Mediaplanet sat down with motivational speaker and blind advocate Molly Burke to learn about her experience living with retinitis pigmentosa (RP) and how she uses her voice to inspire others to overcome obstacles with a positive outlook.
Mediaplanet: At age 4, you were diagnosed with retinitis pigmentosa, a rare retinal disease causing loss of vision. Can you explain to us what retinitis pigmentosa is?
Molly Burke: It’s a rare genetic eye disease that causes a progressive loss of vision due to the deterioration of the retina. First symptoms include night blindness and tunnel vision, both of which I had from birth because I have a more rare and aggressive form of the disease.
What is your first memory of life with RP?
A lot of my childhood memories have a lot to do with being at the hospital, whether it was bloodwork, an eye exam or eye drops. I also have vivid memories from my surgery to correct my strabismus.
I remember having to miss Pajama Day at school because I had to get my surgery, which was devastating for me — I was five years old at the time. I also had to miss my grade 1 school field trip to the African Lion Safari because there was a picnic for the deaf and blind kids on the school board that I had to go to. Basically, I had many childhood moments I lost because of my disease.
How does RP change the way that you live your life?
There’s a lot of obvious things that come along with being a blind person, like not being able to drive a car, or not being able to just jump on a bike and ride around. Of course, I live most of my life with my guide dog by my side helping me navigate. But of course like most things, being blind doesn’t stop me from doing the things I love or want to do. I’m always able to achieve my goals, sometimes I just have to go about them in a different way.
What inspired you to speak so openly and publicly about your experience living with vision loss?
I started public speaking at the age of 5 as a youth ambassador for the Foundation Fighting Blindness Canada and it’s just something I never stopped doing. For me, I don’t feel like I have the choice to do it or not do it because this feels like my calling, my purpose. By speaking out and choosing to educate society, I can’t be angered by society’s ignorance because I’m always actively working to change that.
What do you think Canadians can do to create a more accessible world that is more inclusive?
As a whole I think Canada is doing a really good job at continuing to try and become more accessible, some things that I would like to see change are more employment opportunities for blind people, a crackdown on fake service dogs which contribute to major accessibility issues for guide dog users, and implement more accessible crosswalks.
What advice do you have for other Canadians experiencing vision loss?
I encourage anybody who’s experiencing vision loss to seek therapy or professional help if they feel like they’re struggling emotionally with the transition, which I did. I also encourage them to get more involved in the blind community, which can be a great space of comfort and support. It’s an amazing group of people and there are some really great opportunities that can come from being involved with others in a similar situation.
