My friend and colleague, Luke Williams, and I worked on this piece together last spring. He had it published in the Summer 2016 edition of Outspoken! A fantastic piece about an important issue. Give it a read: Concert Accessibility
Last week, the Canadian National Exhibition changed its policy for people with disabilities, which previously allowed anyone with disabilities free admission to the annual summer fair. “If you want to be accepted as part of the rest of society and not be treated as some hopeless case then you need to participate and contribute to society too, whenever you can,” said the CNE’s disability consultant Laurie Sue Robertson.
After public outcry, that change was rightfully overturned.
Originally, the CNE 2016 Admissions policy stated that it was aiming to align its disability policy with those of other organizations in the region, such as the Royal Ontario Museum or GO Transit. It went on to state: “The CNE strives at all times to deliver its attractions and services in a way that respects the dignity and independence of all of our guests, including those with disabilities.”
It’s not a terrible concept. But it’s not a one-size-fits-all solution, either.
Robertson told CBC she was aware her opinion would be unpopular, especially with other people living with disabilities. (Robertson herself has arthritis.) “Why should I get in for free?” she told media. “If I can’t afford to go, then I won’t.”
But what Robertson’s argument excludes is a nuanced view of the obstacles many people with disabilities face. Many adults with disabilities—including me—struggle financially. While we do our best to contribute to society and pay our way, it’s hard to make ends meet. The already challenging job market can be even more challenging for those of us with limitations and considerations that most able-bodied people can’t fathom. The Ontario Disability Support Program helps, but it’s not much, with often only a few hundred dollars left for the month after rent and bills. A free or discounted admission every now and then is appreciated, and it helps us to better participate in the community when we might otherwise be limited by money.
Of course, money is central to these arguments. Charging more customers brings in more money, and greater revenue is a marker of success.
But it’s not like free or cheaper admission for those with disabilities is highly publicized. In my experience, I’ve had to ask for a discount, or I’d be charged full price. Only a few times in my life have I been unaware of a discount and had my money refused. But more often than not I am charged full price. So how much money would the CNE really save?
What’s important is for the CNE to consult a group of people with disabilities, take their feedback into account, and make a properly informed decision. Too often, our views and lived experiences are overlooked. And based on last week’s outcry, it’s likely the community isn’t keen on the proposed change.
The policy will be reevaluated in the fall. As for this year’s fair, people with disabilities and their caretakers will continue to receive free admission. Let’s hope this whole situation hasn’t left too many people with a bad taste in their months come August 19 when the wacky fair foods roll out.
Originally published by Torontoist.
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.
This 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 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.
The moment my Uber driver, Joe, sees me emerge from my apartment building, he steps out of his car to open the vehicle’s backseat passenger door. Once I hop inside, he adjusts the passenger seat, pushing it forward to make space for my legs. “Can I help you with anything? Give you a hand?” he asks when we arrive at my destination. I politely decline.
These measures might seem excessive—as if the driver were vying for a five-star rating. But for those like me with accessibility issues, going the extra mile (pardon the pun) can make all the difference.
Joe is a driver trained for Uber’s newest service, Assist, which became available in Toronto on Feb. 26. It’s the ride-share company’s attempt at making the navigation of the city easier for those with disabilities or seniors. I know the struggle firsthand: getting around the city with Cerebral Palsy (CP) is often a challenge.
Yet, for all the hubbub surrounding the city’s taxi wars, little has been explored regarding how competing services have dealt with accessibility. In the name of journalism, I tried both services to explore it myself.
Though Uber has been lauded as an industry-changing initiative, it’s taxi drivers who have long been revered as the (somewhat) accessible counterpart to the ride-sharing company. As Jonathan Kay divulges in his definitive Uber-versus-taxi storyfor The Walrus, Uber has long ignored the accessibility issue—but cabbies haven’t. “Traditional taxis have not done a sterling job of serving disabled passengers,” Kay writes. “But things are changing. Toronto recently has begun phasing in a new general licence that will utterly transform the city’s taxi fleet by requiring fully accessible vehicles…with folding ramps.” Taxi schools, he continues, also stress the importance of “safety and accessibility.”
