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The Beautiful Thing About Offering Attention

October is Down Syndrome Awareness Month. According to the dictionary, awareness is “knowledge or perception of a situation or a fact.” Nearly two decades into this journey, I’m still raising my own awareness about Down syndrome. I recently learned, for example, that the divorce rate for parents of children with Down syndrome is lower than that of the general population. And I learned that there’s a really large range of time when it is considered normal for kids with Down syndrome to meet developmental milestones.

Awareness can mean gaining knowledge. It can also mean action. Action can look like political pressure. Or it can look like education, whether that’s making sure schoolchildren understand something about Down syndrome or hosting medical and nursing students to give them a wider social context for this condition they might otherwise only know through a textbook.

But awareness isn’t just about information and action. It’s also about paying attention.Photo by Cloe Poisson

 

People with Down syndrome are easily overlooked or ignored. Penny experiences this regularly, when someone meets her and then promptly turns to me rather than assuming she can engage in conversation. She, like most of her peers with Down syndrome, is short and has small facial features and big round cheeks. She looks younger than she is, which again can lead others to ignore her or treat her dismissively. Even at our own dinner table, the rest of the family needs to consciously pause to welcome Penny’s perspective. She takes her time processing the world. Her responses come more slowly, which means they often get left behind.

Penny, and everyone else with Down syndrome, deserves attention for her own sake. The beautiful thing about offering attention, however, is that the act of attending to people who are easily overlooked can be transformative for all of us.

For me, paying attention to our daughter with Down syndrome for 18 years now has reshaped the way I see myself, see others, and see the world. She has invited me not only to see differently, but to be in this world differently.

To move from treating relationships as transactions to receiving them as gifts.

To move from individualism to community.

From jealousy and judgment to compassion and celebration.

From proving myself to being myself. From using others to caring for others.

It has been a gift to me to become aware of the fullness of life—in all its beauty and brokenness—for people with Down syndrome.

Down Syndrome Awareness Month might sound like a marketing gimmick. It’s really an invitation to reorient our lives around love.

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MORE WITH AMY JULIA:

Down Syndrome Awareness Month 2024S8 E2 | What’s Normal? The Anthropology of Disability with Tom Pearson, PhDWorkshop: Reimagining Family Life with DisabilityFree Resource:  Missing Out on Beautiful: Growing Up With a Child With Down Syndrome

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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The Problem with Calling Kamala Harris “Mentally Disabled”

Former president Donald Trump recently insulted President Biden and Vice President Kamala Harris by calling them “mentally impaired” and then “mentally disabled.” (more from CNN here and FOX NEWS Radio here)

I’m someone who has come to really value the contributions and presence of people with intellectual disabilities, so why do I see these comments as problematic?

There is no shame in having an intellectual disability. People with intellectual disabilities have inherent value and should be received and celebrated in and of themselves.

The problem lies in the attempt to use the words “mentally disabled” as an insult.

When we use intellectual ability or disability as a way to separate good people from bad people, worthy from unworthy, important from unimportant, we dehumanize people with intellectual disabilities. We set up a hierarchy. We perpetuate a lie that intellectually disabled humans are not fully human. We mock and demean people who are vulnerable and worthy of honor.

In a healthy democracy, it’s a good thing to disagree about policy. It’s a good thing to debate different approaches. But it is never a good thing to tear each other down, to mock and belittle, or to set up a system in which some people are more valuable than others.

 

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MORE WITH AMY JULIA:

Changing the Social Imagination (one photo at a time)Gus Walz and the Significance of BelongingHow Politicians Talk About Disability Matters

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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Down Syndrome Awareness Month 2024

Today is the beginning of Down Syndrome Awareness Month.

In a world of distraction, I’m thinking about what happens when we pay attention to the beauty and hardship and possibility and struggle embodied in the global population of people with Down syndrome.

I’ve paid attention to our daughter with Down syndrome for 18 years now. Little did I know how much she would shape the way I see myself, see others, and see the world. Little did I know how much she would invite me not only to see differently, but to be in this world differently. To move from treating relationships as transactions to receiving them as gifts. To move from individualism to community. From jealousy and judgment to compassion and celebration. From proving myself to being myself. From using others to caring for others.

Down Syndrome Awareness Month might sound like a marketing gimmick. It’s really an invitation to reorient our lives around love.

Photo by Cloe Poisson

MORE WITH AMY JULIA:

Workshop: Reimagining Family Life with DisabilityFREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)Book: A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny

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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Questions Every College Freshman Should Ask | Penny in Her Own Words

Questions from Penny that every college freshman needs to ask:

Are there any students who know the campus, and is their role a mentor?

