Author: Jessica Geboers

Some of my takeaways from the Brain-Child-Partnership Conference 2017

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by Pinpoint National Photography
Youth of BCP2017

I had the pleasure of attending the Brain-Child-Partners conference here in Toronto on Nov. 6-7, 2017. I was there with CanChild but was also representing the youth voice.

The first session, Can We Fix the Brain? shared some fascinating and exciting therapies that help to rewire the brain and improve mobility. But it was the question posed in the title that really engaged the crowd, a question which quickly morphed into, “Should we fix kids with disabilities, and to what extent?” Given this is likely a common question among parents of newly diagnosed children, many parents in attendance stepped up to the microphones to over their thoughts and experiences. Listening to the many opinions on this question, a theme became clear to me:  We don’t need to be fixed; we need understanding and tools to help us achieve our potential and participate in society without stigma.

BCP2017, my first such conference, was an excellent example of research and community uniting around a common interest and goal — patient engagement. But how do we achieve effective patient engagement that satisfies all parties? This was a question that received a lot of attention but lacked a clear answer.

Several parents, both official presenters––including Rachel Martens, Julie Drury and Ann Douglas––and those in the audience shared their experiences advocating for their children, what they’ve done, learned and need to change. I appreciate these stories more and more as I get older because they help me to better understand the challenges that my own parents faced and concurred to give me the best life possible. And it is by listening to these experiences that help researchers and clinicians understand what and how they can improve the lives of patients moving forward. I particularly loved what Louise Kinross, editor of BLOOM, had to say about clear and effective communication––if you want to know if parents understand your message, just ask.

Louise also used one of my favourite quotes, from Albert Einstein, to illustrate her point: “If you can’t explain something simply, you don’t understand it well.” Those buried in science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we much appreciate their work, it should be communicated in the language of those it is intended to help, otherwise, it is almost entirely useless.

As important as the parent voice is, so is the view of the patient. Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, caregivers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person than just his diagnoses alone. This enabled him to live a full and active life (We have a shared love of travel), when it seemed, on paper at least, that he shouldn’t. I couldn’t agree with Symon more.

I was thrilled to be included with and meet the small group of fellow youth with disabilities from across Canada at BCP2017. However, there should have been more of us. We should have been as considered and granted had as great a platform as parents.

Many of us with disabilities wouldn’t be where we are today without our parents, research, medical advancements and early intervention. For this, I am forever thankful to all those involved in my care and success. But it’s important to remember that we, the patients, lived it and are here to share our insights. This is especially important when discussing the transitions from childhood to adulthood or youth engagement. If you want to know what we think or need, either for ourselves or future generations of children and youth with disabilities––as you should­­––ask us.

Podcast: #Two3rds Happy CP Day Part 1 (and a Webinar)

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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.

Podcast: #Two3rds: Is the AODA Eh O.K?

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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.

Some new, positive F-words to keep in mind

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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 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.

 

The CNE is Right to Allow People with Disabilities Free Admission

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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.