I received an email yesterday that left a pit in my stomach. I won’t go into all the details here yet, because I’m still hoping it was an administrative error. But the email implied Penny can only stay in her current transition program through the spring of 2027. We’ve been operating under the idea that she could remain in the program until the spring of 2028.
For all of us, the future often feels both uncertain and scary. The scary part often feels even more pronounced when the future involves a child with a disability. I’ve recently learned, for instance, that there’s a difference between a “right” and an “entitlement.” Penny has a right to an education until the age of 22. After that, she is entitled to services, but a) those services might have a long wait-list and b) she needs to prove her eligibility repeatedly for said services. It all becomes more complicated and cumbersome and involves lots of bureaucracy. More uncertain. More scary. (And more on this point in two weeks, when I interview Annie Lowrey about her book The Time Tax for Reimagining the Good Life.)
When the future looks scary, I don’t want to look at it at all. I get an email that throws my plans into the air and I want to ignore it. The questions pile up. The stories of other parents whose kids “fell off a cliff” into loneliness and languishing. The return to early days of worry and anger and fear.
And yet I have learned some things in the past twenty years. I’ve learned that a good future is actually possible, even though it often takes unexpected twists and turns. I’ve learned that facing the future—even the uncertain, scary future—with hope can lead to unexpected good.
I also just learned a new term—“futuring.” Dr. Stuart Candy, USC Berggruen Fellow and Associate Professor of Design at Carnegie Mellon University, spoke about futuring with the World Economic Forum. He said:
“The future is not just something that happens to us, it is something we have the ability to shape. And part of what is interesting is, the more people and institutions tune in, participate, and act, the truer this becomes.”
We aren’t passive participants, and yet we also need one another to enact a good vision of the future.
Futurist Susanne Forchheimer explains, “for futures thinking to be valuable it has to be grounded in present-day facts that with synthesis, sensemaking, creativity, and visualization are put into plausible, provocative stories about possible futures that resonate and inspire us to act differently today.” We tether our current reality to our hopes and dreams and—alongside other people—let those hopes and dreams orient our reality.
Penny has been working on this type of futuring, or reimagining, for years. Back when she was twelve, she articulated a dream that I couldn’t have imagined when she was first born. As a part of a person-centered planning process in middle school, she declared that she wanted to go to college and then live in an apartment with friends. We’ve been moving toward that future—with so much support and encouragement from people around us—ever since. And she has applied early to the ClemsonLIFE program, so perhaps that future will begin to be realized as early as next August. Or perhaps she’ll need to apply again in a year. Or find a different program. All I know is that these programs didn’t even exist when she was born, and their existence—even if she doesn’t get into them—helps to shape a set of possibilities for a good future for her and others.
So, I move from the dread in the pit of my stomach from that email yesterday to the reminder that we are not alone, that both institutions and individuals have moved over the course of Penny’s own lifetime, that a good future is possible even when it seems uncertain and scary. Parents like me need help to imagine a future with and for our kids that is not dictated by the problems and even nightmares of the past. We need to envision good things and enlist other people in making that vision a reality. We can all be a part of shaping and forming a good future for ourselves and our children.
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Amy Julia Becker desires to challenge assumptions about the good life, proclaim the inherent belovedness of every human being, and help us envision and build a world of belonging where everyone matters. Amy Julia invites people to reimagine the good life through her writing and speaking on disability, faith, and culture. She is the author of several books, including To Be Made Well, White Picket Fences, Small Talk, and A Good and Perfect Gift. She is a guest opinion writer for national publications and hosts two podcasts: Take the Next Step and Reimagining the Good Life. Becker is a graduate of Princeton University and Princeton Theological Seminary (MDiv). She is a member of the Disability Ministry Network and the Alliance for Disability Justice and Ethics in Reproductive Genetics. She lives with her husband and their three children in western Connecticut.
