That's a wrap, August!

It's amazing how quickly the summer flies by! Here we are at the end of August, getting ready for Mike to go back to work next week (teaching grade 7 and 8 at Duffin's Bay). It has been such a gift to have him home with us on parental leave ever since Shae was born in November.  We are so glad we took advantage of this opportunity.

August started with James turning 2 years old! He was spoiled with many gifts from family including tickets to see his favourite show, the Wiggles, in October! He went to Conductive Education camp in the mornings for 2 weeks with the March of Dimes. They are so good with keeping things fun and engaging for him and his buddy, Kiaan.

Walking with the ladder in CE

We've continued with massage, osteopathy, Grandview and Medek with SMILE (sensory motor integrated learning experience).  In Medek, James does better when we're not in the room so Jo-Anne sent me some videos of what he was doing on Monday. We're so happy that he does not cry much at all anymore during this therapy! Crying has now been reserved to our osteopathy appointments! Judy (osteopath) uses the DNS approach (dynamic neuromuscular stabilization). She focuses on James being able to use his stabilizing muscles in his core, shoulders, and hips to maintain 4 point crawling positions while reaching and rotating his body. It's definitely necessary to help James find more ways to move but he sure shows her some 2 year old attitude in the process! In our appointment today though we used the Wiggles as a distraction as she tried some cranial work.  He did much better today!

Jo-Anne has used TheraTogs in her last 2 appointments with James. They help to improve his stability and posture.

James got his first pair of AFOs (ankle foot orthotics) or "super shoes" as we've heard them called! We use them in any standing or walking exercises we do with James to prevent him from locking his knees and curling his toes. He's responded well to them so far.

Also new this month, is including weekly speech therapy in our schedule! Sarah is fantastic with James! He loves all the new toys she brings with her and it's an added bonus that she comes to our house!

Sarah and James

We continue to have home visits from our OT (occupational therapist), Melinda. She has been with us the longest! She and James have such a special relationship. She helps us with whatever is "missing" in James' therapy schedule. Lately, she's been helping us with seating options for James that properly support him while eating and playing. She is great at problem solving!

Melinda and James

The post would be incomplete without including something of James' sister, Shae. She is crawling all over the place, pulling herself up onto furniture and getting into everything! She loves crawling over and pinning James down and thankfully, James thinks it's funny! It's great to see their sibling bond developing - hitting, biting, laughing and all! Just wait till Shae has hair - James can get her back!

Reflections on Disability

Henri Nouwen, a Catholic priest, writer and pastor of the L'Arche Daybreak community in Richmond Hill for ten years, beautifully draws us into a common vision by saying:

"We are not alone; beyond the differences that separate us, we share one common humanity and thus belong to each other.  The mystery of life is that we discover this humanness together not when we are powerful and strong, but when we are vulnerable and weak."

It is this mystery that Nouwen refers to that I wish to dig a little deeper into in this blogpost hoping that it draws us all closer to each other and to God.

Each human life is faced with navigating the unfolding stories that they are born into.  The overarching stories that we all have the task of navigating are a variety of cultural and economic systems that assign social value according to gender, race, ethnicity, class, spirituality, and ability.  These systems have operated before our arrival onto the scene, and will continue after our departure as well.  I'd like to offer some reflections regarding how disability operates within these systems, and how the "upside-down kingdom" of God revealed in the way of Jesus may reshape our thoughts about ourselves, others, family and neighbour.

I want to begin this post by first acknowledging my own privilege regarding my awareness of walking through the seasons of my life as an able-bodied person.  Before the birth of James, I admit to having limited exposure of the day-to-day realities facing people living amidst the wide spectrum of mental and physical disabilities.  Regarding physical disability, the public common spaces I shared with persons with disabilities, as perhaps for most able-bodied people, consisted of parking lots with accessible parking, as an adolescent I remember people with disabilities having a unique pass to avoid waiting in lines at amusements parks, and of course, the Paralympic Games.  However, I also remember the church that I grew up in hosted an inclusive program for the deaf and hard of hearing.  These scattered moments allowed me to know at an early age that living with disabilities is a reality for some people.  Yet, these public moments did not equip me with enough time or availability to develop meaningful relationships with people with disabilities.  I "kept calm and carried on" as they say.  It is a sobering experience to become aware and face the privilege you have.  I have had the ability "to navigate the world and not even know I'm doing it" across many of the places that ascribe value to the white, male, heterosexual, able-bodied person.  So what do I do with this?  Well, for me, allowing the realization of my privilege to sink in and to become aware of how it may not be so easy for others is the first step.  Questioning my expectations, assumptions and preferences may be the second.  Informing my behaviour and compassionate interaction with others around me is where I'd like to be headed.

