quality of life. participation in the postsecondary academic environment. Suggested accommodations Recommendations for Practice include having note-takers, having profes- sors provide hard-copies of session materials, In this review, the psychosocial and academ- private and confidential conferencing with ic impacts of EDS on post secondary students were professors, permitting the use of computers,, examined. Institutional issues, faculty attitudes, ac- home access to library/resources,, permitting commodations, school attendance, and technology the recording of lectures,, tutoring services, use comprised the most significant academic issues flexibility with deadlines, extra time on exams for postsecondary students with EDS. Psychosocial- and tests, writing exams in a separate space, ly, experiences with stigmas and misperceptions were and flexibility with attendance penalties. found to be the most prevalent themes. • In addition to these more standard accommo- Based on the reviewed literature, several recom- dations, institutions must consider accommo- mendations for improvement to the postsecondary dations that are outside of the norm, includ- experience for students with EDS more generally ing such things as permitting students to lie have been identified. They include: down as needed, to shift positions or stand up in class, and to use varying adaptive/assistive • Increasing faculty knowledge through train- devices (e.g., canes, wheelchairs, neckbraces) ing opportunities to help alleviate some of the without a requirement for disclosure. worry and uncertainty associated with teach- • Advertising available supports and services to ing students with EDS. Increased training re- students with chronic illnesses, like EDS in- lated to chronic illness, such as EDS, in post- cluding access to leadership and mentorship secondary education may also help faculty opportunities on campus. Supports and ser- understand the need to accommodate students vices must address all aspects of campus life with such illnesses. In cases of highly variable (e.g., transportation, housing, extracurricular illnesses, like EDS, an orientation course or and social activities) and not just the academ- workshop on chronic illness in general that ic components. Journal of Postsecondary Education and Disability, 29(4) 415 • Considering enhanced funding and scholar- References ship opportunities as well as academic and career counseling for students with chronic Adib, N., Davies, K., Grahame, R., Woo, P., & Mur- illnesses as per the Higher Education Quality ray, K. (2005). Joint hypermobility syndrome in Council of Ontario (2013) recommendations. childhood. A not so benign multi-system disor- • Utilizing technology-mediated education der? Rheumatology, 44, 744-795. where appropriate (e.g., podcasting lectures, Barazandeh, G. (2005). Attitudes toward disabilities discussion forums, Skype, etc.) to assist stu- and reasonable accommodations at the universi- dents with EDS and other chronic illnesses in ty. The Undergraduate Research Journal, 7, 1-12. full academic participation despite potential Barnes, C. (1999). Disability studies: new or not so new absences. directions? Disability and Society, 14, 577-580. Berglund, B., Nordstrom, G., & Lutzen, K. (1999). Summary Living a restricted life with Ehlers-Danlos Syn- drome. International Journal of Nursing Studies, Currently, chronic illness is not specifically ad- 37, 111-118. dressed in Canada’s provincial and federal legislation Black, N. (2004). Blessing or curse? Distance deliv- that ensures rights of access for persons with disabil- ery to students with invisible disabilities. 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Management of pain and fatigue with disabilities before enrolling in postsecondary ed- in the Joint Hypermobility Syndrome (aka- ucation must self-identify as a person with a disability Ehlers-Danlos Syndrome Hypermobility Type): in order to access the programs and services they need Principles and proposal for a multidisciplinary to ensure academic and psychosocial success. approach. American Journal of Medical Genetics, Since there is an underwhelming amount of exist- 158A, 2055-2070. ing literature on EDS in postsecondary students, liter- Cunningham, M., & Wodrich, D. (2006). The effect ature from chronic illness and disability studies were of sharing health information on teachers’ pro- consulted. It is assumed that the postsecondary expe- duction of classroom accommodations. Psychol- rience for students with EDS is similar to the post- ogy in the Schools, 43, 553-564. secondary experience of students with other chronic Dallas, B., Upton, T., & Sprong, M. (2014). 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To tell or not to tell: the man- Disability in Ontario: postsecondary education par- agement of privacy boundaries by the invisibly ticipation rates, student experience and labour mar- disabled. Paper presented at the annual meeting ket outcomes. of the Western States Communication Associa- Hutcheon, E., & Wolbring, G. (2012). Voices of “dis- tion, San Jose, CA. abled” postsecondary students: examining high- Mayo Clinic. (2009). Teens and autonomic system er education “disability” policy using an ableism dysfunction. Patient Education. lens. Journal of Diversity in Higher Education, Milhorat, T., Bolognese, P., Nishikawa, M., McDon- 5(1), 39-49. nell, N., & Francomano, C. (2007). Syndrome of Jackson, M. (2013). The special educational needs of the occipitoatlantoaxial hypermobility, cranial adolescents living with chronic illness: a litera- settling, and Chiari Malformation type 1 in pa- ture review. 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Collaboration strategies to facilitate suc- Obeng, C., & James, J. (2010). Mothers’ perspective cessful transition of students with disabilities in on caring for school-aged children with chronic a changing higher education environment. New health problems. Journal of Education Research, Directions for Higher Education, 154, 17-25. 