It took some time to notice, but both Sam and I agree the pandemic made our lives a little smaller.
Don’t get me wrong. There were things we did, things we neglected, routines we filled, habits we clung to, all that needed to change. And we stopped being busy for busy’s sake (what was that about?)
But ‘opting out’ also sets its own traps. A certain brittleness can settle in. We needed to stretch.
We’ve gone on cycling trips to help with that. Acadia National Park in 2021. Lake Champlain in 2022. But this year, we felt like we needed to nudge in another direction. After we were invited to a wedding in Phoenix, I got out the maps and started studying road trips. After all, Phoenix is just a few hours from California. As a good friend says, it’s just “map math.”
But I wasn’t planning a grand tour. This trip could reconnect us to our family’s origin story. Sam and his brother and sister were all born in Sacramento. Their father was principal tuba of the Sacramento Symphony until it went bankrupt. We lived there until Sam was 5 years old.
A road trip could help Sam see that he was a Californian and still belonged, if he wanted that option. We took the kids to California several times on summer trips. Sam went back to visit once on his own (his godparents live in Stockton) when he was in his 20s. But visiting a place for fun is different than visiting with an eye toward making a life there.
Many of us don’t always feel we have options and sometimes this seems more so for Sam. We planned this trip to explore his options,. The company he works for has a similar facility in Modesto. Touring the Modesto location could help him think about his future in new ways.
We had all the fun we could stay awake for in Phoenix, and headed out the next day. We took a nice, leisurely detour through Joshua Tree National Park (amazing!) and spent the night nearby.
Then the next day we headed to Modesto, stopping in Fresno. I suggested a stop at an underground garden. I thought it would be a world’s-largest-ball-of-twine-roadside-attraction type of stop, but it turned out to be a national landmark and completely charming.
The next day, we toured the Modesto facility and wouldn’t you know, Sam already knew some of the people working there. They didn’t have any openings right then, but that’s not how Sam thinks things through anyways.
In the month since, though, I’ve heard him say many, many times, “I have options now, Mom.”
Never, ever underestimate the power of a road trip.
Late last week, walking with Fang, we came upon a red-shouldered hawk that had just made a kill near Rayzor Ranch Park. She was standing in a field with the varmint in her talons. The varmint seemed a little too silky brown and big to be a rabbit. There are a few jackrabbits in what is left of the old Rayzor Ranch. Or it could’ve been a nutria from the nearby retention pond.
I have seen this a few times before, this waiting after a kill. Once, a hawk had landed on a rat running in our postage stamp of a backyard in California. We watched through the dining room window as the hawk waited patiently until it was safe to fly off with her prey.
But this time, a scissor tail from the park decided there was no room in the new ‘hood for a hawk. I watched in wonder as the scissor tail dove for the hawk’s back, triggering the raptor to drop its prey and lift off. The scissor tail rode on that hawk’s back for a few hundred yards before veering off and back to the park.
I knew why she was doing that. A few days before, we were walking to that park (Fang likes Rayzor Ranch Park a lot.) At one point, I was almost face to face with a pair of scissor tails fledging their young — three little guys who didn’t have their scissor feathers yet, but were flying pretty well. They had just regrouped in one of the younger trees in the park, so they were barely hidden. The parents had tucked wings and tail feathers around them, as they all wiggled and peeped and got ready to fly again. We caught up with them a second time not far away, all three fledglings perched on a fence, side by side, peeping and wiggling and trying to decide whether Fang and I warranted another flight attempt as their parents flew overhead.
The sight of it all triggered a fast rewind in my brain, other times we’ve stumbled on fledging as we’ve walked. Once in a neighborhood to the east, a fledgling raptor had to be nearby–although I never saw it–because a Mississippi kite grazed me three times until we finally went around a corner. (I was so glad to be wearing a sturdy hat.)
Another time, I saw a pair of mourning doves standing unusually close to one another, perched on the next-door neighbor’s roof. I looked around and saw the fledgling in the gutter. The little guy wasn’t going to make it. I scooped up its body the next day.
Another time I didn’t see the fledgling until just after Fang spotted it hopping in the leaf litter beneath the oaks in McKenna Park. First the momma robin dove at Fang, and then the poppa. Fang immediately lost interest in the fledgling and was already crying uncle. But a call went out anyways and within seconds, every robin in the park was diving at the two of us, like a Hitchcock horror movie.
