Separating Our Worth From Our Productivity: Happy Anniversary, IDEA! By Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

What we need and what we want for our children with disabilities are often at paradoxical odds with one another. The idea of “independence” comes up a lot, particularly when we’re discussing therapies and schooling, but we do not mean in the absence of human connection. The idea of “productive member of society” comes up when we are defending the worthiness of adults with disabilities who may or may not be able to fully participate in the current job market, but we do not mean in the absence of publicly funded social networks and supports that provide equitable opportunities.

Unraveling worth from productivity is an exercise I’ve been doing recently, and let me tell you–it’s hard! 

Am I a good mom of a child being excluded if I do not advocate for inclusion? 

Am I a good mom of a child who was abused in school if I do not work to better the laws that led to her abuse in the first place? 

Am I a good mom of a child who desires access to spaces if I do not give of my own time and energy to serve as her support person in these environments?

Am I a good mom of a child without community if I do not put forth the effort to build one? 

Am I a good mom of a child who could have benefited from greater past collective advocacy if I do not participate in collective advocacy for future children and families?

The additional work that families with disabilities take on is generally predicated on the presence or absence of what came before. For example, sometimes we’re so frustrated by the status quo that we work to improve it; other times we have a solid foundation to stand on in order to build even higher. But in any case, we can’t separate our individual present from our collective past. 

Hope used her augmentative and alternative communication (AAC) device for her classroom presentation on our advocacy trip to Washington, D.C. 

From where I’m sitting, there are two groups of people among us: those who believe that educating children with disabilities is a nonnegotiable matter of human dignity, and those who see a disproportionate value between the effort and the outcome of doing so. There are nuances in each group, certainly, and 50 years ago we bridged this divide with a law called the Education for All Handicapped Children Act (EHA), updated in 1990 to the Individuals with Disabilities Education Act (IDEA), as we know it today. 

One of the lesser understood rights to being educated in the least restrictive environment can be education at your neighborhood school. Hope benefits from walking to and from school every single day.

On November 29, we will celebrate the 50th anniversary of the passage of IDEA and all of the children who were brought out of the shadows and into their classrooms, including the 4 out of 5 children with disabilities, who prior to IDEA’s passage didn’t receive any education services. For decades, parents understood the potential of their children and believed if they were simply given the chance to succeed, they would. And thank God for them, because now we have all sorts of people with disabilities to look up to. 

One of these people passed away just last week. Her name is Alice Wong, and I met her—as likely did some of those reading this today—via the Ridgewood Public Library’s webinar on October 9, 2020. (She was also joined that evening by Maysoon Zayid, born and raised in nearby Cliffside Park.) I asked a question in the chat that went something like, “What am I missing in supporting my disabled daughter, when I myself do not have a disability?” Alice’s answer was simple: Make friends with someone with a disability. 

I panicked. Why did she think I wasn’t already friends with someone with a disability? (I wasn’t, as far as I knew.) How would I find someone with a disability who could become an authentic friend? What if I was friends with someone with an invisible disability? Where does one even find a disabled friend? 

None of the answers to these questions were the point she was making, but I didn’t realize that at first. Simply by asking the question, Alice was asking me to evaluate my social circumstances: Could a disabled person live and thrive in the same town where I do? Do disabled people have access to the same spaces I do, to the point where I could organically make a friend or two simply because our interests aligned? 

We’re often asked not simply to support those who are present, but to question who is missing. Nobody at our neighborhood elementary school knew my daughter, who has Down syndrome, was missing from kindergarten until she showed up in first grade, following a long and traumatic legal due process. Once we got her into our neighborhood school for first grade, it became clear that she’d been missing all along. I have no doubt there are many incredible friends we are missing in so many spaces who have been excluded for various reasons. We mourn their absence, even if we don’t know exactly who they are. 

Hope onstage with her classmates for their second grade concert.

The IDEA has been in the news a lot this year, not because it’s being celebrated but because critical oversight by the federal government is being threatened with the proposed closing of the U.S. Department of Education. In addition, private schools are not required to follow IDEA and students with disabilities will lose their full protections when utilizing vouchers for private schools. With lots of work ahead of us to ensure continued access for people with disabilities to a free and appropriate public education, it’s important to acknowledge that one of IDEA’s shortcomings is the fact that it’s never been fully funded, which the IDEA Full Funding Act (H.R.2598/S.1277) seeks to address. 

I don’t know if my daughter will graduate with a high school diploma or if she will make a living wage and own her own home one day. But I do know that without IDEA, she wouldn’t have made it this far, and if she wasn’t here among us, she would be missed. Regardless of the path we took to get to where we are, that she is welcomed and included is a celebration all on its own. 

Hope, fully included and participating as flag holder during the Pledge of Allegiance.

What am I watching? 

“Down for Love” aired in 2023, so I’m a little behind, but I watched the first episode this week and the show is amazing. This is a 5-episode series that follows people in New Zealand with Down syndrome who are exploring the dating scene for the first time. I feared it would be voyeuristic, but it’s wonderful! The language is appropriate. The families are supportive and lovely. I can’t recommend it enough!

What am I listening to?

I was thrilled to hear that psychologist Karyn Harvey, PhD, was on The Lucky Few Podcast this week. Mental health support for people with intellectual and developmental disabilities is atrocious, and Dr. Harvey works tirelessly to give people with disabilities the language they need to seek support, while also providing therapists the tools and encouragement they need to support this underserved population. Episode 317, “Trauma and Intellectual Disability,” can be found here. You can also find more of Dr. Harvey on Episode 16 of The DIVERG. Podcast, “Disability Isn’t the Problem—Trauma Is: Dignity, Disability, and Trauma-Informed Practices.”

What am I reading? 

Besides all of the posts on GiGi’s Playhouse North Jersey? (Shameless plug!) With Alice Wong’s passing, Disability Visibility: First-Person Stories from the Twenty-First Century, edited by Alice Wong, came back into focus. Many of these stories are tough to read, but they’re real and they need to be known. We’ve marginalized many of our most vulnerable neighbors, and until we understand their stories, we cannot consider ourselves a whole and healthy society.

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.