Amy Julia Becker, M.Div.
Bill Gaventa and Bethany are discussing. Toggle Comments
Here are the notes I took from the small group. Feel free to amend and add to as needed. 🙂
Small group – Amy Julia Becker: 7/18/12
• Question: If I’m teaching a whole church community – what info can I give them about what to do/not to for a family or individual with disabilities?
• Question: On the relationship between identity and ability.
Abilities still bring great joy – it’s nice to get really good at some specific activity, and that enriches a human life, but that’s not what defines a human life as rich. So it’s about putting them in the proper order.
• A question came up about whether there are aspects of disability that are to be deplored. A couple of parents mentioned things they wished their sons could do (call them father, the ability to see).
Parents of children with autism also express that kind of separation that exists btw them and their kids, and between the child and herself.
It’s that piece of separation that I think is deplorable. The whole Christian gospel is one of reconciliation.
• Question: In the Charismatic tradition we pray for people to be healed, and sometimes that happens, and being in this disability conversation has made me think through my theology a lot more. My friend has CP and breast cancer, and she asks why doesn’t God heal me? Should we pray for both? Neither? Why not have God heal everything?
• Question: What if Heaven looks different for all of us, and is what each of us needs most?
AJB: If someone has an identity that is not based on ability but that is given by God, received by others, and central to who he is – then someone changing over time is seen differently than a “negative disruption.”
• Paul Miller wrote a book that is helpful.
• Question: What is the role of grandparents in your family?
• Question: Revelation 21 says No More Pain – so what kind of pain won’t still exist?
• Question: Reciprocal benefits of Inclusive Community. I think a lot about the presupposition of normalcy – and to expose that so it can be shown as a sham. I am a parent of children with disabilities, and I run an organization to bring in secular social service approach into the faith community world. With this work, 98% of the time I’m in the faith community trying to promote a culture change to be more inclusive. So I am wrestling against a dominant culture, presuppositions – they focus on architecture and not attitudes, not seeing the big picture, looking programmatically and not relationally, etc. I wonder about the best way to engage congregations and how to create a paradigm shift in congregations. What are practical things that can be done that expose the idea of normalcy and create a paradigm shift that changes the way the community works.
• Question: Can anybody recommend a book that goes more deeply into the fact that we don’t see with God’s eyes but that God sees creation as good?
This is the draft text of Amy Julia’s presentation. The final version will be on the video and audio recordings to be available in the next few months. Raising Children with Disabilities in an Age of Achievement
Read prologue and opening scene
read “he was a gift” 27
In many ways, the rest of this book is my attempt to understand what that nurse meant when she uttered those four words. It was hard to understand Penny as a gift for a couple of reasons. First of all, generally when I am given a gift, I feel excited and thankful, but I didn’t feel either of those things when I thought about Penny. I don’t mean to say I didn’t love her. I did, fiercely. But in those early days and months, I felt really sad and afraid about the fact that she had Down syndrome. Some of that sadness and fear was on her behalf—I worried about how she would respond to people who made fun of her when she was older, I worried that she wouldn’t get to do things she wanted to do—but much of the sadness and fear was about me. I didn’t want Penny to have a disability, sure, but perhaps even more, I didn’t want to be the mother of a child with a disability. So how could I see her as a gift?
Secondly, I wondered how it could ever be a gift to have a child who would suffer, or, in the nurse’s case, die young? I wondered if this language of “gift” was a saccharine attempt to make something sound positive that was really just hard.
As I look back on it, I see that there was a larger cultural narrative that also made it difficult for me to understand Penny as a gift. At that point in my life, I had a sort of willful ignorance about what it meant, what it felt like, to be a person with a disability, especially with an intellectual disability. Before Penny came into my life, I didn’t know anyone with an intellectual disability. And I wasn’t interested in knowing people with disabilities. My younger sister Kate participated in a program called Best Buddies in college, where she was paired up with a woman with Down syndrome. I remember when Kate used to tell me about her friend Sandra. Kate would talk and talk and talk about her—about going to McDonald’s together or shopping at the mall or Sandra telling stories about her friends and her boyfriend. Kate told me that Sandra was the best part of a difficult first year of college. And as much as I admired Kate for her ability to relate to Sandra, I was also a little puzzled by it. And I certainly wasn’t interested in having a similar friendship myself.