It’s perhaps what has pushed Uber to unveil Assist. At the same price as UberX, the new service competitively offers extra assistance getting in and out of the car to those who need it. Drivers are also trained to load and unload the wheelchairs or mobility aids riders may have. All Uber drivers with a star rating of at least 4.8, such as Joe, were invited to attend a two-hour seminar in preparation for being an Assist driver.
Despite this, I’ve always thought that Uber was a great service for people with mild to moderate disabilities. I have been reliant on Uber for about a year when TTC is not quite enough. UberX was a real saviour last winter, for instance, when I needed to be at school everyday but snow and ice made it almost impossible for me to walk on down the sidewalks without slipping or falling.
While no two people are affected in the same ways, my CP predominantly effects my walking. I walk with two canes for balance and occasionally use a wheelchair if I am going long distances, or having more difficulties than usual. I don’t usually need anything special, but considering I can’t drive, a drive from point A to point B is often helpful. It is also great to be able to do this independently, without having to depend on my boyfriend to drive me around all the time.
So last Tuesday, I decided to try out Assist. I needed to go from my apartment, near Queen West and Beverly, to my boyfriend’s apartment, near Don Mills and Lawrence, but the snow would have made the hour-long public transit journey challenging.
I noticed a few days before that there were more Uber Assist drivers available in the downtown core than in North York, which could pose a problem for anyone living with disabilities on the fringes of the city. In my case, driver Joe arrived within just six minutes—just enough time for me to get down to the lobby. I was immediately surprised by his getting right out of the car to open my door; it’s not that I’ve never had an Uber driver offer to help, but those who are willing to do so usually only rush out of the car once they’ve noticed my canes. I appreciated his willingness, even if I didn’t need much extra help on this particular trip.
Joe was friendly and eager to chat so I took the opportunity to ask him about his experiences with this new service. He told me I was only his second Assist rider, but he was happy to do it. This isn’t entirely out of good will: While UberX drivers earn 75 per cent of the profit, Assist drivers are incentivized to train, earning 85 per cent per ride. The 26-minute ride set me back just $23.05.
When it was time to return home, I ordered a taxi via the Beck website. (I tried their app, but it kept crashing.) Similar to Uber, I waited only about six minutes, and the driver had no issue finding the address. I concede that finding a taxi outside of the downtown core is likely faster and easier than an Uber.
I knew that a taxi ride often costs about double that of an UberX, so I told Gordon, my driver, to take me to Pape Station. This trip took about 10 minutes and cost $23.43. As I was getting out of the car, Gordon asked it I needed a hand. I appreciated the offer and said thank you, but told him I was fine because I figured it would be more trouble that it was worth for me to explain how he could be helpful; unlike Joe, he didn’t undergo accessibility training.
My experiences in both Ubers and taxis are still limited: I didn’t bring my wheelchair this time (but maybe I’ll feel more comfortable bringing it in the future, thanks to UberWAV), and my needs might be less significant than those of other riders who require more assistance. How either would perform in more intensive situations is unknown to me.
The choice between Uber and taxi is a personal one, in which factors like availability, helpfulness, understanding, cost, and timeliness must be weighed. But beyond those factors, it is important to recognize that choice now exists. In a city where accessibility can often be lacklustre at best, Uber Assist and accessible taxis provide two new ways to explore—and that alone should be celebrated.
Originally published by Torontoist
I first moved to Toronto to study journalism at Ryerson University. Like other fresh-faced first-year students, I thought it made most sense to move into residence, with all of its perks and benefits. I couldn’t have asked for a better location: my new home was spitting distance from the building I’d spend most of my days in, and on a good day, it took me just 10 minutes to get from door to door. Armed with a meal plan and a few TTC tokens, and with Yonge and Dundas just a 12-minute walk away, I felt free.
My house hunts, since then, have not been as simple.
I have a mild form of Cerebral Palsy (CP). In my case, this means that from birth, the part of my brain that is supposed to tell my muscles to hold me up while I walk simply doesn’t. While other parts of my brain have picked up some of the slack, I walk with canes for balance, occasionally use a wheelchair, fatigue quicker than most people, and struggle with stairs. Ramps and elevators are much preferred and appreciated. And, despite the assumptions of many (particularly at inaccessible subway stations, as I move slowly down the stairs), escalators don’t help—I can’t lean on something that is moving.
Yet, even in a city as progressive as Toronto, few buildings—save for university housing—can accommodate my need for accessibility.
