Monday, March 16, 2020

#SciComm Like a Mother

The current unprecedented effort to #flattenthecurve and reduce the impact of COVID-19 has had parents emotionally engaged in conversations about health on social media more than ever before. How to climb the veritable avalanche of constantly developing information only seems to help build upon the tension we carry as we have our kids to think about as well. 

I found myself in a rather unique position these past couple of weeks as someone who spends a lot of time on social media for both work and advocacy engaging families of children with a variety of disabilities. Now I am the first person to willingly admit that I am not a scientist. I have a deep passion for science. I'm either friends with or know and partner closely with A LOT of researchers. I love to discuss things like the state of health science and health care systems. I can say that my family supports me in such an incredible way, and yet they really don't understand much about what I do. I hear that's a challenge a lot of researchers face with their loved ones! 😉 I am someone who likes to learn and to be challenged in my view of the world. Yet I am no doctor. If I am wrong about something, I will be the first person to shout it from the rooftops even if it gives me an anxious stomach ache sometimes. 

My personal stance is one that attempts to dialogue with parents sometimes and challenge pseudoscience from a platform of common ground and compassion. Mind you it doesn't make me that well liked at times online. It's difficult to dig in and feel justified in your position when someone asks pointed questions from a place of kindness. It's taken me awhile to understand how best to support my parenting community and it works well for me. It's offered me an opportunity to work on an ongoing integrated knowledge translation study that's helping families after a disability diagnosis. 

I've had a number of opportunities lately where I've been approached by parents of medically complex children. Many of the practices the world around us is recently learning about like "social distancing" are things we adopt on a regular basis to protect our kids. Yet in the spaces we often dwell in on social media, it can become increasingly frustrating to see the ongoing battle when it comes to misinformation. I was asked by a few people about writing about how we can improve the dialogue as parents and ensure that everyone comes at knowledge acquisition from an accurate place. It can be hard to know how to educate and encourage someone to see life from a different lens when what people say on the internet makes you rage internally. Everyone wants to feel empowered, but this is a stressful time that can show prime examples of something called "cognitive bias". 

According to Wikipedia, "A cognitive bias is a systematic pattern of deviation from norm or rationality in judgment. Individuals create their own "subjective reality" from their perception of the input. An individual's construction of reality, not the objective input, may dictate their behavior in the world." What this means is that we all have the capacity to fall prey to an altered perception of our own reality and can lack judgement of our abilities. 

One excellent example of a cognitive bias is the Dunning-Kruger Effect. This short video explains it better than I ever could.

People come at their motivation for learning about COVID-19 from a number of angles. It's important when you can to consider where people are coming from when they either engage you or you see them chatting on social media. 

I mean think about it, one prime example would be those with a deep interest in true crime. Many people are addicted to a particular podcast called, "My Favorite Murder". The motivation behind it is to understand darker stories of the actions of people but to also taper this need to understand these tragedies with humor. It's become a community where people have even adopted the moniker as a fan called, "Murderinos". People don't get into a fascination with true crime out of a deep desire to one day be murdered. That would be crazy! I imagine people come into such an interest from a variety of ways. Some would be delving into the darker psyches of humanity, some might feel like they missed their calling as a forensic pathologist. If one adopted a more probative goal to understand why people get into the hobby, I imagine we could learn a lot of things about how we deal with darker narratives and experiences.

The same can be said about coming at a persons knowledge about pandemics. Some people are only recently coming into the necessity of engaging in health conversations and could be terrified. Some people enjoy being armchair epidemiologists which is one reason why this article came out a little while back. 

People have used film as a way to ask fundamental questions associated with things like fear. Its pretty much the basis for a lot of classic sci-fi. I mean it's pretty fascinating to watch people cope their way through this pandemic. I see people binge watching outbreak movies and the Walking Dead. One unique lens on this is a recent documentary series James Cameron put out.

So my first point when communicating to others about accurate information is to:

1) Try to understand where the person is coming from.

If you ever want to see society grind civility to a halt, one needs to either head to Twitter or a Facebook comment section. Keyboard courage has become a bit of a gross reality and let me tell you it gets noticed by those who have adopted a more pseudoscientific lens. Was rather interesting looking at memes about ad hominem for this blog post, many of the posts created were made about people whose belief systems make me cringe. I'm just going to take it as a sign that we can in fact agree on a few things. I believe that the dialogue between parents can get better. Which leads me to my next point:
2) Few people have life changing revelations about their beliefs when they are made to feel stupid.

