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Jillian Clarke, who lives with Usher syndrome, is a staff member at Red Deer Public Library. (Supplied)
at the downtown library branch

Free event Thursday to mark International Day of Persons with Disabilities

Nov 30, 2022 | 5:06 PM

An event Thursday night in Red Deer will allow Red Deerians to observe the International Day of Persons with Disabilities.

The occasion is technically Dec. 3, but the Red Deer Public Library is hosting a panel event Dec. 1 from 6-7:30 p.m. at the downtown branch. The theme is “Transformative solutions for inclusive development: the role of innovation in fuelling an accessible and equitable world.”

Thursday’s event is free and will feature eight virtual speakers, as well as contributions from one library staff member Jillian Clarke, who spoke to rdnewsNOW about her Usher syndrome and how she wishes the world would think differently about disability.

A form of Retinitis Pigmentosa, Usher syndrome has three types, and is what caused Clarke to be born with moderate to severe hearing loss. She’s also slowly going blind from the genetic condition.

“At 18, I was fitted for a see-and-eye cane as my night vision went from bad to worse. I still got my driver’s licence, but I didn’t drive at night. I still did all the normal teenager things,” she says.

“Now, I can’t drive at all, which doesn’t bother me most days. I have limited peripheral vision and can’t see anything in the dark, not even shapes or outlines. Orange pylons and yellow floor caution signs are not my friends, and neither are fire hydrants or small children as I now walk into or trip over them.”

For Clarke, her disease, which affects four to 17 out of every 100,000 individuals, according to Fighting Blindness Canada, it is challenging when people are oblivious to it.

“Not all disabilities are visible. I was diagnosed with my conditions at a young age and therefore I can ‘blend in’ with society most of the time. If you see someone who appears to be struggling a little, maybe ask if you can assist. But always ask,” she says.

“If you see someone walking with a see-and-eye cane, it’s probably best to move out of the way a bit; we have these canes for a reason. But it’s different for everyone, and each person that has accessibility requirements views their needs differently. My sister is fiercely independent and will not ask for help, whereas I am okay with asking and receiving assistance — especially when I’ve dropped something on the floor.”

Clarke doesn’t have a life motto, but recalls that her father used to say, “It is what it is and it ain’t what it ain’t.”

“While that saying drove me nuts, it makes perfect sense. There is no cure, and there isn’t a whole heck of a lot that you can do about it,” she says. “It is what it is and it ain’t what it ain’t.”

People with disabilities or other challenges have support at RDPL, particularly at the downtown branch, where there is an accessible workstation complete with computer, specialized keyboard and mouse. There are also homebound services for those unable to attend the library for three months or more due to an illness, visual or a physical disability.

For those with print disabilities, there are large-print books, audio books and other services through Centre for Equitable Library Access (CELA) and National Network for Equitable Library Service (NNELS). There are also Daisy readers along with Daisy audio books, and books in braille, plus ebooks and eaudio books, and a Dyslexia backpack, among other things.

More about these accessible services and more is at rdpl.org.

RDPL also has book recommendations for International Day of Persons with Disabilities.

Light refreshments will be provided as well as a draw for door prizes for event participants.

More info here.