Reflecting upon how ability and disability operate in our world is something that I am learning about at a very personal level and it has forced me to face the same world I see around me, but to see it with new eyes.  To interact with the environments that I pass through questioning "does my son also have a chance to be welcomed here?"  I hope that the reflections I summarize in this post, which are all gathered from Thomas Reynolds' book below, can aid in strengthening the bonds of shared human connection between us all and point us towards a greater capacity for understanding.

Cult of Normalcy:

A concept that makes a lot of sense to me is one that Reynolds calls the "cult of normalcy".  It is essentially the cultural and social system that assigns value and power to the "ideal" or "normal" individual.  The cult of normalcy promotes the ideal body as one that is efficient, perfectly sculpted, athletic, youthful, healthy, etc., and in order to enforce this standard it is made to be desirable and projected throughout public spaces across society (media, economics, value systems, medical institutions, etc.)  As a person strives to adopt a closer position to the central image within the cult of normalcy they will also reap the benefits of the recognition, power, and worth that come along with it.  They gain "body capital" that they can in essence carry around with them potentially gaining them more access and privilege in their environment.  In contrast, according to the cult of normalcy, the impaired body, the above-sixty-year-old body, or any body differing from the "normal" are never represented except within select character roles.  In contrast to the "normal" they are deemed  "abnormal".  So, why does the cult of normalcy continue to exist?

Reynolds claims that essentially, we all fundamentally desire a sense of belonging.  We desire a home that is trustworthy and in which we each have a meaningful role to play.  Because we desire belonging we also have anxiety and fear of not belonging.  A fear of losing that sense of welcome and the positive reinforcement that comes along with it.  So, we find ways of guarding, securing and protecting it.  The cult of normalcy is born and generationally reinforced out of this desire to feel belonging.  But, instead of allowing an openness for all humanity to feel like they belong in this world, the cult of normalcy prompts us to compete with one another and displays of weakness or vulnerability are shown to be deficient.  Hence, we project ourselves as strong and "normal" and try to hide the insecurities we have.  The cult of normalcy exists because it is a way to protect and secure social recognition within a culture.  It is also highly resistant to change because change threatens this recognition and the select ideals that benefit the normalcy group.  To intensify the normalcy power distributed throughout society a general feeling of perceived normal scarcity propels it forward adding layers of protectionism within it.  As a result, the cult of normalcy tends to shun differences and will often use scapegoating as the means for legitimizing itself when faced with difference.

In scapegoating, the fears, anger, and burdens of a group are directed toward the vulnerable "other".  The result is a fear and mistrust of the other, the different, the disorienting.   The cult of normalcy protects itself by excluding what is different.  Those that are deemed different are no longer the subject of their own experience.  They are labelled by the cult of normalcy as "abnormal" and dysfunctional and the result is social exclusion.  Difference from the standard norm is treated with suspicion and persecution.  The experience of the victimizer usually allows for a release of their uncomfortable feelings and they have an inflated sense of power.  The victim feels the alienating distance from the group.

The reason scapegoating continues is because the fear of de-stabilizing the carefully manufactured image of "normal" frightens the group.  It means that the sense of belonging and worth that comes along with the cult of normalcy is at risk.  So, the burden of the fear of rejection, dissimilarity, strangeness is projected upon the scapegoat.  Binary ideals of "normal" and "abnormal" are then artificially established securing the recognition and inherent value within the "normal" while projecting the fear of rejection and exclusion onto what is "abnormal".  This scapegoating pattern is one that humanity has circled time and time again across varying identifying factors such as race, gender, class, spirituality and ability with devastating results for those marginalized.

So, how do we break the patterns of the cult of normalcy that maintain power and privilege?

Disability on a continuum 

Instead of perpetuating the binary way of thinking, such as an "us" and "them", recognizing that we all have various abilities and disabilities that adapt and change throughout the course of our lives allows for a greater degree of commonality between us all.  Disability can be seen as something that we all encounter to varying degrees, especially as young children or as seniors.  Disability seen on a continuum can shift the cult of normalcy towards identifying disability not as what the "other" experiences but as something we all face at different moments of our lives.  However, this runs the risk of minimizing the real day-to-day realities of persons living with disabilities.  That is not the intent here.  Equitable accommodation to the differing needs of a person with a disability in order to promote open access to participate in the venues of our society is still the goal.