Are there any school activities or gatherings that are most important to the university?

What are the most popular job sites on campus?

 

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Two questions from Penny that every first-time college student should ask…Managing my time Is a struggle.How would I get help with that?Who would you recommend I go to if I needed advice on anything?

 

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MORE WITH AMY JULIA:

More of Penny in her own wordsWorkshop: Reimagining Family Life with DisabilityFREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)

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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September Favorites {2024}

Favorites from September 2024:

Cultures of Growth by Mary C. Murphy.

For anyone interested in how the idea of “fixed” and “growth” mindsets affect communities (and not just individuals), this book is a fascinating read with implications for personal and institutional life.

The Storied Life of A. J. Fikry by Gabrielle Zevin.

I couldn’t sleep the other night, so I downloaded this book on Kindle and raced through half of it. The good news was, I really love the characters and the story. It’s charming and winsome and sad and sweet, and most of it takes place in a bookstore. The bad news is that it was far too interesting to put me to sleep!

Genesis by Walter Brueggemann.

Okay, I don’t usually recommend books that only Bible nerds like me might like, but I have to mention this one. I love the way Brueggemann takes the Hebrew text seriously and integrates his Christian faith into his reading of it. For anyone who wants a deep dive into Genesis, start here!

Wildcat.

I also finally had a chance to watch Wildcat, Ethan Hawke’s film about Flannery O’Connor. It was weird and arresting and challenging and contained everything I love (and also kind of hate) about O’Connor’s writing. If you want to challenge your assumptions about the good life, this film is a great place to start!

Daughters documentary.

This film follows a group of girls and their dads—the dads are all imprisoned—and their reunion at a father/daughter dance within the prison walls. This story underlines the terrible injustices of our prison system, even as it offers a beautiful story of love and hope.

What a Blind Photographer Saw at the Paralympics.

I loved reading about how a blind photographer is not a contradiction in terms.

Simple Steps to Combat Smartphone Addiction

“Small habits begat other small habits.”

I loved this essay from Tara Isabella Burton about breaking her smartphone addiction and all the freedoms it opened up for her.

Malcolm Gladwell: How I Rediscovered Faith.

I loved Malcolm Gladwell’s story about his return to Christian faith and how it hinged on ordinary people who believed that God is actually powerful and therefore were able to do the extraordinary work of forgiveness and compassion, come what may.

The Esau McCaulley Podcast.

I’m always eager to read whatever Esau McCaulley writes, so I’m equally excited to hear his thoughts on his new podcast!

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MORE WITH AMY JULIA:

Favorites and AJB Recommends

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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Saying Goodbye to Our Church

Before I write anything else, I do want to thank those of you who have decided, voluntarily, to support the work I do through a paid subscription to this newsletter. Not only does it help me pay the bills associated with working on the words I offer here, but it also comes as a tremendous encouragement to me personally. Thank you!

Surprised by Tears

On Sunday, we said goodbye to our church. We have finally moved into our new home, half an hour away, and it is time for us to root ourselves within a new local church. When we stood in front of our old congregation to receive their prayers of blessing and consecration, I expected to feel sad. I did not expect to weep with grief and gratitude and wonder at the gift of this spiritual home for the past twelve years of our family’s life. But all five of us gathered in front of the congregation, and the tears rolled down our cheeks. Afterwards, I felt as if I had run a half marathon. Exhausted. Good. Grateful.

As I’ve written about before, this church is a very ordinary church. Usually, a handful of kids show up for Sunday school and even fewer than that for youth group. Our attempts at contemporary worship generally fall short. The sound system sputters with some regularity. We often run a deficit. The church is comprised mostly of middle-aged to elderly New Englanders. We keep our feelings in check. We sing hymns. We bake casseroles. We listen politely but unexpressively to the sermon.

But this church is also filled with people who show up for each other. And who pray for our kids. And who make the Christmas pageant happen. And who have a deep—if quiet—desire to know and love God.

Peter and I started a Bible study sometime shortly after we joined the congregation. Over the past decade, we’ve hosted dozens of people, from a 22-year-old migrant farmer to an 82-year-old widow and everyone in between. The majority of the people who have attended have never read the Bible independently before. So it might look like a place where I, with my seminary degree and regular habits of nerdy personal Bible study, have a lot to offer. I have offered what I can, but I have also never learned so much from any group of people.

