Tag: Disability

Accessible Fun and Recreation Isn’t just for Kids

Jessica GeboersLeave a comment

Each provincial Easter Seals organization offers a variety of support and recreational programs tailored to the needs of its demographic. For example, one of the program Easter Seals offers across Canada is camps for families, children, youth, and adults.

As a kid, camp was the event of the summer, maybe even the year for me. I lived for it. I counted the days until I could be back on the magical peninsula of Easter Seals’ Merrywood Camp in Perth, Ontario.

Camp Merrywood was the one place where everything was accessible. Where I could be myself, and it was pretty much the only place where my Cerebral Palsy wasn’t an issue, problem, or barrier. In fact, having a physical disability, such as CP, was a requirement to attend. We were the majority; thus, the environment was built with us in mind.

Everything at camp is accessible, including automatic doors, ramps, and paved paths everywhere. And when they couldn’t make an area or activity 100% physically accessible, such as getting in and out of a canoe or sailboat, they had young, strong counsellors trained and available to help as needed.

I grew up going to physical therapy and social programs at Grandview Children’s Centre, so I had a group of peers and friends with disabilities. However, this is not everyone’s experience. For many, camp is the only opportunity to spend time with peers with similar experiences in an environment that was made for them. It can be very isolating and tiring to be the only one with a disability in most of your environments.

Whether it be at camp or other recreation programs, time with disabled peers is an invaluable experience for kids and youth living with disabilities.

But beyond camps, what other recreational programs are available for adults with disabilities – particularly when they age out of recreation programs designed for youth?

No matter how old we get, we should always be open to and looking for new accessible experiences that provide life-long opportunities to be active, learn, explore, and socialize. Trying something new might be scary, but it’ll also be fun and rewarding.

Here are just a handful of accessible recreation options to get you started.

Skiing

Jessica skiing

By the fall of 2016, I had been out of university and working from home for a year. I was beginning to think about the impending winter. I dreaded how the cold and snow would keep me stuck inside even more than my work already did.

That summer, I was hired by Easter Seals to work as a counsellor at Camp Merrywood., Some of the older campers told me about how much they loved to sit ski. While I’d known about adaptive skiing and had a friend who was also a sit-skier, it had never really occurred to me to try it. No one in my family skied. I wasn’t athletic. And I hated winter.

But I needed an activity to help get me out of my apartment and socialize. Downhill skiing sounded thrilling, like my beloved sailing on snow rather than water. Research led me to the CADS website (https://cads.ski/en/divisions), where I found ADDS (Adult Disabled Downhill Skiers), a local club that charted a bus (perfect for me as a non-driver) from Toronto each weekend from January to March. While the $300 I would need for both CADS and ADDS fees were reasonable for lift tickets, bus, lessons, and equipment rental, it was more than I could afford at the time. I discovered through a bit more research that the Ontario Federation for CP offers financial assistance for such activities. I applied and was ready to hit the ski slopes within a few weeks.

Fast-forward five years, I love speeding down the hill in a sit-ski. I’m still learning but improving with each season. And I met people who are now some of my best friends, both on and off the ski hill.

Sailing

Jessica driving a sail boat while wearing a yellow.
Jessica sailing in Toronto Harbour

Sailing has been one of my favourite activities since my early days at Easter Seals Camp, and I was often curious if it was possible to find accessible sailing closer to home. So when I moved to Toronto for university in 2011, I was introduced to AbleSail, a network of non-profit organizations in cities across Canada offering accessible sailing programs and opportunities to youth and adults living with disabilities. Thus far, I’ve sailed with friends and volunteers in Toronto and St. John’s, Newfoundland. I love the feeling of the wind catching the sail and propelling the boat forward. Like skiing down a hill, speeding along on the water is thrilling.

Rock Climbing

While I haven’t tried adaptive rock climbing yet, I recently heard about it from a friend, and now it’s on my list of things to try next. I loved bungy jumping, sky diving, and Easter Seals’ Drop Zone fundraiser, so I think rock climbing could be right up my alley. It seems like another great way to stay active and get a bit of exercise. The Canadian Adaptive Climbing Society offers programs in Ontario and British Columbia.

Wheelchair Basketball, Sledge Hockey, and Para-swimming

These might be three of the most well-known adaptive sports for people living with disabilities. I initially assumed they were so common that I almost didn’t include them in this article. While I’m not skilled in these sports, I know many enjoy wheelchair basketball, sledge hockey, and para-swimming. I’ve heard many stories from friends about how these sports have provided Canadian athletes with disabilities opportunities to learn new skills, stay active, make friends, and even travel.

Travelling

This last one might seem crazy to some but hear me out.

