Iqaluit teen with terminal illness can't enjoy public pool — just 1 of city's many accessibility woes
Pool not accessible for people with no mobility; roads, ramps in town 'too risky,' says dad
Dushyenth Ganesan says his biggest worry is that his son will feel isolated living in Iqaluit — a place the 17-year-old has called home for most of his life.
Yugh Ahuja is in the advanced stages of Duchenne muscular dystrophy, a terminal genetic disorder that targets the muscles.
Ahuja's symptoms started when he was about eight years old. He had difficulty climbing stairs, and now he has almost no mobility left in his body — just in his hands.
It's a public facility. It should be all inclusive as possible.- Dushyenth Ganesan
Doctors said in 2016 that Ahuja only had two or three years to live.
"Now we're in 2018, he continues to fight it through," said Ganesan.
Teen can't get into pool water
One kind of therapy to help relieve Ahuja's pain is to submerge him in water, said Ganesan. Plus it gives him an activity to do during the summer months — something that's hard to come by with his disability.
But Iqaluit's multi-million dollar public pool, which just opened last year, doesn't have the special equipment to help get Ahuja into the water.
According to the city, the pool currently has a ramp and a water wheelchair that can be used to roll an individual into the shallow end. But for people with limited to no mobility, that system won't work, says Ganesan.
What's required is a pool lift — a contraption with a harness and a lift, that can be installed by bathtubs and pools.
"It's pretty straight forward. It's a simple installation," said Ganesan, adding these are used in private homes, hotels, spas, pools and elders centres.
"It's a public facility. It should be all inclusive as possible."
Ganesan says he's been in communication with city staff about this issue, and even offered to sell them a lift and harness the family purchased previously, to install at the pool.
You have to push him in the middle of the road, because it's hard to push him in the dirt, in the tundra.- Dushyenth Ganesan
"Last year they expressed interest [in installing the lift system]," said Ganesan, adding nothing has changed since then.
"I guess it could be staff turnover."
Ramps, unpaved roads 'just too risky'
Ahuja graduated from high school this past June with an award for perseverance.
But Ganesan says it's been a challenge for the family to find programs and activities for Ahuja to do in the community after graduating. Ganesan says the teen stays at home most of the time, because it's difficult to transport him around town and access some buildings.
For example, Ahuja managed to find work this summer with Ilinniapaa Skills Development Centre, but can't access its building. So he does his work at his father's office which has a ramp.
And even some buildings with ramps — like the youth centre, the Nunavut Arctic College, and inside the local arena — aren't practical, says Ganesan.
He says many ramps are not properly designed — too steep, obstructed by pipes, are made of makeshift wood and "just too risky." He says sometimes, even the ramps themselves are hard to get to.
Why don't you just move south?- What people have asked Dushyenth Ganesan
Ganesan said he feels that many buildings around town just put in ramps "to satisfy a building code."
"We thought about a powered wheelchair for him, but again the streets and all are not designed for that kind of thing," said Ganesan, adding that it's "always a little bit risky" for him to push Ahuja around the community's often rugged or nonexistent sidewalks.
"You have to push him in the middle of the road, because it's hard to push him in the dirt, in the tundra."
Ganesan added there aren't wheelchair accessible van services available in town for daily use, only for medical emergencies to the hospital. The family has a truck with a system to haul Ahuja up, but it's uncomfortable for him and they only resort to using it for emergencies.
Despite those challenges, something bigger is on Ganesan's mind.
"He's always pretty much limited to being with us all the time," said Ganesan. "I think our biggest worry is just him being isolated."
City plans 'Accessibility Day'
Ganesan said some people have asked his family, "why don't you just move south?"
"We're committed to being here, and I don't know if that's a fair response to us," said Ganesan.
"[Ahuja] likes being here. This is what he knows."
Stephanie Clark, a recreation services manager with the city, says the city is working with Nunavummi Disabilities Makinnasuaqtiit Society and is also looking for funding to revamp many buildings to be more accessible.
Clark said people should communicate with facility and program staff about their needs prior to arriving.
"Then we'll work to make sure that we can meet the needs the best we can," she said.
"We have heard that is one of the major barriers is actually getting to the facility itself," said Clark.
She said an "Accessibility Day" event is planned for early August to raise more awareness about accessible programs and facilities available, and that it's an opportunity for community members to come and give feedback on their experiences.
Do you have accessibility issues in your northern community? Contact priscilla.hwang@cbc.ca
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