I got curious about how much scientists know about fledging and bird behavior. We don’t know a whole lot. I found a research study from 2018. This study suggested to researchers that fledging is negotiated between the young and the parents, with different species tolerating longer stays than others. Young birds that leave before they can fly very well have a higher mortality rate, of course. The scissor tails certainly had to fledge before their tails got too long, as my own mother adeptly noted. But the young that stay too long risk discovery by predators who bring jeopardy to the entire nest, parents included.
I’m not sure how well we humans do at fledging. Actually, in terms of survival of the human race, rather poorly, I think. We understand child development a little better than adult development. New research suggests a stage of emerging adulthood that warrants our closer attention. And, as most of us disability parents will tell you, fledging a child with a disability is tough. We have organized our culture in ways that discourage cooperation and care for one another, unless doing it for money. Can you imagine being like a robin and joining the entire flock to defend someone else’s child? We are too fond of gaming the economic rules so that one group or another gains an edge, instead of raising all boats. We do this change-up so often that it’s hard even for kids without disabilities to launch.
Maybe there’s a reason we know we are doomed. Maybe there are lessons from nature. Before it’s too late.
To help promote the new book, I’ve been pitching op-ed pieces to newspapers. It’s interesting to be on the other side of the pitch. It also makes me miss Mike Trimble, my old friend who was the Denton Record-Chronicle‘s prize-winning opinion page editor, even more. I just miss him too much to imagine what he would say about my writing, but I try. After a few missed pitches, I asked more writing friends for feedback and that seemed to make a difference. The San Antonio Express-News recently published this piece on “restraints” which could see reforms from the Texas Legislature this year.
I think Mike would agree that the word “restraint” is a horrible euphemism for the things that Texas school and institutional personnel can do to a person with a disability in crisis, or simply to make them more easy to manage. Actions that, if a parent took them, would likely trigger an abuse investigation.
I was a little disappointed that the San Antonio editors cut so much of my original text, including the key phrase, ‘restraints destroy relationships.’ I guess it’s too scary.
Here is the full text:
When a parent first learns their child has autism, you can almost see the worry lines etch their face in real time. Their road ahead has changed. They need a new map. They will also need an experienced guide or two.
And those worry lines will deepen fast if they live in Texas, where school officials can still restrain children in ways that parents cannot, where there are caps on insurance coverage, and where the waiting list for adult services lasts for decades.
As with anyone, an autism family can thrive depending on how well the community responds.
A few generations ago, doctors told parents to send their child with autism to an institution and never look back. Today we know that autistic children can learn. New scientific knowledge and therapeutic practices are helping children learn to eat, talk, use the toilet, and master other life-changing skills. In addition, the first generations of children who benefitted from that new knowledge and practice are adults now. Some say that the early intervention changed the possibilities for their life—doing meaningful work, raising their own families, participating in community life. That was certainly the case for our family.
Other autistic adults say that their individual treatment program was abusive and traumatic. We are learning that some practices can be harmful, particularly those that focus on getting a child to comply with social ideals. This nature-and-nurture debate can be confusing for families new to the diagnosis. Parents want to raise their child as best they can, and for many autism families, the responsibilities don’t end in adulthood. Our society has built-in expectations and vulnerabilities that can create more frustration than support. The way each of us responds to an autistic individual can hinder the possibilities for their life—no different from the effects of buildings without ramps, movies without captions, or busy intersections without audio cues. It’s on us, as a society, to recognize that autism comes with its own gifts and strengths, and to respond accordingly.
How can we do that? It turns out that the basic principles for creating a healthy community still apply: by learning, connecting and loving.
Learning is fundamental to raising any child, but takes on special meaning for everyone involved in an autistic child’s life. Our learning begins not just with understanding each child but also understanding the science of learning itself—something our society often does poorly. Science tends to be a slow, deliberative process. Science doesn’t offer fixed answers to problems, in part because change and experimentation are fundamental to science. The same is true for human thriving, especially for children. We all need room to grow, change and develop.