Back then, I used politically correct language and I didn’t laugh at jokes or watch movies that mocked people with disabilities, but I did have a sort of careless indifference and almost an intentional ignorance about people with disabilities. In the hours and days that followed Penny’s birth I realized, not only was I utterly ignorant about what Down syndrome was, but I also had avoided people with Down syndrome and other disabilities my whole life. Only because our daughter had Down syndrome did I realize that I had come into the hospital with a set of expectations about who she would be and about who our family would be, and those expectations left no room for a child with an extra chromosome.
This realization of my ignorance led me to ask myself a lot of questions, and ultimately to question many of our cultural assumptions about what our lives are “supposed” to look like. I began to recognize the ways I had believed that people could be measured by what they could do, by what they could accomplish. I had bought into a cultural narrative that says Ability leads to Identity. Ability leads to Identity. And so, having been given a child with a disability, not only was I confused about who she was, I was also confused about who I was and about who we would become as a family.
I started to think about this subtle, often unspoken, but very real assumption that our lives are measured by accomplishment and achievement, and I started to think about what that assumption does to us personally and as a society.
Although I was raised in the church and have been intentionally following Jesus since the middle of high school, my life was marked by a very un-Christian belief that I needed to do everything right in order to be acceptable. And I came very close to applying that same belief to my children. When Penny was born, at first it was really hard to acknowledge that I had a set of expectations for her that she wouldn’t be able to achieve. It was hard to acknowledge how much I had bought into the images of supermodels on the covers of glossy magazines and the idea that our worth as human beings can be measured by the SAT scores of our children or by economic productivity or athletic ability.
But coming face to face with those expectations also allowed me to see them for what they were—a false and shallow conception of what it means to be human, of what it means to understand our identity as human beings.
To put some religious language to this, our culture idolizes achievement. We not only hold it up as a standard, but we falsely assume that if we can only work a little harder or do a little more, we will be satisfied. But there will always be something more to do, more money to earn, more awards to win. There will always be someone else who does it better. Achievement is like any other false god—it demands our worship and gives us emptiness and longing in return.
As it turned out, loving my child with a disability meant that I needed to smash an idol.
When Penny was just a few days old, a friend called. I’m going to pick up reading with that conversation:
Read passage about receiving the child 67-68
Virginia’s words stuck with me, and I knew that she was right. To the degree that we could receive Penny into our lives, we would be receiving God’s work in our lives. It all sounded good in theory, but putting it into practice was another story.
I’m going to read another scene that comes from A Good and Perfect Gift when Penny was about 13 months old:
So on the one hand, I couldn’t have been more delighted in who Penny was. When I was home with her, I wasn’t looking up her accomplishments or comparing her milestones to the charts in baby books. But when I found myself in the context of other kids, this whole experience of ability determining identity smacked me in the face gain. And I realized again that understanding identity as something based upon ability leads us all to feel inadequate. Whether we are typically-developing or with disabilities, we can never measure up.
The first major problem that follows the idea that ability determines identity is our own sense of insecurity. But this idea leads to a second problem in that we try to figure out who we are not only based upon our personal abilities but also in relation to the abilities of others. So we inevitably make comparisons—whether of ourselves or of our children. And this type of comparison leads us in two directions—either to judgment or to jealousy. In the scene I just read, there was jealousy every time I saw another child doing something Penny couldn’t, and there was judgment when I compared myself to the other moms and thought I had the harder row to hoe. This plays itself out throughout our lives as parents—“I wish I could get my kids to listen to me the way she does…” “I’m glad I don’t let my kids stay up as late as they want…” I’m sure you could fill in the list with other statements.
