Barbara Milner is both deaf and blind. At 58 years old, she has lived her entire life with a condition called Usher syndrome—a rare genetic disorder that leads to acute hearing and vision loss. Those who live with the disease must often confront isolation, loneliness, and profound social barriers.
As we at the Foundation Fighting Blindness quickly learned, Barbara is the kind of person who confronts such challenges with boundless vigour and determination, leaving those around her inspired.
Barbara was born with a pronounced lack of hearing that prevented her from learning how to talk, so she read lips during her youth. Her difficulties communicating in class compelled her family to move from Toronto to Milton, Ontario so she could attend a school for deaf children and learn sign language. Once again, she continued to adapt alongside her disease and find new ways to interact with those around her.
When Barbara was 15 she was confronted with a new obstacle: a friend approached her at school one day to ask why Barbara had not responded when she had waved to her. She walked up beside Barbara to pose the question but had to tap her on the back before Barbara noticed she was there. She told Barbara that something may be wrong with her peripheral vision.
Upset, Barbara went home to ask her mother about what was happening to her. Her mother explained that when Barbara was 8 years old, they were told she had Usher syndrome, but that her vision wouldn’t be affected. Thinking her vision was safe, her mother kept the diagnosis to herself.
Barbara was overwhelmed to learn that she would now have to cope with vision loss alongside her deafness. Her father did not take the news well either, and would struggle to accept Barbara’s blindness, finally coming to terms with it after many years. Despite the magnitude of her prognosis, Barbara lived her life as normally as possible. At 20, she married a man who was also deaf and had five children with him—four boys and a girl. Usher syndrome would determine the fate of her hearing and vision, but not her life.
But life still had more to throw at Barbara: as her vision continued to decline her ability to communicate with sign language did too. At 30 years old, she learned tactile sign language and has since relied on the technique, along with the assistance of an intervenor, as her primary means of communication.
Eventually, she and her husband divorced, and her grown children left home to start families of their own. Barbara now has ten beautiful grandchildren, a testament to her strength and tenacity.
She lives by herself these days, and maintains as much independence as possible. Incredibly, she does all her own cooking and cleaning, and taught herself how to read braille. She has an electronic braille machine connected to her iPhone that allows her to communicate over email and with text messages, and to keep up with the latest vision research breakthroughs in the Foundation Fighting Blindness e-newsletter. She has a braille watch and an alarm clock that tells her the time by vibrating in patterns similar to Morse code.
Barbara actively works to improve not only her own standard of living, but the lives of others living with the disease as well. She lobbied the federal government to increase the amount of intervener hours funded for deaf-blind people, and successfully had them raised from 3 hours per week to between 25-29 hours per week. Her victory made an enormous difference for those living with Usher syndrome, helping overcome the immense social barriers that come with the disease.
But not enormous enough for Barbara.
She wants to increase the pace of vision research dramatically, bringing us closer to treatments for Usher syndrome and other retinal diseases. She’s fascinated by breakthroughs in gene therapy, stem cell research and CRISPR, and maintains hope that ground-breaking results are on the horizon if we continue to work towards them.
This year, the Foundation Fighting Blindness is launching a bold, new initiative focused on restoring sight for Barbara and those living with retinal diseases. Building on international momentum and expertise, the initiative is designed to enable Canada to partner with international leaders in laboratories and clinics to transform world-class discoveries into sight-restoring therapies.
You can be part of this momentum. You can help change the future for Barbara and those who fight to overcome, day after day, the hurdles their diseases present.