In fact quite the opposite. You will probably find that a person will dig into their stance should you bring name calling into the conversation.

3) Sometimes it's not about changing the mind of the person you are directly addressing. Sometimes it's indirectly communicating with the other people in the room.

Some concepts require education to be a long-term relationship of trust building and investment in sharing truths. Not all conversations end in minds changed in a single conversation. Sometimes the people you chat with can be the louder, more influential voices in the room. Sometimes what you say might not impact directly the person you talk to but change the mind of someone else watching the drama in your conversation unfold.

4) Much like your Algebra teacher taught you to do back in the day, "show your work". 
"do your research!" is a common social media rally cry, but let's think about the message behind that. 

"I have put out a statement and anticipate that you will in fact see me as an authority. If you don't, well you just didn't do the work to catch up on the conversation and I don't feel like doing the work for you. I made the statement, I trust in it, that should be all you need."

We could be SO MUCH BETTER than brushing off our fellow parents. To command authority where you in reality have none, means we need to share where we are coming from in conversations and why. It's ok to gently ask for more information from a person. Let them know you're trying to understand their point of view.

5)Validation and a little grace goes a long way.
I often wonder about positive message memes online and what sort of hurt is behind the motivation to share them. Social media speaks a lot to protecting ourselves from the hurt of others. That we deserve to put space between us and the abuse of others. While these are valid steps, its also important to recognize that genuine connection in human conversation is sometimes composed of topics that make us uncomfortable. We as a society need to be better with the idea of sometimes being wrong about stuff. Sometimes it's worth taking a conversation offline and offering to buy someone a cup of coffee and catching up. You don't need to approach the conversation again, but social media has a way of lacking nuance. Sometimes there are things better communicated when you literally see the person as a whole. 

It can be important to share with other people that they are still good people. Good people get steered in the wrong direction pretty much hourly. There can be uncomfortable feelings associated with the idea of being wrong. You can also be that friend that builds a person up after.

6) Learn a bit about common fallacies in common conversation.

It can help you identify ways we either help or hinder ourselves in our beliefs. This is a great series of videos that help to explain what I mean, be sure to check them all out on the YouTube channel.

7) Know your limits and be sure to take care of yourself.

It can be a lot to send yourself on a personal crusade to change people's minds on misinformation. Be sure to take time for you and practice a little self-care. 

These are just a few things that have helped me in connecting with others. It's important to remember that if you are stressed, chances are that they are too. Tensions are high. We will get through this if we remember to be patient, kind and supportive where we can.

Wishing you all a safe time as you practice social distancing or self-isolation. ❤

Wednesday, January 22, 2020

Legacy Thinking in Rare Disease

I have had in the past couple years, the opportunity to learn more about the current world of rare disease research in Canada. A window for which I am entirely thankful for. 

One such opportunity came last year in the form of attending a session on how precision medicine has impacted so many areas of the science. I'll admit I'm still wrapping my brain around the vast complexity of it all.

A short primer on the subject for you today would be that precision medicine tailors treatment decisions entirely thinking of you and your diagnosis specifically. One example of that would be blood transfusions; you don't give a patient just anyone's blood. You are given transfusions according to your specific blood type.

Patient involvement in the rare disease research process has become a rather interesting side hobby of mine. I am a highly engaged person within the research world. This is just the trajectory that my life has taken and I love every facet of it. That being said, not everyone is me. 

In bringing information about this session to my larger support community online, I could literally feel the eyes of the readers glazing over. While many people are engaged in the science of health, we have not brought everyone else along for the ride. I am under no assumption that everyone wants to catch up either. The reaction was essentially, how does this affect my life? Tell me in 30 seconds or less. I absolutely get it! When I started out after my son's diagnosis, my ability to stay organized was awesome. My brain was a well organized filing cabinet. Nowadays, some things I've stored away in my mind feel more like a sticky note that could be threatened by a puff of wind.