Either way, judgment or jealousy, the impact is for relationships to be severed, or at least, impeded.
Is there any other way to understand ourselves and our children?
If we can start to see our children, and ourselves, for who we are instead of for what we can accomplish, comparisons take on an entirely different tone, and we can be drawn toward one another in our diversity of abilities instead of pushed away from one another. If we start to understand identity not as a reflection of our abilities but as a reflection of our relationships, of the reality that we are people who love and who are loved in return, then our lives begin to be marked by love instead of performance, by freedom to enjoy one another rather than the constraints and competition of achievement.
Conversation with Sarah Widmer
All parents face these problems of comparisons. Parents of typically developing children have a set of pressures about whether you’re giving your children enough stimulation and enriching opportunities and pushing them hard enough so that they’ll get into a good college.
New Yorker article
Parents of children with disabilities face a set of pressures about getting the proper therapies and advocating with school bureaucracies and having super endearing stories to tell of how amazing their brave journey has been. Across the board, we face the problem of comparisons.
I was talking about similar themes with a parenting class a few months ago, and one of the parents said, “I’m tracking with you in theory, but it’s so much easier to tell you what my child can do than it is to tell you who he is.” She’s right. Measurements are easier. More precise. More concrete. But some other ways to think about this question of who our children are is to begin with the love we have for them. First of all, your child is your child. Your son or daughter. And she or he is loved. But second of all, your child is a child who loves in return. Their love begins with other people, but it also extends to experiences and activities. It might be, for those of you with babies, love for splashing in the bath or cuddling or spit bubbles. For those of you with toddlers and pre-schoolers, it might be a love for animals or listening to stories or chicken nuggets. For those of you with older children, it might be a love for dancing or music or climbing on the playground or going to work in the morning.
Here’s the thing. If ability is our measure for identity, for belovedness, for our worth as human beings, every one of us falls short. Every one of us fails. None of us can ever achieve perfection. None of us can ever do everything right all the time. All of us, no matter what our genetic makeup, have needs and limitations. All of us are human. And if who we are is based upon what we can do, then any time we are unable to achieve or perform, we no longer have an identity.
But if our identity arises from the fact that we are loved, then, again, the diversity of our abilities becomes not an opportunity to measure and judge but rather to celebrate, to give to and receive from one another.
In some ways, I’m making a case for the value of love between a parent and child, and yet all of us know—both in our experiences as children and, for those of you who are parents, from that experience as well—that human love fails. Parental love gets us a lot farther than identity based upon achievement, but it still ultimately leaves us wanting. And yet Christians follow a God whose love never fails, a God who is defined as love. A God who exists in a Trinity, Father, Son, and Spirit, a relationship that is fueled by love, by mutual giving and receiving. The whole Christian story is a story of God inviting us into that love fest, inviting us to understand our belovedness and the belovedness of those around us, and to participate in God’s work of demonstrating that love to the world. So for Christians, knowing ourselves first and foremost as God’s beloved, gives us a bedrock for our identity, and it enables us to extend that love to and see the belovedness of others.
I’ve spoken about one lie I believed in the hospital when Penny was born. I believed that her identity was determined by her abilities, and so I entered into an identity crisis on her behalf. Thankfully, I’ve come out of that crisis with a better understanding not only of who Penny is, but also of who I am, who my other children are, and really who every human being I encounter is.
But I also believed anther lie when I found out that Penny had Down syndrome. I also believed that because she had received a label of “disability,” she would not be able to offer much to the world around her. I thought her limitations meant she was incapable of contributing, that she would be someone who was needy but unable to give back. But I was wrong about Penny, and I was wrong about people with disabilities more generally.
I can’t tell you what exactly your children are capable of doing or what their strengths or weaknesses will be. What I can say is that every person in this room has limitations. And every person in this room has possibilities for growth, for learning. We all have limitations. We all have possibilities.