In the past two years, an elderly man has joined us religiously. He told us once that he was called dumb by his teachers when he was in school, so he didn’t expect to have anything to contribute to our group. But he started to share his thoughts. He noticed Jesus’ leadership and humility. He talked about simplicity and the peace that comes from sitting still. He started reading the Bible on his own at night, and each week he would tell us a little bit more about this unfolding story. His presence opened us all up to the gentle, simple, peaceful way of the Spirit of God.

It was sweet to hear all the kind words that members of our congregation said about us on Sunday. But once I had collected myself enough to speak, I told them the truth—that we had gained more than we had ever given. That we knew Penny could always sit wherever she wanted in the sanctuary and be welcomed. That the 80-somethings would care deeply about how William’s first year away at school went and that the pastor would never shame us for missing church for Marilee’s soccer games. We knew that each one of us belonged. That we all had ways to give. That we all had so much to receive.

Outside of the doors of our church, it would be easy to think of our family as impressive or prestigious or the ones who have a lot to offer. Peter runs a school with lots of accolades. We graduated from fancy colleges and have masters degrees. I get to write things for national publications and speak around the country. But the gift of our church was that we got to offer our gifts without those gifts being put on a pedestal, without them becoming status symbols or power plays. We got to give and receive in a place where the Bible scholar learned from the engineer who had never read the Bible before, where people whom I might once have dismissed or disdained became friends, where the person who talks too much then prays the prayer that sinks the deepest words of blessing and truth into our souls.

We can’t really explain the mutuality other than to say that’s just the way God works. Everyone matters. Everyone is lifted up.

And so we wept. And laughed. And ate mac and cheese and biscuits and brownies in a potluck lunch after the service.

The next day, I received a text from the pastor of our new church. He asked if Penny would like to read Scripture for the congregation one Sunday. I suspect we are heading into another place where unexpected blessing abounds amidst ordinary people coming together to follow a God of extraordinary, steadfast love.

Get my reflections on disability, faith, and culture delivered to your inbox each week.
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MORE WITH AMY JULIA:

Employment in Churches for People With DisabilitiesRNS | Why do I still go to church?S7 E 12 | Reimagining Church Leadership and Disability with Andrew Draper

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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Penny’s First Year of College Three Weeks In

After three weeks of college, here’s how Penny thinks it’s going (scroll down for her video)!

How was your first week of college?!?

The first week of college was both inspiring and hard to figure out where to go on campus.

Can you describe two different feelings you had this week and describe the situation where those feelings came up?

My first week of college I was feeling excited because the classes are helping me achieve my first semester goal. I also was feeling confused on where some of the classes would take place.

What does a typical day look like for you?

Van picks me up around 7:30
Meet In Skye’s room around 8
Head to breakfast
Either head back to Skye’s room or to first class

Can you describe Post’s campus?

Post’s campus Is more spread out than Shepaug.
You also sometimes have to transfer to different buildings
Post campus has beautiful greenery and seems to love nature
The classrooms are not small but not large

What was the most challenging part of your week?

Trying to locate the different classes In the different buildings.

What was the easiest part of your week?

Everywhere I looked I saw a familiar face.

Have you met any people who you think would be potential friends?

So far, yes

What are you looking forward to next week?

I am looking forward to choosing a topic for my APA assignment.

What was the best part of this week? How about the worst?

The best part of the first week has to be getting two assignments done and submitted. IDK about the worst.

Did you learn anything about yourself this week?

Yes
I have learned that I want to study Communications and my Communications class has made that goal easier to accomplish.

What are you looking forward to this semester?

This semester I am looking forward to setting some new goals for myself academically.

What are you looking forward to in the future?

In the future I am looking forward to living with friends.

 

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MORE WITH AMY JULIA:

More of Penny in her own wordsWorkshop: Reimagining Family Life with DisabilityFREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)

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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Changing the Social Imagination (one photo at a time)

The images that I saw of people with Down syndrome when our daughter Penny was born 18 years ago were largely black and white, grainy, medical images. They shaped an imagination for me, and lots of people, about what was possible for people with Down syndrome. These photos implied that people with Down syndrome were sickly and not very interesting, literally not colorful.

Over time, with the advent of social media and with greater acceptance of people with disabilities in our society, we have different images. We get images on Instagram of families who have family members with Down syndrome who are just enjoying their regular everyday lives. We go into a Target and see children with Down syndrome featured in large, Target-branded photos (see below for photos I took on our recent shopping trip), or we got into Sephora and see a large photo ad of a mom with her daughter who has Down syndrome.

What we see begins to shape our imagination about what’s possible. And that’s true not only for families like ours who have children with Down syndrome, but it’s also true for the whole public imagination about what is possible for children and young adults and adults with Down syndrome.