4(1), 1-8. Kurth, N. & Mellard, D. (2006). Student perceptions Olney, M., & Brockelman, K. The impact of visibility of the accommodation process in postsecondary of disability and gender on the self-concept of uni- education. Journal of Postsecondary Education versity students with disabilities. Journal of Post- and Disability, 19, 71-84. secondary Education and Disability, 18, 80-91. Larson, P. (2006). Chronicity. In I.M. Lubkin & P.D. Ontario Ministry of Education. (2002). Transition Larson (Eds.), Chronic illness: Impact and interven- planning: a resource guide. tions (6th ed.). Sudbury, MA: Jones and Bartlett. Ontario Ministry of Training, Colleges and Universi- Lumley, M., Jordan, M., Rubenstein, R., Tsipouras, ties. (2015). Online learning. P., & Evans, M. (1994). Psychosocialfunctioning Parapia, L., & Jackson, C. (2008). Ehlers Danlos in the Ehlers Danlos Syndrome. American Journal Syndrome- a historical review. British Journal of of Medical Genetics, 53,149-152. Haematology, 141, 32-35. Martinez, Y., & Ercikan, K. (2009). Chronic illness Rao, S. (2004). Faculty attitudes and students with in Canadian children: what is the effect of illness disabilities in higher education: a literature re- on academic achievement, and anxiety and emo- view. College Student Journal, 38, 191-198. tional disorders. Child: Care, Health, and Develop- ment, 35, 391-401.

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Journal of Postsecondary Education and Disability, 29(4), 407-418 407 The Academic and Psychosocial Impacts of Ehlers-Danlos Syndrome on Postsecondary Students: An Integrative Review of the Literature Catherine M. Giroux1 Julie K. Corkett1 Lorraine M. Carter2 Abstract Ehlers-Danlos Syndrome (EDS) is a complex, often invisible, connective tissue disorder that has arguably profound psychosocial and academic impact on postsecondary students. It is an underdiagnosed and misun- derstood condition that is the focus of little research, particularly within the social sciences. Several factors influence the academic experiences of postsecondary students with EDS, including institutional issues, faculty attitudes, accommodations, school attendance, and technology use. Psychosocially, adjusting to new or chang- ing diagnoses, dealing with the stigmas and misperceptions of others, and the ongoing identity formation of youth are major factors for students. Since there is a notable shortfall in academic literature with the specific focus of EDS in postsecondary education, this review draws from the peripheral fields of chronic illness and disability studies for support. Keywords: Ehlers-Danlos Syndrome, chronic illness, post-secondary, psychosocial, academic barriers Ehlers-Danlos Syndrome (EDS) is a connective dition when he published details of a patient with lax tissue disorder where the body does not produce joints, hyper-extensible skin, and inclination to bruis- proper collagen (Ehlers-Danlos National Foundation ing (Parapia & Jackson, 2008). In 1908, Henri-Al- [EDNF], 2009). Collagen is effectively the “glue” that exandre Danlos, a French physician, suggested that holds the body together, and it directly affects approx- skin fragility and vascularity were cardinal features imately 80% of human systems, including skin, or- of this syndrome (Parapia & Jackson, 2008). The gans, joints, and the nervous and circulatory systems classification of EDS began in the late 1960s when it (EDNF, 2009). There are multiple manifestations of was defined according to nine subcategories (Parapia EDS; the most common are the classical, hypermobil- & Jackson, 2008) that have since been revised to six ity, and vascular types. The vascular form of EDS can main types (EDNF, 2015). result in spontaneous organ rupture and often precludes Many people with this disorder become symp- an average lifespan. The diagnosis rate of the different tomatic as young adults (Adib, Davies, Grahame, types of EDS is presently unknown. However, accord- Woo & Murray, 2005; EDNF, 2009), right around the ing to the EDNF (2015), the prevalence of EDS is esti- time that they are considering or are enrolled in post- mated to be about one in 2,500 to one in 5,000. Using secondary education. Daily dislocations cause many these incidence rates, the EDS population in Ontario, problems for students with EDS in the school setting Canada, for example, can be estimated to be approxi- (Tinkle, 2010). Furthermore, low muscle tone and mately 2,700, given a population of 13.7 million peo- delayed fine and gross motor skills cause individuals ple (Statistics Canada, 2014). Vascular EDS is estimat- with EDS to appear clumsy and uncoordinated (Adib ed to have a prevalence of approximately one in 250, et al., 2005). Many students with this disorder are un- 000 (EDNF, 2015). able to participate normally in physical and regular EDS is not a new disease. In 1901, Edward classroom activities. This circumstance negatively Ehlers, a Danish dermatologist, recognized the con- affects their physical and psychosocial development. 