mobileWOMEN Looks North at Accessibility in Canada

by Amy Saffell

We had such a great response to the story about Sarmistha Sinha, a wheelchair user in India (http://www.mobilewomen.org/2014/07/wheellife-in-india.html), that we wanted to explore the lives of more women living internationally. This time, we meet Louise Sertsis in southern Ontario, Canada. We expect that women living in developing countries like India, might face more challenges than someone living in the United States, but what about our friends to the north? Are there more challenges for women with disabilities there?


Diagnosis and Treatment

Louise was diagnosed with Multiple Sclerosis in 1999 at just 20 years of age.  In the prime of her life, she realized that she could no longer plan her future.  She had done her research on MS and knew that the rate in which her disability would affect her would be unpredictable but that it would eventually greatly take its toll on her body. At the time of her diagnosis, people didn't know by looking at her that she had MS, but her disability did progress, and currently she uses a wheelchair outside of her home and a walker in her house. “Right now I feel great, as I now have an optimistic view of the future, instead of the pessimistic view I held for so long. My fine motor control has been majorly affected, so writing is quite the challenge. In the mornings I have an abundance of energy, and as the day continues, strength and mobility decreases.  Staying hydrated is very important in the hopes of keeping my energy level up,” Louise says. In fact, she has felt well for some time because her MS has not progressed in ten years, which Louise is grateful for because she understands that her MS could have continued to progress at the alarming rate of her early years after diagnosis. The MS attacks were so bad back then that she decided to do something drastic to have a chance at maintaining a bright future. She had an experimental bone marrow transplant that miraculously halted progression.  She was one of 25 people in Canada in one of the first trials, having fit all of the mandatory criteria to be a candidate for the trial.  That bone marrow transplant study gave her a future that was stable enough to wait until a more promising treatment was available.  Although she is grateful now for what the transplant did for her, it was an agonizing process. She endured a massive recovery lasting almost six years, losing all of her hair, as well as all of her energy and self-esteem. Louise says, “life during that part of my life was very trying.  I did not realize the amount of suffering I would have to live through before arriving here, at a place where life is more of a gift than a horrific nightmare.”

Medical Care In Canada

Louise lives about an hour from Toronto. She says, “living close to a major city has allowed me the opportunity to receive most of the benefits that are available in Canada.  However, if it weren’t for my inherent need for the absolute best care possible as well as research ability, I would not be here in my present capacity.” She traveled to Bulgaria to undergo a procedure called CCSVI to aid narrowing of the veins, which to this day is still not approved in Canada.  The medical community and politicians don’t agree that MS might in fact be a vascular disease, so the likelihood of this procedure being available in Canada anytime in the near future is very small. Louise disagrees with the medical community in Canada, saying, “speaking from a person with MS and having had this procedure, I am able to verify how it’s changed my life immensely.  The most recent medical advances are not being pursued in Canada therefore, I, like many other Canadians, are receiving treatment elsewhere. Examples such as mine reinforce the fact that Canada’s health care system is at best quite stagnant.  It’s great if you do not have a progressive disease such as MS, but when you need different and new advances, Canada is slow to respond.”  Louise also comments that she doesn't take nearly the amount of medication as some other people with MS and has less doctors’ visits, for which she is grateful.

When it comes to durable medical equipment in Canada, it is available and of good quality, but Louise tells that it is only covered for those on social assistance and are not married. The healthcare system in Canada, she has found, is a great fit for those who fit in limited parameters, but, in many situations, patients are left to foot the bill, regardless of the physical strain that it puts on the individual or family.

Independence In Canada

Louise lives with her husband in a home built for her needs, but she finds it difficult to get the independence outside of her home that she desires. She plans to further her education to be more competitive in the workforce, but the logistics of school and work become a daunting task. She has not been able to work for over ten years, but she is ready for that to change so that she can become a “contributing member of society,” as she says.  “It’s going to cost my husband and me at least fifteen thousand dollars for me to even think about exiting the home by myself.  Other people are able to leave their homes for free. How is this fair? In the grand scheme, I am very grateful for feeling well enough to venture on my own, but I do think that this freedom should be available to all, regardless of their financial situation.”  The primary Canadian government program for people with disabilities, AssistedDevices Program (ADP), will only cover devices that are used inside the home, therefore excluding lifts and a small scooter that would be conducive to Louise getting in the community.  There are some government tax and savings programs available, but they simply don’t provide enough to cover the full range of expenses of many people with disabilities. ADP does cover a big scooter that is either only suitable for inside use or must be transported with an accessible van. Because Louise does not need the big scooter and has some mobility with a walker, she is absolved from getting a scooter of any size covered.  “Even though I only need a small scooter and want to go outside the home, that privilege is only given to a select few,” Louise says.  “Now I am trying to get partial coverage from the insurance company, but since ADP is not involved, it’s highly doubtful that I will be approved for ANY coverage.”