Another interesting thought is that a person is not disabled as if the root of disability exists within themselves.  But, rather when a social context arises that exposes a certain ability in order to participate then a person may becomedisabled.  A person using a wheelchair becomesdisabled when they encounter access barriers that result is some kind of social exclusion.  For example, the elementary school that I teach at is an older school, built in the 1960's, and does not have an elevator to allow students with a physical disability to go to the second floor.  So, in order to accommodate for students or teachers with a physical disability we actually have their specific classroom guaranteed to be on the main floor in order to not socially exclude a person from their peers and learning environment.  A person in this instance may not experience the effects of disability until there is an element of social exclusion involved.  If accommodations and an inclusive learning environment are provided, the diversity and uniqueness of each student is valued and recognized.

Person-First Language

Another empowering means of breaking the cult of normalcy is to acknowledge the multifaceted sides to every person.   Our language reflects our values.  Disability is an identifying part of a person, but it is not the onlypart.  In the 1980's, advocacy groups suggested that person-first language places the person before their diagnosis and should be adopted in common language usage.  There is a difference between a "person with autism", and an "autistic person", or, a  "child with a disability" and a "disabled child".  The difference is that it aims at valuing the individual beyond their marginalization. We all have a vast array of personality traits, hobbies, creativity and relationships that also define us. Placing the person before the identifying feature of their disability can suggest a respect toward the humanity we all share.

How disability interacts within a Christian worldview?

The way of Jesus has a lot to say to us today.  The way he lived his life demonstrated a focus on the well being of those marginalized even to the point of suggesting a reversal of privilege and power in the Kingdom of God (last shall be first and the first shall be last, or, the wedding banquet parable of inviting the guests who were considered outcasts).  However, as much as we might try to place our modern notions of activism upon Jesus, it doesn't totally fit his life either.  He wasn't concerned as much with who culturally or socially maintained power as he was with infusing the transformative love of God and others within whatever system you find yourself.  His divine gift of redemption and restoration extends to all, and love has transformative restoration in itself. Stanley Hauerwas, an American theologian, has an insightful comment about how our society could look if it valued love more than other values.  He suggests "Disability might not exist in a society that values cooperation more than competition and ambition".

Diversity and difference as Good in Creation

So often, the natural human response is to wish to validate our own experience and to desire the other to become like us.  The mechanisms of conformity run very strong through our blood.  Yet, in the creation account in Genesis, and in the world we interact with every day, there is an incredible amount of diversity and difference all around.  The biodiverse environment that God created was all determined "good" and it functions through difference.  Humans carry the beautiful mystery of Genesis 1:27 which says,  "in the imageof God he created them; male and female he created them".  Each one of us is created in His image.  Diversity and difference is part of the environment that God created us all to inhabit.  In this context, ability and disability are smaller details compared to a design plan that values difference.  Some people prefer the phrasing "differently abled" which suggests a common humanity that expresses itself in diversity.  We are all loved into being and sustained by God.

Reynolds expands on the idea of humanity being created in the image of God by claiming that what this means is that all of humanity shares these three characteristics: a capacity for creativity, relationality and availability to one another.  Creativity he defines as nurturing order and providing blessing out of chaos; according to rabbi Johnathan Sacks being relational means that "God creates difference; therefore it is in one-who-is-different that we meet God"; and availability means being available to love.  To offer ourselves as gift to others seeking the good in the other.

An interesting observation may be to hold a mirror up to any community and ask how they regard their differences?  How strong is the pull toward conformity versus the acceptance of diversity?  A Christian community, following the way of Jesus, would seek to encourage the presence of differences, even in the midst of conflict, because diversity can reveal a glimpse of God and can set the stage for love to be extended between one another.  The stranger, or, the "other", is embraced into the christian community to worship God as equals.

Independence and Interdependence:

Our current western culture promotes the cult of normalcy which seeks to privilege and marginalize through promoting the ideals of independence, strength, self-sufficiency, self-worth, and self-reliance.  All of these require a certain ability in order to meet their standards.  So, how does the way of Jesus compare to these social standards?

God's creative design points towards a shared human interdependence rather then a pursuit of independence.  This is radically countercultural in our time.  Instead of projecting strength and self-reliance in our day-to-day existence, Jesus calls us to embrace weakness and vulnerability and open our hearts up to dependence on God and others.  We are called to leave our seat at the table and to wash one another's feet.  A reversal exists.  We set aside our power to empower another.  The Apostle Paul in Colossians 3:12 says "as God's chosen people, holy and dearly loved, to clothe ourselves with compassion, kindness, humility, gentleness and patience."  These are the qualities that we seek to embody together.  Having an approach that is generous with our time, as living with a disability can naturally require more time then one might expect.  Interdependence is privileged over independence.

