Amy Julia Becker's Blog, page 24

Let’s Drop “Low/High Functioning”

I was totally taken aback the first time someone asked me if our daughter Penny was low functioning. I didn’t want to talk about any human in terms of how they function, as if they’re machines functioning at a high or low level.

But I didn’t know how to respond.

Over time, I learned the language of challenges and gifts, of needs and what we have to offer.

All of us have challenges.

All of us have gifts.

All of us have needs.

All of us have something to offer.

This language of challenges and gifts is a way I can talk about all humans, including our daughter Penny who has Down syndrome.

We’re going to talk about that and lots of other ways to navigate disability and reimagine a good life as a family in the Reimagining Family Life with Disability workshop that I’m offering soon. I hope you’ll join us.

MORE WITH AMY JULIA:

Workshop: Reimagining Family Life with DisabilityPlaydates and DisabilityS7 E 10 | Disability and the Language We Use with Andrew Leland

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Penny Goes to College

Most people say that kids with intellectual disabilities fall off a cliff when they turn 18 and complete their time in high school. Even though most of them are still technically provided some services and supports through their respective states until they turn 22, I hear story after story of kids who are languishing in transition programs. I worried that Penny would join them.

Instead, we stumbled upon a program at a local university that is designed for students just like Penny. 30 or so students take college classes for credit or as an auditor while also working on job training and transition skills. These students are integrated into the larger college experience—socially and academically. They also have particular supports and time together.

When we found out about it, it seemed too good to be true.

But then Penny applied, and we toured the campus, and she received a letter of admission. We just needed our school district to agree that this was the right placement for Penny.

Again, plenty of other people at this point have a fight on their hands. Our friends in other places have found programs like this that their school districts won’t pay for. But we just found out that the district will indeed support Penny’s participation in this program. There was no fight about, just a team of people who gathered to congratulate her and talk about how she could be supported.

I have all sorts of thoughts about why Penny is receiving so much more than so many other kids like her (and the injustice of this reality). But for today I’m just here to share this good, unexpected news that is “more than we could ask for or imagine.”

Congratulations, Penny, as you head off to Post University’s Emerging Pathways Program!

*Shared with Penny’s permission

Check out my brand new WORKSHOP: Reimagining Family Life with Disability

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What Olivia Rodrigo’s Concert and the Eclipse Have (and Don’t Have) in Common

On Saturday night, I took Marilee and two friends to see Olivia Rodrigo at Madison Square Garden.

On Monday, I lay on a dock on a lake in the Adirondacks and saw a total eclipse.

Although both could be predicted to the minute—we knew Olivia would start performing at 8:32, and that the totality would begin at 3:24—there was also something wildly uncertain about the eclipse. We could not predict or control the weather, the clouds, the ways our bodies would respond, the way the light would change.

Seeing Olivia was entertaining and spectacular. It was filled with pent-up teenage girl emotion. She floated around the stadium on a crescent moon. She lay atop a bed and sang. She danced and stomped and jumped. We took dozens of photos and videos and could relive it as soon as it was over. And, if we had the time and the money, and the wherewithal, we could see essentially the same show at the next stop on the tour.

Seeing the eclipse was deeply beautiful. It was ephemeral. It was free. There was no way to capture it on film, no way to ever relive the moment. As Laurence Pevsner explains in Noema, every eclipse is different from the one before. Even the photographs taken from the highest-end camera cannot capture what a human eye sees when witnessing the moon covering the sun.

Moreover, the only reason we get total eclipses at all is because of a “complete cosmic coincidence.” Because the sun is 400 times larger than the moon AND 400 times further from the earth than the moon, when the moon passes across the sun, what we call a total eclipse happens. It’s like a tiny cosmic architectural detail, a gift of beauty and wonder and mystery and delight.

Seeing both Olivia and an eclipse within the span of a few days reminds me that I don’t want to chase the next entertaining phenomenon. I don’t need to pursue fads or keep up with trends. Watching the eclipse was like entering a thin place, a moment in time and space where heaven and earth kissed. I want to respond to the thin places, to seek out the deeper beauty. I want to live in expectation of quiet wonder that is entirely beyond my control.