Travelling can be challenging for people living with disabilities, often requiring courage and planning. But it’s possible! There are so many exciting places to see and people to meet. There are so many adventures to be had. You could start small. Take a day or weekend trip to explore a local city. Visit a friend who lives out of town but is maybe only a train ride away.

t would be easy to say that my love of travel started in 2014 when I spent a semester studying and exploring New Zealand. This was when I realized I could travel independently, find or create accessibility, and, along the way, make friends from around the world.

Since then, I’ve toured much of the UK and Ireland; spent a long weekend in Italy; vacationed in Mexico; followed my favourite band to San Diego; roundtripped from Houston to New Orleans and Austin; and saw my first real-life iceberg in St. John’s, Newfoundland. Just to name a few adventures.

But my interest in travel started with my family and friends when I was much younger. At least a couple of times a year, my parents would pack my two younger siblings and me in the car for cottage and camping weekends, often exploring the local town, food, and attractions. We also loved weekend trips to Niagara Falls, where we could explore Clifton Hill, swim in the hotel pool and order room service. Then, when I was a teenager, we started flying to Alberta and California to visit family and then taking roundtrips in and around those places. These family adventures showed me there was more out there to see.

Now that I’m an adult, I always look for accessible travel opportunities. Thus far, organized and hop-on-hop-off of bus tours have been the biggest key to my success. Most cities have a hop-on-hop-off tour bus that hits all the must-see spots. I usually ride the route twice–once to see the city and hear the history, then again to get to where I want to go.

Organized bus tours are also a great way to cover a lot of ground, stopping along the way to see the sights and make friends with like-minded travellers who are happy to lend a hand when needed. Bus drivers are well informed and usually glad to help me make my experience as accessible as possible, whether by turning a walking tour into a driving tour or calling ahead to the hostel to ensure I have a room on the ground floor with an ensuite washroom.

When planning a trip, I do a lot of research to familiarize myself with the area. For example, is there public transit­­––is it accessible, and how much does it cost? What do I want to see and do? Where can I stay? What are the food options? Are there options and discounts for people with disabilities? While many like to stay outside the touristy areas to save money and avoid crowds, I find that it is often most accessible to stay where the action is because everything I need is nearby––including transit to other areas I may want to visit.

Several blogs, websites and companies also specialize in accessible travel. It is always helpful to learn from those who have come before. Access Now is a tool that puts this idea into practice by crowd-sourcing accessibility information of public places from the people with disabilities who have been there. Not sure if a specific restaurant is accessible? Look it up on Access Now. I recently discovered Accessible GO, which is excellent for finding accessible hotel rooms. And March of Dimes Travel offers everything from organized day trips to cruises for travellers living with disabilities. And last but certainly not least, Easter Seals’ Access 2 Card Program is a great way to explore Canadian attractions more affordably with a friend/support person in tow. Research is key and can be a lot of fun!

Trying new things can be nerve-racking. However, we must not let fear hold us back from opportunities to learn, grow and make new friends, partially into adulthood. We never know where it could lead; maybe we’ll find a new passion.

Originally published by Easter Seals Canada.

How one Toronto woman with a disability survives our winter

Jessica GeboersLeave a comment

I’m not too fond of winter. 

I know I’m not unique. Few people seem to like the cold, the snow, the freezing rain, the ice or the slush, regardless of whether they’re walking or driving. Shoveling seems like a thankless chore. And getting salt or sand on your shoes and boots is a pain. But having a physical disability can take the struggle to the next level.

I have cerebral palsy.

I live in Toronto, near Greek Town, and walk and take the TTC almost everywhere. The cold weather makes my already too tight, and often sore, muscles hurt even more. I walk pretty well with my canes in the right conditions, but a surprise obstacle or strong wind can quickly bring me down. Add in lots of snow and ice, and I fall a few times a week.  Sometimes I hurt myself, but more often I’m annoyed that my clothes get soaked, or covered in salt. 

I do have a manual wheelchair, which I use for speed and distance, and it significantly improves my stability. But it’s impossible to get over the snowbanks that our plows so thoughtfully push in front of crosswalks.

In my wheelchair, a snowbank might as well be a cement wall. With my canes, it’s a mountain to summit. I often fall, but I usually eventually make it across. On the bright side, falling into a snowbank can be a great way to make friends.

Getting around a snowbank in a wheelchair often means wheeling on the road between the first two shoveled driveways I find, while praying not to get hit by a passing car. Most people know what it’s like to get salt stains on their boots or shoes. In a wheelchair, those stains end up on your coat sleeves, which drag on the wheels, or pockets, which don’t usually stay behind the clothing guards.

I’m lucky to have the ability to choose between mobility devices; not everyone has that luxury.

If possible, I only go out when it’s above -5 degrees Celsius and/or there’s no snow on the ground. 

If I had my choice, I’d be a snowbird. My maternal grandparents are from Edmonton, but began spending winters in Palm Springs about 15 years ago. Since then, I’ve visited every year or two, usually in January or March, depending on when most of my family can go.

