Let’s Talk about Your Disability: Issues of Disclosure
As students with non-apparent disabilities join education abroad programs, they will have many opportunities to decide whether, when, to whom and how they will disclose that they have a disability.
Opportunities for disclosure may arise before, during or after the application process, while preparing for the program, and while studying abroad. Many programs now include questionnaires or medical forms that ask specific questions related to disability conditions. For example, Youth for Understanding USA, which sends several hundred high school students abroad each year, asks disability-related questions in three different places “because the student may define it in different ways,” according to Kathryn Hanrahan, Admissions Counselor Specialist.
Reasons Not to Disclose
It is difficult to determine how many students decide not to inform education abroad programs that they have a disability. Exchange program alumni, who didn’t disclose their disability because they didn’t need accommodations or feared they would not be accepted or allowed on the program, can provide insight into why some students take the non-disclosure approach.
Lisa Baum opted not to inform her exchange program that she had a learning disability: “I had become quite adept at compensating for my disability. As long as I was able to use computers and didn’t have to write anything by hand, I could get away without anyone knowing.” Although Baum used accommodations for her studies in the United States, she didn’t request any accommodations while studying in England. “I never kept any secrets, and if the question had been asked on the forms I probably would have put down ‘learning disability.’ But I didn’t feel I needed anyone to help me out. I always managed to do average or above average work. If I was really struggling with my classes and couldn’t get by without seeking the help, then I would [ask for help].”
Students with other disabilities shared similar reasons for not disclosing their disability: they believed that they would be able to make necessary compensations on their own. However, they stated that they would have been willing to share information about their disability if they had been asked directly, or if they had needed services while abroad. Shelly Shinebarger, a disability service provider at Union College, noted that many students keep their disability conditions private, managing independently without utilizing resources available on their U.S. campuses. For a variety of reasons, almost two-thirds of post-secondary students with disabilities do not receive accommodations from the colleges they attend, in part, because half of them do not consider themselves a person with a disability. Another 7% do not tell college faculty or staff about the disability even if they do self-identify.
Marta Lujkan, a student with psychiatric and other disabilities who studied abroad for an academic year in Australia, decided not to disclose to the program in part because she felt she could meet her accommodation needs on her own without involving formal service providers. For example, Lujkan requested a single room rather than a shared living space to accommodate her medication schedule, her need for privacy and personal time, and her varied sleeping patterns. The university obliged her request without knowing that it was disability-related.
Under U.S. laws, students are not required to report a disability, but they must disclose and document their disabilities in order to receive disability-related accommodations.
In retrospect, Lujkan acknowledged that she would have disclosed her disabilities to the university prior to arrival in Australia because it would have meant less work and stress on her part. The study abroad advisors could have assisted her in planning for medications while abroad, explaining reasons for missing classes due to fatigue or stress, and accessing services in Australia rather than relying on a therapist back home in the United States.
Under U.S. laws, students are not required to report a disability, but they must disclose and document their disabilities in order to receive disability-related accommodations. Many people make strategic choices not to discuss their disabilities or the accommodations that they will need until after they have been accepted to the program. However, many accommodations require some time to arrange, and exchange program providers strongly urge students to report their disability and access needs as soon as possible during the preparation stage. In some situations, it may be relatively simple to make disability-related arrangements while the student is already on the program. On the other hand, if a student waits until a disability-related need arises during the program, it may be difficult to arrange the necessary accommodations or support services in time to be effective. For example, it may be fairly easy to arrange a quiet area for test taking, but more problematic to obtain a medication on short notice that is restricted or hard to find in the host country.
Photo Caption: Many study abroad offices have begun to share lists of their study abroad participants with disability and counseling offices on their home campuses. Then the counselors at these offices can bring up the subject of study abroad with the student directly to assess if accommodations will need to be arranged abroad, without revealing who has a disability to the study abroad office. Other study abroad offices are automatically including disability information in student handbooks and general orientations, such as how they see patterns in students with depression feeling better initially when overseas, going off their medications, and often encountering issues as a result.