This really speaks though to two problems that we have in Canada. 

a) While we speak to the diagnostic odyssey of patients and families, we have little by way of looking at all the firey hoops they leap through. These processes of care don't mimic your average medical show having everything solved in under and hour with commercial breaks. Given many patients and families exist under the threat of life-limiting timelines, there is a sort of entrepreneurial spirit that emerges in people with no prior experiences in science. Not entrepreneurial spirit in the monetary sense, but in seeking help to save the ones they love. It has not been common practice to track, or learn from these steps that many patients and families have taken. As time passes, we are losing valuable legacy data because of this lack of networking and dissemination. You can't pass on knowledge if you don't know that it's a necessary step.
That has begun to change in the US. NORD (National Organization on Rare Disorders), has created a patient portal for which one can begin to collect this legacy data with a particular interest in smaller patient populations. An extremely worthwhile effort in my mind. However, limited if you don't know that its something that exists, you're not capturing everybody. What if we could help families learn about all the potential directions they could take their medical journey? To bridge some of the knowledge gaps on their options? 
b) We need a compassionate lens on how we can create optimal patient partnerships in research that functions with an understanding of patient choice. With over 7000 rare diseases, odds are that not everyone will be all in, attending medical conferences and standing by research posters. We need to honor the choices of whatever patients and families wish to bring to the table. Many just want to live their lives and that is perfectly ok. Patients and families deserve best starts in regards to resources and knowledge in order to pursue their goals no matter what they are. We need to ask patients and families, what they are going through and most importantly what they wish to be asked from others and how far they wish to get involved... always keeping the door open should they change their minds. If we are to call this rare disease experience an odyssey, we need to remember that even in the most mystical of fables few of these journeys taken were accomplished alone. There is a new prospect of hope for someone when somewhere when they see that choice still remains within their reach. 

My life experiences are only one of a myriad of potential outcome variables. I know what I have overcome in regards to barriers in care and information access. I have a keen interest in understanding what others have gone through and seeing what sorts of commonalities emerge. To learn what are the most common needs from the lens of not validated measures, but compassionate moments of just listening because we've been missing out on so much.

As a culture of new partnerships emerges within rare disease and with undiagnosed families, how that begins to tailor together will show itself over time. I have been workshopping what I think is a pretty great idea myself. But now is the time to really offer opportunities to start to understand one another between stakeholder and clinician. Everyone deserves to participate from an informed space. What that begins to look like as the research landscape changes, I'm excited to see.

Friday, November 15, 2019

Parenting On The Outside

Thirteen years into parenthood, I'll admit I don't give World Prematurity Day much of a thought. I really can't explain why; I think there came a point in life where my eyes shifted forward in focus with life. If you know me, you know I'm someone who has a difficult time sitting still. So much of life demands of me to be in the now be it work or family.

Reading Dr. Jen Gunter's article today in the New York Times really forced me to stop for a moment and honestly have a good cry. 

I used to work at a high-end kids boutique that had a secondary location a few doors down devoted to baby stuff. One day we were all discussing the fact that the baby store made three times the amount of sales than the kids shop. The question was raised as to why this was the way it was. An employees response has stuck with me for so many years. In the baby store, you're selling the dream while in the kids shop it's a parental view of "how much is this going to set me back?". I mean, I get it! Life functions in this linear sort of format as to how our expectations are to go when it comes to parenthood. 

When life takes a different trajectory, the understanding of others who have been raised on certain parameters in their definition of social norms goes straight out the window. I'm going to be real with you, this is one reason why I've developed a hatred for baby showers. Not at all because I for some reason mourn what might have been. My life given its complexities is pretty damn amazing. My kid is incredible. It's how you get spoken to when you bring with you a small babe to someone's shower. I remember being asked about our medical experiences, then in the same breath that person cracking what they thought was a joke. "So what sort of drugs were you smoking when you were pregnant?". I failed to see the humor. 

Subsequent showers were forever a reminder that in the eyes of others that in their mind, I had a faulty experience with my entry into motherhood. While some details of motherhood weren't without their complexities, I still had things I could contribute as a support to new moms. Any attempts to offer advice were always met with looks of sympathy in my direction which spoke little other than, "Awe, she tries so hard to be one of us.".

