Iqaluit teen with terminal illness can't enjoy public pool just 1 of city's many accessibility woes

DushyenthGanesansays 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.

YughAhujais in the advanced stages ofDuchennemuscular 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.- DushyenthGanesan

Doctors said in 2016 thatAhujaonly had two or three years to live.

"Now we're in 2018, he continues to fight it through," saidGanesan.

Teen can't get into pool water

One kind of therapy to help relieveAhuja's pain is to submerge him in water, saidGanesan. Plus itgives himan activity to do during the summer months something that's hard to come by with his disability.

But Iqaluit'smulti-million dollar public pool, which just opened last year, doesn't have the special equipment to help getAhujainto the water.

• Iqaluit's long-awaited new pool makes a splash

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, saysGanesan.

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," saidGanesan, 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."

Ganesansays 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.- DushyenthGanesan

"Last year they expressed interest [in installing the lift system]," saidGanesan, adding nothing has changed since then.

"I guess it could be staff turnover."

Ramps, unpaved roads 'just too risky'

Ahujagraduated from high school this past Junewith an award for perseverance.

ButGanesansays it's been a challenge for the family to find programs and activities forAhujato do in the community after graduating.Ganesansays the teen stays at home most of the time, because it's difficult to transport him around town and access some buildings.

For example,Ahujamanaged to find work this summer with Ilinniapaa Skills Development Centre, but can't access its building. So he does his workat his father's office which has a ramp.

And even some buildings with ramps likethe youth centre, the Nunavut Arctic College, and inside the localarena aren't practical, saysGanesan.

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 DushyenthGanesan

Ganesansaid 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," saidGanesan, adding that it's "always a little bit risky" for him to pushAhujaaround 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 addedthere 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 haulAhujaup, but it's uncomfortable for him and they only resort to using it for emergencies.

Despite those challenges, something bigger is onGanesan's mind.

"He's always pretty much limited to being with us all the time," saidGanesan."Ithink our biggest worry is just him being isolated."

• FROM 2012 |Iqaluit disabled people demand more accessibility

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."

• Nunavut mom organizes walk for 4-year-old son who needs wheelchair

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 barriersis 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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