Some students admit that fear of not being accepted, or not being allowed to go on the program even after acceptance, is what holds them back from disclosing their disability. This is especially common among individuals with chronic mental or physical health issues. Hailey McKenzie, who has diabetes, was reluctant to discuss her condition with her exchange program. When she finally brought it up to her administrator and counselor, they said it was fine if she was healthy and knew how to manage her diabetes. “I did have to go to a review board of three people and talk to them and answer questions. They brought up different scenarios, and I explained that since it was the U.K., they speak English and are a developed country, I would be able to explain and get what I needed.”
“It’s rare that we think someone really shouldn’t go [because of a disability],” says Catharine Scruggs, a program director at Council on International Educational Exchange (CIEE), which sends students abroad from U.S. campuses. When a student indicates on a CIEE questionnaire that he or she is taking medications or has a health condition, CIEE consults with the student’s health professional about whether the student could successfully study abroad. Most often, they say yes. “If so, we don’t need to question further. It’s only when students don’t answer questions completely that we ask more questions,” says Scruggs.
Hailey McKenzie, who has diabetes, was reluctant to discuss her condition with her exchange program. When she finally brought it up to her administrator and counselor, they said it was fine if she was healthy and knew how to manage her diabetes.
On the other hand, responses from some overseas hosting institutions may be less favorable, unless the U.S. institutions talk with them in advance about misconceptions. In some cases, leveraging personal relationships or connections to the host institution may be more effective. “One school in Japan decided that they weren’t comfortable with hosting [one of our students] because he indicated on his forms that he was on medications for bipolar disorder,” recalls Shinebarger. “When that happened, the student contacted me in the disability office. We found out that the [Japanese] school had said ‘no’ because they had had a negative experience with another person with bipolar disorder in the past. They didn’t want that to happen again.”
The disability office at Union College asked the Japanese school to look at the student individually, rather than drawing a generalization based on experience with one person with the same disability, and wrote letters of support for the student. “In the case of this student, we had no reason to believe he would have difficulty, but the Japanese school still wanted to say ‘No.’” Union College did not want to continue a contractual or programmatic relationship with a school that would not accept a qualified student because of a disability. In the end, however, a personal connection also added weight to the student’s case. “The student had an uncle who knew someone at the school in Japan, and the uncle pushed and pressed. I think it was one of the reasons they finally said, ‘Yes.’”
Deciding to Disclose
Some students with non-apparent disabilities advocate for disclosure. “If I expect [the program] to fully include me, then I need to provide them with as much information as possible, ” says Betsy Valnes, who has a brain injury and has participated in several short-term experiences overseas. “[Because I have explained] my reasons for fatigue, I have never had a host family or a program coordinator who disputed my need to excuse myself for a while. It would have been completely different if they didn’t know why I needed to rest. That’s why it is so important to disclose, because [in my experience] people are more understanding when they know why.”
Once a student discloses her or his disability, the exchange program is only permitted to share that information with other parties on a “need to know” basis.
By U.S. law, a student does not have to specify what his or her disability is when requesting an accommodation from professors, although they must provide professional documentation that shows they need the accommodations. However, some students find it is more useful to explain fully their disability. On her various international exchange experiences in high school and college, Allegra Johnson found teachers and professors to be very understanding when they knew that she had arthritis. “They were more cognizant of the activities that I might not be able to do and kept [my situation] in mind when choosing activities,” says Johnson. “If I hadn’t disclosed fully about my disability, then it would have been a lot harder on me. I would have had to explain about how I was feeling day by day or my lack of ability to do certain things.”
Students often will find support as well when telling roommates or friends about their disability, both to address questions that arise about behavior or routines, and to inform them in case a medical emergency arises. “My roommates and the program coordinator knew I had diabetes, just in case anything was to happen,” says Chris Opsal, who studied in London. “Other than that, no one knew, except for noticing that I ate oranges all the time.” As a teen, Joshua Chen, who has autism, traveled in Wales on a sports ambassador program. His roommate knew about his disability, and that Joshua has difficulty keeping track of time, and the roommate assisted Joshua by reminding him about when it was time to eat lunch or go to sleep.
Photo Caption: Students also need to consider their access needs outside of the classroom as the study abroad experience includes many excursions, field trips and free time to explore the host country.