Palm Springs is pretty accessible, thanks to its aging population. Seniors and people with disabilities have a fair bit in common in terms of aches, pains and mobility challenges, and share an appreciation for anything that alleviates those concerns. I’ve noticed that we both tend towards guided tours: most aspects of the trip are sorted for you, particularly transportation, which is helpful for those of us who can’t drive or walk long distances.

My family and I spent this past Christmas in Palm Springs. It was fantastic to spend the holidays with my grandparents and to be warm, with no snow to contend with. Most days it was 15 to 17 degrees Celsius. The evenings were chilly, but not cold. Locals knew we were visitors when they saw us in a t-shirt and a hoodie at night, while they wore puffy jackets and toques. On Christmas day, they were surprised to see us swimming in the community pool.

Unfortunately, I’m only 30, and not in the position to fly South each winter. Here are some of my local winter survival strategies.

I order my groceries online from Grocery Gateway, and have them delivered about once a month. Honestly, I do most of my shopping online now. I even get my quad canes from Amazon. This was my last pair. 

Otherwise, I’m mindful of my outings, and complete multiple errands at one time. I plan my route along wider sidewalks, because they tend to be cleared of snow, or use connected buildings that I can walk through, to avoid the outside. I work from home whenever possible. This is particularly handy when freelancing.

I do struggle with mental health, so to keep isolation and depression at bay, I try to stay busy and social. Spending time with friends, on the phone or in person, is vital. We’ll often get together at my apartment and have food delivered via DoorDash or Uber Eats. Tacos from Mi Taco are my go-to.

I’ve also taken up sit-skiing. About four years ago, I decided I needed an activity to get me out of the house during the winter, and maybe improve my relationship with snow. I’m not athletic, but I love a thrill.

Weaving downhill in a sit-ski is a thrill, even if I fall on my face. I’m still learning, but make progress each season. Rather than a volunteer holding on to my ski to keep me up, they’re now a couple of feet behind, supporting me with tethers. So, I have to keep myself up and I get to make my own turns. I recently figured out how to catch myself with my outriggers, which are like ski poles, when I lose my balance, avoiding a full wipe-out. That’s a major accomplishment. I hope I can do it again.

Joining the Adult Disabled Downhill Ski Club at Mansfield Ski Resort has kept me moving and learning new skills, while making new friends, some now very close.  I’m even a little fonder of winter and dislike snow a little less, at least on the ski hill.

I still dream of being a snowbird. In the meantime, I’m making the best of winter in Toronto and on the slopes.

Originally published by BLOOM.

What do you say about your disability in an interview?

Jessica GeboersLeave a comment

I'm spending the summer working as a counsellor at the best place in the world, Easter Seals' Merrywood Camp––for children and youth with disabilities––in Perth, ON.
I’m spending the summer working as a counsellor at the best place in the world, Easter Seals’ Merrywood Camp––for children and youth with disabilities––in Perth, ON.
I got my first paid writing gig with this very publication in March 2015. I had finished classes and was visiting my grandparents in California. When I got the email, I couldn’t wait to call home to tell dad that someone was going to pay me to write. I knew that he worried about me finding work.

That’s not to say that I wasn’t worried, but it’s different knowing your parents are concerned about your future. With a college diploma and university degree—both in journalism—I didn’t want to disappoint my parents after spending so much time and money in school.

I graduated from Ryerson University with a Bachelor of Journalism on June 7, 2015 and I’ve been looking for work ever since.

That’s not to say that I haven’t been writing. I’ve been writing and published pretty regularly over the past year on the topic of disability. I’m using my talent and love for writing to spread awareness on what I know best. It’s the dream. But I’m not sure I have the makings to be the kind of freelance writer who can juggle enough work to pay the bills.

So I’ve been on the hunt for a day job—full- or part-time. It’s a tough job market for anyone right now, especially recent grads. Gone are the days when a college diploma or university degree guaranteed our parents a job for life.

That’s difficult when people are this educated. It’s even more challenging when I have to consider my physical and learning disabilities. Unlike a lot of people my age, I can’t really work retail or as a waitress or any other job that requires me to stand for long periods and carry heavy objects.

I can’t hide my cerebral palsy. I can only hope that employers aren’t blinded by assumptions about what I can and can’t do, and give me a chance based on my qualifications. So far, no one has come right out and said anything about my physical disability. But I can sometimes tell they’re surprised or uncomfortable when they first meet me.

My learning disability has been more of an issue at job interviews.

In school, a learning disability is challenging but manageable. We have rights to accommodation—for me this often meant copies of notes and extra time on tests. There are policies and people in place to help level the playing field. You just have to know who and what to ask for. However, at no point during my post-secondary education did anyone explain how to advocate for what you need in the workforce.

