I’m Tina, and the visual impairment / blindness I have is called Cerebral/Cortical Visual Impairment or CVI.
CVI is neurological vision impairment where the eyes see but the brain can’t – and it’s the leading cause of childhood blindness. For every one case diagnosed, there’s four more likely cases.
Did you know that 93% of blind people see something? I’ve been using the words “blind” and “visually impaired” interchangeably. And since the last CVI conference hosted by Perkins, l’ve been calling myself blind. Because CVI makes my vision unpredictable: I can wake up visually impaired and by the end of the day I’m completely blind.
Advocating for CVI representation
As a CVIer, it makes me really sad that every time I see someone who is low-vision or blind represented in entertainment, on social media, etc., they tend to have more “typical” forms of blindness.
Even other blind and low-vision content creators never have what I have, including some of the blind influencers that inspired me to start creating my own content about CVI.
Molly Burke, who helped me decide to use a white cane via her videos on YouTube, has Retinitis Pigmentosa (RP). My friend and collaborator Karan Nagrani, who has the same dark humor around being blind and is also gay, has Usher syndrome, which involves hearing loss and progressive sight loss caused by RP. Other influencers and content creators have cataracts, glaucoma or other known eye diseases or disorders.
So I wanted to use my voice to tell other CVIers they aren’t alone and they shouldn’t be ashamed of their CVI.
Becoming the CVI representation I wanted to see in the world
I was on the most recent season of Netflix’s Love on the Spectrum – and it was a huge step for CVI visibility.
I’m so grateful to the directors for letting me talk about CVI on the show. I said “My vision impairment, it’s where my eyes see, but my brain can’t process. A lot of people with my vision impairment also have autism.”
The responses I’ve gotten from the CVI community as a result of being on the show have been overwhelmingly positive – including how it was meaningful to see adult CVIer living life independently and finding love.
As more children are diagnosed with CVI, it becomes even more important for those kids and their families to see what the future could hold.
I am proud to be a representative for all of my communities – CVI, autism, LGBTQ+ and more – to advocate for accessibility, acceptance and inclusion.
About the author
Tina is a fierce, fearless, outspoken advocate, athlete, artist and photographer who lives in the Boston area.
Want to get to know her better? You can follow her on Instagram. Watch her fall in love with her girlfriend Pari in season 3 of Love on the Spectrum. Join her at CVI Awareness Day at the Massachusetts State House on September 9. And read her previous #MyBlindStory post, Living with CVI: What is the Definition of Blindness?.
