‘1 step may as well be 500’: Disabilities advocate raises awareness for Spinal Muscular Atrophy
Posted August 9, 2024 6:41 pm.
What was supposed to be a relaxing vacation in Costa Rica began with a harrowing ordeal for disabilities advocate Tori Lacey in May of this year, as she was precariously carried off an airplane strapped to a broken aisle wheelchair.
“It was really really scary … the whole time I’m just thinking if they tip that chair any more, I’m going to fall out and over the side,” she tells CityNews.
“I don’t have a lot of neck control. I don’t have trunk support. So [I was] I’m propped up by pillows, my dad is trying to hold me in the chair.”
Lacey has a rare genetic condition called Spinal Muscular Atrophy (SMA) that affects the motor neurons but has no cognitive manifestations.
“Over time, it causes progressive weakness affecting people’s arms and legs, but also affecting their breathing and swallowing muscles and because of the nature of the weakness, it can also lead to skeletal abnormalities like scoliosis and mobility issues,” explains Dr. Aaron Izenberg, a neurologist at Toronto’s Sunnybrook Health Sciences Center, which means Lacey uses a motorized wheelchair and cannot navigate stairs.
Despite informing the airline of these limitations, “they essentially just said that a jet bridge was not made available and that this would have to be how I disembark the plane — from a steep set of stairs,” she says.
She says the incident still haunts her today and during Spinal Muscular Atrophy Awareness Month in August, she hopes that sharing her experiences about living with the disease will ensure that no one has to go through such an indignity again.
“People with disabilities are travelling and I don’t think it’s acceptable that our safety is not being prioritized. But I also think it’s something that’s not really talked about enough. You put a complaint in with whatever airline you’re travelling with, and they’ll take down your complaint, but nothing really happens,” she says.
“So I think posting about these experiences on social media, making the general public aware that this is how people with disabilities are required to board planes and get off planes and that our mobility devices are consistently being damaged — I think it’s so important because if we don’t share these stories, then people just aren’t aware of what’s happening.”
Dr. Izenberg explains that SMA symptoms can vary widely in terms of severity.
“Many of our patients require assistance with basic things that we often don’t think about like activities of daily living, getting dressed, and transferring in and out of bed. Depending on how much strength they have in their arms, they might need adaptive changes made to their computer so they’re able to type and interact on a computer. And for some patients who might have more severe involvement, they’ll need support with breathing or support with nutrition and swallowing,” he says.
“I can really only move a couple of fingers on my right hand, which is enough for me to drive my wheelchair and type on my phone when it’s propped up in the right position. But other than that, I need assistance with everything else from getting up in the morning to making lunch, to getting around the city to all my work events,” says Lacey.
In recent years, huge strides have been made in gene-based therapies to mitigate the effects of SMA.
“The benefits are most staggering in children. So children who may never have been able to walk are able to walk, children who may have not tragically survived past a very young age are surviving,” says Dr. Izenberg.
“The natural course of this condition is that we expect it to gradually progress and worsen over time … some of these medications can help adults to stop that progression or slow that progression, and that translates into a huge meaningful difference in their day-to-day lives. From a functional perspective, it means that they can keep working, they can keep living independently, taking care of their families.”
Along with advancements in treatment, Lacey says she’s able to live independently thanks to Ontario’s Direct Funding Program which enables her to employ her own caregivers.
“It makes me a lot more independent, it means that I’m able to live away from my family,” she says.
However, she adds that the continued lack of simple accommodations for those living with disabilities is both discouraging and frustrating.
“I think that things are moving way too slow. I mean the Accessibility for Ontarians with Disabilities Act (AODA) promised that there would be a fully accessible Ontario by 2025. We’re very quickly approaching 2025, and I already know that that deadline is not going to be met,” she says.
“So many places here in Toronto have one step up into a storefront … to me, one step may as well be 500 steps … and business owners are not putting a simple temporary ramp to make these places accessible. I think that people often don’t realize how simple accessibility solutions are.”
She feels that the AODA does not go far enough and feels things won’t change unless all levels of government take a tougher stance.
“I think that true change is not going to happen until the government steps in and mandates that these changes be made because unfortunately, I don’t think people are going to do it on their own,” she says.
“There’s still so much that needs to be done to make sure that people with disabilities can actively be out in our communities and participate in society.”