Thanks to the Accessibility for Ontarians with Disabilities Act, many employers state that they are equal opportunity employers who don’t discriminate against those with disabilities. Some, including the City of Toronto, have explicit policies and procedures for those who need accommodation during the hiring process. I appreciate and wish that all employers had clear policies for accommodation during job assessments.

Recently I’ve sat a few.

In two cases I was told I was just having an interview, but when I arrived, the employer asked me to take a test. The first time, because I hadn’t been given a heads-up, I felt unsure, uncomfortable and annoyed.

Usually, I need a bit of extra time, a computer, spell check and a calculator. Without them, I knew the test wouldn’t be a fair evaluation of my abilities. But I wasn’t sure I should tell the employer about my learning disability. Should I or shouldn’t I? I didn’t want to be taken out of the running. So I didn’t.

The second time I was invited by email to a job interview for an administrative assistant, but when I got there it was an exam. In fact, there was no interview!

I was a bit thrown, but I figured I’d make the best of it. Then I eyed the math section on the test and my “can-do” attitude evaporated.

I’m terrible at math, thanks to my learning disability. My learning disability affects my comprehension, spelling, grammar and math skills. I’ve been able to find ways to manage the first three issues, but I’ve never found a way to wrap my mind around math.

In high school, I only took locally-developed and workplace level math. As a result, there was math on that job test that I’d never seen before. When I got home and told my roommate about the letters and brackets, she told me that was called algebra!

I did ask if I could use a calculator. When they said no, I asked if I’d be able to use a calculator on the job. Oddly, they said that would be fine. Throwing caution to the wind, I came clean and told them about my learning disability. They looked uncomfortable and told me to do my best. Not surprisingly, I didn’t get called back for an interview.

So while my search for a day-job continues, I’ve realized that I have nothing to lose, or be ashamed of, in being upfront about my learning disability. In future, if invited to an interview, I’ll ask if it includes an assessment. If it does, I’ll let people know about my disability before we meet.

From here on out I’ll look for, inquire about and follow any procedures necessary for accommodation during the hiring process.

If an employer has a problem with my disabilities and doesn’t wasn’t to accommodate me, I probably don’t want to work for them anyway.

Originally published by BLOOM.

Me Before You: A missed opportunity but not completely terrible

Jessica GeboersLeave a comment

me_before_you_filmThis may an unpopular opinion, but I didn’t hate Me Before You. I can almost hear friends in the disabled community booing me off their screens. And I mean no disrespect to those who came before me on the topic of this film. But I did not hate it.

I went in prepared to hate it. But it was a charming, funny and ultimately sad film about a girl learning to embrace and enjoy her life while she could.

Although the man who inspired this in Louisa ultimately decides to end his life rather than live confined to a wheelchair, in constant pain and vulnerable to life-threatening illnesses, he knew what it was to really enjoy and make the most of life. Before his accident Will lived an extremely active and busy life full of work, sports, travel and women. It’s not surprising, he didn’t handle life with a disability that left him almost entirely dependent on others for his every need and want. While Will appreciated Lou’s effort to show him all the things he could do, he was not willing to compromise on the life he had before his accident, or continue to be a burden on those he loved.

An argument could be made that Will is a hypocrite for preaching to Lou, but he speaking from previous experience, wanting her to appreciate the ease with which she could do things. I have been disabled since birth and while I have my own struggles, but I don’t know any different and most necessary accommodations are just another day in my life, taken on without much extra thought. I’ve always thought it would be a lot more difficult to have become disabled after being completely able; knowing first-hand what I’ve lost. Reliant on my voice to ask for or gracefully refuse help from those around me when necessary, I had a hard enough time having laryngitis that left me unable to speak for myself when I fell and the people trying to help were actually doing more harm than good. I know it’s a weak comparison but I appreciated my voice so much more when it returned after two weeks of unfamiliar and uncomfortable struggle. However, if for some reason I were to lose my ability to speak, I’m confident that I would eventually adjust, probably with a bit more ease than some because I know people in a similar circumstance and am aware of some communication alternatives. But not everyone has this advantage or is open to learning and adapting to a new reality.

Thus, Me Before You is also a film about the freedom of choice, told through the story of one man. While I believe this story has a message, it is not meant to speak for all of us. I support the right for one to choose to end their life when they are facing a painful life ending in an even more painful certain death. My only concern is for those giving up too soon, making a rash decision out of fear and uncertainty. However, I do not feel this is the case with Will. He was living in constant pain with little hope of improvement and a high chance that his life would end early due to some illness or infection that his body was too weak to fight. He’d lived with his condition for a few years and, even after falling in love with a woman who loved him for him, his mind was unchanged. I’ve read the book and seen the film, both twice in light of the controversy, and I don’t believe anything or anyone would have changed Will’s mind at that point in time.

