On Parenting and Disability

by BRENT CLINE

There is no disability, only disabilities. This isn’t meant as a maudlin, emptyheaded statement, the way parents at the playground might dispense advice: each child is different, my kid is wholly unique, and so on. Of course, that’s hardly true. Children are so much the same that seasoned parents can all but guess exactly what new parents are going through just by hearing the children’s ages.

This is not the case with disability. What does epilepsy have to do with achondroplasia? What does Down Syndrome have to do with cystic fibrosis? A wellmeaning family friend once told me that my daughter reminded her of a girl she knew: a young, blind woman leaving home to study at Ohio State. I didn’t ask this family friend what this young woman could possibly have to do with my daughter, who at 18 years old cannot reliably count to five.

When friends speak about Little League baseball or dance practice, I might consider including how my daughter successfully zipped her coat that morning.

The peculiarity of disabilities can make parenting a lonesome and guilt-ridden experience. I know parents of children with various disabilities, but none like my daughter. She barely speaks. She doesn’t have enough cognitive ability or attention span for sustained communication of any kind. When friends speak about Little League baseball or dance practice, I might consider including how my daughter successfully zipped her coat that morning, but normally I don’t say anything about her at all, effectively erasing her from conversation. I choose guilt afterward over pity in the moment.

If there is perhaps any universal statement to make about the experience of parenting a child with a disability, it is this: pity is the great enemy. Pity is an appraisal of your own worth as remarkably too high; you remember well all your mistakes and cruelties. Pity is also an appraisal of your child as too low; she is every much a delight and a crank as any other child, and though it took a while, you have learned to feel pride in zipped coats the way others do in a home run or plié.

Still, it is not difficult to imagine why these other parents harbor pity. No parent wants their child born with a cognitive or physical disability. You are, in many ways, living those other parents’ nightmares. And this is one of the great cerebral oddities of parenting a child with a disability: the innate feeling that they ought not to be this way. They should be able to see. They should be able to speak. That tracheal tube should not be there.

This is the emotional tightrope that many parents walk: the instinctual, hyperactive pride for your child mingled with the awareness that your child ought not be this way. The reactions to this are predictable and each worthy of understanding. There is the parent who refuses to accept the disability, seeing instead only difference, a position possible if the disability

There are no exceptions in Communion; the babies, the scholars, the infirm, the healthy, the senile, and the sick all commune with the same risen Christ in the Eucharist.

isn’t severe and doesn’t guarantee lifelong care or force the family’s life to center around caretaking. This is a common academic understanding of disability in the world of intersectionality: it is only difference. For many, this is true. But the child on a ventilator or the adult in chronic pain are not witnesses of simple difference. The impairment is real, and it is unfortunate.

There is also the parent who cannot jettison from their mind the life that might have been if not for the medical error, the genetic fluke, or the traumatic incident. And as with all poles, there is the mass of us in between, swinging between a scornful pride toward our friends who do not understand why we high-five our children when they use a napkin correctly, and a guilt for daydreaming about our children as anything other than what they are.

I don’t make any claims that I am positioned correctly between these poles, but it isn’t for lack of tools in front of me. The management of my own parental paradox (there are many more, I am sure) is modeled for me through the life of the Church. What remains is for me to embrace it.

My daughter has no intellectual concept of God. She has little capacity for contrition. She cannot read, does not understand even the simplest story, and has never said a willful prayer in her life. The beats of the Church calendar, the sacrament of confession, and the beauty of worship and its schema for our own lives is lost upon her. She is locked out of the abundance of the Church through no fault of the Church or of her own. I cannot say anything but that this should not be. My daughter should not have the intellectual and emotional capacity of a distracted three-year-old.

Yet there, at the heart of every Liturgy, the chalice is held out to all Orthodox Christians. My daughter, guided each time by someone in our family, approaches. No pastoral exception is necessary to allow her to come forward. We don’t need any ancient canon announcing that our modern understandings of disability are not to preclude participation in the Eucharist. Her invitation is in the fabric of the Church, not in the compassion of a given individual. There are no exceptions in Communion; the babies, the scholars, the infirm, the healthy, the senile, and the sick all commune with the same risen Christ in the Eucharist. My daughter does not receive the sacrament as sentimentality, but as a young woman with full personhood made in the image and likeness of God.

The church I attend has a fair number of regular non-Orthodox visitors, many of whom are more likely to know the plot of The Brothers Karamazov than who was in last year’s Super Bowl. It is not uncommon to hear how these visitors seem to already believe what the Orthodox Church maintains. They are already intellectually aligned with so many of the doctrines. I tell some visitors, the ones with whom I have a rapport, that no matter what they are intellectually aligned with, they are not Orthodox. And my daughter, who intellectually aligns with nothing but is baptized and partakes of the Eucharist, is no less a member of the Church than the priest who has the honor of offering her the spoon and watching as she bobs her head in pleasure upon tasting the wine and bread.

The Church, in Her wisdom, offers me this model in raising my daughter. The brain damage should not be there, and in her resurrected body it will not be. Yet for now it is, and the reality of impairment and the incapacity of her brain and body do not lessen her personhood or her relationship to God. She is no less a symbol of the fall of humankind than she is a symbol of atonement; that is to say, she is no different than the rest of us.

The Orthodox understanding of my daughter’s disability reflects a parent’s mourning about the grandchildren who will never be, while simultaneously celebrating the zipped jacket. The paradox is not meant to be undone, only embraced, just like all the paradoxes we all contain and scarcely recognize.

BRENT CLINE is a teacher. He is a parishioner at Holy Ascension Orthodox Church in Albion, Michigan.

Photograph: sewcream, courtesy of Freepik