1 Nipissing University; 2 McMaster University 408 Giroux et al.; Ehlers-Danlos Syndrome Currently, there is limited research on EDS. Of behavioural complications which require meaningful the research that does exist, little of it focuses on ed- and professional involvement” (p. 5). The consensus ucational accommodations and modifications that can is that a chronic illness is a medical condition, dis- help students with their academic and psychosocial ease, or injury that has lasted more than three to six development. Instead, the focus is clinical issues months and has caused an individual to significantly and, thus, serves medical professionals rather than alter his or her day-to-day activities (Repetto et al., students, educators, and support workers (e.g., Adib 2012). Decreased endurance, mobility, or cognitive et al., 2005; Castori et al., 2012; Milhorat, Bolog- functioning results in a limitation of the individual’s nese, Nishikawa, McDonnell & Francomano, 2007; ability to continue his or her usual lifestyle (Wide- Savasta, Merli, Ruggieri, Bianchi & Sparta, 2011). No man-Johnston, 2015). An individual with chronic ill- studies have been found in which the relationship be- ness is never cured. tween EDS, emotional and social development, iden- Because there is no specific literature on the psy- tity formation, and academic achievement are exam- chosocial and academic development of postsecond- ined. As such, there remains a large gap in the body ary students with EDS and limited literature on the of knowledge about this disease and the postsecond- topic of chronic illnesses and postsecondary educa- ary student experience. Moreover, because EDS and tion, the literature of disability studies was considered its co-morbidities are under-recognized in the general in this review. Furthermore, as the rights of individ- population, there is a systemic lack of awareness of the uals with chronic illness are governed by the same accommodations required for students with this condi- legislation as disabilities, many of the examples cited tion. Even in the broader context of chronic illness and within the disability studies literature can be applied postsecondary education, there are few resources. In to people with chronic illnesses as well. While EDS is short, students with chronic illnesses, such as EDS, are a chronic illness by definition, many of its symptoms an under-studied, under-represented population in the result in temporary or long-term disablement; thus, postsecondary environment. within the body of the paper the terms chronic illness This literature review builds around two over- and disability are both used. As further context to the arching interconnected themes: academic consider- review, as appropriate, the ideas presented within the ations and psychosocial considerations. Within these aforementioned sub-sections will focus on issues and themes, specific subcategories are explored. They barriers with recommendations and strategies out- include institutional issues, faculty attitudes, accom- lined in a Summary section. modations, school attendance, technology, and stig- mas and (mis)perceptions relating to chronic illness. Legislation Before relevant literature in these areas is explored, In Canada, Section 15(1) of the Charter of Rights essential terminology is explained and a number of and Freedoms (1982) stated the following: key ideas drawn from Federal and Provincial legisla- tion are offered as important context. The grounding Every individual is equal before and under the theoretical framework is also presented in advance of law and has the right to the equal protection and the literature itself. equal benefit of the law without discrimination and, in particular, without discrimination based A Note on Terminology Use on race, national or ethnic origin, colour, religion, The terms chronic illness and disability are not sex, age, or mental and physical disability. interchangeable nor are the concepts mutually ex- clusive. The United Nations (2007) used the term Notably absent from the above statement is mention disability to apply to all persons with disabilities in- of geography. Hence, accommodations for persons cluding those who have long-term physical, mental, with disabilities enrolled in postsecondary institu- intellectual, or sensory impairments, which, in in- tions varies according to where the student lives. Ad- teraction with various attitudinal and environmental ditionally, the Charter is quite broad and, therefore, barriers, hinder the person’s full and effective partic- open to interpretation when accommodations for ipation in society on an equal basis with others. The persons with disabilities are developed and regulated term chronic illness is less formally defined. Larson (Black, 2004). Further, health status and chronic ill- (2006) defined chronic illness as “an ongoing medical ness are not mentioned specifically in this legislation, condition with a spectrum of social, economic, and thus generating questions about how they should be Journal of Postsecondary Education and Disability, 29(4) 409 addressed and accommodated. By comparison, in the Academic Considerations United States of America, the passing of Section 504 For the purposes of this review, the term academic of the Rehabilitation Act of 1973 allowed, for the first considerations is used to refer to logistical concerns time, many people with severe limitations to enter that affect learning within the postsecondary educa- higher education (Stephens & Norris-Baker, 1984). tional setting. These concerns include but are not lim- At the provincial level, in Ontario, important ited to institutional issues, faculty attitudes, accom- strides have been made that mandate accommodation modations, school absence, and technology. of persons with disabilities. In 2001, the Ontarians Institutional issues. Recent research indicates that with Disabilities Act was passed. It requires the gov- more than half of Americans experience at least one ernment and wider public sector including colleges, chronic illness (Goodwin & Morgan, 2012). Despite universities, hospitals, and school boards to devel- the challenges that persons with chronic illnesses face, op accessibility plans (Ministry of Community and they can be highly productive members of the academic Social Services, 2013). In 2005, the Government of community. The key to their success lies in institution- Ontario passed the Accessibility for Ontarians with al policies and practices that ensure equity and support Disabilities Act; the aim of this act is to make Ontario productivity. In a 2005 postsecondary report entitled barrier free for individuals with disabilities (Mullins “Ontario: A Leader in Learning,” the following direc- & Preyde, 2012). Additionally, according to the On- tives were set out: tario Human Rights Commission, service