The way of Jesus prompts us to become available to love the unique way of being for one another.  There is a strange power within weakness and vulnerability.  It is far more difficult to embrace weakness and the limits of our perceived ability than it is to simply project strength.  But as we face the fact that we are all finite beings created in the mysterious image of God, with differing and changing abilities and disabilities, then we can all see ourselves as a part of a vulnerable creation abundently loved into being by God.  To quote Reynolds again, "each and every person, created and loved by God, has something beautiful to give the world."  In Christ's example, we learn to accept one another not because of what they offer, but simply because of who they are - loved by God.  The cult of normalcy would have us deny weakness and service to one another, meanwhile the way of Jesus beckons us to become vulnerable and open with one another in order for God's transformative love to be realized.

The Church as a Community of Grace:

The collection of people following the way of Jesus draw upon the infinite wellspring of grace available through God.  Since we are all loved into being - that is "who" we are, and it is of first importance, the "what" we can or cannot do is always secondary.  The cultural pressures we find ourselves in push us to form our identity around what we do, our usefulness, utility, and performance.  The cult of normalcy distributes value through body capital, form and function, as well as productiveness to society.  In the kingdom Jesus talks about, each person bears the image of God, and the ideals of restoration, wholeness and healing is found not solely in prayer to gain more ability, but by calling upon the presence of God meet us in the midst of the circumstances by which we find ourselves.  Jesus promises to be there in our depths.  The presence of Jesus is with us, Emmanuel, helping us to bring love into the world.  Jesus is in complete solidarity with humanity, including disability.  Jesus himself models this even to the point of crucifixion.  His resurrected body after the cross maintains the scars on his hands and feet pointing towards his closeness to the experience of disability.  There is a paradox in that Christ's love to humanity is not demonstrated in power and might, but through weakness and suffering.

We all have open access to the grace of God.  As we live honestly, not denying our weakness and vulnerability as the cult of normalcy would have us do, then we begin to share humanity through interdependence.  A greater love can be known in a community of people following the way of Jesus because each person has something unique to offer, especially the marginalized, because they are given an important seat at the table.  And the grace of God covers us all like the winter snow blankets the earth.

The measure of a community can be seen by the treatment of its most vulnerable members.  As Jesus himself says in Matthew 25 :40 "whatever you did for one of the least of these brothers and sisters of mine, you did for me."  Lets strive to become a community characterized by interdependence, living with grace and love for one another.

Conclusion:

I hope that these reflections, primarily taken from Thomas Reynolds book, provide some interesting connections on how ability and disability operate in our world and how the way of Jesus calls us to love.  On a personal level, as I carry my son to and from various places I am reminded of the loving presence of Jesus in my own life.  I am reminded that I too am deeply loved by God and that every breath I take is sustained by Him.  As the psalmist proclaims in Psalm 139 "You created my inmost being; you knit me together in my mother’s womb".  

James' unique presence has taught me of the value of interdependence.  Of bearing with one another and sharing in the ups and downs that come attempting to seek the "good" of the other.  As James is carried by the love of his family, I am also reminded that I too am carried by the love of my own family.  And as interdependence is opened up amongst us, the paradox of receiving through the act of giving is present.  I want to be clear that I'm not trying to romanticize everything under the umbrella of "it's all good" here.  That would be opposed to the confusion and difficulty of the human experience.  But, even in the midst of the unknown I am reminded of the mystery of somehow being created in the image of God and blessed with the privilege of life.  Blessed with the opportunity to give and receive love.  I hope that you too can know that you are deeply loved by God.

Play Hard, Work Hard

Hi everyone! We have mostly a picture update this time. Therapy schedules are a little different because of the summer. James has had a week of conductive education camp in the mornings, along with Medek, osteopathy, massage and Grandview all mixed in. And we've made time for lots of summer fun at the zoo, parks, and the cottage my parents rented while my sister was in town visiting from Oxford, England. We play hard and work hard!

Dancing and Singing with the big kids at Conductive Education camp with the March of Dimes!

Working with Judy (Osteopath):

James and Kate (Grandview) have such a great connection:

Shannon tried out kinesio tape on James during his massage. It helps relax his hamstring muscles.

Picnic at the park celebrating Father's Day

Penner Retirement Party

Fun with Uncle Luke:

Time with the great grandparents, Grandma and Papa Boakes:

Aunt Debbie and James snuggles

Grandma and Shae

James pulled Rory's hair and thought it was hilarious!

Park fun:

Merry-Go-Round at the Whitby Ribfest

Cottage Fun:

James, Shae and their cousin, Abby

Fun at the zoo splash pad with family