Amy Julia Becker's Blog, page 22

What I Learned from “The Disruptors”

What makes a disorder a disorder? Does it harm us to label each other with disorders? Or does it help us to identify areas where people need support?

The Disruptors, a recent documentary, helped me understand the particularities of ADHD, attention deficit hyperactivity disorder. This film also raised great questions about how we label ourselves and construct identities. I noticed two parallels to our own experiences as a family experiencing disability.

One, our educational system was not built for kids with “disorders” or disabilities. The Disruptors highlights the injustices inherent within a system that punishes and belittles kids who don’t fit the norm of a typical student. It’s so important that we stop believing that kids are the problem and instead start looking for ways to create an educational system that can welcome a wider range of kids.

Two, when we focus on weakness and deficit, it doesn’t work. The filmmakers highlight taking a “strengths-based” approach to ADHD. Whether it is related to a diagnosis like ADHD or a disability like Down syndrome, there’s so much greater joy and peace when we focus on what our kids can do. This film shows how we can build on strengths rather than trying to correct or chastise behaviors that seem to hold our kids back.

Researchers estimate that ten percent of the population lives with ADHD. So is it a disorder? Or a natural variant? Or even a superpower? It might just depend on how we approach it.

More with Amy Julia:

Wildcat Movie: Why Flannery O’Connor MattersPenny Goes to CollegeAssume That I Can, Maybe I Will

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and reflections. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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What Is Normal?

What is “normal?” I don’t use the word normal very much anymore. It’s just one of the many ways my language has changed in the years since Penny was diagnosed with Down syndrome. It never seemed right—both in the sense of justice and in the sense of accuracy—to call Penny “abnormal.” So I landed on “typical.” There are areas where Penny has developed atypically, whether because particular skills happened more slowly than they often do for a typical kid (she walked at age two, for instance), or because they never happened at all (she can’t ride a bike, for instance).

I’ve been reading lately about the idea of “normal” and the ways that we define or diagnose difference. Are the labels—disability, disorder, disease—helpful or harmful? Do they assist us in caring for one another or push us into boxes? Do they perpetuate a hierarchy of humanity? 

Manvir Singh, in a piece called “Read the Label” for the New Yorker, writes that giving something a name also gives a sense of control. He offers a historical look at the way we have classified and codified psychiatric disorders and disabilities and, more recently, have turned those diagnoses into identities that can both be a gift of self-understanding or a source of confusion. Labels can free us to love ourselves or box us into self-fulfilling prophecies.

Tom Pearson’s new book, An Ordinary Future, describes his experience as an anthropologist and father of a child with Down syndrome. Michaela, his daughter, pushes him to explore the boundaries of “normal.” Her diagnosis prompts him to question why we even have that category and why we see it as the most desirable place for our children to be. The idea of “abnormality” reflects cultural values more than any fixed truth, and it focuses on perceived deficits and deficiencies rather than potential. 

Both of these writers expose the way the idea of “normal” can harm us. It cuts us off from exploring human potential, receiving one another with love, and assuming that each and every human we encounter is worthy of respect. Moving beyond the categories of “normal” and “abnormal” can lead us to become more curious about difference and more open to possibility.

MORE WITH AMY JULIA:

FREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)How Language Shapes Our ImaginationS7 E 10 | Disability and the Language We Use with Andrew Leland

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and news. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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Ministry of Tears

How do I care for someone in pain? People have asked me this question. I’ve asked this question. And I thought it would be helpful to share advice from Katherine Wolf, who survived a stroke at the age of 26. These are all direct quotations (edited for length and clarity) from Katherine on my podcast last week when I asked her:

“How do you care for hurting people in the midst of their pain?”

MINISTRY OF TEARS

There is a deep ministry of tears. We all want to talk about the ministry of truth. And that will come. Absolutely. We should be sharing the deep truth of Jesus to get out of bed in the morning. Absolutely. But not yet. In the moment of deep pain, cry.

People don’t need platitudes. They don’t need a Jesus bandaid. They’re going to need a lot more of Jesus than a bandaid, and the time isn’t right yet for that. The big old bandage they need comes first and foremost through tears, honestly.

MINISTRY OF “WITH-NESS”

Let people witness you with them. Let them witness your with-ness. Be in the room. Show up. Have tears if you have tears. Be a shoulder to cry on.

“Less words are the best words” for moments of suffering.

KATHERINE’S PERSONAL EXPERIENCE

The very most meaningful sentiment to me in my entire ordeal was five years after the stroke when I had to have an unrelated brain aneurysm removed. A friend said to me, “I cannot believe this is happening to you.”