While many preemies have relatively uncomplicated outcomes, I find myself reminded today that ongoing or "chronic" complexity has not yet arrived in the dialogues of many people. We still see health as a binary entity where you are either sick or you are well. There is no middle ground and that can be terribly isolating. When someone's life encamps somewhere in the middle, we don't know what to say or do. In many cases it's just easier to make a hasty escape.

Life is complicated, messy, beautiful and in some cases tragic. When we hesitate to acknowledge all of the in-betweens and forget to hold space for one another, we are missing out on a full understanding of what it means to be human. As the good Doc said in the article linked above, we need to get better at talking about all the angles when it comes to prematurity. 

Because this is where it starts. Step one. You either become a part of the community of support, or you watch from the sidelines and miss time with some amazing kids. 

Tuesday, November 12, 2019

Parenting Roles in Complex Care: A Review

Having lived with my family in three provinces, we experienced three separate definitions of home care. One province we didn't qualify at all, one we had a schedule of evening help with no added paperwork for me. For the last province, we qualified for one night a week which was out of pocket, then reimbursed. 

When we do not qualify, or services are not available, I like many other Canadian families take on the tasks of medical care. For many depending on the medical issue, they work a 24 hour day keeping their children stabilized. A lot of tasks require focus and attention over regular schedules which can often extend well into the night. Supports can be all the more complex depending on family dynamic as not everyone is ready or willing to rally around you.

According to a recent opinion paper in JAMA, caregivers spend an average of up to 52 hours a week providing health care at home and even more so in some cases depending on the level of medical complexity. What complicates the situation all the more is creating a sustainable family system where at least one parent needs to remain employed to maintain not only income flow but to keep insurance as well. There's a lot of mounting evidence that many caregivers given their daily workload, experience severe burnout symptoms, depression and anxiety.

If we were to consider work safety standards in really any job, (not just nursing) overwork is a subject that would raise concern over the threat it poses to injuring someone, even death. This is why companies with high stress work tasks put together safety regulations to ensure things like a limit on work hours. The overall pitch with home care is that if we are ensure the overall health of parents and children, we need to set work standards for families.

An initial suggestion of setting manageable work hours for parents to me, feels like a meaningful goal to develop. Given the health risks involved with prolonged stresses, I'm inclined to agree. What would be important however for every family would be considering the circumstances of the individual family in front of you. While there are many commonalities between families, everyone brings a little something to the table. 

Families must be involved in the crafting of those work hours. This comes with the broad acknowledgement that each family unit is unique and comes with their own sets of needs and feelings about having other people in their home. What might work for some families, might not work for another family for a number of reasons. In my own opinion, we need to quit setting metrics of assessment for families based on a model that all family units function in exactly the same fashion.

Creating systems to measure quality of care; to track adverse events in both range and frequency would ensure an understanding of the extent of any potential challenges. I would also add myself, measures to validate longitudinal function of such a collaborative system in home care. We have been patching old models of care for so long, it's worth investing in examining if a new model will stand the test of time.

If we are to create a system with the future in mind, we need to fund the assurance of high-quality home care that creates efficient pathways for everyone to work together. Facilitating incentives for people to be led into such future careers would ensure sustainability of such programs long-term.

Lastly the authors mention that we need to find ways to have more authentic conversations with families about what are as they state, "informed and reasonable expectations for parental care". As a parent myself I can say the expectations of what I am capable of in the eyes of others has fallen in a range from:
a) more desperate than I actually am.
b) someone who needs no sleep and is emotionally fine with that.
The authors state that in the end, this needs to be a conversation that is ongoing and open to change should circumstances necessitate the need for them to. 

For me, some of the motivation in facilitating such conversations would be in seeing the need to make them as Victor Montori calls them, "unhurried". In the end, we have seen enough in literature to say that the medical care workload for many parents is at a level that for any paid employee would be considered unsafe. There is no amount of resilience training, yoga or pedicures that will remedy this safety issue. We need to collaborate with families to build sustainable and safe systems of support policies that ensure optimal outcomes for parents and their children. 

Tuesday, July 30, 2019

Hey Dads! Let's Chat!

I've been at this mom gig for almost 13 years and have certainly seen some stuff. We took our turns as a family as frequent vacationers at "Club Med". I met a lot of families like mine along the way. I had the privilege of turning connecting with Canadian families into part-time support work in research. One thing in all this time that I wish I had the privilege of understanding more is how to help dads.