Connecting to one another can make a difference, too. We connect when we respond to one another in meaningful ways and make sure that everyone, including each child, has agreed to whatever work we are doing together. This also means we have a duty to watch for poor conditions and change them. For example, Texas must change the conditions—and the laws—that allow preschoolers with autism to be strapped to chairs for their school day or a young autistic child in crisis to be placed in handcuffs. Research tells us that we don’t need to restrain children for them to learn. Moreover, the way we connect and respond to children, especially vulnerable children, has profound meaning. Restraints destroy relationships.
With love as their superpower, parents can meet their responsibilities to their children, even when those responsibilities are formidable. We can create the same animating force in a healthy society when we champion every child’s agency and ways to include them in the entire community. When we step up to serve as collaborators, scouts or vanguards for the families around us, we help our entire community make progress.
We humans need both science and inspiration to create the possibilities for our long-term well-being. When we all keep learning, connecting, and loving, we can build a sturdy, sustainable community filled with places and paths for every member of our community, no matter their gifts and strengths.
It’s New Year’s resolution time!
For the past five years, I’ve tried to make resolutions that are more meaningful. Whether it was saying “no” to buying things or “yes” to new challenges, or remembering that a solution already exists, those kind of resolutions brought more options and opportunities with them.
This year, for some reason, I had a hard time finding a new and meaningful pledge. To help, I read one story that suggested using a motivational word, like “breathe” or “focus” or “gratitude.” I liked the spirit of that suggestion, but wondered if a single word mantra could fall short of being meaningful.
Then, a couple things happened.
First, lightning struck a tree out front.
We were home when it happened, but we were in the back. We thought the lightning had struck a nearby transformer. We didn’t see the ball of fire that our neighbor did.
Still, we’d noticed that we’d lost our internet connection and the stereo was off. After our neighbor knocked on the front door, we saw the tree. At that point, we realized that we had a rolling disaster on our hands.
Sam spent hours troubleshooting. We brainstormed until we isolated all the things we had to fix, developed a working theory of what happened so we knew what else might be at risk, and decided what electric items were probably ok.
Based on the damage to the internet routers, we were a little scared until we could rule out a slow burn in the attic. We were grateful that–thanks to last year’s resolution to be prepared and resilient–most electrics had surge protection and had survived the strike, as did the surge protectors themselves.
Second, we took Sam’s Chevy Bolt on a long trip for the first time last weekend, from Denton to Austin and back. This was the first time to feel what EV owners call “range anxiety.” We discovered that the car’s information system was perfectly capable of predicting how many miles were left on the batteries. But we did worry whether the charging stations, which are few and far between, would be available and operational.
The trip went fine. The charging cost less than $8 on the way down, and was free on the way back. We had lunch during one charge and the fellow at the deli counter had SO many questions. Clearly, he was wondering whether driving an EV was an option for him. We answered all that we could but we were still learning, too, to which the deli guy summed, with so much wisdom, “It’s new.”
That’s was kind of an “aha” moment. We can’t always choose the moments that the world wants to teach something, and it does little good to close the door to those learning opportunities. I get grumpy solving problems that I’ve solved before; life is hard enough as it is. I don’t want to think about how appliances work. Yet, there was real power in learning how everything in our house worked. Driving to Austin is hard. Why make it harder by driving an EV? Yet, the car was quiet and a dream to drive. The charging breaks made the trip longer, but far less exhausting.
Hey, 2023. We will keep learning wherever the opportunity knocks.
Shahla and I had a book signing a week ago. Donna Fielder, a wildly successful Denton author, encouraged me to talk to the owners of the newest book store in town, Patchouli Joe’s, to see whether they were interested in hosting an event for us like they did for her. It took a while for me to screw up the courage, but once I did, they were as gracious as Donna described.
Shahla and I didn’t know quite what to expect, but we prepared for the gamut, from doing a formal reading before a crowd of strangers to sitting quietly in the hopes that at least one or two book buyers stopped by. Turned out, many friends and family came and we had a different kind of crowd. Suddenly, a formal reading didn’t seem right, so I asked if anyone had questions. We were off and running. After about an hour, we were getting tired, so Shahla deftly ended the Q&A. A few people lined up to get books signed, but most lingered, browsing the shelves and chatting with each other.