This Thursday, scholars, developers, and city directors will partake in a panel, dubbed AffordAbility, discussing affordable and accessible housing. It’s a much-needed conversation, one few who don’t encounter disability on a regular basis often forget about. I’ve had these conversations before: living with a disability permeates most facets of my life, including my living situation.
My daunting search for affordable, accessible housing began during my third year at Ryerson. I planned to spend a semester abroad studying in New Zealand; but in doing so, I was unable to save up the $6,000 necessary to make a residence payment upon returning to Toronto. Typically, students who go on exchange live off-campus, and in trying to finagle a spot in residence before I left for the semester, residence staff told me to do the same.
I, however, doubted this would work for me: my accessibility needs made a notoriously difficult Toronto apartment search nearly impossible—especially for a lease that would expire in less than a year.
Just before I left for New Zealand, my best friend, Katelyn, and I decided to move in together. Katelyn also has a mild form of CP, so the pair of us had a laundry list of needs: We agreed that we needed to be in the downtown core, walking distance from OCAD (where Katelyn was studying photography, and often had to lug equipment back and forth), close to an accessible subway station, above ground, and have an elevator if it was above ground level. For two women living with a disability, I feel these were not unreasonable requests.
Katelyn and I could scrounge up $1,400 per month for the place. Our budget proved to be a challenge—and I was pessimistic that we could find an apartment that suited all of our needs. While I was studying on the other side of the world, Katelyn and my dad would send me apartment listings, which seemed affordable in our desired area, daily. But most of them were basement apartments, which meant we would have to climb stairs every day. This thought left me feeling trapped: all I could foresee was the possibility of being stuck if I was ever having a bad day, week, or month that left me unable to climb the stairs.
I still count my blessings. Our search could have been more difficult if we required other accessible accommodations. Many who live with disabilities in Toronto require housing with wider doorways, space to get around in a wheelchair, accessible washrooms and showers, and lower kitchen counters and cabinets.
Accessible housing can be found through Toronto Community Housing, but the application process, which requires first applying for housing in general and then specifically to the Accessible Program, is long and tedious. There is also a wait list for housing that spans years, and a lengthy repair backlog to deal with.
It took a couple months of looking, not without some international bickering between soon-to-be roommates via Facebook message over what we were willing to live with and how much we could stand to spend, but Katelyn did find us an apartment near Queen West and Beverly. It met most of our requirements: it has one bedroom that I use, while Katelyn uses the living room area with access to the balcony. The apartment is on the seventh floor, with an elevator. Our building is right beside OCAD and 10-minute walk from Osgoode Station, which is accessible. I often order my groceries online and have them delivered right to the apartment, which compensates for the fact that the Loblaws near me is quite a far walk.
The building is older and not without its issues—but it’s about as accessible as I could hope for.
Like most people in their 20s, I hope to live somewhere nicer one day. But I am not looking forward to trying find another place that is accessible for me. Even if I’m able to one day afford to live in a fancy condo, I’d probably still be concerned that it shouldn’t be on too high of a floor—just in case the elevator goes out of order and I need to walk down those dreaded stairs.
Originally published by Torontoist
My boyfriend and I have been together for about five years. He is able-bodied, and I walk with canes. He’s never been phased by my cerebral palsy (CP) and actually seems to enjoy assisting me throughout our life together, such as carrying my laundry, tying my shoes when there’s no place for me to sit down to tie them myself or dreaming up ways to make activities accessible for the two of us — something that I appreciate and feel is quite nice.
Not wanting it to ever seem like he may have been hiding it, my boyfriend was very up front with his parents about my moderate cerebral palsy after our first few dates. I’m not sure why, but they were immediately devastated that their son would choose to date someone with such a permanent, restricting condition, which they assumed could only ever negatively affect his life. Although we have met a few times over the years, for the most part, I have been kept on the outside of their very close family. They refused to accept or acknowledge my being in their son’s life. I’ve faced discrimination for my disability before, but never had it held in such a constant position, dictating a large aspect of my life.
Only recently have they begun to come around to the idea of our relationship and allowing me to participate in family activities. I’ve only ever wanted them to get to know me as more than my CP. Simply put, here are 12 things I wish they understood about me:
1. I’m in love with their son; he’s my best friend.
2. A disability is nothing to be ashamed of, but it’s also not optional, so I have to live my life.
3. My disability is a part of me, but in a lot of ways, I am just like everyone else, and thus, deserve to be treated as such.