Some exchange participants found that by disclosing their disability, they learn that others have non-apparent disabilities too. Jennifer Marshall, who has a brain injury, met a student with dyslexia on an exchange to Quebec, Canada, who, like Marshall, was permitted extra time to complete assignments as a disability-related accommodation. “It made me feel better that I wasn't in it alone, that other people may require different timelines as well,” says Marshall.
Similarly, Patrice Salmeri, who works with students who have at least six months recovery from drug or alcohol use, suggests disclosing one's disability to avoid peer pressure abroad, and finding a program with at least one other participant with similar concerns. “With five people from our [recovery] program on a recent study abroad trip to France, they had a really good support system,” says Salmeri. “Since it wasn’t until they got to Paris that they could find Alcoholics Anonymous (AA) meetings, the five of them were able to hold their own mini AA meetings when traveling throughout the rest of France. They could continue to provide support and encouragement for each other, which helped when there was drinking on the trip among the other participants on the program.”
On her various international exchange experiences in high school and college, Allegra Johnson found teachers and professors to be very understanding when they knew that she had arthritis.
Once a student discloses her or his disability, the exchange program is only permitted to share that information with other parties on a “need to know” basis. Disability service provider Shinebarger recalled that when a student with Asperger’s Syndrome participated on a study abroad program, “We confidentially informed one faculty member who was leading the program. He never brought it up with the student, but he kept an eye on whether the student was becoming stressed or uncomfortable.” It is important that exchange programs discuss and define confidentiality with overseas counterparts, since these on-site staff may be unfamiliar with the U.S. privacy laws and may not understand with whom they can and should share information.
Sometimes, especially in small groups that travel together, a student may choose to tell fellow participants about his or her disability if it can be helpful in making accommodations work. “Sometimes the professor was lecturing in a noisy place in the middle of the city, so I didn’t catch all the information, and I had to ask for information I missed because of the distractions. [The other students] were always willing to help,” says Alison LePage, who has a learning disability and studied abroad in Europe. “When I was in high school I never told other people, but now that I’m in college I realize that I can help people by talking about my disability openly. I would not recommend just announcing it, but speak up if you don’t understand program materials. I used to assume people won’t want to hear about [my disability], but mostly people are supportive.”
When Disclosure Isn’t Enough
Following up on requests for accommodations or services should be standard procedure after initial disclosure. “I did two summer study abroad programs for six weeks each through my high school. The Spanish high school teacher who was on the programs did what was necessary [to accommodate my access needs], but the language immersion schools didn’t,” says Kristin Faudree. “I probably should have made sure that my high school had told the schools in Mexico and Costa Rica that I had a learning disability, and that I would need some extra time.”
Ensuring that information is sent through the proper channels can be difficult if no systems exist for providing disability accommodations. This was true in the Latin America countries where Faudree studied; a place where disability-related assistance is more frequently provided by family or community organizations rather than the educational institutions or the government. Some non-apparent disabilities are not widely recognized, and overseas institutions may not accept, understand or know how to fulfill requests for accommodations.
"I think it is important for people to advocate for themselves – that is key. People are not going to be successful at receiving the resources they need, if they don’t communicate what is needed.” Alison LePage
Students should follow-up with instructors or staff in the host country, and should know who the designated contact person is if accommodations aren’t working while abroad. “It’s wasn’t enough to say ‘I have ADD [attention deficit disorder], this is what I need’ and leave it at that. The professors got my accommodation letter [from the U.S. college] and knew the situation, but didn’t ask me about it or talk with me about it. A couple of the professors were a little confused as to why I had this letter from my college,” says Paula Gieselman who studied abroad at a college in Lithuania. “I talked with professors and told them ‘I’m struggling with this…’ it kept them informed and they were a lot more willing to work with me and give me tips on how to deal with studying differently. In Lithuania disability [accommodations] are not as acknowledged as in the United States. Because I came forward, they acknowledged it more, at least in my case.”
Alison LePage, who has a learning disability and participated in a multi-country art tour of Europe, agrees. “I spoke with the professor and asked if I could talk with him at dinner after tours to make sure I got everything [that I needed]. I think it is important for people to advocate for themselves – that is key. People are not going to be successful at receiving the resources they need, if they don’t communicate what is needed.”
