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From the day she was born, Monica Gärtner has faced challenges most could not imagine. She has a very rare bone disease called Osteogenesis Imperfecta, causing her bones to break easily. As a result, she has had over 500 fractures – something as small as a cough could cause a broken rib.
As a child, she felt excluded from day-to-day activities in school and was bullied, taking an immense mental toll, and leading to suicidal thoughts. She couldn’t see a future for herself. But she persevered, completing her studies and becoming strong enough to manage many tasks – such as getting items out of a fridge – that might have seemed impossible.
Despite facing discrimination at every turn, Monica gained full time employment. She was underestimated and overlooked for roles and promotions by employers because of her disability and had to work extra hard to prove herself time and time again.
After two car accidents, a fall out of her chair, which resulted in multiple fractures, and months and months of rehabilitation, she continues to work full time. Less than a year ago, both of her lungs collapsed. Her medical team didn’t think she would survive, and she was denied certain supports because they feared breaking her bones. But Monica did survive, is back at work, and continues to defy the odds.
Remarkably, Monica finds the time and energy to fulfill her life’s mission: to show that people living with disabilities can live equal lives to able-bodied people. She selflessly shares her story through public speaking, writing and acting. In 2016 she published a book Overcoming the Impossible-A Life of Trials and Triumphs about her story. She also founded the Canadian Assisted Travel Society to support people with disabilities who want to travel. She has volunteered her time on multiple charity boards, and mentors her peers.
A Conversation with Monica
What inspired you to establish the Canadian Assisted Travel Society (CATS), and how has your personal journey with Osteogenesis Imperfecta (OI) influenced its mission and goals?
Myself and a few friends got together to discuss our favourite topic. It was getting increasingly difficult to travel with family and friends because of aging parents and friends getting married and subsequently having families of their own. The Canadian Assisted Travel Society mission and goals has not been influenced by me having OI, but rather I believe if a person with mobility disability needs assistance while traveling then one should get the assistance. Since I do have OI, I am very careful on whom I choose to travel with me. I try and reduce the risk of injury to myself or my caregiver.
How do you navigate the challenges of travel, and what are some key considerations individuals with OI should keep in mind when planning trips?
I always ensure the person I am traveling with is capable of lifting me in small places. The person has to have great balance and not hold me too tightly, so I don’t break. The caregiver needs to be physically fit because I may have to lay down on the floor for toileting. There is always a chance I can fracture, so I always bring strong painkillers with me. I purchase medical, and trip interruption insurance for both my caregiver and myself. Safety always comes first, so I don’t take chances when transferring.
Any memorable experience from your travels that highlights the importance of accessibility and support for individuals with disabilities?
I have not been able to use the toilet on the plane for decades because the bathroom is so small. I usually go on a bedpan on the floor. I also have more pain in my back now because of the car accidents I have sustained. I wish that I could afford the business class seat so I could lay down, but it’s too expensive while traveling long distance. I sometimes will lay down on the floor in front of my seat, but this is getting dangerous due to turbulence. Alternatively, I wish the airlines would allow us to bring our wheelchairs on the plane and have a tie down system so it would be more comfortable for us.
What are some common misconceptions people might have about travelling with a disability, and how does your organization work to dispel these myths?
Most people think people with disabilities can’t afford to travel and when we do many people tend to look to your caregiver for guidance instead of asking the person with the disability. Also many people who are newly injured or have acquired a disability don’t think it’s possible to travel and that it takes so much effort. It does take some investigative work, but everyone does some research when they want to go on vacation.
In your opinion, what changes are needed within the travel industry to make it more inclusive and accommodating for individuals with disabilities?
The travel industry needs to provide a place for us to sit within the aircraft. It would be far more comfortable, less pain and anxiety. A caregiver can sit behind us and give us a break on the cost of the caregiver seat. In Canada, we no longer have to pay for the cost of the caregiver seat, but we do have to pay for the tax for that seat. I think that’s fair, and that model should be expanded to not only domestic flights, but also international flights.
How does the Canadian Assisted Travel Society collaborate with other organizations or stakeholders to advocate for better accessibility and support in the travel sector?
The Canadian Assisted Travel Society needs to do more collaboration with the airline industry. We have currently been focusing on the end user and educating people with disabilities that we exist, and also holding fundraising events. During our fundraising events we educate the public on the challenges of traveling when you have a disability and also give some practical advise such as planning ahead.
What programs or initiatives has your organization implemented to enhance the travel experience for people with disabilities?
We have a travel grant program. We invite people with disabilities to complete a form and outlines the person’s travel plans. This plan includes the cost of taking a caregiver, and why the person needs a caregiver in the first place. We pay for part or all of the caregiver travel expenses depending on the amount of money we raise.
What advice would you give to someone with OI or who dreams of travelling but is hesitant?
It’s very important finding the right person to take with you. Recognize no one is perfect and don’t expect a perfect trip. Be open to changes in your plan because sometimes you will face the unexpected. That happened to me recently when I went to Antwerp, Belgium. I received information from the Antwerp travel info as to what I can see that is wheelchair accessible; however, they failed to tell me that you have to book a taxi three weeks in advance or you will not be able to get order a taxi. I had to modify what I wanted to see.
From your perspective, how does traveling with a disability contribute to personal growth and what have been some of the most rewarding aspects of your own travel experiences?
My travelling began when my parents took me to Germany with my sister when I was ten. I met my cousin who was developmentally and physically disabled. Travelling opened my eyes not only to various cultures, but to the realization that there are people with disabilities all over the world. We all struggle in our challenges and we all strive for acceptance. Thinking back when I was in my late teens my family went to Toronto Ontario. My parents wanted to show us where they lived before we moved to BC. By that time, I had an electric wheelchair. The airline in BC let my chair and batteries on the airplane; however, on our way back my batterie were not allowed on the plane. A steward escorted us through the Toronto airport and said, “In all my 30 years working in the airport, I have never seen anyone in a wheelchair travel.” In my head, I said get used to it because we aren’t staying home anymore! Every now and again, I think about that conversations it give me great joy and satisfaction that people with disabilities are traveling all over the world.
Looking ahead, what are your hopes and aspirations for the future of accessible travel, both in Canada and globally?
It is my hope that one day people with disabilities that use an electric wheelchair will be able to sit in their wheelchair while on the aircraft in Canada and around the world. It would reduce pain and discomfort we feel while traveling. It certainly would be great if planes had a wheelchair accessible toilet on board, but that may be more difficult to convince because it of the space. A curtain around the wheelchair would allow for some privacy while using a medical devise to go to the washroom. In addition, I would like to see international flights give people with disabilities a 50% discount when buying a ticket for their attendant. This would include business class seats, so that a person with a disability that has back pain can lay down while traveling long distanced of 8 hours or more.
There needs to be more wheelchair accessible accommodations and transportation in Europe. I can’t speak for the rest of the world, because I haven’t travelled to every country yet. Society needs to learn that not all people with disabilities are on government assistance. We work, and we have disposable income, therefore, we are good for their local and global economies.
“As a person with a disability, I have had my share of emergency department visits. I survived getting hit by a car twice, falling out
of my wheelchair which resulted in five fractures, and last spring I got pneumonia which subsequently led to both of my lungs collapsing due to a drug overdose. However, when I’m not injured I work full-time for the Government of Canada in the area of Human Resources. In my spare time, I created the Canadian Assisted Travel Society, and wrote a book called “Overcoming the Impossible – A Life of Trials and Triumphs.”
“I’m not a superhero, I’m just a woman with a disability that has a great deal of perseverance and a desire to help my community live with dignity.”
