Diversity A Unique Journey

A title reads, “Diversity: A Unique Journey.” A series of individuals of different ages, ethnicities, and genders speak to camera one at a time. They are all featured on the same set, sitting in a teal sofa chair with a blue curtain behind them, with lamps and plants on either side of them.

Throughout my life, I’ve seen that many people don’t have an understanding of DeafBlind culture and the DeafBlind community.

I think that diversity within the DeafBlind community is so important for people to understand. Hello. Hi. My name is Isachu Sankinu. Tony Giordano. Bienvenido Batista. James Byrne. And I’m a woman with CHARGE syndrome and I’m DeafBlind. I have Usher Syndrome. I am completely blind and deaf. I was born DeafBlind.

Obviously a lot of people do think of Helen Keller as, you know, someone fully deaf, fully blind, and assume that that’s how everyone is, but that’s simply not true. They think that all DeafBlind people are entirely without vision and hearing, when in reality, there’s different ways to be DeafBlind. I’m legally blind.

I have rectinitis pigmentosa. It’s a deterioration of the retinas. I have, um, Coates disease in the left eye that I can’t see out of anymore because they lasered it so much. There is such a wide umbrella of DeafBlindness because there are two different sensory impairments. Some DeafBlind have vision in only one eye.

Others can only see what is in the center of their field of vision. What happens is you start with RP, Rectangular Dyspneumatology, you start losing the vision on the sides first. It’s the opposite for Macular Degeneration. This goes first. Then it goes like that, and then you have this little hole here that you can see out of.

But not that great, because everything is blurry, okay? I have Usher Syndrome Type 2, which means that I was born deaf. You can lose your sight immediately at birth, or start to slowly notice vision loss. Uh, around age eight, I had no idea what Usher syndrome was or I’d ever heard of it. Wow. You know how racehorses only look forward and, and really have a tunnel vision.

That’s the way it was described to me. When you’re born with Usher Syndrome, your field of vision gradually gets smaller and smaller. And just so you know, there are several different types of Usher syndrome. Some people experience tunnel vision. Some have blurry vision, or have specks or spots that impede their vision, or reduced peripheral vision.

Usher syndrome is also categorized into different types, such as type 1, type 2, type 3. Other things attributed to Usher syndrome are loss of balance, hearing loss, and night blindness. Charge Syndrome is a series of six different anomalies and it’s an acronym, so like C is co boma, H is heart malformations A is Quaia.

I actually got, that’s when your nose is stuffed, like can’t really breathe that Your nose and R is developmental delays. There’s another word for it, but I’m not gonna say it. G is like, you know, tiny, we’re tiny, and… The E is ear malformations. So, if you can tell, we have different shaped ears. Some of us are fully deaf, some of us can hear only a little.

I can only hear a little bit. I was born with no sense of smell and impaired sense of taste. So, I’m able to taste some things, but I’m not able to differentiate between. A lot of different foods, for example, different flavors of a sweet candy or different meats. Those are things I struggle with. I developed glaucoma at the age of 10.

Over the last, uh, let’s see, I guess 10 years, I also lost hearing. I totally lost hearing in my left ear. Nobody knows why. Just one day I woke up and it was gone. My entire family is hearing cited with the exception of myself, and I’m the only deaf blind family member. My family did not know that I was actually deaf blind until my twenties.

I’ve been blind all of my life. No vision, no light perception. From then, when I was about 10 years old, I began to develop a hearing impairment. I was diagnosed at infancy with a condition known as Norris’s disease, the IT genetic condition. Which almost always leads to blindness. I started losing vision in 2014.

I was born deaf, and we didn’t know anything about the blindness at the time. I did not know that I was DeafBlind and did not become diagnosed until the age of 18. I grew up in the Bronx, going to St. Joseph’s, a residential school for the deaf. All that time I spent with the other kids, it never occurred to me that I was DeafBlind.

Because at that time in my life, I didn’t understand what that meant. When I was two and a half, I developed meningitis. My grandparents noticed that I might be deaf. Started when I was ten, I had night blindness. And I actually drove a car. Yeah. From 18 up until my early 30s when I had to stop driving a car because I got into a couple of accidents.

And then I started getting cataracts on my eyes and you know. I had a Camaro, 4 speed on the floor. Clutch. Cool. I was cool. I grew up and I guess around age 10 is when my vision became affected. It was noticed at school. I was playing ball and I would often get hit with it. And the teacher realized something was wrong.

And I was taken to the eye doctor. And ultimately the doctor told my mom that I had Usher Syndrome. And that I could become blind. But it wouldn’t happen right away. I would gradually lose my vision. And my mom was super worried. My wife and son and my daughter came up to me and they, I really did not know who they were.

So I realized that I had to go back to the doctor and find out. I had low vision because I lost half of the vision on my right side. I was very frustrated and I was depressed. I had low vision now. It was very difficult. There’s many things that people have yet to learn about DeafBlindness. They just need to be educated on the topic. [End of Transcript]