The following previously published in Christian Courier:
Happy New Year! For new CC readers, this column is an expression of our family’s experience with faith and disability. My husband Ralph and I have four daughters: Emily and Sophia are neurotypical teenagers, passionate about everything (except for maybe drying the dishes), Rachel is 11 years old, and Janneke is eight. Rachel and Janneke are considered medically fragile with complex care issues. Each day is a step forward into our new normal while reconciling our angst over this complicated life with God’s sovereign purpose and love.
In their schools, Rachel and Janneke have individualized education plans (IEPs). The IEP goals, created or renewed each school year, are specific to the girls’ needs and tailored to their strengths and weaknesses. Figuring out what goals are possible and what goals are beyond their reach when no one really knows the extent of their capabilities is daunting.
I reference those IEPs because it’s January, the time of year when many people are determined to make individualized goals (resolutions!) for the new year. The most common relate to health – including but not limited to fitness and weight loss.
January seems to hold much hope for these aspirations, but often January’s determination becomes March’s frustration becomes August’s surrender becomes late December’s return to resolve once again. Statistics suggest less than 10 percent of us actually achieve and hold those resolutions.
Often, resolutions convey what we believe to be ideal, whether we reach that goal or not. Not only does that ideal reflect how we see ourselves, it also filters into how we see others – and what we believe to be normal in our culture.
What happens when we don’t fulfill our resolutions? Does that change how we see ourselves? Does it change how we see others? What are we communicating when we are forever (and in vain) striving for some ideal?
American writer Nicholas Carr references the less-than-authentic self within the context of social media. He writes, “We project an idealized version of the self, formed for social consumption, and the reflection we receive, continually updated, reveals how the image was actually interpreted by society. We . . . then adjust the projection in response to the reflection, in hopes of bringing the reflection closer to the projected ideal.”
Ideal vs real
As a mom to two medically-fragile daughters and two neurotypical daughters, I am aware of what is projected as ideal developmental milestones. I’m also aware that when we view disability only through the lens of a medical model, we see disability as a problem that doesn’t meet milestones and has a preconceived trajectory requiring treatment. The disability needs to be fixed.
I prefer the social model of disability that says limitations can also lead to possibilities. There are legitimate concerns, but therapy can support a new normal, acknowledging that often there is no “fix.” Understanding disability in a social context means that goals can be made and attained together because we don’t measure with an impossible ideal; we measure according to what is observed and what exists in the realm between possibilities and limitations for each unique person within the context of community.
I’m currently reading A Vulnerable Communion by Thomas Reynolds. One of the first phrases that caught my eye in his book was disability is a factor in the cult of normalcy. Humans can develop an excessive admiration for an ideal and for a standard of normal, isolating those who don’t fit from those who fit.
“The basic argument of [his] book is this: Wholeness is not the product of self sufficiency or independence, but rather of the genuinely inclusive communion that results from sharing our humanity with one another in light of the grace of God. To exist as a finite creature is to be contingent and vulnerable. This means we are beings that face limitations and are capable of suffering from a range of impairments. There is a profound theological implication here. It is precisely such vulnerability that God embraces in Christ, entering fully into the frailty of the human condition, even unto a tragic death. Jesus is Emmanuel, God with us.”
Peace to you and yours for 2018.