Client Profile: Santo Calidonna
When you think of the word Deafblind, you probably imagine a world of total darkness and a complete lack of sound. How could you communicate? How would you access information or get around? Even though most people who are Deafblind have some degree of remaining hearing and/or vision, those questions still present very real challenges for them.
At just 18 months old, Santo Calidonna was diagnosed as being “profoundly Deaf”. His parents took him to Sick Kids for tests after they noticed a change in his response to noises. Doctors told his mother that Calidonna could learn to speak. However, a year into the program, the decision was made to switch to American Sign Language (ASL).
The Calidonna family quickly embraced the idea of learning ASL as well, so that they could all communicate. Eventually, some of his other relatives also became fluent through the use of tutors.
“Coming from a large Italian family, it was very important that we could all talk to each other,” says Calidonna.
At 7, Calidonna’s mother began to notice the frequency with which he was stumbling, tripping and stepping on his toys.
“We had a sliding door that we usually left open, so that my parents could hear the kids as they played outside,” says Calidonna. “Every so often though, it would get closed and I would run into it.”
These incidents led to a trip to the doctor where Calidonna was diagnosed with retinitis pigmentosa, an inherited genetic disorder that affects the retina’s ability to respond to light.
Callidona was Deafblind. He had complete hearing loss and a degenerative eye condition. It was a situation that many people would struggle to imagine and one where it can be difficult to truly understand the ramifications.
“I was just a kid when I was diagnosed, so I didn’t really know any different,” says Calidonna. “It was simply what I was used to. My Mom tried to explain it to me, what it would mean, at the age of eight or nine. She was scared, but all I really cared about was that she was telling me it would impact my ability to be a kid. I wanted to run, jump, play and be myself, and she was telling me I had to be more careful. But I didn’t really understand why. I didn’t know that my situation was different than other kids. It took me until I was a teenager to realize that. If I had lost my vision in my 20s, it probably would have affected me, my mood, more.”
Calidonna first heard of CNIB and their service offerings when he was in high school. At the age of 19, he enrolled in the DeafBlind Literacy program, but only stayed for three months. His hasty departure was a result of an unfortunate personal experience that negatively impacted his view of what intervention services could offer him.
“I was having some trouble with a particular teacher,” Calidonna says. “We were constantly clashing, for personality reasons, but our disagreements were always blamed on my physical impairments. I was given poorly designed eye tests by the school that incorrectly said that my vision had deteriorated. This resulted in having an intervenor forced on me; one that I did not like. My situation was made unnecessarily public by the school. It was embarrassing and really ruined my view of using intervenors. I thought this was the way the relationship had to be. I thought CNIB would be the same, so I left.”
It was only because of a series of unfortunate eye injuries, and subsequent surgeries that Calidonna gave CNIB another chance. At 28, he suffered a vascular injury that caused blood vessels in his eyes to burst. The injury was unrelated to his retinitis pigmentosa, but the resulting surgery did have a lengthy recovery period.
“I was completely blind for 12 days. I could not see and it scared me. It made me think about the future. It made me realize that you can never take things for granted. I wanted to be prepared,” says Calidonna.
So Calidonna signed up to learn braille. He took all five CNIB braille courses in a single year and became fluent in a medium that he did not yet require. It made him feel like he had taken back control of his life. His positive experience with the staff at CNIB changed his mind about using an intervenor and he started to take full advantage of the service.
“I wish I had done it sooner!” says Calidonna. “Everything was confidential. They were encouraging and professional. They care about your goals and they help you knock down barriers. They help you to be more independent and to prepare for what’s to come. It’s opened my eyes. It’s really changed my life.”
Calidonna, now 30 years old, has a strong relationship with his CNIB intervenors. While much of his family understands ASL, he would be unable to communicate with anyone who didn’t sign without the help of the intervenors. Apart from the way he communicates though, Calidonna stresses that he is just like anybody else.
“Mentally, physically, spiritually, we are all the same. I have a few unique challenges, but our response to the challenges are what shape us. I use braille and large print, but I can still read, right? We are all the same at the core. It just takes me longer to get from point A to point B.”
June is Deafblind Awareness Month. There are over 300 CNIB clients like Santo Calidonna in Ontario who have been identified as Deafblind. CNIB provides them with programs and services such as intervenor services, literacy programs, assistance with devices and case management support.