I was pissed when I first read the book (without knowing much about it then) and discovered that he went through with it. I kept reading, hoping he would change his mind and become open to love and accommodations that would enable him to live a full life, even with a disability. But upon reading it a second time in preparation for the movie and this blog post, I still wish it had ended differently but came to understand that it was his choice. But it was clear in both the book in the film that no one in his life wanted him to die, but realized they could disagree but still love and support him.

Do I wish they had taken this golden opportunity to show people with disabilities in a more positive light? Completely.

There needs to be more films about disabled people living their lives, just as there about able-bodied people. Those of us with disabilities may have challenges and considerations that others may not, but otherwise, we live quite ordinary lives. Film has a much further reach than print and, as such, has a responsibility to spread awareness to the masses, or at the very least be mindful not to reinforce, negative and narrow views of life with a disability. My hope is that the outcry and protest over this film will force Hollywood to consider making films that tell stories of characters with disabilities living full and active lives.

Additionally, I implore those with the desire to write their own screenplays about people with disabilities to do so. Just as I use my love and talent for writing to have a voice and advocate for disability awareness, use your skills to drive your passions and make change.

 

For Torontonians with Disabilities, Riding the TTC is Still A Struggle

Jessica Geboers1 Comment

ttc

For me, public transit has always meant freedom. After living my high school years in the boonies, with only a handful of other houses, a general store, and town a 20-minute drive away, to say I was excited to go away for college is an understatement.

After living in Ottawa to attend Algonquin College in 2008, I learned what it’s like to get around with relative ease, to hop on a bus to get to a movie theatre or mall without any aid.

In 2011, I moved to Toronto and lived in residence at Ryerson University. Again, I was surrounded by public transit. But there were pitfalls, and though I live with a moderate form of Cerebral Palsy that allows me to walk with two canes, I found myself struggling to get around the city.

Five years later, the TTC still isn’t completely accessible for Torontonians, like me, with disabilities.

As it stands, 34 of Toronto’s 69 subway stations are currently accessible—that is, they each have accessible entrances, fare-gates, and elevators. The Commission has plans to update all remaining inaccessible stations by 2025, per the Accessibility for Ontarians with Disabilities Act (AODA) requirements.

I’m lucky that I can use my canes to walk up stairs when necessary; but many, like those who use wheelchairs or walkers, don’t have that option. If an individual with a wheelchair needs to be in the Wellesley or College area, for example, he or she has to commute from Dundas or Bloor stations, which each have elevators in service, or arrange alternative transportation, such as a bus or Wheel-Trans. At best, the inaccessibility of these stations is inconvenient. At worst, it hinders many from getting to where they need to go, and reinforces the embarrassment that is associated with an inability to act independently.

Matt Hagg, senior planner of system accessibility, recently assured me in an email that the TTC is on track to meet the 2025 goal. The current schedule has St. Clair West and Ossingtion stations as a priority for 2016, with Woodbine and Coxwell following in 2017. Warden and Islington will be the last stations brought up to standard because they are two of the most complicated reconstructions, with multiple bus bays, each with their own staircase.

Accessible station priorities are made with the consultation of the Advisory Committee on Accessible Transit (ACAT) and within the requirements of the AODA. Criteria for such priorities include: proximity to health care and education, demographics, transit connections, ridership, and location. These criteria were last re-affirmed in March 2013, with Old Mill Station, considered then to have the lowest ridership, as the point of reference.

ACAT meets publicly once a month at TTC headquarters, providing advice to the TTC board and staff on issues of accessibility, representing seniors and people with disabilities in Toronto. The committee has four sub-committees that looks even more closely at Wheel-Trans, communications and customer service, planning and training of staff, and the design and planning of TTC stations and vehicles. “ACAT’s input is highly valued by TTC staff,” says Hagg, “and many accessible features of the TTC stem from the advocacy of ACAT.” Blue priority seats, written descriptions of TTC stations for people with vision impairments online, and improvements to the subway platform edge at Eglinton Station to minimize the gap between trains and the platform are just some examples of service improvements ACAT has initiated.

ACAT is also consulted about PRESTO, which recently reached two million customers. While I agree that the system has the makings to be a highly accessible option—it is much easier than trying to mange coins or tokens—I was concerned when I noticed that PRESTO machines at accessible stations were not consistently placed at accessible fare gates. Vanessa Barrasa, senior advisor, communications and public affairs, wrote in an email that Metrolinx is committed to accessibility and will continue to seek feedback and make adjustments with future updates of machines and software. The TTC, however, is responsible in the placement of PRESTO machines. Hagg says PRESTO will be available at each station by the end of 2016, and at every fare gate by mid-2017.