Perhaps a better way to say this is to return to the language of gifts. Not only do I now believe that every human being is a gift to others, but I also believe that every human being has particular gifts within their being. Sometimes our gifts can be measured, as in the person who has a gift with numbers and can get an 800 on her SAT, or the person who has a gift with basketball and can score 3-pointers all day long. But oftentimes our gifts are immeasurable, and oftentimes they go unnoticed.
I was with a young woman with Down syndrome—she was about 16—a few years ago. Maggie wasn’t able to speak very many words, and she used a few signs to communicate her needs and wants. She carried a doll around with her wherever she went. She was very polite. As I interacted with her throughout the evening, I wondered, “Who is she?” What makes her unique, and what makes her particularly valuable? She can’t do many things. She can’t read. She can’t drive a car. She can’t have a conversation. I know what she can’t do. But who is she?
About two hours into our time together, our two families were sitting in our playroom. And this young woman sat on the floor. Our son William was about six months old at the time. William was, and is, an intense little boy. He was a really tough baby. He cried a lot. He squirmed a lot. He never cuddled and his body was rarely, if ever, calm. But when Maggie sat down with him, his whole body quieted. He lay there, as content as I had ever seen him, as she gently stroked his cheek and smiled at him. Her presence was a gift to him, and to me.
I talked with her mother later about that interaction, and her mother said, matter-of-factly, “Oh yes, that’s Maggie’s gift.” She went on to tell me a series of stories of times when Maggie’s gentle and persistent presence had helped to calm someone else down.
Years earlier, I don’t know that I would have been able to see Maggie’s value. I assume that I would have seen her as someone who needed me. I don’t think I would have known that I needed her too. But having Penny in my life has taught me how to look for gifts in every person I encounter. Having Penny in my life has helped me to understand the truth that our identity comes from being loved and not from being able to achieve or perform.
According to the dictionary, a gift is “something bestowed or acquired without any particular effort by the recipient or without its being earned” or “a special ability or capacity; natural endowment; talent.”
Maggie’s gift is her presence. There’s something about her that calms people down—from a woman in a nursing home to my fussy son to countless other hurting people her mom could tell us about. I suspect that many people in this room could tell stories about the gifts their children bring, and I suspect that many of those gifts would be intangible ones, the gift of laughter or patience or compassion.
When people ask me about Penny now that she’s 6-years old, I can speak about = her struggles. I usually say that her biggest challenges are behavioral—she’s really impulsive so every day includes conversations about “quiet hands” and “listening ears.” Her skills include being able to read and write and doing a great job in her ballet class. But her gifts are probably what make me feel the most joy, and again, they are somewhat intangible. Her gifts have to do with relationships, with making people feel loved and cared for. They sound almost trivial when I try to put them on paper, and they wouldn’t translate well on a standardized test. For instance, a few months back our babysitter broke her foot. A few weeks later, Penny woke up and marched to the kitchen without coming in to our bedroom to say hello. A few minutes later she was back, with a paper in hand that read, “Dear Shannon I hope your foot feels better. Love Penny.” What struck me was the fact that the first thing on Penny’s mind when she woke up was Shannon. She didn’t need to be reminded or prompted. She has a natural ability to think about other people and express her genuine care and concern for them. I just love that about her.
Penny has gifts that others need, as does every individual in this room, and every child represented by a parent in this room. Those gifts are easy to overlook in a society that focuses on abilities and achievements, but they are easy to see and receive when we are able to look at each other through the eyes of love.
The nurse in the hospital was right. Her son was a gift, just as our daughter, and your sons and daughters are gifts. I mentioned earlier that I was neither grateful nor excited about having a child with Down syndrome. I now can say with great certainty that I am excited about watching Penny’s life unfold and I am incredibly grateful for it. I am also eternally grateful for the many surprises Penny’s life has contained, including the gift of my own gradual transformation from one who sees the world through the lens of achievement to one who sees the world through the lens of love.
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