I am grateful that our images of Down syndrome have changed over time, and I hope they play a role in changing our social imagination about what is possible.

 

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MORE WITH AMY JULIA

Our Story: Down Syndrome, Identity, and LoveGus Walz and the Significance of BelongingWe can build a culture of belonging — one that includes people with disabilities

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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2 Good Books, an Essay, and an Introduction to Season 8

I love taking a break from all sorts of things in the summer, and I also love returning to the rhythms of the fall. I’m especially excited to return to the podcast and tell you all about what we have in store.

As some of you might remember, we changed the name of the podcast last year to Reimagining the Good Life. That renaming has helped shape the list of guests we are inviting on the show in upcoming months. Each of these guests can help us think about the question:

Where do our ideas of “the good life” come from, what might be problematic about those ideas, and how we can envision something different?

My hope for the work I do, and for this show, is that we would:

Challenge the assumptions about what makes life goodProclaim the inherent belovedness of every human beingAnd envision a world of belongingWhere everyone matters

Now, not every guest is going to speak to all of those things. As many of you know, I write and teach and interview people about disability and faith and culture and how those things intersect.

Disability

So sometimes the disability aspect is front and center. To that end, this season I’ll talk with two different college professors who have daughters with Down syndrome. There’s Tom Pearson, who wrote An Ordinary Future about the history of anthropology as it relates to people with Down syndrome and intellectual disability. And Pepper Stetler, an art historian who has written in A Measure of Intelligence about her daughter Louisa and the history of the IQ test and how it speaks to our culture’s understanding of intelligence. 

Faith and Culture

Other times faith and/or culture take the lead. I’ll talk with pastor and author Rich Villodas, whose latest book, The Narrow Path, uses Jesus’ Sermon on the Mount to reimagine the good life. And I’m excited to hear from Dr. Jemar Tisby, whose book The Spirit of Justice came out this week, about how our understanding of history—and specifically the historical witness of Black Christians—can help us reimagine our future. 

These are just a few of the rich conversations that I am thrilled to get to share with you in the weeks and months ahead.

Subscribe today!

Find “Reimagining the Good Life” on Apple, Spotify, YouTube, Stitcher, or wherever you listen to podcasts. Subscribe (and rate and review)! You’ll get new episodes every two weeks. My first conversation drops on Tuesday, September 10.

I hope you’ll join me for beautiful, deepening conversations. Let’s reimagine the good life together.

Cognoscenti Essay:We can build a culture of belonging — one that includes people with disabilities

“If there is anything we have learned through parenting our three kids, it is that disability is like a magnifying glass that shows us more clearly who we all are as humans. We often see Penny’s limitations more clearly than we see our own, and yet she helps us to understand that we all have limits. We all have needs. Once we can admit those limits, we can ask for help from one another. Once we recognize our needs, we can receive the gifts that others have to offer. We can become more connected, more humble, and more able to celebrate one another. We don’t need to paper over the real challenges that come with Down syndrome or autism or learning disorders. We do need to recognize the fullness of the humanity of people with disabilities in order to imagine not only the ways they might need support, but also the ways they might contribute to our society.”

2 books I love right now Cultures of Growth by Mary C. Murphy .

For anyone interested in how the idea of “fixed” and “growth” mindsets affect communities (and not just individuals), this book is a fascinating read with implications for personal and institutional life.

The Storied Life of A. J. Fikry by Gabrielle Zevin.

I couldn’t sleep the other night, so I downloaded this book on Kindle and raced through half of it. The good news was, I really love the characters and the story. It’s charming and winsome and sad and sweet, and most of it takes place in a bookstore. The bad news is that it was far too interesting to put me to sleep!

Get my favorites delivered to your inbox each month!
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MORE WITH AMY JULIA:

Favorites and AJB Recommends

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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Introducing Season 8 of Reimagining the Good Life

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How do we envision the good life in a way that is hopeful and human and freeing and good?

My name is Amy Julia Becker. I help people reimagine the good life through my writing and speaking on disability, faith, and culture.

My hope for the work I do, and for this show, is that we would:

–Challenge the assumptions about what makes life good
–Proclaim the inherent belovedness of every human being
–And envision a world of belonging
–Where everyone matters

Discover captivating conversations with leading authors, professors, and experts who delve into what it truly means to be human and what makes life good. If you’re ready to explore helpful, beautiful perspectives on belonging and belovedness and mattering, now is the perfect time to join.

Subscribe today to catch new episodes every other week, beginning September 10. Let’s reimagine the good life together.

Mark your calendar, and make sure you’re subscribed. You won’t want to miss this.