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FREE RESOURCE: 5 Ways to Experience God’s LoveA Place for Extravagant BeautyHow 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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Employment in Churches for People With Disabilities

Unemployment is one of the biggest challenges faced by disabled adults. And while there are all sorts of things we as a society can (and should) do to address this challenge, I’ve also been thinking lately about how the church could lead the way in this regard.

It’s great (and not even always the reality) for disabled people to be members of churches or have volunteer roles that are significant. But what if local churches actually looked for ways to employ people with disabilities—whether that’s working in the office or working on ministry staff or in a janitorial position?

I know lots of churches who have come a long way in welcoming families affected by disability. I’m grateful for that. But I don’t know any who have done anything to address the problem of unemployment within the disability community. In fact, I know of more coffee shops and ice cream parlors than churches that are looking for ways to employ people with disabilities. 

Wouldn’t employing people with disabilities be a beautiful way to tell the rest of the world what it looks like to be the body of Christ?

More in my interview with Andrew Draper: Reimagining Church Leadership and Disability

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Training in Love

What if the hardships we face could be seen as training in love?

I’ve been reading John Mark Comer’s latest book, Practicing the Way. He mentions that there are two different groups of people who hang around Jesus in the stories we have about his time on earth. There are the crowds. And there are the disciples.

The crowds got miracles and teachings. They heard beautiful sermons and intriguing stories. They watched healings and feasted on unexpected bread and fish and wine. And then they went back to their ordinary lives.

The disciples heard the same teachings, and they witnessed the miracles, but it was different for them. They left family and friends behind to follow Jesus. Jesus didn’t just preach to them, he told them to go out and tell people about God’s presence among them. He didn’t perform miracles for them, at least not that we know of. Instead, he asked them to participate in the miraculous through service. And he didn’t send them home with a full belly and a nice message. Instead, he sent them into stormy seas, into hostile territory.

Jesus spent his time on earth teaching and healing the crowds while at the same time he was training the disciples—often through really hard experiences—so that they could do likewise. So that they could weather the storms and endure the persecutions and bear witness to truth and beauty and justice and love even amidst powerful forces that wanted to suppress them.

What if some of the hard experiences you are facing are actually training you to live in love?

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Turning 47

47 is not a milestone birthday. We didn’t have a party. I didn’t receive any extraordinary gifts. I did, however, receive a pair of the softest pajamas I’ve ever known. Our kids gave me a hairbrush-hairdryer thing that seems to work miracles. And at the last minute—due to a canceled soccer practice, due to the fact that my birthday fell on a cold, rainy, Tuesday in April—I got to share a glass of pink champagne with two dear friends.

Maybe one joy of solid middle age is taking delight in pajamas, and hairdryers, and the gifts of a rainy evening.

I have lived long enough now to have accrued a list of disappointments. Doors that have closed. Things I would do differently if I could go back. Risks I wish I had taken. Words I could have said.

But when my birthday came around, I realized that while I can name those disappointments, I am not discontented. Rather, I am filled with gratitude. Gratitude for pink tulips by the kitchen sink. Gratitude for the people around me. Gratitude that I get to write and speak and think and ask questions every day. And gratitude for a deeper and deeper awareness of Love that roots and grounds my life.

(I’m also feeling so grateful for what lies ahead, including the new things I get to try in the upcoming year. Which includes my new workshop, Reimagining Family Life with Disability. Just in case you haven’t heard about that yet!)

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Honoring Women’s Hard Choices

When it comes to prenatal testing and disability, there are two extremes. One is the thought that a prenatal diagnosis of a disability like Down syndrome (trisomy 21) or other genetic conditions like trisomy 13 or 18, which are life-threatening, should end in termination. The other—less common—is that women who choose to terminate for reasons of disability are participating in systemic discrimination.

What if having a prenatal diagnosis is just a hard choice? Hard for all sorts of reasons, including potential suffering for the child, social stigma, and lack of financial and social support. What if we honor women’s hard choices?