It's no giant leap in knowledge that health care in pediatrics is highly geared towards moms being the official captains of the complex/chronic illness or rehabilitation ship. Life tends to dictate someone taking the helm and for whatever reasons, its mostly moms. There's no end to the research stating that moms are stressed out and under-supported. Sometimes you have to dig for it, but it's there. One study I tend to reference a lot, states that caregiver stress in moms of complex kids leads to a 20% increased mortality rate. 

Yet families function as a unit and we need to consider how we are supporting all of its members. There's a rather critical research gap in understanding what roles dads play as well as emotional/psychological impact when it comes to complex care parenting. Granted there are a lot of considerations to be made in regards to intersectionality in the family dynamic; things such as race, income, education and a lot more. But dads tend to be relegated to the background. Publicly they don't tend to get the props they deserve. I was thankful to see a tip of the hat made by Sick Kids hospital awhile back with this commercial that in my mind just says what we need to say out loud a whole lot more; "we see you". 
Much like moms, I've met a variety of dads over the years who have responded to caregiving life in their own unique ways. Some engage on par if not more than the moms with all of the tasks that are required to support their kids. I've seen dads disengage, feeling their role as income provider is easier to conceptualize than specialist appointments. I've seen dads cut and run. The list of responses to this life goes on and on.

Women tend to have their communities that become pillars of sisterhood upon which to lean on. For many years myself, I leaned on women I had never met, but who understood my life completely via support groups on social media. I've since branched out, finding women I can sometimes get out with for a break.

There's no single answer upon which to rectify this support gap in health care and mental health. At the very base of it all, I think the world needs to create more of a pointed and welcoming effort to bring dads into the picture. To find out the many facets of what they are going through in all this complex life.

I would love to see more dads at the table when it comes to contributing or partnering in research. I think there's great potential in creating a more well-rounded understanding of the family unit when we make more of an effort towards inclusion in this area.

Dads, I just want to echo what I mentioned in this earlier; we see you. We want to know how to support you. We want you to know that you are worthwhile supporting. Let's start a conversation! You are worth being understood in all this. 

Friday, May 17, 2019

I'm Just Here For The Eggs

(Shared with my son's permission.)

My 12 year old lives for opportunities to head to the store. Any type of store really, with the exception of any store that his dad likes. For as close as the two of them are, he's of the opinion that dad isn't into cool stuff. I get the impression this love of shops stems from a lengthy career of making hospitals a second home right from the start. He's autistic and lives for the geography of winding halls and the anticipation of what might possibly be around the corner. Add his bright apple green wheelchair with light-up front wheels and he has the freedom and autonomy to explore as he pleases. 

I still get all that I need to get at the store while he gets to people watch and crack jokes with his mom. Waiting in the checkout line, I hear familiar words from a child I've never met who's standing in line with their parents. The child asks me, "What's wrong with him?'. Out of the mouths of babes. Most adults when I share this story think kids gravitate towards the light-up wheels but no, kids drive right to the larger questions.

I don't mind answering them, as I've been working with kids for years. I teach a lot on communicating broad topics in a more simplified fashion. Oddly I find it easier to talk to kids about this than I do adults as in many respects they should know better to some degree. The following is a culmination of many, many conversations I've had in checkout lines.

Me: What's got your attention luv?
Child: Why is he sitting in that? (Points to wheelchair.)
Me: His legs don't listen to him very well so the wheelchair helps him get around super fast. Do you like to run super fast?
Child: Uh huh. (Generally shows me how fast they run.)
Me: Wow! That is super fast! Well when my boy likes to go super fast, the wheelchair helps him kind of like running, so he can be fast just like you! 
Child: (nods) And why does he talk like that?
Me: That's because he talks in a different language using his hands. Do you want to know how to say your name in sign language? 

The kids love it when I teach them a generalized hand sign for their name. One thing I'm very used to all the while as this conversation goes on is a look of shame and embarrassment on the faces of parents. This as well as the fact that parents never participate or engage in this conversation which is something that worries me. I can understand the potential discomfort in these situations. I'm a rare bird as an advocate and science communicator, not every disabled person is willing to jump into a prepared four minute curriculum nor should they be expected to. 