Still, the process can feel incredibly slow for those in need of accessible transit options. According to Hagg, a typical station accessibility project takes five years to complete: two years to design and three spent in construction. This, he says, is a complex process due to property requirements, electrical upgrades, and third-party stakeholders. When it comes to property requirements, Hagg said most stations need property acquisitions, easements, or development contracts from outside parties, all of which requires a lot of coordination and cooperation from the City and anyone else involved, taking up to two years per station. Electrical upgrades, required for elevators, involve the help of Toronto Hydro, which can be challenging to schedule as the utility company already has a full plate of competing priorities. This is all made more challenging, Hagg points out, by the fact that most stations are underground, meaning that elevator construction requires major relocations and evacuation—all while still maintaining service to get people where they need to go in the most efficient way possible.

Above ground, meanwhile, only the 509 Harbourfront and 510 Spadina routes are run by the new accessible streetcars. But progress is being made: At ACAT’s May 26 meeting, the TTC announced that on June 19 the new 514 Cherry streetcar will be accessible. On the same date, the 72 Pape bus route will be extended to Union Station. This could increase accessibility for some by eliminating the need to transfer between subway lines.

Looking back on my youth spent without access to transit, I recognize that my situation in Toronto could be much worse. But the TTC must continue to prioritize accessibility for commuters like me. In the meantime, we’ll continue our nine-year wait for full station accessibility across the city. It may be a long wait, but it’s an important one.

Originally published by Torontist.

What I Realized About My Disability and Life at 13,000 Feet in the Air

Jessica GeboersLeave a comment

JGeboers_NZSkydiving

This time last year, I was in the middle of a semester as an exchange student at AUT University in Auckland on New Zealand’s North Island. I’ve wanted to travel ever since I watched my aunt stuff rolled-up socks into her boots to make room in the suitcase she was taking to England. As cliché as it may sound, I wanted go everywhere and see as much as possible. I have cerebral palsy, and I’m physically unable to carry a backpack large enough to accommodate a trip longer than two weeks. So taking part in a school exchange program to New Zealand gave me the perfect opportunity to travel light within my host country.

My time in New Zealand was a turning point. I left some of the most challenging aspects of my life behind in Toronto, leaving me free to be a happier, more authentic version of myself. I don’t pretend to think that this is unique; who wouldn’t feel this way in a new place with new people and fewer responsibilities?

Despite the years I had previously spent living in student housing, it wasn’t until I was at AUT that I had a more conventional social student experience: bonding with roommates over food and TV, attending parties, dinners, movie nights and study sessions with friends in the building. Having a large support system of fellow exchange and international students around me at AUT was one of the best experiences I have ever had. For the first time in a long time, I didn’t feel misunderstood and alone.

Often, groups of us would get together on weekends and days off from classes to sightsee and travel around the fairly small country. As such, the two-week mid-semester break was our opportunity to take the bus to the South Island, particularly Queenstown: the adventure capital of New Zealand and the birthplace of bungee jumping.

Bungee jumping was a dream of mine. But after making inquires, I was told I would need a doctor’s note, saying it was safe for me to jump, even with a waist harness, given my cerebral palsy. But when the bus driver announced skydiving as one of the available activities, I thought, why not tick this off my bucket list and see the sights from the air?

All things considered, I gave jumping out of a plane the least amount of thought and preparation of all my New Zealand adventures. I figured that as long as I was strapped to an expert and landed on my butt, all would be well. They assured me when arrived that my disability was not a problem. In fact, they had a monthly repeat jumper who was a paraplegic, so someone as light and able as me would me a piece of cake. 

The only seemingly intentional accommodation they made was to ensure that I was the last to get onto the plane, which meant I would be the first to jump out. A cameraman helped me get my legs over the edge of the plane before jumping himself to videotape my fall.

During the first 15 seconds of jump, I was a bit disoriented and had to remind myself to breathe. But in the moments after that, I realized I could do just about anything. If I could move to the other side of the world, travel around one of the most inaccessible countries alone and jump out of a plane, then everything else was at least manageable.

Originally published by The Mighty.

Disability is part of my ‘normal’ life

Jessica GeboersLeave a comment

When I told my mother that I was writing for BLOOM, she said it was ironic given her memory that we were kicked out of Bloorview rehab after my rhizotomy surgery in 1994 for being “difficult.” I was a strong-willed child and she was opinionated and independent. But she was also quick to remind me that those so-called difficulties led to immediate and visible improvements after she made suggestions during a parent support group while we were there. “It was confusing and disorienting being in a new place,” she told me. “Some parents didn’t speak English. I figured that if I struggled then they must have even worse.” So those who appreciate being greeted by a smiling staff member to explain the ins and outs as they enter rehab at Holland Bloorview with their child have Susan Geboers, and other parents, no doubt, to thank.