REIMAGINING THE GOOD LIFE is available wherever you get your podcasts.

Also, check out my live, online WORKSHOP: Reimagining Family Life with Disability. Use code FAMILY24 to take 30% off registration! It begins September 18th!

YouTube Channel: video with closed captions

Let’s Reimagine the Good Life together. Find out more at amyjuliabecker.com.

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Note: This transcript is autogenerated using speech recognition software and does contain errors. Please check the corresponding audio before quoting in print.

Hi friends, it’s been a few months since we’ve been here together. I do love taking a break from all sorts of things in the summer, but I also love returning to the rhythms of fall. So I am excited to be here and to return to this podcast and tell you more about what we have in store for the next couple of months. Some of you might remember that we changed the name of this podcast last year and it is now called Reimagining the Good Life.

That renaming process was really helpful in considering what guests we wanted to invite on the show this season, because we wanted to find guests who can help us think about where our ideas of the good life come from. The good life is a concept in philosophy, but it’s also just a set of assumptions that we have about what we want in our lives. And sometimes those ideas are problematic and they don’t actually lead to exactly what we want them to. So when those ideas are problematic, what can we do

to envision something different, to live into something that is more hopeful and human and freeing and good? When we’re here together, my hope for the work that this show is doing in the world is I wanna challenge the assumptions about what makes life good. I’m gonna say that again.

My hope for the work that I do and for this show more broadly is that we would challenge the assumptions about what makes life good, proclaim the inherent belovedness of every human being, and envision a world of belonging where everyone matters. Not every guest is going to speak to all of those things, as many of you who are listening know I write and teach and interview people about all sorts of topics, disability and faith and culture

and how those things intersect. Sometimes the disability aspect is front and center, and that will be true with some of the interviews this season. I’ve got two different college professors who both have daughters with Down syndrome. There’s Tom Pearson, who wrote a wonderful book, An Ordinary Future, about the history of anthropology as it relates to people with Down syndrome and intellectual disability. Also going to get to interview Pepper Stetler an art historian who has written about her daughter, Louisa.

Amy Julia (02:12.876)

and the history of the IQ test and how it speaks to our culture’s understanding of intelligence. There are going to be other times where faith or culture take the lead in what we’re talking about. And to that end, I’m going to get to have a conversation with pastor and author Rich Villodas. His latest book, The Narrow Path, uses Jesus’s Sermon on the Mount to reimagine the good life. I’m also excited to hear from Dr. Jamar Tisby about how our understanding of history

and specifically the historical witness of Black Christians can help us reimagine our future as a nation. These are just a few of the rich conversations I am thrilled to share with you in the weeks and months ahead. The first episode of this season will drop next week on September 10th. Meanwhile, right now is the time to let other people know about this podcast. You can share this trailer with them, leave a rating or review, just a simple click of a button on the rating or a

simple sentence that says why this podcast has been meaningful to you helps people to find it. If you have not already subscribed, you can also subscribe now, get new content every two weeks, and not miss an episode. Finally, I do want to let you know about my upcoming workshop, Reimagining Family Life with Disability. So this is a workshop designed to help families affected by disability envision and work towards a good future. I am

teaching this live online beginning on September 18th, 2024. Registration is now open. And I’ve taught this once before and the previous participants were able to say that this workshop gave them a new mindset towards disability, a larger network of support and care, and a plan for taking manageable steps towards a good future. I would love for you or a friend of yours

who could benefit from this type of conversation to envision and work towards a good future for your family. So register today, use the code FAMILY24, that’s F -A -M -I -L -Y and then the numerals 2 4 to take 30% off your registration. And please tell your friends, I would love to have people who can join us for this conversation.

Amy Julia (04:34.104)

You can find out more in the show notes or at amyjuliabecker.com/workshop. As we head into this new podcast season, I also would love to hear from you. So please feel free to click the link in the show notes. You can text me comments and suggestions, questions, ideas. I would love to hear from you. Finally, I want to thank Jake Hanson for editing this podcast and Amber Beery, my social media coordinator for doing everything to make sure that

all the behind the scenes work happens. And thank you, thank you for being here. I hope you will join me for beautiful, challenging, deep conversations that will help you to challenge assumptions about the good life, proclaim the belovedness of every human being, and envision a world of belonging where everyone matters. Let’s reimagine the good life together.

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Learn more with Amy Julia:

WORKSHOP: Reimagining Family Life with DisabilityFREE RESOURCE: 10 Way to Move Toward a Good Future (especially for families affected by disability)

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.

The post Introducing Season 8 of Reimagining the Good Life appeared first on Amy Julia Becker.