providers must take the needs of persons with disabilities into Require institutions to reach out to students with account and remove all existing barriers to services disabilities at their schools and in their commu- like education. nities to ease the transition to postsecondary ed- ucation. Provide funding for enhanced academic Models for the Conceptualization of Disability, and career counseling on campus. Allow for the Illness, and Health: Biopsychosocial Model evolution of centres of research and service ex- cellence and distribute funding to institutions for The biopsychosocial model of disability, illness, supports and services on the basis of the size of and health grounds the examination of the academic a given institution’s population of students with and psychosocial considerations required for students disabilities. (Higher Education Quality Council of with chronic illnesses including EDS. The biopsycho- Ontario, 2013, p. 1) social model suggests a complex interaction of bio- logical, psychological, and social factors that play a Each of the above touches on a major facet of the is- significant role in an individual’s ability to function sue of access to postsecondary education for persons (Falvo, 2014). Conceptualizing chronic illness and with disabilities and/or chronic illness. According to disability as health conditions that affect functional Jung (2003), in postsecondary education, accessibili- capacity allows for increased understanding of in- ty refers to “the institution’s legal obligation to create dividual experiences of such health conditions. The genuine learning opportunities for people with dis- World Health Organization (WHO, 2014) accepted abilities to participate in all aspects of university life” the biopsychosocial model as the dominant approach (p. 92). The duty to accommodate requires the institu- to understanding disability and health. The WHO ac- tion to take an active part in modifying practices, fa- knowledges that all persons may experience elements cilities, and/or services that prevent the inclusion and of disability over the course of a lifetime through participation of students with disabilities who are oth- changes in health or environment and the impact of erwise qualified to attend school. In addition to bigger the disability/health condition on the functioning of picture issues such as inadequate funding to reach out an individual. Just as people vary in relation to their to students with chronic illness and make systemic functional capacity, people vary in their personal and structural changes, other more subtle barriers also resources, access to social supports, and abilities to hinder the full participation of students with chron- cope (Falvo, 2014). Through the application of the ic illnesses. Some of these barriers include a lack of biopsychosocial approach, an understanding of dis- faculty and peer awareness; lack of participation in ability and health that incorporates all aspects of an academic and non-academic discourse; and financial, individual’s life experience will be obtained. time, and other resource constraints (Hutcheon & Wolbring, 2012). Each of these barriers is problemat- 410 Giroux et al.; Ehlers-Danlos Syndrome ic since they lead to diminished postsecondary school Accommodations. People with chronic illnesses experiences and negative effects on students’ beliefs, represent a significant proportion of the population of identities, and self-concept. persons with disabilities (Jung, 2003). Most students Faculty attitudes. According to Jackson (2013), with chronic illnesses like EDS depend on disability educators may be uncomfortable dealing with students policies and supports in order to access the same post- with chronic illness because they lack knowledge and secondary educational opportunities as their non-dis- understanding of specific conditions. In the case of abled peers (University of Manitoba, 2014). For some, a chronic illness, the faculty member must feel ade- making higher education more accessible and includ- quately prepared to help the student. Faculty attitudes ing previously excluded groups in the classroom are and responses can dramatically affect the academic perceived as disruptive and even threatening to the success of students with chronic illness. How open existing institutional order of the university (Hutcheon faculty is to learning about different medical condi- & Wolbring, 2012; Jung, 2003). Students who receive tions and modifications and accommodations that academic accommodation as a result of a chronic ill- support their students with such illness is particularly ness may also be the target of resentment on the part important. Faculty who are positive and approachable of their peers because accommodations may be seen as help students with chronic illnesses to feel secure and unfair despite the fact that, in reality, accommodations included in their learning environments. Too often, correct inequitable outcomes of social arrangements there is a level of skepticism about chronic illness on (Jung, 2003). the part of faculty that students need to overcome in Students with chronic illnesses, like EDS, experi- addition to their other challenges. ence unique issues that often require specific and tar- Perceptions of negative attitudes by faculty may geted educational accommodations. In a study com- prevent students with chronic illnesses like EDS from paring young adults with childhood onset of chronic disclosing their health situations, using self-advocacy illness with their healthy peers, those with chronic skills, and requesting accommodations (Rao, 2004; illness experienced lower rates of high school grad- Sachs & Schreuer, 2011). In a survey conducted by uation, college attendance, college graduation, and Sachs and Schreuer (2011), 50% of students with dis- employment (Maslow, Haydon, McRee, Ford, & abilities indicated that faculty members understood Halpern, 2011). Better educational