4. But the things that make me different (I’ll never dispute the fact that I am different) have also made me a stronger and a more open-minded person with a unique perspective.
5. I will never be completely bedridden and dependent.
6. My having a disability will not get in the way of their son’s career.
7. My disability is not genetic; I have just as much chance of birthing a child with disabilities as anyone else.
8. If they have questions about my condition, or me in general, they should just ask me.
9. How they have treated us, as well as the at times outrageous assumptions they have made about my abilities, or lack thereof, have hurt me in ways I never expected.
10. However, I am not going away, so we should just work on, at the very least, coexisting.
11. I love the love their family has for each other, and all I’ve ever really wanted is to be a part of it.
12. They have raised two smart, great men with an endless ability for love and compassion, which should make them proud.
I came face-to-face with my boyfriend’s parents this weekend for the first time in about four years, since I was a plus-one at a retreat thrown by his family’s business, with the intention of reintroducing me to his parents. Although they were not the most welcoming, we’ve made progress in that they politely tolerated my presence. Not wanting to rock the boat too soon, I didn’t approach them about these things or their concerns — speaking for myself for the first time — but I’m not giving up. I’ll respectfully bide my time at family events until, hopefully one day soon, we are comfortable enough with each other to have an open and honest conversation.
This is the only thing I can think to do. Fighting and rudeness would only give them a real reason to disapprove of me. And obviously, hiding didn’t work because you can’t get used to someone you never see. I hope my dream of being accepted will come true with time.
Originally published on The Mighty.
“Ooh / There is a camp I know/ and it lies on the Rideau / and they call it Merrywood / and you know, they really should.”
These are the opening lines to the Merrywood Song, the anthem of my favourite place on earth: Merrywood Easter Seals Camp in Perth, Ontario, for children and youth with disabilities. However, Merrywood was always much more than just a summer camp to me. From the first five days I spend there in the summer of 1997—my first time alone after two summers of family camp at the former Northwood with my parents—this was a place of accessibly, inclusion, friendship and fun. And as cheesy as it may sound, the friends and memories made there really do last a lifetime.
I’m still in touch with Erin, the counsellor who met me at my car on my first day at Merrywood. Not only did she look out for me that session and every session we’ve spent there since, but we’ve stayed in touch over the years through letters and Christmas cards. Nowadays, Facebook helps keep us up to date on the happenings in each other’s lives.
I think it was the summer of 2002 when I didn’t get into Merrywood but instead was offered a place at Camp Lakewood. I was in utter despair over not getting into Merrywood—my 12-year-old life was over as I knew it. But I was happy to be going to camp somewhere. And, as it turned out, this was one of the best things to ever go wrong in my life.
At Lakewood, I met my best friends in the world. Not long after arriving, I met Hanako. She was in the bed next to mine and our first interaction involved her helping me to disentangle my walker from my wheelchair. I’m pretty sure she thought I was quite daft for getting into such a predicament, but it was nice of her to help.
The previous year, Merrywood had acquired a collection of untippable and unsinkable sailboats that could be maneuvered easily from a comfortable seat with a joy stick and single rope operating the sail. Sailing quickly became my favourite activity, pushing swimming to second place. I love the freedom and exhilarating speed when I catch the wind just right.
Lakewood also had these sailboats, and pretty good wind conditions as well. When Hanako and I arrived at the beach for sailing on the second day of camp, it was quickly established that, due to short staffing, we would be sent in a boat together as we were both experienced sailors. Darren, an attractive Irish sailing instructor, whom I immediately had a huge crush on to the point of being speechless, had trained Hanako the summer before.
So off we went. The thing about spending two hours in a boat, with little else to do but sail and talk, is that you either come back friends or foes. Luckily for us, we discovered that we had a fair bit in common: in addition to a love for sailing, we had similar tastes in music and books, came from Dutch families and were the oldest of three children. We also had a similar form of cerebral palsy so shared a life view in this respect. We returned with the beginnings of a beautiful friendship. From that point on, Hanako and I did everything together, sailing as often as we could. We were even so bold as to ask Darren to rig an additional boat for us when there weren’t enough spaces.
