ADAM: “Jenna and I have both had retinitis pigmentosa (RP) since birth, so we’ve never really thought of it too much as a hindrance or a disability. We can’t see as well as other people, but we can still do pretty much everything. We’ve never had the experience of full sight, so this is just normal to us. It’s how we’ve always been.
I’ve never felt that different from my fully-sighted friends. Or when I do feel different, it’s as often as not a positive experience. If I have my cane out in a store and I'm looking for something, it's more likely that someone will ask me if I need help. I really do appreciate that.”
“Raising awareness through advocacy is the way we get our message heard and bring about real change.” - Adam
JENNA: “Sometimes I do think about how it affects my prospects and choices. Like, for any job that I get, I know that having the right accommodations will be a big thing for allowing me to do the job effectively. Or, if I start dating again, I do think it would be optimal to date a sighted person. I’ve only ever dated other visually impaired people before and it would be really nice to be with someone who can drive.
Adam and I have both been involved in the vision community throughout our lives, and that has been really positive. But, at the same time, having low vision isn’t who we are, and I think it’s important that we put ourselves out there as whole people. Adam’s really successful on TikTok, and he’s gotten a lot of views with his videos about RP, but that’s not all he does. It’s the same with my own YouTube channel. The message is really: ‘Hey, I'm a person who can do all these regular things and who has all these regular interests, I just happen to be visually impaired.’”
ADAM: “I was working with Fighting Blindness Canada to improve access to a surgical intervention to restore and preserve vision in people with RP, and I decided to make a video about it. I’d never shared anything about my visual impairment on TikTok before, and I really didn’t expect it to get as big as it did. The video is sitting at 1.1 million views now, and I’m really glad because it’s something that I’m passionate about. Raising awareness through advocacy is the way we get our message heard and bring about real change.”
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