I’m a huge advocate for the inherent value and belovedness of every human being. And I’m a huge advocate for recognizing the hard choices women face when they encounter a prenatal diagnosis.

This week, the New York Times ran a story about two women who chose life for their babies with trisomy 18. Even there, as the Times points out, they made different choices. One chose for their son to enter into hospice care upon birth. Another chose for their little girl to receive multiple medical interventions to support life. Both loved their children well. And both said they would respect women who made different choices than they did.

I’m grateful for the Times’ willingness to highlight these two different choices. I’m grateful they included the story of the doctor who has dedicated decades in support of families like theirs. I’m grateful for these women’s compassion towards others who have made different choices. Most of all, I’m so grateful for these families and their willingness to share their stories. They help us all imagine a world in which vulnerable and beloved babies are welcomed and cared for, even when their lives will be cut short far too soon.

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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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God Loves You

God loves you.

It’s the most basic message. 

It is central to the entire Bible. 

It is central to Jesus’ teachings. 

It is central— foundational—to the New Testament. 

And yet it is not the message so many of us have heard, or believed.  

We have heard, “God loves you, but…”

Or, “God loves you if…”

But that’s not the message. The message is God loves you. Beginning. Middle. End. 

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Don’t You Care If We Drown?

“Don’t you care?” I’ve prayed that prayer more than once. In the middle of a conflict with Peter that seemed irreconcilable. In the moments when my grandmother was dying and I couldn’t get to her bedside to say goodbye. And, whether I say the words out loud or not, every time I’ve worried for our kids.

“Don’t you care if we drown?” It’s the question the disciples ask Jesus when they find him asleep in the back of a boat while they strain to cross a stormy sea in the middle of the night. This story shows up in Mark 4, and I’ve always been very sympathetic to the disciples. Why is Jesus asleep in the midst of such a harrowing experience? Doesn’t he care?

Lately I’ve wondered whether I misunderstood this whole scene.

First, before Jesus says anything to the disciples, he responds to their desperate cry. He “rebukes” the sea. I wonder whether this little moment offers us an invitation to bring our accusatory prayers to God. To pray out of a sense of abandonment and fear and anger. I love that Jesus doesn’t ask them to pray “correctly.” Even in the midst of their accusation and exasperation, Jesus responds by caring for them.

Second, I wonder whether it’s because of that very accusation that he later asks about their lack of faith. I always thought he was wondering why they didn’t have faith that he would calm the sea. But maybe he’s wondering why they don’t have faith that he cares and can do something to help. Maybe if they had woken him up with a different plea: “Jesus, help us!” he would have commended them for their faith instead.

I’m encouraged by this passage right now because it reminds me that I don’t have to come to God with perfect prayers or proper theology in order for God to respond to me with love and care. But I’m also encouraged that I don’t need to understand what God is going to do or how God works. I’m only asked to trust that God is love. That God is present. That God is always protecting, always hoping, and always working alongside us. And I’m encouraged to cry out to God, whether in accusation or in faith, and stand amazed when God does indeed show up.

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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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What Happens with Three Days Away with Your Teenager

I’ve never taken a mother-daughter trip with Marilee before. But this year over spring break, Marilee and I spent four nights together in Jamaica.

I was a little worried we would run out of things to talk about. Or that she would think I was boring. Or cringey. Or annoying.

But then we talked about family and social media and school. We sat on the beach and read books. We played tennis and swam in the ocean and both got stripes of sunburn where we somehow failed to apply enough sunscreen. We played backgammon.

We watched Erin Brockovich and episodes of Friends and laughed. We watched the sunset. I watched her growing up.

At one point, I quoted from the Lisa D’Amour book I was reading about teenage girls:

“You’re not parenting very well if your teen agrees with all the decisions you make.”

Marilee cocked her head a bit and said, “Well, then you are parenting very well.”

Sometimes parenting well looks like disagreements and boundary setting and letting them make mistakes and struggle. And sometimes it looks like climbing under the covers and laughing at Chandler Bing’s jokes and eating chocolate and learning about skin care products. And right now, for me, it feels like gratitude for these gifts that we have been given.

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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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