“Hang” was a two-hour period of down-time we spent in or around the cabins every afternoon. Hanako and I would sit side-by-side on my bed or in our wheelchairs, as we quickly discovered that there was just enough space between our two beds to fit both chairs beside each other. We listened to my countless burnt CDs while singing along shamelessly.
Lakewood was not a bad place. The people and the sailing were great. The cabins had yet to be updated but the six, small, wooden buildings fostered a sense of community and tradition. The only downside was that dead fish from Lake Erie often washed up on the beach, giving the entire camp an unfortunate smell.
Despite my love for Merrywood, I followed Hanako back to Lakewood the next summer. She’d never been to another Easter Seals Camp and, like me, dislikes change. Hating to waste a day, she convinced her father to drop her off at 9 a.m. on arrival day and, after some badgering from me, my family dropped me off soon after.
If I remember correctly, after the required rounds of handing in the money our parents had given us to purchase a new Easter Seals T-shirt, checking in with nurses and assuring the waterfront staff that we were still crazy about sailing, we spent the majority of the morning messing around in arts and crafts while meeting new staff and catching up with those returning.
It was later that afternoon while lounging on my bed with Hanako that we met Katie, who would quickly become our third Musketeer and another of my best friends. When she came in I could tell right away that Katie was another highly independent camper like Hanako and I. Her cerebral palsy wasn’t even noticeable to me at first.
It was quite out of character for me then, and still is now, to make the first move to initiate a friendship, but Katie seemed cool and I felt for her as she nervously sat down next to another cabin mate who was much more severely disabled. She looked uncomfortable so I took a chance and said hi, striking up a conversation.
I later found out that this was Katie’s first time at camp, although her twin brother Kasey had come the year before. She was new to camp life and to being around kids with such a wide spectrum of disabilities. She adjusted quickly though, asking Hanako and I questions whenever coming across something she wasn’t familiar with.
After Katie and I hit it off, Hanako asked if I was ditching her for Katie. I assured her that I was doing no such thing; I simply thought she could use a friend and the three of us could hang out together, which we did.
We did everything together, except sailing which Katie found boring unless it involved a water war against her brother. Three can be an awkward number (and I won’t say there weren’t disputes over the years) but we usually sorted it out. Not big on sports in general, we often found ourselves together at the pool diving for rings (although Katie floats a little too well for such activities) having sparkle and paint fights in arts and crafts or doing something (often involving food) in Life Skills.
Hanako, Katie and I were an odd trio but were drawn together by our shared independence and friendship. I saw myself as the glue of our group. In addition to the things I have in common with Hanako, Katie appeals to a lighter and more girlie side of my personality. At 14, and even now to a point, Hanako never cared much about clothes, make-up or hair. On the flipside, Katie, to our slight disappointment, has never had much interest in picking up a Harry Potter book or watching A Walk to Remember on repeat.
Lakewood was closed after that summer and after some fantastic times there I was sad to see it go.
Once home, Katie and I began speaking on the phone almost daily (a habit that would continue until we went to college and upgraded to Skype) and Hanako invited me to stay with her for a couple of weeks in Kitchener-Waterloo. From then on I would visit Hanako after camp each summer and almost every school holiday during the year. Our parents used to take turns driving me back and forth between Bowmanville and Kitchener-Waterloo and when I look back, those two-hour drives were some of my favourite times, often spent singing aloud to our favourite bands (like Switchfoot, Relient K and Coldplay). Although I appreciate the independence it provides, the train ride alone is just not the same.
Off to Merrywood we went the next summer where I proudly introduced them to my favourite place and everyone I knew. Hanako and Katie were happy to admit that this was a nicer place with new, air-conditioned cabin buildings and water on three sides (free from the stench of dead fish). We also enjoyed some additional activities: Hanako went white water rafting on the Ottawa River, while the three of us enjoyed beach day and camping in a tent overnight together (Katie, who wasn’t keen on boats at the time, braved the canoes like a champ to partake in these two activities with us).
This continued for the rest of our years at camp, the three of us usually only separating when Hanako and I went sailing. Hanako and I took the summer of 2009 off because we knew we might want to work at Merrywood and were required to take at least one year away to create a bit of separation between camper and staff.