accommodations their needs but only 25% of faculty members were in secondary school and an increased emphasis on willing to help accommodate them. In an effort to cap- the transition to postsecondary education for students ture the faculty perspective, Bruder and Mogro-Wil- with chronic illnesses might encourage students re- son (2014) examined faculty awareness and attitudes quiring accomodations to enroll in postsecondary towards students with disabilities. While their study degree or diploma programs and experience success was limited to one university and to disabilities in (Haas & Fosse, 2008). In Ontario, transition planning general, their study consisted of 2,056 faculty and for students moving from secondary school to post- graduate students. Despite the fact that half of the secondary education is part of a student’s Individual faculty reported having a student with a disablity in at Education Plan (IEP) (Ontario Ministry of Education least one of their classes, faculty members still report- [OME], 2002). If the student does not have an IEP, he ed feelings of pity, akwardness, embarrassment, and or she will likely not have a transition plan in place admiration for students with disabilities. Within the prior to graduation from secondary school. classroom the majority of faculty members provided While students with EDS have needs similar to accommodations to students with disablities. Howev- those of students with disabilities, they also have er, 7% of the faculty viewed the provision of accom- unique challenges and issues that may require devi- modations as inconvenient, disruptive, and caused ation from the standard academic accommodations feelings of unfairness in other students. Furthermore, typically provided in the postsecondary institutional 59% of the faculty were uncertain as whether students setting (Korbel, Lucia, Wenzel, & Anderson, 2011). with disablities were being fairly treated by the uni- Often students do not realize that they are allowed to versity, with 18% stating that the university was do- advocate for themselves and ask for different accom- ing a poor job including students with disabilities in modations if the ones in place are ineffective (Kurth social organizations and co-curricular activities. Oth- & Mellard, 2006). Kurth & Mellard examined how er findings indicate that faculty may be reluctant to postsecondary students with disabilities perceived the provide certain accommodations for fear of lowering accommodations available at 15 community and tech- academic standards (Barazandeh, 2005). nical colleges in California, Minnesota and Kansas. Journal of Postsecondary Education and Disability, 29(4) 411 Their findings suggest that the accommodations of- commodate multiple student needs is the practice of fered to postsecondary students who have disabiltiies Universal Design (UD). UD is a philosophy and set are often ineffective and inappropriate because the of principles that relate to the structuring of teaching accommodations focus on the disability rather than and course design (Davies, Schelly & Spooner, 2013). on the students’ contextual and functional needs. For While primary and secondary school environments example, a common accommodation offered to stu- have adopted some of the practices of UD, postsec- dents is writing tests and examinations in an alterna- ondary institutions have been slower in adopting this tive location. While this accommodation meets the design. This slow uptake may be due to the fact that academic needs of a student, the student may feel iso- faculty rarely have formal teacher training. Hence, lated from classmates. Thus, accommodations must unless institutions offer specific UD workshops, it is be examined to ensure that they are meeting both ac- unlikely that faculty will have experience in designing ademic needs as well as the student’s personal needs. courses using its principles (Dallas, Upton, & Sprong, The postsecondary students in Kurth and Mellard’s 2014). Incorporating UD into higher education re- study also stated that independence was one of the quires an institutional shift from the individualized most important factors when selecting an accommo- nature of accommodation to training opportunities for dation. While adaptive technology (e.g., computers, faculty in the use of UD. tablets, voice-to-text, text-to-voice) provides academ- Perhaps there has been a lack of emphasis on ic independence, accommodations were not provided training faculty to work with students and colleagues to ensure that the participants were able to maintain with chronic illnesses and disabilities because people independence in terms of transportation, extracurricu- with disabilities/chronic illnesses comprise a small lar activities, housing, and accessible facilities. Over- minority of the overall postsecondary population. all, Kurth and Mellard conclude that while postsec- Barnes (1999) noted the following: ondary institutions are meeting their legal obligations a greater focus must be given to the entire context of The current presentation of disability in universi- student life by incorporating system wide universal ties fosters the notion that disability is an individ- design concepts. ual or family ‘problem’; that the disabled voice is At the postsecondary level, it is the responsibili- absent from the curriculum; that disabled people ty of the student to self-advocate to ensure his or her are objectified as a result; that there is a lack of needs are being appropriately met. While many ser- critical analysis and that this is due to the absence vices are often available within institutions, the stu- of disabled scholars and researchers within uni- dent must still advocate for him or herself in order versities. (p. 567) to receive appropriate accommodations. Additional- ly, while students generally have the opportunity to Although Barnes’ remarks are a valuable commen- select accommodations from a list of possibilities, it