I felt so seen and known as my own thoughts were, “Yes, I just can’t believe it. I cannot wrap my mind around this. How can this keep happening?” I wanted to say, “Thank you for just not believing this too because it is shocking, and my world is ravaged, and thank you.”

I think we can do that for each other.

Have you experienced the ministry of tears? What would you add to this? How have you felt cared for when you were in the midst of pain?

More with Amy Julia:

S7 E 16 | Hope That Heals in a World That Hurts with Katherine WolfThe Power of LoveS7 E14 | How to Honor Limits in a World That Doesn’t with Micha Boyett

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and news. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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Wildcat Movie: Why Flannery O’Connor Matters

I am still trying to find a theater nearby that is showing the new film, Wildcat, directed by Ethan Hawke and starring his daughter Maya Hawke as Flannery O’Connor.

I hated Flannery O’Connor’s stories until I loved them, and I believe her work continues to matter because she helps us understand what it means to be human. She sees us in all our vulnerabilities and frailties and petty faults and grievances, and she holds out hope that we can be saved from ourselves and redeemed by grace.

There are lots of characters with disabilities in O’Connor’s work, and they can seem like caricatures or even pitiable humans at times. But that’s not the point at all. O’Connor writes about so many characters with disabilities because they embody the beautiful and broken aspects of our common humanity in a way that everyone can see. The story of disability in O’Connor’s fiction invites us all into a different way of understanding our humanity, a different way of being.

People with disabilities are not on the fringe of the created order for O’Connor. Rather, they are central to what it means to be human, what it means to be creatures with a Creator. Characters with disabilities demonstrate humanity on both a physical and spiritual level. The fact that most able-bodied people want to ignore the existence of individuals with disabilities, or explain away their disabilities in terms of sin or fate, only underscores O’Connor’s point. As people with obvious limitations, brokenness, vulnerability, and need, individuals with disabilities are gifts, visible signs of an invisible reality that matters to all of us.

And so, I really want to see how her life is portrayed in Wildcat. I hope you get a chance to see it too.

MORE WITH AMY JULIA:

S7 E11 | Flannery O’Connor and the Prophetic Imagination with Jessica Hooten WilsonA PDF Guide to Books About God’s Logic of DisabilityDisability Is Central to James McBride’s Latest Novel. Critics Are Missing That Point.

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and news. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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A Wild Weekend

How do you make it through a wild weekend that includes one daughter’s dance rehearsals, another’s soccer games, your son’s performance in Hamlet, and your husband’s installation as a Head of School, all while celebrating your own 30th reunion from high school?

Peter’s best friend—and Penny’s godfather—flew in from Richmond for a weekend that involved as much chauffeuring our kids around Northwest CT as it did hanging out with grownups. My two best friends from high school not only showed up but reminded me that there are people who have known me and loved me for exactly who I am, and not who I sometimes pretend to be, for over three decades. My aunt and uncle also showed up to drive our kids places where we couldn’t be, and participated in an eclectic Mother’s Day brunch. And we got to finish it all off watching William perform.  

So how do you make it through? Kind of in the same way you make it through a white-water rafting trip. Be as prepared as possible, do what your guide tells you to do, lean on the other people in the boat with you, don’t be surprised if you get splashed with lots of cold water, and allow yourself to enjoy every minute of the ride.

MORE WITH AMY JULIA:

BOOK: To Be Made Well: An Invitation to Wholeness, Healing, and Hope Season of Waiting and ImpossibilitySaying Goodbye to their Childhood Home

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and news. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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Mothers Who Went Before

My uncle sent me this photo for Mother’s Day. It shows my great-grandmother (far left), my mother, and my grandmother. I love this snapshot of multiple generations gathering together to enjoy sunny summer days and take delight in each other.

My own kids only knew my grandmother for a few years. I’m glad she had a chance to hold them in her arms and sing to them and smile that same beautiful smile. And my mother, my kids’ Nana, is still driving them around and sending them care packages and hemming their pants since her daughter (me) never learned to sew.

It was nice to be celebrated on Mother’s Day by our own kids, but this year I’m feeling even more grateful for all the mothers who went before.

More with Amy Julia:

FREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)Mothers Can Pass Along BelovednessLetter from Penny to a New Mother of a Baby with Down Syndrome

Let’s stay in touch. Subscribe  to my newsletter to receive regular updates and news. Follow me on  Facebook ,  Instagram , and  YouTube and subscribe to my Reimagining the Good Life podcast.

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How Language Shapes Our Imagination

I’m two weeks into my new workshop, Reimagining Family Life with Disability. We have nearly 40 parents of children with disabilities who are Zooming in from across the United States—Vermont, Georgia, California, Minnesota, Texas, New York, and many more—and from around the globe—Canada, Germany, Australia.