Schools provide a knowledgeable space for discussions on kindness and inclusion. I imagine that an evidence basis for kindness/inclusion curriculum could stand to be reviewed on new evidence as it comes about. By and large the overall goal tends to be ideally to create a safe space for teaching all students. When it comes to other school subjects, what is learned in school tends to be repeated or mirrored at home in the form of homework. I too was that kid asking my parents to help me with what I brought home from school that day. Parents mobilize acquired knowledge from school as they are some of kids greatest influences. 
What we don't really have is opportunities for parents at home to connect with subjects like inclusion and kindness with their kids like they do at school. I can't account for the prior experiences of the parents of the kids I meet in the checkout line as to their exposure to the subject of disability. If we are to however expose our kids to the larger world and the people in it, sometimes that takes some learning on our part and being open to hearing about the experiences of others. Be open with your kids about perhaps needing to learn more about disabilities together. In the end it shouldn't be my job to stop my world and normalize the sight of a wheelchair for your kids, I'm just here at Walmart for some eggs.

Alden E. Habacon has a great method for considering discussions on diversity. "When it comes to safety, we know that children learn more over time:  the short-term goal is to establish basic literacy; the medium-term goal is to practice safe behaviours; and the long-term goal is the ability to make decisions that result in their safety."
"Talking about diversity is exactly the same: 
  • The short-term goal is to establish basic literacy about race, gender, disability, respect, empathy, etc.;
  • The medium-term goal is to learn inclusive behaviours and language; and
  • The long-term goal is using inclusive language and practicing inclusive behaviours. " (Source:

Friday, June 15, 2018

The CRPD and My Family


The following was a speech I delivered at Eleventh Session of the Conference of State Parties at the United Nations in NY. 

Thank you for being here this evening. My name is Rachel Martens and I am from Calgary, Alberta, Canada. Becoming a mom to a child with multiple disabilities presents a sort of duality in your identity. This duality has a system of priorities that at times works in tandem, and sometimes with one side taking priority over the other. 

Both sides of this dual identity have a stake in introducing my son today. Clinician Mom would tell you that this is Luke. Born with a rare chromosome disorder called mosaic trisomy 22 and he was born with a laundry list of associated diagnoses such as autism, cerebral palsy, poor growth as well as being nonverbal. Mosaic trisomy 22 as best can be determined with current data occurs in roughly 1 in 30,000 to 50,000 live births. It was only in 2013 that a published formal assessment of data determined that mosaic trisomy 22 didn’t follow the common trajectory of other diagnoses often associated with incompatibility with life, but rather falls on a spectrum of function and lifespan unique to the individual. In sharing my story, I often feel as though he was born at a time in transition in conversations on both medicine and disability. This is a young man who craves his own path on every level. I credit the work of multiple clinics at Alberta Children’s Hospital with the fact that Luke is still with us today. 

The other identity is known as just, well... “mom”. She would tell you that Luke is an almost 12 year old young man. For someone who is nonverbal, he gets his point across quite easily if he’s annoyed with you. He’s an active explorer who doesn’t let using a wheelchair get in his way of experiencing the world. He loves to play what he considers to be pranks on people and lives to laugh. Music has recently become another way for him to communicate with the world.

Starting out, I really won the lottery with our early intervention team of occupational, speech and physiotherapists. They saw a very angry child with a unique path of development. They came along side him and respected his way of thinking. They acknowledged his need for space and autonomy all the while working to create bridges towards trusting therapeutic relationships that helped him see the world is less of a scary place. All of this couldn’t have happened without a supportive Canadian framework of services that became a regular part of our home life. 

As Luke approached school age, I could tell his team was hesitant about his future. At the time, the best we could be afforded was a life skills class. None of us were satisfied let alone equipped to advocate for an education that better suited his list of needs. It was with that we decided to pick up and move to another province closer to family and a school that afforded him more opportunity to grow. Looking back I am fully aware that this decision to move was available to us due to a remarkable amount of privilege. Many families with complex needs like my son’s have the added stress of functioning in a support system that’s inaccessible due to diagnosis centric standards or don’t qualify because they’re considered not severe enough for intervention. 

In any case, parenting is a dance that is led by the child. The music is entirely their own, the partners change every now and then. And it’s an absolute thing of beauty to watch when each part is understood and works to support the artistry of the lead dancer.

