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Spring 2019

By Cindy Bachofer, PhD, CLVT, TSBVI Low Vision Consultant

Abstract: The Low Vision Conference: Supporting Students with Albinism took place at the TSBVI Conference Center on Friday, May 4, 2018. This article summarizes highlights of the conference and provides links to resources shared with attendees.  This event is the fourth in a series of conferences focusing on students with low vision. The fifth annual Low Vision Conference: Literacy for Students Who Rely on Print will be held on May 3, 2019 at the James C. Durkel Conference Center on campus at TSBVI in Austin.

Keywords: low vision, albinism, self-determination, National Organization for Albinism and Hypopigmentation, NOAH, TSBVI

The focus on May 4, 2018 in the TSBVI Outreach Conference Center was albinism. For an entire day, participants and presenters were able to concentrate on the unique learning and psychosocial needs of students with albinism. Feeling good about yourself when you stand out as unique can be a tricky path, and that day the room was full of a positive energy from professionals, parents and even a few students who were able to attend. This article summarizes conference highlights and notes online resources where you can learn more about albinism.

The opening session titled “Perspectives from Persons with Albinism” was a panel format where four individuals (Alexis, a college freshman; Abe, a video artist; Kelsey, a Vocational Rehabilitation Counselor; and Jasvir, a trainer in insurance sales) shared stories, lessons learned, and challenges on being a person with albinism. The panelists’ ages spanned nearly 3 decades so they brought a wealth of experiences and insight to the discussion. As the session closed with many questions still in the room, audience members had a few minutes to visit individually with panelists. As the next session was about to start, I overheard a panelist and a vision teacher sharing contact information in hopes that the panelist could connect with her students.

Photo Caption: Panel of conference panel speakers

Five conference panel speakers smile while sitting at a table.

Genetics and albinism was the topic of the next session. Dr Murray Brilliant is a world renowned researcher on the genetics of human albinism and Director of the Centre for Human Genetics of Marshfield Clinic, Wisconsin. He lives up to his last name as a brilliant scientist and as a natural teacher who explains the intricacies of human genetics for the layperson. Along with science, he brought a global perspective to the conference with examples of humanitarian efforts around the world, particularly in Tanzania, to protect people with albinism and educate communities on the cause of albinism. Much more information about Dr. Brilliant’s international work and an informative video can be found on the United Nations Human Rights webpage (http://albinism.ohchr.org/story-murray-brilliant.html). Dr. Brilliant had a powerful spring storm to contend with outside the conference room windows, yet his warm and engaging nature held the attention of the room.

The next presentation, “Ages and Stages”, highlighted the importance of collaboration between families and vision professionals starting in early childhood and continuing through the school years. Marjie Wood, COMS, and Chrissy Cowan, TVI, developed the presentation to emphasize the connection of O&M and visual skills needed to support early learning (Eva Lavigne presented for Ms. Cowan who was not able to attend). They explained how early exploration of environments, such as a baby learning to crawl and explore the living room, is essential and the starting point of curiosity and motivation to explore less familiar settings. Drawing a young child’s attention to details in pictures, to print and to distance information is also necessary to begin development of visual curiosity. Their discussion of the school years brought in such topics as awareness of building layouts, reading stamina, and psychosocial concerns such as response to teasing and the development of cultural identity. The message throughout the session was that throughout the ages and stages of development, students with albinism have the best chance for success when families and vision professionals collaborate.

The lunch break was busy and gave a chance to network, tour the exhibit hall and grab lunch. Ten exhibits around the room provided resources and ideas for activities at home or school. An informal Q&A time with Dr. Brilliant and the NOAH (National Organization of Albinism and Hypopigmentation) table (https://www.albinism.org/) with website info and publications (e.g., Albinism Insight, NOAH Schoolkit) were definitely popular spots in the room. One exhibit displayed over a dozen books on the topic of albinism ranging from fiction to personal essay to nonfiction with pictures of animals with albinism (https://www.tsbvi.edu/low-vision-conference-resources/low-vision-conference-book-list)Other topics represented were adaptive PE, bioptics lens systems for driving, and examples of reading tools.

“Social and Emotional Aspects of Albinism” was the final session of the conference. Kelsey Thompson is a Vocational Rehabilitation Counselor with the U.S. Department of Veterans Affairs in Hines, Illinois, outside of Chicago. Her enthusiasm for this topic was clear. Kelsey opened her session with an explanation of the common vision problems in albinism (e.g., photophobia, nystagmus) and followed that with an explanation of what people with albinism do have (e.g., stability, visual field) and noted “no basis for comparison.” This example set the positive tone in her presentation. She used the phrase “stares, smirks and shout-outs” to describe the instances of drawing negative attention in public for some who have albinism. More importantly, she gave numerous strategies (e.g., having a response ready, drawing on a support network) to respond with confidence and self-advocacy when necessary. Her presentation was filled with pictures that showed the community of people with albinism at NOAH Conferences and the friendships they had established. Her comments were honest, practical, and to the point, a tone that resonated throughout the day. See https://www.tsbvi.edu/low-vision-conference-resources/exercises-to-evaluate-the-abcs-of-a-bad-day for additional strategies for developing a positive self-identity.

Photo Caption:  Photo of young girl with albinism holding a colorful sign that reads Makes Me Unique.

young girl with albinism holding a colorful sign that reads Makes Me Unique.

The NOAH YouTube channel provided the perfect conclusion for the conference. The challenge was to choose and display “my three words” on a poster that exemplifies living with albinism. In this spirited and heartwarming nearly five-minute video (https://www.youtube.com/watch?v=2R4zo1hwIkk&feature=youtu.be), poster makers show “Makes Me Brave”, “Life Is Good”, “Embrace the Challenge” and “Makes Me Unique”.  It reminded participants that every person pictured was right. The primary topics of providing services to support young children and students with albinism and educating others (locally and worldwide) about the unique features of this eye condition filled a very productive and upbeat conference day.



Resources

Exercises to Evaluate the ABC's of a Bad Day https://www.tsbvi.edu/low-vision-conference-resources/exercises-to-evaluate-the-abcs-of-a-bad-day

Low Vision Conference Book List https://www.tsbvi.edu/low-vision-conference-resources/low-vision-conference-book-list

Meet Dr. Murray Brilliant (2018, September 25).  Retrieved from http://albinism.ohchr.org/story-murray-brilliant.html

My Three Words: NOAH (2018, September 25). Retrieved from https://www.youtube.com/watch?v=2R4zo1hwIkk&feature=youtu.be

National Organization for Albinism and Hypopigmentation (2018, September 25). Retrieved from https://www.albinism.org/