tary, it is also possible that there is a presence of dis- is their responsibility to work with faculty and dis- abled scholars and researchers in the academy who ability service professionals to tailor them to their cir- choose not to disclose their disabilities or chronic ill- cumstances (Kurth & Mellard, 2006). Further, facul- nesses. Making a systemic change, like institutional ty have different interpretations of accommodations. implementation of UD, could help all students since Thus, students must communicate with their instruc- individual learning needs and styles are recognized tors to ensure that their needs are being met while the and valued in the UD context. Furthermore, accom- integrity of the postsecondary institution is still main- modations would likely not need to be individually tained (Korbel et al., 2011). Faculty need to recognize sought to the degree they presently are. that no two days will be the same for students with School attendance. A student with chronic ill- chronic illnesses and that some of the most helpful ness may be absent from class due to appointments accommodations are discretion, understanding, and or hospitalizations. As a result they will miss valuable adaptability. learning time and risk falling behind in their studies. A further challenge affecting student success is a Students with a chronic illness are absent, on average, pedagogical one. Faculty often lack the knowledge ten days per academic year compared to a three-day and experience to prepare materials, classes, and absence for those who do not have chronic condi- courses for students with chronic illness. One way tions (Jackson, 2013). This higher rate of absenteeism of designing lessons and classroom activities to ac- contributes to lower levels of academic achievement 412 Giroux et al.; Ehlers-Danlos Syndrome which can negatively affect success in receiving and Psychosocial Considerations retaining bursaries and scholarships. Financial stress, For the purposes of this review, the social and health stress, social isolation, and slower maturation emotional impacts of chronic illness on postsecondary are all negative outcomes of prolonged absence (Mar- students will be examined under the broad category of tinez & Ercikan, 2009; Maslow, Haydon, McRee & “psychosocial considerations.” Social and emotion- Halpern, 2012). As health declines, so too does ac- al considerations are, arguably, linked in the case of ademic achievement and school attendance (Haas & EDS in an academic environment. Health conditions Fosse, 2008). can trigger significant change, resulting in stress asso- Technology. As noted previously, students with ciated with psychological turmoil and physical imbal- chronic illness tend to be absent from school more ance as individuals adjust to lifestyle changes, loss of frequently than their healthy peers. According to control, pain and discomfort, and potential alterations Jackson (2013), there is high value when faculty and in status, independence, and financial stability (Falvo, institutions support the learning of chronically ill 2014). Given that EDS is chronic, painful, and poten- students during periods of absence. By continuing tially disabling, it follows that it may include some to complete course requirements at home, the stu- degree of psychosocial impairment (Lumley, Jordan, dent will be aware of what is being covered in class Rubenstein, Tsipouras & Evans, 1994). and be better prepared when he or she does return to Many people with EDS experience co-morbidities school. Another possible solution to allay concerns like dysautonomia, a disorder of the autonomic ner- about absence is enabling students who are unable vous system function that can be local or generalized, to physically attend class to interact with their peers acute, or chronic (National Institute of Neurological and the course material through various new technol- Disorders and Stroke, 2013). One of the effects of this ogies (e.g., podcasting lectures, discussion forums, co-morbidity is orthostatic intolerance (Mayo Clinic, Skype sessions, webinars). Increasing opportunities 2009), which affects recreation and social develop- for distance and online education education are being ment. Students with EDS and various co-morbities offered through Canadian postsecondary institutions may find it harder to participate in common postsec- (Ontario Ministry of Training, Colleges and Univer- ondary social settings including going to the gym and sities, 2015). Wilkie (2011) asserted that the impacts going out with their peers. Socialization is important and implications of chronic illness on students deny since studies show that students with friends and so- them the normal social interactions of school. In these cial supports recover more quickly from illnesses and cases, technology-mediated education may be a vi- are healthier overall than those who are isolated from able option for facilitating learning and socializing. peers and classmates (Ryan, 2001; Wentzel, Barry, & Web cams, voice and video streaming, along with Caldwell, 2004). This finding suggests how substan- other technologies including asynchronous course tive the effect of EDS and related conditions is on dai- methods, can help students who are in hospital or re- ly functioning and how important accommodations covering at home to stay engaged in their coursework and a normalized social context are. (Jackson, 2013). While there are ethical factors such In addition to the physical aspects of EDS that af- as gaining consent from all other students to appear fect an individual’s social and emotional wellbeing, on video, technology has emerged as an important how individuals view their conditions, causes, and means of providing engagement and socializing op- implications greatly affects their social interactions portunities for the EDS student at home. These new- (Falvo, 2014). The diagnostic process for EDS is a er forms of technology provide wonderful