My mother was the one who taught me I could do, maybe not everything (because no one can go everything), but a lot that others could. I don’t remember there ever being a question of whether or not I would go to college or university—in fact, I graduated from Durham College in 2011 and will graduate from Ryerson University on June 8—live away from home or have a career, date and one day get married. It was just assumed. I only recently learned that my parents were quietly worried this entire time, as pointed out by my father’s psychic (because my parents believe in that kind of thing). But I’ve been assured that it’s normal for parents to worry about their children’s future, regardless of their physical or mental ability.

I was born on January 23, 1990. Nine weeks early, I was about one pound and small enough to fit in the palm of my 19-year-old mother’s hand. It was two months and four more pounds before I was allowed to leave Sick Kids Hospital. Aside from my small size and wonky eyes, caused by an over exposure to oxygen at birth, I seemed like any other baby. It wasn’t until I was meant to start rolling over and sitting up on my own that my mom began to realize that I wasn’t reaching the normal development milestones. After multiple doctors and tests, at two years old I was diagnosed with cerebral palsy spastic diplegia. My mom says that when the doctor called to give her the news, she was so relieved just to have an answer that she said “Okay, thank you,” then hung up. It wasn’t until she began to think about it a few minutes later that she realized she had no idea what cerebral palsy was. So she called the doctor back. Unsure of what exactly my future would hold and not wanting to give my mother false hope, the doctor told her I would likely never walk. This is where, I believe, the problem begins.

In the 23 years since that cryptic prognosis, I’ve not only learned to walk but also relearned to walk after my rhizotomy and again after my leg surgery in 1999 (although my boyfriend’s mother doesn’t consider walking with canes to be walking). It took a lot of hard work by both my mother and I, but I seemed to have fared a lot better in life than the doctors predicted. I don’t blame them, as there are many forms of cerebral palsy and even the same form can differ further from person to person. For example, while my best friend, Hanako, and I both have spastic diplegia, she can walk on her own but I need at least one cane.

It hasn’t always been an easy life, full of the ups and downs of growing up. I’ve struggled with depression and trying to find my place in a world that I often feel I don’t quite fit into. I’ve felt like I’m stuck between the able and disabled worlds with a foot in each—too disabled to go unnoticed but not disabled enough to entirely relate to the disabled community. But despite all of this I’ve always considered my life to be quite unquestionably normal. This is why I find it odd, and a bit sad, when I meet people who are surprised to learn that I live away from home with a roommate, study journalism, spent a semester studying and traveling in New Zealand (during which I went skydiving and bungy jumping), love going to concerts and, not only have a boyfriend, but a boyfriend who is not disabled. This last point is particularly interesting given that I’ve never given much thought to dating someone with a disability. Not because I am a “disabled hater,” as Mom jokingly accuses me, but because most of the guys I come across in daily life are able-bodied. Once people move past their surprise, they often tell me what a great inspiration I am for being so accomplished. But while it is sometimes nice to hear I’m doing well, I hate the implied assumption that people with disabilities don’t do these things and that I am therefore special.

I recently saw a TedTalk by Tamara Taggart, whose son, Becket, has Down syndrome. She speaks about how the doctor apologized and consoled her when giving the news of her son’s condition, just five days after his birth. Tamara said that set the tone for all of the negative conversations with doctors thereafter about all of the things Becket would never do, such as walk, talk, go to school or fit in with his peers (to which the doctor actually said “yes, that is a legitimate fear, as people with Downs are often lonely.”) But she also speaks about another conversation she had with a very hopeful and empathetic oncologist a few years later when she was diagnosed with cancer. This doctor focused on all the positives and told her about how this experience would change her for the better. Tamara wishes that when telling her about Becket’s Down syndrome, the first doctor had offered the same hope and told her about how wonderful her little boy would grow up to be. Parents generally hear first about their child’s disability from a doctor. That’s why doctors should be more mindful of the negativity and stereotypes they are fostering.

It reminded me of how some friends of mine reacted when they were told their son had cerebral palsy—already worrying about how he would never have a job or get married. Don’t get me wrong, I understand fear of the unknown and mourning for the perfect life and child parents thought they would have. But age two is far too young to predict or write-off a child’s future. Having cerebral palsy doesn’t have to mean that the life a parent envisions for their child is impossible—it may just be accomplished in a slightly different way, or better than they could have ever imagined. Maybe he won’t play soccer, but maybe he will play sledge hockey, become a writer or go into the arts or sciences. Finding work is challenging to say the least but a good education, patience and connections are helpful—that’s how I came to be writing for BLOOM. Dating is not always easy (not that it is for anyone). My boyfriend’s parents are old-school European immigrants who dislike me simply because I have a disability. While that is a whole other story, what is important is that this is an extreme case that does not, and will not, happen to everyone.

