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.
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.
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 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.
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
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.