Self-advocacy can counter lack of awareness that may exist abroad concerning non-apparent disabilities, but practice may be required to develop and refine these skills to be diplomatic and effective in a different culture. Emily Holmes, who has Tourette’s syndrome and other non-apparent disabilities, has been a self-advocate since the age of thirteen. “I now know how to talk about my disability to people in Japan and the other participants on the program in a way that makes sense but doesn’t make them feel defensive or scared. I know how to answer their questions, and make it simple and brief. I also know how to ask for what I need. They had never heard of [Tourette’s], but they were very accepting. Once I explained it, they understood.”
Photo Caption: Many of the non-apparent disability associations that are found in the United States, also have chapters overseas. These can be great resources in finding out about the services, attitudes and social networks available in the host country related to a particular disability.
At the beginning of the program, during orientation, Holmes asked for a few minutes to talk to the other participants about her disability since it is fairly uncommon. She also explained that she had more than one disability. Sometimes people assumed that a certain behavior was related to Tourette’s syndrome, when really it was related to her obsessive compulsive disorder. This self-disclosure to others on the program reduced Holmes’ anxiety and created opportunities for others on the program to better understand her access needs.
Some young people with non-apparent disabilities may not have developed skills or gained experience in self-advocacy, cross-cultural sensitivity or talking about their disability. University faculty, program staff, disability offices, parents or peer advocates are valuable resources for learning these essential skills before going abroad. Some U.S. college disability services offices may not see teaching these advocacy skills as within the scope of their work, while others may offer referrals to independent living centers, student groups or other programs in the community that do. Meanwhile, the student may need support in advocating for her or his access needs.
“It’s a good idea for the parent and the student to sit down with the study abroad professionals and give a presentation on brain injury, because it is so misunderstood and often invisible,” says Terese Shelton, whose son acquired a brain injury two years before heading to college. “While I say, ‘Go ahead, be courageous, educate your [study abroad] professors and the administrators, let them know what your needs are,’ my son is not yet [an effective] advocate for himself. It would be good to connect him with other world travelers that have brain injuries and are good advocates.”
Disability service staff can enhance advocacy efforts in other ways. For example, they can write letters of support for the student that can be given to the overseas programs, as Shinebarger of Union College’s disability services did in the case of a student with bipolar disorder who was initially turned down by a study program in Japan. “I [also] contacted the [National Clearinghouse on Disability and Exchange (NCDE)] staff, and asked for advice and if there was anything I wasn’t thinking of,” says Shinebarger. “I ran my letter by the [NCDE] staff, and the organization was very helpful in making sure I was doing everything I needed to do.”
Students with disabilities, their parents, faculty and staff can contact the National Clearinghouse on Disability and Exchange, administered by Mobility International USA and sponsored by the U.S. Department of State, to receive free information, advice, technical assistance and referral as needed regarding international exchange issues. NCDE can also assist with making connections between prospective travelers and exchange program alumni who are individuals with disabilities.
Disclosure of one’s disability is a personal choice that arises at many junctures throughout the process of applying to, preparing for and participating in international exchange programs. Some students with non-apparent disabilities may feel that they do not need to share their disability status, opting to handle any necessary overseas adaptations or accommodations on their own. This can prove to be successful, but students should be aware that accommodations may not be easily or quickly arranged, without advanced time for preparations.
Some individuals with non-apparent disabilities believe that they will not be selected or allowed to participate in exchange programs if they disclose their disability. Other students opt to identify that they have a disability, but only after they have been accepted to the program. Advisors in the United States are becoming more educated about non-discrimination laws, and about successful experiences of students with diverse disabilities. If students encounter resistance from overseas institutions, they are advised to work with their U.S. campuses' disability services and study abroad staff to advocate on their behalf.
Disclosing upfront allows individuals with disabilities to fully communicate what they need, providing accurate explanations about their disability and making plans that will support their success abroad. Students requesting accommodations should plan to follow up on requests, providing additional explanations and if necessary, advocating to ensure that accommodations are put in place. Self-advocacy and diplomacy skills can be important in this process, as well as looking to support systems such as the exchange group, exchange program alumni with disabilities, the study abroad and disability service offices at the home institution, overseas faculty or staff that are supportive and understanding, host families, and the National Clearinghouse on Disability and Exchange.