Up until then, Sam had been sitting behind us in a comfy wing chair. When he recognized that it was mix-and-mingle time, he popped up from the chair and started walking around the store, introducing himself and chatting with people. I couldn’t help but smile. That afternoon, Sam was doing much better than I was in being a social butterfly.
Here’s why. Years ago, he joined a local dance club. He learned Eastern swing dance steps, met lots of new friends, and waited patiently for women to ask him to dance. He was out in the community in this highly social way at least once, usually twice, a month. As the pandemic has waned, the dance club is slowly rebooting and he’s been out dancing again. He’s enjoying the return of social sparkles.
When Sam was little and learning to imitate and to talk, I thought we were going to have to break down all kinds of skills into incremental steps in order for him to learn. But once he learned to talk and to imitate, that elevated his ability to “learn to learn.” Suddenly, we didn’t have to break things down anymore. I never fully understood that phenomenon until Shahla explained behavioral cusps: once a person masters a skill or environment, that often leads to picking up other kinds of skills and expanding opportunities. Sam absorbed a variety of social skills while learning to dance.
Not everyone is the same. For example, I’m not sure that joining a dance club would boost my introverted ways. But, finding and achieving a cusp is something powerful to think about when you feel stuck. We touch on this concept several times in the book. Working toward a behavioral cusp can help us achieve progress and sustainability in our parenting. We all learn this way our whole lives–it’s one of humanity’s super powers.
Joy gives us wings! ― Abdul-Baha
Review copies of the new book I co-wrote with Shahla arrived on Saturday. It’s such a pretty little thing. All that warmth and wisdom on the cover is on the inside, too. And so is some really smart science. The release date is April 2. You can pre-order here.
A while back, the publisher shared an excerpt on their blog. I’ve included it below, editor’s note and all. It’s from Part Three: The Power of Loving. And it’s called Joy.
Editor’s note: Autism Awareness month is becoming a call to action from the autism and neurodivergent communities for change from the rest of society. In this edited excerpt from their upcoming book with Different Roads, co-authors Shahla Ala’i-Rosales and Peggy Heinkel-Wolfe offer a specific call to action to both parents and professionals—to seek and maintain joy’s radiating energy in our relationships with our children.
Parents have the responsibility of raising their children with autism the best they can. This journey is part of how we all develop as humans—nurturing children in ways that honor their humanity and invite full, rich lives. Ala’i-Rosales and Heinkel-Wolfe’s upcoming book offers a roadmap for a joyful and sustainable parenting journey. The heart of this journey relies on learning, connecting, and loving. Each power informs the other and each amplifies the other. And each power is essential for meaningful and courageous parenting.
Ala’i-Rosales is a researcher, clinician, and associate professor of applied behavior analysis at the University of North Texas. Heinkel-Wolfe is a journalist and parent of an adult son with autism.
“Up, up and awaaay!” all three family members said at once, laughing. A young boy’s mother bent over and pulled her toddler close to her feet, tucking her hands under his arms and around his torso. She looked up toward her husband and the camera, broke into a grin, and turned back to look at her son. “Ready?” she said, smiling eagerly. The boy looked up at her, saying “Up . . .” Then he, too, looked up at the camera toward his father before looking back up at his mother to say his version of “away.” She squealed with satisfaction at his words and his gaze, swinging him back and forth under the protection of her long legs and out into the space of the family kitchen. The little boy had the lopsided grin kids often get when they are proud of something they did and know everyone else is, too. The father cheered from behind the camera. As his mother set him back on the floor to start another round, the little boy clapped his hands. This was a fun game.
One might think that the important thing about this moment was the boy’s talking (it was), or him engaging in shared attention with both his mom and dad (it was), or his mom learning when to help him with prompts and how to fade and let him fly on his own (it was), or his parents learning how to break up activities so they will be reinforcing and encourage happy progress (it was) or his parents taking video clips so that they could analyze them to see how they could do things better (it was) or that his family was in such a sweet and collaborative relationship with his intervention team that they wanted to share their progress (it was). Each one of those things is important and together, synergistically, they achieved the ultimate importance: they were happy together.