I do a lot of looking back on the life of my family lately. What brought us to this point raising a young man who’s developing his own identity and engaging with the world, came with a recognition of his right to education and surrounding him with people who were open to communication and strategy in a system that supports the individual. The stories of Canadian families represent a broad expanse of experiences. But at the root of parenting a child with a disability I would argue we all carry a common system of goals for our kids. In 2012 two researchers at CanChild Centre for Childhood Disability in Hamilton, Ontario created a simplified explanation for parents of the World Health Organization’s International Classification of Functioning, Disability and Health (or the ICF for short) called the six f words in disability, which I believe reflects the spirit of the CRPD in the lives of families. A brief explanation is as follows: 

Function: I may do things differently but please help me try.

Family: Mine plays a supporting role in my life. Please give them have an opportunity for having a voice too, they’re my biggest fans.

Fitness: please help me find ways to keep healthy.

Friends: connections with others is important to my development. Please help me find ways to hang out with my peers.

Fun: fun and play is how I learn and grow. Please help me find ways to be a kid.

Future: I will grow up one day. Please help me find ways to be a part of the community.

It’s been my absolute privilege to share these words with Canadian families as a Parent Engagement Coordinator for CanChild and Kids Brain Health Network. I facilitate a social media based advisory network for families engaged and willing to collaborate in research. Stories according to researcher and author Brene Brown are in fact data with a soul. And at the heart of these stories we have seen the common thread we share in supporting the dance of our kids. We have spent the past few years getting to know what sort of connection we can make together in the creation of research with real life application and have seen the benefits of real time knowledge exchange in an era where science is making a deeper impact by taking our work to the people. It was through this online community that we collectively celebrated the implementation of the position of Minister for Disability and cast a vision towards the future. More accessible collaboration has the potential to engage with greater depth beyond the time restrictions of the clinic appointment and to notice the sometimes subtle nuances of child development through the eyes of the kids and the parents and siblings who know them so well. 

In my work in engaging parents, I see a generation of them who are seeking a way to step beyond both physical and mental stress. They see potential and carry ideas as to what would help create one amazing generation of kids. They mentor each other on system navigation on social media that in a way makes them well studied social workers for one another. When you invite researchers into this community as well, the combination of lived experience and scientific knowledge has the potential to create incredible outcomes.

I realize that engagement can’t always be logistically accomplished with a level of intimacy and conversation equitable to a family barbecue. But it’s this spirit of community that is already a uniquely Canadian quality. In order to realize the full depth and breadth of the CRPD and its function in Canada, this community of the mutually invested needs to be mobilized. 

If I were afforded an opportunity to provide insights into supporting the implementation of the CRPD for kids in Canada there would be a few things I would consider.

I would create an assurance that all voices count in the creation of new policy. That means creating population counts of all Canadians affected by disability including children and hardly to reach cultures. 

I’d consider seeking a rare disease framework and how it affects disability support system infrastructure as it affects 1 in 12 Canadians and 2/3 of them are children.

I would encourage more networking between the provinces regarding analysis of best practices for services.

I would seek to close the often considerable time gap between published research and its implementation into policy. And to educate families in seeing that their story has value in research and understanding that organizations like SPOR help in opening doors to collaboration with research institutions. 

Meaningful collaboration in improving the lives of kids has been tremendously therapeutic for myself. The knowledge acquired has trickled down into my parenting and helped me advocate for Luke with less conflict and more evidence basis. 

On days such as today, having an opportunity to speak on behalf of Canadian families is larger thinking than I ever could have imagined when I first became a mom. The video you saw of my husband and Luke is a snapshot of a moment where hearing a song from the soundtrack to the movie Moana seemed to unlock something in his mind that told him that this is the most beautiful song that has ever been created. If you aren’t paying attention while the song is playing, he will in fact either pinch you of take you by the face to remind you to share in his joy and live in the moment. It’s stories like these that drive parents towards being partners for change as it’s the energy with the potential to fuel the creation of great things. When we can support the rights of children, making memories like this as a family becomes a celebration of milestones that we can all share in and celebrate together. I for one cannot wait to see what we can accomplish as a country for our kids. Thank you for letting me share my family with you here today.