Accessible Transportation in Canada

Transportation in Louise’s case has more to do with her journey to accept her disability than it does just the physical logistics of finding accessible transportation. “Ever since I stopped working,” Louise says, “I have virtually been a hermit inside my own home.  Afternoon naps were frequent and for long duration's.  I literally saw a black hole where life was stagnant, and time flew by while I was just a bystander, feeling as if life wasn't meant for me to enjoy.  No amount of words could be used to describe the pain I was in, where hope was a word that I could not grasp.” When she had her CCSVI procedure in 2010, life began to change. She had felt that transportation outside of her home was so far out of her reach before her procedure that she didn’t even pursue it. Now, though, she has been engaged in living a full life and leaving home. “I now use the word hope in a totally different way than I once did. I hope to share my life, rather than hoping life would end.  Transportation outside the home is now wanted and needed,” she says. Although she is mentally ready and willing to leave home by herself, her home is accessible on the inside but up four steps from the ground. Louise has found that although she desires a more accessible entryway, the logistics of doing so are a challenge. Louise says, “My brain wants things done now, but, financially speaking, my husband and I do not have the funds at the moment.  It is unbelievable how something that should be second nature for all is a privilege for people with adequate finances to purchase the expensive equipment needed to exit the home.”

Outside of her home, public transportation in her suburb of Toronto is 100% accessible.  Buses are well equipped with low-floors or hydraulics that lowers the bus to get on and have annunciators that verbally call out bus stops for those that require it.  However, not all bus stops are paved.  Some still are in areas that are bumpy or contain grass, but there are plans for all stops to be wheelchair accessible by the end of the year. There is also a more specialized bus system that can pick people with disabilities up and take them to their destination on request.  When these buses are unable to meet a requested time for pick up, taxis are used to bring passengers with disabilities to their destination at the same fare as conventional buses.  Overall, Louise says that the transportation system is very good, but, for her, it’s getting to the point of using it that has been problematic.

Attitudinal Barriers In Canada

Louise says that there are still many attitudinal barriers in Canada, but that’s beginning to change. It wasn't until recently that Canada passed the Accessible Ontario Disability Act (AODA), legislation to require accessibility in public places, so it is unfortunately only natural that attitudinal barriers lag behind because prior to this legislation, there were fewer people who came in contact with someone with a disability to have their preconceived notions about people with disabilities changed.

Recalling her own experiences, Louise says, “I was hired on as a part time employee at a rather large establishment. I am very well educated but was never hired on full time as many of my co-workers had been.  I believed that I had a human rights case because I was not being hired full time even though I was perfectly capable of doing the job.  My MS was not visible at the time, and I was not obliged to divulge my health issues.  I did exactly what people with disabilities rarely do and fought for our rights as disabled individuals and won!  Hopefully others with disabilities will fight for what is right and that over time things will change.”

Fun Times In Canada

While there are still challenging aspects to life, Louise finds lots of ways to have fun. She is an avid poker player, inventor, and loves to read. While she herself loves to read, soon it will be others reading about her. She’s currently working on a biography about her first year of having Multiple Sclerosis. The book is close to her heart, particularly given the time taken to write it. It was started many years ago and put away until she was healthy enough both physically and mentally to pursue avenues to share her story. Although telling her story a labor of love, there is still trepidation in being vulnerable. “Since I haven’t worked in quite some time,” Louise says, “the fear of being judged is very real, but I feel I have a lot to share.”  As an extension of her book, Louise also hopes to give talks about her condition to provide hope to others dealing with the same unpredictable disease.


If you are a mobileWOMAN living in a country other than United States, we would love to hear your story and learn what your life is like there. Please contact us at info@mobileWOMEN.org.

Are you a reader living outside the US? If so tweet @mobilewomen.org with the hashtag #InternationalAccessibility to let us know how access is where you live!


Columnist Amy Saffell lives in Nashville, TN and works in the music industry. She enjoys spending time with friends, concerts, and volunteering for a local youth wheelchair sports and independence group. 

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