Shahla has seen many short, joyful home videos from the families she’s worked with over the years. On first viewing, these happy moments look almost magical. And they are, but that joyful magic comes with planning and purpose. Parents and professionals can learn how to approach relationships with their autistic child with intention. Children should, and can, make happy progress across all the places they live, learn, and play–home, school, and clinic. It is often helpful for families and professionals to make short videos of such moments and interactions across places. Back in the clinic or at home, they watch the clips together to talk about what the videos show and discuss what they mean and how the information can give direction. Joyful moments go by fast. Video clips can help us observe all the little things that are happening so we can find ways to expand the moments and the joy.
Let’s imagine another moment. A father and his preschooler are roughhousing on the floor with an oversized pillow. The father raises the pillow high above his head and says “Pop!” To the boy’s laughter and delight, his father drops the pillow on top of him and gently wiggles it as the little boy rolls from side to side. After a few rounds, father raises the pillow and looks at his son expectantly. The boy looks up at his father to say “Pop!” Down comes the wiggly pillow. They continue the game until the father gets a little winded. After all, it is a big pillow. He sits back on his knees for a moment, breathing heavily, but smiling and laughing. He asks his son if he is getting tired. But the boy rolls back over to look up at his dad again, still smiling and points to the pillow with eyebrows raised. Father recovers his energy as quickly as he can. The son has learned new sounds, and the father has learned a game that has motivated his child and how to time the learning. They are both having fun.
The father learned that this game not only encourages his child’s vocal speech but it was also one of the first times his child persisted to keep their interaction going. Their time together was becoming emotionally valuable. The father was learning how to arrange happy activities so that the two of them could move together in harmony. He learned the principles of responding to him with help from the team. He knew how to approach his son with kindness and how to encourage his son’s approach to him and how to keep that momentum going. He understood the importance of his son’s assent in whatever activity they did together. He also recognized his son’s agency—his ability to act independently and make his own choices freely—as well as his own agency as they learned to move together in the world.
In creating the game of pillow pop, parent and child found their own dance. Each moved with their own tune in time and space, and their tunes came together in harmony. When joy guides our choices, each person can be themselves, be together with others, and make progress. We can recognize that individuals have different reinforcers in a joint activity and that there is the potential to also develop and share reinforcers in these joint activities. And with strengthening bonds, this might simply come to mean enjoying being in each other’s company.
In another composite example, we consider a mother gently approaching her toddler with a sock puppet. The little boy is sitting on his knees on top of a bed, looking out the window, and flicking his fingers in his peripheral vision. The mother is oblivious to all of that, the boy is two years old and, although the movements are a little different, he’s doing what toddlers do. She begins to sing a children’s song that incorporates different animal sounds, sounds she discovered that her son loves to explore. After a moment, he joins her in making the animal sounds in the song. Then, he turns toward her and gently places his hands on her face. She’s singing for him. He reciprocates with his gaze and his caress, both actions full of appreciation and tenderness.
Family members might dream of the activities that they will enjoy together with their children as they learn and grow. Mothers and fathers and siblings may not have imagined singing sock puppets, playing pillow pop, or organizing kitchen swing games. But these examples here show the possibilities when we open up to one another and enjoy each other’s company. Our joy in our child and our family helps us rethink what is easy, what is hard, and what is progress.
All children can learn about the way into joyful relationships and, with grace, the dance continues as they grow up. This dance of human relationships is one that we all compose, first among members of our family, and then our schoolmates and, finally, out in the community. Shahla will always remember a film from the Anne Sullivan School in in Peru. The team knew they could help a young autistic boy at their school, but he would have to learn to ride the city bus across town by himself, including making several transfers along the way. The team worked out a training program for the boy to learn the way on the city buses, but the training program didn’t formally include anyone in the community at large. Still, the drivers and other passengers got to know the boy, this newest traveling member of their community, and they prompted him through the transfers from time to time. Through that shared dance, they amplified the community’s caring relationships.
When joy is present, we recognize the caring approach of others toward us and the need for kindness in our own approach toward others. We recognize the mutual assent within our togetherness, and the agency each of us enjoys in that togetherness. Joy isn’t a material good, but an energy found in curiosity, truth, affection, and insight. Once we recognize the radiating energy that joy brings, we will notice when it is missing and seek it out. Joy occupies those spaces where we are present and looking for the good. Like hope and love, joy is sacred.
