In 1978, Scott Love was born prematurely with a weight of 1.8 ounces. He was in the intensive care unit (ICU) for three months, during which time he was exposed to high levels of oxygen that caused a deterioration of his retinas. Not long after, his parents, Alan and Valarie Love, found out Scott was also deaf.
Being both blind and deaf put them all in a very difficult position.
“The combination of the two created a very unique disability in the sense that (Scott) couldn’t be taught as a blind person using hearing tools or as a hearing impaired person with visual tools,” said Alan, who goes by the nickname Al. “It created a completely different challenge that is uncommon.”
Last week, Social Services Minister Donna Harpauer proclaimed June 1-7 as Deafblind Awareness Week in the province. Harpauer expressed the government’s appreciation for the Saskatchewan chapter of the Canadian Deaf Blind Association (CDBA).
The CDBA manages group care homes where deafblind adults like Scott can have one-on-one interaction and attention from trained caregivers. Options like this are necessary solutions for parents like Al and Val who have to work full-time jobs while also caring for a special needs child. Not only is it time-consuming, it can also be emotionally stressful and demanding for everyone involved. Individuals like Scott have a hard time communicating what they want and need while the parents and caregivers have a hard time interpreting their signals.
“Speech and reading is how most people communicate and those are now limited or eliminated,” said Dana Heinrichs, executive director of CDBA. “Figuring out their needs can be a challenge and supporting them to the best of our ability can be a challenge … Health and medical needs can be one area that can be a challenge because they’re not always able to express where they’re in pain.”
Among the various tools Heinrichs says they use to communicate, the key means of communication is through “tack tool signage,” which refers to a type of tactile sign language. This method involved signing into their hands or forming the signs with the individual’s hands.
“They might drape their hands across mine, I’ll do the sign, and they’ll take in the information,” said Heinrichs. “They’re feeling the motions … for example, we might bring their hand to their mouth to show them (the sign) to eat.”
Heinrichs says they might also use objects to communicate a message, such as a spoon for eating or a swim bag for swimming.
The options for employment for these individuals are limited, so Heinrichs says they do a lot of volunteer work. The professionals who work with them often act as liaisons between them and the world around them. Certain companies have been particularly open to providing volunteer positions for them, such as Cosmopolitan Industries, Motion Fitness, and Hickory Farms.
Despite the difficulties these individuals face, Heinrichs says she wants people to recognize how far they’re able to come in spite of it. She wants people to recognize how life is a constant journey of learning and growth for these individuals.
“I just want people to know about deafblindness, understand it, and know that they can live meaningful lives and be contributing members despite being born with hearing and vision impairment,” said Heinrichs. “They don’t want pity. They get it, but I want people to gain more understanding and look up to them and go, ‘Wow, that’s amazing.’”
Due to limitations to the funding available, the Saskatchewan chapter of the CBDA is only able to support individuals who were born with the deafblind condition. They mostly rely on funding from social services and individuals get funding support from the Saskatchewan Assured Income for Disability (SAID) program.
In fact, the only reason Saskatchewan has a CDBA chapter at all is thanks to the efforts of Al Love and other parents like him. When Scott was born, there was no program support for individuals with deafblindness.
“They just tried to teach all disabled people the same at the same time,” said Al. “They didn’t identify those individuals that may have needed a higher support level than others.”
When Scott was born, the Loves lived in Regina. When he turned three, the Saskatchewan Board of Education approached them about a unit that was being opened up in Saskatoon that specialized in teaching deafblind people. Not wasting any time, the Loves moved to Saskatoon where they were joined by the parents of 11 other deafblind students.
“When we got to Saskatoon and Scott started to go to school, we got to meet other parents that had similar challenges,” said Al.
From age three to five, Scott took a 45-minute bus ride twice a day just to get appropriate education. After that, his parents began letting him stay there during the week, which gave them the ability to “take that higher level of training and attentiveness and apply it longer than a six-hour school day.”
Unfortunately, the provincial school where Scott was staying and learning came to an end in 1991 when it was integrated into the provincial public school system. Al and his wife knew that once Scott graduated from the public high school, there would be no place for him and they’d have to look after him themselves. Coupled with their full-time jobs, they knew things could get difficult.
“After all the effort that was put into giving these children that training, at the age of 21 when the school system ended, they’d be going to go to nothing,” said Al. “We were able to decide as a group of parents … that we would need to start working when the kids were four or five years old to establish something so that in 15 years when they graduate, we’d have something.”
To that end, Al, his wife, and seven or eight other parents banded together to develop a plan that would enable third party care for their deafblind children. Fortunately, the government saw the need for post-high school care, which gave the parents an opportunity to lobby for a program that entailed residential care.
They established a provincial association that affiliated itself with the national association, thus becoming the Saskatchewan chapter of the CDBA. This year will be Al’s 30th anniversary on that board and they have maintained representation on the national board as well.
“It could always be worse. We’re just thankful for what we have as opposed to what we don’t have,” said Al. “I’m grateful I was able to learn so much. Scott’s taught me more about life and people that I ever would have learned on my own.”