So far, we’ve talked about the messages our culture tells us about disability. We’ve explored two models that can both help and impede our understanding of disability. And we’ve talked about shifting our identity, our mindset, and our behavior as we seek to reimagine our family life.

The Tale of Two Doctors

In one session, a few participants shared stories about the ways their doctors talked about their babies, who each had Down syndrome. One mother described the aftermath of an emergency C-section, with her baby in the NICU. Her doctor came in and said, “I want you to know your son is fine. I believe he is fearfully and wonderfully made. He does have some medical issues. We do believe he was born with trisomy 21, which is known as Down syndrome. We are doing everything your son needs right now.”

Then another couple described their own experience with a medical team after giving birth to their son with Down syndrome. The doctor asked them, “Did you know this was a possibility?” They told him yes, they had known they might have a child with Down syndrome. The doctor said, “And you didn’t do anything about it?”

You can imagine the difference those doctors’ words made to the parents involved. One shaped the imagination with honesty and hope. The other shaped the imagination with accusation and fear. 

A World Where Everyone Belongs

We can all be people who participate in creating a world where people with disabilities and other vulnerabilities belong. We can all imagine spaces (I visited one last week!)—whether that is a hospital delivery room or a classroom or workplace—where vulnerable people receive the welcome they deserve. We can all be people who live with honesty and hope instead of accusation and fear.

I know that it is naive and idealistic to envision a world of belonging. But conversations like this make me insist that living in a place of imagining goodness and beauty and truth is where I always want to be.

I’d love to hear from you. Where have you experienced a place where vulnerable people received the welcome they deserve?

MORE WITH AMY JULIA:

FREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)

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Visiting Kindness

So here’s a beautiful model of how to create a space that benefits an entire community.

I got to visit my friend Katie Kishore in Charlottesville last week and see Kindness Cafe in person. Katie has dreamed of and worked towards creating a space for employment for adults with disabilities as well as a space of welcome for all. That dream has become a reality.

Kindness is housed within a local YMCA, so when workers finish their shift, many of them go to the gym. Seventeen adults with disabilities are employed there, and at least one of them has also secured employment with the Y. Typically-developing adults serve as managers, including two local students from UVA. I can only imagine how it might have shaped (and reshaped) my college experience to work alongside other young adults with intellectual disabilities.

Kindness was bright and cheerful and welcoming and I ate a delicious blueberry lemon square. And I left with just a little bit more hope that this new frontier of integrating people with disabilities into everyday life is not only possible but also desirable. Thank you, Kindness, for showing us what beauty and goodness looks like in action.

MORE WITH AMY JULIA:

Creating a More Equitable World {Guest post by Katie Kishore}Employment in Churches for People With DisabilitiesPenny Got a Job

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , and  YouTube , and you can subscribe to my Reimagining the Good Life podcast on your favorite podcast platform. 

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The Power of Love

The only power that God ever chooses to wield is the power of love. And that’s a really non-coercive, gentle, patient, kind power. It’s incredibly different from the power of the world. It is still powerful. It still changes things. But it changes things slowly, and with cooperation. It is like the power of a seed that becomes a tree or yeast that leavens bread.

All of us live in dependence upon a power, whether that is the power of achievement or the power of money or the power of love. What would it look like for us to be dependent only upon the power of love?

More about power, love, and limits in my conversation with Micha Boyett: How to Honor Limits in a World That Doesn’t

MORE WITH AMY JULIA:

How to Honor Limits in a World That Doesn’t with Micha BoyettS7 E15 | Bringing Politics Under the Power of Love with Michael WearThe Power of Saying Thank You

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , and  YouTube , and you can subscribe to my Reimagining the Good Life podcast on your favorite podcast platform. 

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Stop and Watch the Bears

I never thought I would be a person with bear cubs in the backyard… I could watch these little ones all day. Our life is full this time of year. Yours probably is too. After all, its MAYcember! I’m working to add occasional moments of rest to my day. To read a book for a few minutes instead of answering more emails. To journal. To stop and watch the bears. In days that feel like constant rushing, I want to take time to notice bear cubs and harbingers of spring, to cultivate peace through nature’s beauty—it all reminds me that my identity and worth don’t come from busyness.

MORE WITH AMY JULIA:

Training in LoveDon’t You Care If We Drown?How Beauty Brings Peace, How Peace Brings Beauty

Subscribe  to my newsletter to receive regular updates and news. You can also follow me on  Facebook ,  Instagram , and  YouTube , and you can subscribe to my Reimagining the Good Life podcast on your favorite podcast platform. 

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