flexibility significant predictor of reaction as well; reactions of and new opportunities for people who were previous- grief, fear and anxiety, anger, depression, and guilt are ly marginalized, limited, and prevented from seeking common following diagnosis (Smart, 2012). The lack educational experiences through alternative models of obvious disease in relatively high functioning of (Black, 2004). people with EDS may lead physicians to suggest psy- chiatric diagnoses rather than physical or medical ones (Lumley et al., 1994). When these reactions are expe- rienced simultaneously, they can affect the emotional state of a student pursuing a postsecondary education. Positive social interaction and interpersonal support can help students with chronic illness to offset some of Journal of Postsecondary Education and Disability, 29(4) 413 this emotional turmoil. Conversely, health conditions set of psychosocial implications than a visible dis- can lead to a change in social status whereby students ability or illness does. Because there are no apparent with chronic illnesses may find themselves in a socially outward physical signs to indicate limitations, others devalued role (Falvo, 2014). Social isolation can easily have no basis on which to alter their expectations precipitate an emotional spiral. regarding the functional capacity of the individual Although many young people cope well with the (Falvo, 2014). In this situation, there is often a need emotional aspects of having a chronic illness, many to “prove” the validity of the illness because it is not chronically ill young people are likely to have a low- immediately visible to others. Many individuals with er level of emotional wellbeing than their healthy invisible illnesses and disabilities have remarked that peers (Herts, Wallis, & Maslow, 2014; Yeo & Sawyer, “you get tired of defending yourself all the time” 2005). This circumstance makes sense given the vari- (Smart, 2012). ous physical symptoms of chronic illnesses, including Conversely, with an invisible illness or disabili- the following: ty, the individual has the ability to fully control his or her identity since there is no visible “evidence” of • Fatigue and limited physical endurance due to disability (Olney & Brockelman, n.d.). In a study con- the drain of energy on the person’s body or the ducted by Olney and Brockelman, students with visi- presence of chronic pain; ble disabilities appeared to have integrated disability • Fluctuating capacity to participate in daily ac- into their identities to a greater degree than those who tivities due to exacerbations and remission of had invisible disabilities. The researchers also discov- the disease itself; ered that, if students with disabilities felt that faculty • Difficulty concentrating due to emotional fac- viewed them as competent, they would be more likely tors, medication side effects, or pain; to disclose their disabilities than otherwise. The poli- • Difficulty with mobility due to inflamed joints, tics of visibility has significant psychosocial impacts limited nerve function, or decreased strength; on postsecondary educational accommodations as • Periods of diminished productivity through- well as relationships with faculty, peers, and the in- out the day; and volved students themselves. • Frequent absence from class. (University of Stigmas and (mis)perceptions. Another dominant Manitoba, 2014, pp. 23-24) theme in the literature pertains to how students with chronic illnesses are perceived by their peers and fac- Chronic illness is particularly frustrating when stu- ulty. Stigma is related to what society considers to be dents feel well enough to complete their studies most deviations from the norm (Falvo, 2014). Often, healthy of the time. It becomes additionally problematic when individuals view those with chronic illnesses as their the limitations of their illness coincide with the time conditions rather than as individuals (Smart, 2012). For needed for preparing assignments, meeting deadlines, the most part, stigmatization occurs because of a lack of and/or taking exams. These frustrations can trigger understanding about the condition. Unfortunately, the negative thoughts and self-perceptions. Chronic ill- power of stigma can overshadow the positive charac- nesses, like EDS, can be a barrier to self-confidence teristics of individuals with chronic illnesses like EDS; and a sense of self-efficacy since it is associated with it can impact self-perceptions and the person’s willing- the risk of failure (Cunningham & Wodrich, 2006). ness to accept or divulge the health condition (Falvo, Feelings of uncertainty, being unable, incapable, or 2014). One of the most significant causes of misper- not good enough result from challenging and unpre- ceptions about students with EDS is the symptom of dictable physical symptoms. They are often exhaust- easy bruisability which is often misconstrued as abuse. ing and have significant and longstanding emotional An altered body image because of scarring and the use impacts (Falvo, 2014). of adaptive equipment (e.g., braces and mobility aids) Another important psychosocial consideration is may add to feelings of stigmatization (Berglund, Nord- the invisibility of EDS. Matthews (1994) defined in- stron, & Lutzen, 1999). visible disability as “one that is hidden so as not to Stigmatization is a characteristic of postsecondary be immediately noticed by an observer except under life and is particularly prevalent in cases of invisible unusual circumstances or by disclosure from the dis- illnesses or disabilities. People with invisible illnesses abled person or other outside source” (p. 7). Having or disabilities often receive negative comments about a chronic illness that is not visible leads to different their disability. Comments can range from belittling 414 Giroux et al.; Ehlers-Danlos Syndrome comments about the severity of their issues to com- provides fundamental information