Compiled by Kristen Witucki, CSP Curriculum and Content Editor
Once a month, the College Success Program hosts a webinar on a topic of interest to high school and college students who are blind or who have low vision, their parents, and the professionals who work with them. In the month of August, we hosted two! You can find the summary of our previous webinar, "A Crystal Ball for Blind/Low Vision Students: A Glimpse Into Your First Semester At College, Part 2" here. In our second webinar of the month, Maureen Hayden, a CSP mentor and doctoral student in marine biology, moderated a panel of mentors, Brilynn Rakes, Sam Van Der Swaagh and Emily Vasile, entitled, "BTW, I Have Low Vision: The Pros and Cons of Self-Identifying Having Low Vision." This webinar discussed the highly sensitive topic of low vision disclosure, whose nuances change depending both on the individual and the situation.
In case you missed it, here are the top takeaways from this informative webinar. You can also view this webinar in its entirety by clicking here.
Two Tales of Disclosure
We began the webinar with a couple of cautionary tales which our panelists volunteered to share.
Brilynn Rakes, who studied dance, felt that she disclosed her low vision too early. During her orientation, when the whole dance program was brought together, she felt proud of her accomplishments thus far and wanted the people she would be working and studying with for the next four years to know her as she was, since orientation is all about getting to know people. However, she discovered later that disclosing her low vision early was a mistake. The program administrators weren't able to focus on her capabilities and some even considered her a liability, they didn't want her to hurt herself or others and consequently didn't give her many of the same opportunities that they gave to other students in the program. If she had waited to disclose her low vision, she could have proven to the administrators that she could participate in the program just like anyone else. Brilynn feels that early disclosure of low vision is appropriate in most situations, but in the arts, which is often competitive, it might not always be a good idea.
Sam Van Der Swaagh offered his story of trying to get through a class without disclosing his low vision. He took a math course which he thought would take place mostly online. He figured he didn't need to bother the professor about his low vision or to request a human notetaker. It turned out that the course was not online, he could have benefitted from the assistance of a notetaker and he did not do well in the course. In retrospect, he felt he should have either been more forthright with the professor or changed courses.
Brilynn feels that in general, it's very important to disclose your low vision to professors and disabilities offices in advance if possible. Professors are extra willing to help a student who shows initiative. Emily points out that a professor may not legally discuss your low vision with colleagues, so it is the student's responsibility to bring up low vision with each instructor. As a professor herself, Emily values receiving descriptions from the students about what they need rather than relying solely on their accommodations letters.
The issue of disclosing low vision professionally can be especially fraught. During job interviews, which are mostly taking place virtually now, our panelists recommend making sure your technology is reliable and your appearance is good on camera. Maureen points out that interviewers may not legally ask you about your low vision, so if you feel it should be discussed, you will need to identify it. Sam says that if someone asks about your low vision, you may sometimes need to give that person grace if you want the job.
Once you are hired, disclosure can still be a source of tension at times. Emily felt that one of her employers worried more about whether she was capable of doing her job once she disclosed her low vision. She recommends asking yourself if you can perform a job without additional accommodations. If you can't, it's important to disclose your low vision early so that you can perform your job well. But if you can, it may be better to wait to disclose your level of vision.
When online dating, Emily did not want to disclose her low vision immediately, because she wanted people to get to know her as herself. Yet she knew that sometimes people could tell from her pictures that her eyes are two different colors and her left eye drifts. Because of that, she got some insensitive feedback from some people, so she learned the hard way it was usually better to disclose her low vision or let some comments go.
Sam feels frustrated when people sometimes fixate on his low vision but he wants to talk about something else. Eventually he learned tactics for helping move the conversation along while still sharing enough info that the person he's talking to will still remember he might not recognize them by sight next time they see each other.
Helping Others Understand Low Vision
Brilynn is color blind, so she explains to others that she sees in gray scale. She prefers to tell people she was born with her low vision and is independent and happy, in order to help others not feel pity.
Sam and Emily often use paintings to explain how they see - for example, when Emily covers one eye, life looks like a Monet paining through the other.
All of our panelists feel that using online simulators of vision loss or creating their own goggles for people to use can be especially helpful.
Changing the Low Vision Channel
All of our panelists agree that talking about low vision all the time can drain them. Emily and Brilynn recommend taking a step back and answering calmly whenever possible rather than feeling emotional about or offended by people's curiosity. Sam prefers to get the conversation off himself by asking what struggles they have or what they enjoy doing. People often move on quickly and remember the next time when he doesn't recognize them that he isn't ignoring them. Maureen prefers to use humor and to tell people how she accomplishes things. For instance, if people feel bad that she does not have a car, she reminders then that she doesn't need to worry about gas or insurance. Overall, our panelists agree that they want people to know them for themselves and how they can contribute to the world.