I worked at Merrywood as a cabin counsellor in the summer 2010. It was my first real job and a lot harder than I expected. I was always tired, but it was still the best job in the world. Hanako came for a session to work as a peer support counsellor. Essentially she was an ex-camper hired to act as a role model for campers who might wonder what life is like with a disability as they get older. It was so much fun to be there together again.
Then life and school got in the way, so I had to take four years off from camp.
I missed it very much and was ecstatic about going back this summer to work for a session as a peer support. It was easier this time as I’m older and know better what to expect. Although I can’t help much with the more physical aspects of the job, such as lifting, I love hanging out with the campers and helping them to enjoy Merrywood as I did, while encouraging them, as I have learned from experience, to be the best they can be.
It’s been suggested to me recently that Easter Seals camp does more harm than good by fostering the idea that those with disabilities should be segregated from their able-bodied peers. I however, disagree. As I’ve written before, I think that mingling between abled and disabled people is important for acceptance and understanding between both parties. But that doesn’t mean that it’s not nice, let alone helpful, for children and youth to spend time with others with shared life experiences—even if it’s only for 10 days a year—in a place so accessible it could be argued that disability doesn’t matter.
Camp was the only place that I can say this was undoubtedly true.
When I was little I pushed my red and blue kitchen booster seat around the floor on my tall knees, pretending it was a wheelchair for my doll. Like many kids, I played house with dolls, often pretending I was the mom and they were my children. I can’t remember if using the booster as a wheelchair was my way of compensating for the lack of disability representation in my toys. But maybe it was. Kids act out what they know. It was perfectly normal for me, a child with cerebral palsy, to pretend I was the mother of child with cerebral palsy. And, for lack of a more accurate option, I had to use my imagination.
There aren’t many toys that depict the story of a person with a disability. However, all minorities have struggled to get representation from the toy industry.
There was Share A Smile Becky, a Barbie I had in my vast 1990s collection with a pink and purple wheelchair with sparkly wheels.
Her unfortunate title aside, I remember thinking it was cool to have a Barbie that reflected at least part of my reality. However, her time on store shelves was short lived and she’s since been discontinued.
Some progress in diversity is being made. Mattel announced last month that they’re introducing 23 Barbies with different eye colours, hair colours, skin tones and face shapes. Until now, most Barbies were blonde. Unfortunately Barbie’s skinny body shape, which has been shown to be anatomically impossible, remains unchanged. Most girls and women, including those with a spectrum of body sizes and abilities, don’t see themselves reflected in these dolls.
Cue the Toy Like Me campaign, which debuted in April. This Facebook and Twitter initiative was started by three British women: journalist Rebecca Atkinson, who’s deaf and visually impaired; Melissa Mostyn, a deaf writer whose daughter has cerebral palsy; and Karen Newell, a former play consultant whose son is blind. They’re asking social media users to join the campaign by sharing images of toys, often handmade or altered, “that reflect disability positively,” as well as letters from children asking the toy industry to create “toys like them” using the hashtag #ToysLikeMe.
“When I was growing up, I never saw a doll like me,” Atkinson said. “I had two hearing aids. In the real world, there were people like me. In the doll world, I didn’t exist. What does that say to deaf and disabled children? That they aren’t worth it? That they’re invisible in the toys they play with? That they’re invisible in society?”
A month later Makie Lab, a 3D printed, made-to-order doll manufacturer out of London, England, answered the call by creating three dolls with visible disabilities or differences: one has vision loss and uses a cane, another comes with hearing aids or a cochlear implant, and the final one has a red facial birthmark. “It’s a pretty even race between the three, but Hetty (with hot pink hearing aids) is leading [sales] right now,” the lab told me in an e-mail.
“It’s fantastic that our supercharged design and manufacturing process means we can respond to a need that’s not met by traditional toy companies,” said Matthew Wiggins, chief technology officer of Makie Lab. “We’re hoping to make some kids—and their parents—really happy with these inclusive accessories.”
Judging by consumer comments on the Makie website, many are happy with the dolls that include disability storylines. I’m also happy. I wish these dolls had existed when I was a kid.
An argument can be made that it’s up to parents—not a toy—to help a child with a disability feel comfortable and confident. But I think these dolls are a helpful tool. And they’ll broaden the awareness of other children and families, too. After all, you can’t adjust to something you’ve never seen or played with.
Originally published by BLOOM.