about how ments that suggest that people with disabilities are to manage the health problems associated with bad, unstable, or incapable. In an effort to avoid stig- the illness can be beneficial (Obeng & James, ma, individuals with chronic illnesses may deny, min- 2010). In the case of EDS, the training should imize, or ignore their condition and/or management address the fact that certain activities like plans (Falvo, 2014). Invisible illnesses, like EDS, can repetitive motions and daily activities (e.g., be very difficult interpersonally because the person carrying heavy books, note taking, standing with EDS appears to be healthy when he or she, in or shifting positions in class, etc.) may cause actuality, is not (Vash & Crewe, 2004). This differ- damage to joints or fragile tissues (Snuggs, ence in appearance and health often elicits negative 2013) and put the student at risk for injury. comments and perceptions from others such as when • Encouraging disability service educators to people with invisible illnesses or disabilities use the work collaboratively with faculty and students accommodations to which they are entitled (e.g., an to develop supportive environments. This accessible parking permit). There is likewise the per- way, faculty learn to understand the need for ception that people with disabilities or illnesses do not student accommodation as well as the process belong in a college or university setting. Chronically of developing reasonable accommodations ill students and students with disabilities may be seen that do not compromise the academic integ- to unnecessarily drain or waste scarce educational re- rity of the institution. Disability services need sources, especially when there is fierce competition to ensure appropriate treatment of the students for funding and enrolment (Jung, 2002; Hutcheon & using their services by faculty and other pro- Wolbring, 2012). Having access to normal life and fessionals within the institution. social activities including attending school, gaining • Allowing students with EDS access to accom- meaningful employment, and maintaining contact modations, such as those outlined by the Uni- with peers are essential for boosting self-esteem and versity of Manitoba (2014), encourages full improving quality of life. participation in the postsecondary academic environment. Suggested accommodations Recommendations for Practice include having note-takers, having profes- sors provide hard-copies of session materials, In this review, the psychosocial and academ- private and confidential conferencing with ic impacts of EDS on post secondary students were professors, permitting the use of computers,, examined. Institutional issues, faculty attitudes, ac- home access to library/resources,, permitting commodations, school attendance, and technology the recording of lectures,, tutoring services, use comprised the most significant academic issues flexibility with deadlines, extra time on exams for postsecondary students with EDS. Psychosocial- and tests, writing exams in a separate space, ly, experiences with stigmas and misperceptions were and flexibility with attendance penalties. found to be the most prevalent themes. • In addition to these more standard accommo- Based on the reviewed literature, several recom- dations, institutions must consider accommo- mendations for improvement to the postsecondary dations that are outside of the norm, includ- experience for students with EDS more generally ing such things as permitting students to lie have been identified. They include: down as needed, to shift positions or stand up in class, and to use varying adaptive/assistive • Increasing faculty knowledge through train- devices (e.g., canes, wheelchairs, neckbraces) ing opportunities to help alleviate some of the without a requirement for disclosure. worry and uncertainty associated with teach- • Advertising available supports and services to ing students with EDS. Increased training re- students with chronic illnesses, like EDS in- lated to chronic illness, such as EDS, in post- cluding access to leadership and mentorship secondary education may also help faculty opportunities on campus. Supports and ser- understand the need to accommodate students vices must address all aspects of campus life with such illnesses. In cases of highly variable (e.g., transportation, housing, extracurricular illnesses, like EDS, an orientation course or and social activities) and not just the academ- workshop on chronic illness in general that ic components. Journal of Postsecondary Education and Disability, 29(4) 415 • Considering enhanced funding and scholar- References ship opportunities as well as academic and career counseling for students with chronic Adib, N., Davies, K., Grahame, R., Woo, P., & Mur- illnesses as per the Higher Education Quality ray, K. (2005). Joint hypermobility syndrome in Council of Ontario (2013) recommendations. childhood. A not so benign multi-system disor- • Utilizing technology-mediated education der? Rheumatology, 44, 744-795. where appropriate (e.g., podcasting lectures, Barazandeh, G. (2005). Attitudes toward disabilities discussion forums, Skype, etc.) to assist stu- and reasonable accommodations at the universi- dents with EDS and other chronic illnesses in ty. The Undergraduate Research Journal, 7, 1-12. full academic participation despite potential Barnes, C. (1999). Disability studies: new or not so new absences. directions? Disability and Society, 14, 577-580. Berglund, B., Nordstrom, G., & Lutzen, K. (1999). Summary Living a restricted life with Ehlers-Danlos Syn- drome. International Journal of Nursing Studies, Currently, chronic illness is not specifically ad- 37, 111-118. dressed in Canada’s provincial and federal legislation Black, N. (2004). Blessing or curse? Distance deliv- that ensures rights of access for persons with disabil- ery to students with invisible disabilities. 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