Some new, positive, F-words to keep in mind

Cerebral Palsy: The Six F-Words for CP.
Cerebral Palsy: The Six F-Words for CP.

Twice in the past couple of weeks––once at CP-Net Stakeholders meeting and at the OFCP Annual General Meeting–my attention has been drawn to “The Six F-words for CP:” function, family, fitness, fun and future.

At first, I admit, that these sounded like a too obvious and overly simplified solution in the struggle to find a realistic and helpful approach to life with CP. But I was nonetheless intrigued, and aware that I may be too cynical towards such things.

The review article, “The F-words in childhood disability: I swear this is how we should think!” written by Peter Rosenbaum, from the CanChild Centre for Childhood Disability Research at MacMaster University, and Jan Willem Gorter, from NetChild Network for Childhood Disability Research in the Netherlands, was provided in my OFCP AGM package. I thought why not give it a read?

And I was pleasantly surprised. While I still believe this approach is a bit obvious, I appreciate  that it, although published in September 2011, is gaining traction within the research and treatment community.

While I invite you to read this article for yourself, there are a some key, exciting, points of revelation worth mentioning:

First, the traditional medical model of diagnosing and “fixing” doesn’t work with CP.  Put simply, CP is too complex and effects each of us differently, even, for example, two people who technically have the same type of CP. Thus, there is no short list of go-to treatments, no cure all. Not to mention that results are often only small and gradual after persistent, sometimes lifelong, treatment. Our quality of life can be improved but we cannot be fixed. At this point, such an absolute goal will only lead to frustration and disappointment.

Second, one does not need to do something, such as walk or talk, normally in order to be functional. Conventional development is a reasonable guide, but by no means the only way of doing things. I often explain, to people who inquire about my limitations, that I can do everything an able-bodied person can do, just maybe in a different way. Just as someone else may wear glasses to see, I use canes to walk. What’s important is that children with CP be given the opportunity, and assisted as necessary, to learn how to function to the best of their ability in a way that works for them. Fine-tuning their performance of these functions will naturally over time.

Third, treatment and counselling should include not only the child with a disability, but their family as well. Explaining the child’s condition and treatments––and making sure they understand––can help parents, grandparents and/or siblings make peace with this new reality and move forward to a happy and fulfilling life for all. This could mean helping with exercises, finding accessible activities for the whole family to do together, or learning how and when to advocate for the child.throughout their lives. When complicated on my ingenuity in accommodating a task, I often point out that others could probably do the same if it was necessary.

Fourth, fitness and fun can be grouped together in that it is important to for a person with CP be given the opportunity to discover activities they enjoy, just like anyone anyone else. Then, similar to function, figure out how it may need to be accommodated to their abilities.

Lastly, and perhaps most importantly, people with disabilities have a future, just like you. Service providers should make this clear right from the start, and keep it in mind throughout their relationship with the child and their family. This could be a future full of friends, education, goals, dreams, and even romance.

 

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Some new, positive, F-words to keep in mind

The CNE is Right to Allow People with Disabilities Free Admission

cneLast 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.

The CNE is Right to Allow People with Disabilities Free Admission

What do you say about your disability in an interview?

 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.

What do you say about your disability in an interview?

Me Before You: A missed opportunity but not completely terrible

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.

 

Me Before You: A missed opportunity but not completely terrible

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

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.

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

How Uber And Taxis Shape Up In The Battle For Accessibility

ubertaxi

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

How Uber And Taxis Shape Up In The Battle For Accessibility