Scott & I are back! In this episode we discuss their experiences with Cerebral Palsy and try to figure out when C.P. Awareness Month actually is. We debate the potential need and reasons for a figurative holiday celebrating individuals with the diagnosis. Give it a listen here.
I’m also participating in a free CP-NET webinar on Friday April 21 from 11:30 a.m.-12:30 p.m.: Growing Up with CP: Mental Health and Well-being. Please register, save the date and share with your network. See the event poster here.
Check out my latest collaboration with the Ontario Brain Institute:
In the second episode of #Two3rds, Scott Bremner and I speak with David Lepofsky, Chair of The AODA Alliance, (www.aodaalliance.org, @aodaalliance, #AODAFail) lawyer and accessibility advocate about the implementation of the Accessibility for Ontarians with Disabilities Act, 2005. Give it a listen here.
*Note: While the volume is a bit inconsistent, due to unforeseen technical difficulties that we’ve since learned from, please stay with us. We felt this interview was too good not to share. Cheers.
I’m not sure why it took me so long to post, but here are some fruits of my first contract with CBC Music:
The Canadian Music Class Challenge 2016: I helped to evaluate contest submissions and compile the top 30 short list. Check it out here.
In preparation for Blue Monday, I also helped to create this Island Vibe music stream.
Twice in the past couple of weeks––once at a 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 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 affects each of us differently, even, for example, two people who technically have the same type of CP. Thus, there is no shortlist 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 for a person with CP to be given the opportunity to discover activities they enjoy, just like 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.
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.