A vision splendid

Published 12 April 2018

Image: Associate Professor Linda Agnew, second from right, and her husband Warren with their daughter Steph and son Callum on a quest for Steph’s wedding dress. Photo by James Day, as part of a series documenting the marriage of Steph and fiancé Rob.

Associate Professor Linda Agnew took leave from her busy role at the University of New England (UNE) recently to fly to Melbourne on a very special mission – to help her only daughter Steph choose her wedding dress.

It was an exhausting day, and tears were shed as Steph modelled a multitude of gorgeous gowns – an occasion to cherish, especially given that both Linda and Steph are blind.

“We had to take a different approach to shopping for the wedding dress,” said Linda, the newly appointed Head of the School of Science and Technology at UNE. “Touch had a lot to do with it, and we had a great team. Steph’s youngest brother Cal and her father Warren both have beautiful taste, so we were very trusting of their opinions, and one of Steph’s bridesmaids also advised. For Steph, it was all about how the dress felt when it was on.”

As the proud mother-of-the-bride, Linda considered each option, her sensitive fingers guided by Cal and Warren’s detailed descriptions. “It was a very long day, but I felt very privileged to be part of the process,” she said. “It was really, really special; a wonderful gift.”

Gratitude comes up often in conversation with Linda. She’s grateful for her supportive family, fulfilling professional career as a scientist and academic, for modern technology, and the opportunity to conduct volunteer work in Vanuatu. But losing her sight, and then discovering that three of her four children had also inherited the degenerative eye condition – cone rod dystrophy – has had its challenges.

“It took a long time for me to come to terms with my sight loss,” Linda said. “But especially given that the kids have inherited this condition, I’ve felt a real need to be a role model for them; to show them that while it sucks, it’s not the end of the world. It is life-changing, not life-threatening and needn’t define who you are.

“How we approach this is very important. Whilst acknowledging how difficult it is, it’s also important to demonstrate that you can get on with things and not only be a functional member of society but also aspire to really big things. Because I have abilities and talents that other people around me may not have.”

Linda began a Biomedical Science degree at UNE in 1999 as a mature-age, part-time distance education student with four young children while living in Mt Isa, Queensland. She had every intention of using it as a stepping stone to studying medicine, but after she and her family relocated to Armidale and she completed her undergraduate degree in record time, Linda was invited to do honours in HIV immunology. She graduated with first-class honours and earned a University Medal, before embarking on her PhD, also at UNE. The cone rod dystrophy diagnosis came during the final year of her studies, in 2005, just as her career as a cellular immunologist was taking off.

“I started using magnifiers and coloured lenses on my glasses at first,” Linda said. “Then a cane, as my sight deteriorated. I didn’t lose my sight completely until three years ago. At this point in time, a guide dog is not the right thing for me. I’m not really an animal person and I jokingly say that I already have a guide dog and it’s my husband Warren.”

Technology has been a critical aid. “If there were a time to be blind; it’s now,” Linda said. “The supported and adaptive technology is fantastic and is developing really quickly. I use a screen reader on my computer that talks to me and also helps me with my typing, and voiceover on my I-phone. I can navigate part of the campus on my own and those parts I can’t, I get someone to take me for a walk. It’s no biggie.

“Losing my sight hasn’t affected the quality of my work, but I’ve had to adapt the way I work. Now most of my research work is conducted in multi-disciplinary teams. I’m not in the lab anymore but I’m providing other input and expertise around research design, methodologies, writing and editing papers, and supervising students.

“I have honed other skills, especially my listening skills, to really hear a person’s voice; not just the words but what’s underneath what they’re saying. I also have to rely heavily on my memory. I’ve always had a pretty good memory but my husband now tells me that it’s scarily good. And I always try to bring with me my core values, around honesty and integrity, knowing that every person I encounter has their own story and challenges. We may not hear or see those things, but they are there.”

It’s a philosophy that Linda applies equally to her regular humanitarian work, in Vanuatu, the third poorest country in the Pacific. For the past eight years she and Warren have led teams that have partnered with local communities to carry out projects to improve education and health care on the small island of Pentecost.

“I have always had a sense of wanting to help other people, even before this eye thing,” Linda said. “I have a strong Christian faith and the first time we visited the island I had functional vision; I saw the poverty and conditions that people were living in. As an educator, I saw the need to provide resources, build classrooms and provide professional development support and student scholarships. Being a biomedical scientist, I am also very keen on improving health care. There is no doctor on the island and health clinics are generally staffed by a nurse.

“As a blind person, I have also connected with some disabled kids and we have tried to support their families. Losing my sight has made me more sensitive to the needs of the more marginalised people within these already marginalised communities. Wherever you go, people are people; they still hurt and want the best for their kids; to feed and educate them well, and for them to have a better life than they did. Hopefully we are doing something to improve that quality of life.”

This year, however, Linda is unlikely to have time to make the annual pilgrimage to the Pacific island. There’s a wedding to organise, and in November she and Warren will walk Steph down the aisle to marry her fiancé Rob. Linda can picture it now.

Steph’s Armidale school friend, photographer James Day, has been documenting the couple’s preparations. Go to http://www.jamesday.com.au/stories/steph-rob/ for an insight into how he is journaling the experience in words and pictures.