Being aware of the science of your child’s condition and doing what needs to be done in order to improve their quality of life is important. But it’s also important to help them feel comfortable with themselves and their disability by calling attention to their positive qualities and potential to live a happy, productive and, possibly, somewhat ordinary life.

Originally published by BLOOM on April 2, 2015.

The power of language: voices for the disabled community

Jessica GeboersLeave a comment

My mother has always told me that I should do whatever possible to be a voice for the disabled community. At one of my lowest points on my journey to self-acceptance, she made me attend a leadership conference with the hope of building my confidence. While there, I reconnected with my childhood friend Chantelle Fogarty-Griswold. Chantelle would love to be a voice for people with disabilities, but the speech delay caused by her type of cerebral palsy (CP) makes this challenging. My CP doesn’t affect my voice, but I’ve never been one for public speaking. Instead, I decided I would write. In journalism school, professors advised us to write what we know. And throughout my time at Ryerson I’ve taken the opportunity to write multiple stories about what I know best: disability.

It’s difficult for stories about minorities, such as those focusing on people with disabilities, to be heard in the daily news cycle. When stories are published, these people are often depicted inaccurately. This becomes detrimental when you consider the power journalism has to inspire understanding and change. But recently, there’s been progress. Journalists at major Canadian newspapers such as The Globe and Mail and Toronto Star are becoming increasingly intrigued by disability-related stories and are being conscious of how they’re telling them.

Language is crucial for the disabled community. “The words cripple and crippled are offensive to the disabled and also too vague to be useful,” states the ninth and latest edition of The Globe and Mail Style Book. “If we must use a vague term, make it disabled.” As good as this is, it’s ironic because the guide also cautions against such generalizations such as “the disabled” or “the deaf.”

Toronto Star public editor, Kathy English, said in an email that the latest Star style guide, last researched and updated in 2010, encourages the idea that “a person is an individual first” and should not be reduced to just their disability. These ideals are good to know, but Sylvia Stead, public editor at the Globe, summed it up best in an email: “Ideally, word usage should be based on knowledge of the subject and also asking the person being interviewed how they would want to be described,” she wrote. “It’s important to stay current in terms of language usage, but also to listen to the individual.”

This is something that Tavia Grant aimed to do while working on a recent feature for the Globe’s Report on Business about the employability of those with disabilities. The piece was originally intended to be a short weekday feature after she attended the February 11 Rethinking Disability Conference hosted by the Ontario Disability Employment Network. “But I happen to have a great editor that thought, first of all, that it was a business story and gave it that prominence,” Grant says. Since she’s not a health or social issues reporter, she did her research and took her language cues from her sources. She admits it was a learning curve and although she still may have made a few mistakes, she was quite mindful of her work and tried to build awareness without perpetuating stereotypes.

Andrea Gordon, a Life reporter at the Star, often writes about developmental disabilities. She says that she sort of fell in to the beat over the years as one story about children’s mental health led to another. Since then, she has developed a passion for the bringing these stories to light. “I guess what I’m attempting to do is to provide a voice and present a perspective that maybe that isn’t often heard.” Gordon says the best way to accomplish this is to let the source’s voice drive the story. But she also tries to be mindful of language. “People get upset when they see too much use of the phrase ‘autistic child,’ ‘autistic person,’ versus a ‘person with autism;’ that kind of language people are really sensitive to,” she explains. “So you try to be respectful of that but, at the same time, there are only so many words, there are decks and headlines, and sometimes people take shortcuts and it’s out of my control.”

One of the challenges for journalists writing about a developmental disability—particularly with people who are nonverbal or unable to communicate with the written word—is the reliance on parents or caregivers. Though most parents know their child best “you still have to be sensitive to the fact that this is still one step removed,” says Gordon. That’s why it’s important to hear from those who can speak for themselves. “But there aren’t a lot of those people so maybe we need to look harder for them,” she continues.

Writer and activist Melissa Graham uses her blog Bitch on Wheels to make sure her voice is heard on matters affecting people with disabilities. On February 7, in reaction to the discussion of legalizing assisted suicide, she wrote, “Ableism, not assisted suicide, is what we need to work against.” Graham would like to see more people with disabilities writing stories. She often gets asked to speak about not just the experiences of her own disability, but disabilities in general. “I can’t speak for everyone and some journalists understand that better than others,” she says. “Some media outlets are more progressive than others, and it’s easier to get that message across.”

There are some journalists with disabilities who won’t report on disabilities because they don’t want to be branded as a one-beat reporter. While I respect this, I have no qualms about covering disability-related stories. In fact, I’ve began freelancing for Holland Bloorview’s BLOOM, a magazine for parents of disabled children. My goal is to use my knowledge and abilities to provide awareness and understanding of an often-overlooked and misunderstood community by writing what I know.

Originally published by the Ryerson Review of Journalism on April 16, 2015.