When there is so much hate and so much resistance to truth and justice, joy is itself is an act of resistance. ― Nicolas O’Rourke
Peggy (watching Sam dismantle a stuck exterior door latch): Sam I think you could be a good burglar.
Sam: I’m working from inside the house.
I had forgotten how wonderful a warm fire feels on a cold day. We had a wood stove at the farm. After we moved to town, installing a wood-burning fireplace insert went on the to-do list, but it would always slip down a few notches as other things crept up the list.
I grew up in Wisconsin. I have never been so cold in my life. We saw the forecast, so we prepared. We filled three five-gallon jugs and the bathtubs with water. We had two weeks’ worth of food (although my plans to make lasagna mid-week were foiled). I also made a point of finishing the laundry on Sunday night.
Back in 2011 the power outage didn’t last as long, but we didn’t suffer because the wood stove kept us warm and heated coffee (always essential) and food. Here in town we have a gas furnace, but every time the electricity rolled off during Uri, so did the heat. Getting a wood stove went to the top of the to-do list.
As the good people at Heffley’s installed the fireplace insert this fall, I learned how lucky we were that we didn’t chance using the old gas logs. (Before we moved in, the home inspector declined to check the fireplace. He told me to get a plumber instead. That job never even made the to-do list.) We discovered that the rock façade had separated from the chimney. We probably would have set the house on fire that week.
The whole experience made me re-think what it means to be prepared and resilient. We took care of some of that this year. But buying stuff (we also got a Goal Zero battery with solar panels and a portable cooktop) doesn’t necessarily make you prepared and resilient.
Perhaps the last five years’ of resolutions were leading to this moment — saying no to buying stuff, saying yes to new experiences, better connecting to others, wearing an apron (looking for simple solutions), and taking it (whatever it might be) to all four corners.
Sometimes I think about those worst-case scenario books the kids loved when they were young. They were often funny and terribly fantastical (dodging an alligator attack or elephant stampede, landing a jet, etc.) but after Hurricane Harvey, I wondered how to pitch the tent on the roof. In the meantime, we will set up our go-bags.
Climate change is here. Time to be prepared and resilient.
The first time I took Sam to school and left him for a full day was a big leap of faith. I wasn’t alone, of course. Parents want to protect their kids. And parenting a child with autism or other disability puts that protective feeling into overdrive. Eventually I saw that we weren’t alone. His many teachers and therapists were part of his village. Later that year, I walked into a special education team meeting and recognized that, for the first time in Sam’s young life, I was not “on call” for every minute of every day. It was such a nice feeling, one that left room for more thinking and reflecting about our lives, and for resting, too.
That’s not to say that his school years were perfect. We knew not everyone in his life would be as mindful. But we also knew that the perfect is the enemy of the good. When conditions warranted, someone at school picked up the phone and told us about an emerging problem. We addressed many small things before they got big. And we learned to celebrate the average and the good enough, which was its own kind of achievement for Mark and me.
So (and you knew there was a so, didn’t you, dear internet people?), I struggle deeply with the burgeoning installment of security cameras at school. We aren’t just pointing cameras at the school’s exterior doors. Or in the hallways. Or from the school resource officer’s body armor. We are pointing them inside the classrooms, too.
In Texas, parents can ask for a camera in their child’s special education classroom. The school must get consent from parents of the other kids in the class, but such camera use is on the rise. Advocates for kids with disabilities continue to press the legislature for broadening a family’s rights to footage. One day, some parent will send their child with a disability to school with a body camera if they believe it’s necessary.
I recognize that school can be a rough place for children who don’t fit in for one arbitrary reason or another. Sam was getting hassled in the boys’ bathroom one year, and solving the problem proved tricky for the aides, both women. But we figured it out.
I recognize also that some schools are hard pressed to fill their teaching ranks. There are employees without enough skills to work with and manage kids, the place where most tragedies begin.
This is not to say that people in our community might have different values from my family’s or yours. As a culture, we wobble too much in figuring out how to work with those differences as strengths and educate our children. But I have to say, where parents are asking for cameras, we aren’t reading those huge warning flags.
When Sam graduated high school, I wanted everyone from elementary school on up to have a “Team Sam” button as a little token of our esteem and affection. I ordered 250 buttons and did not come close to gifting all those people who touched his life and helped him make progress. Dozens of teachers, of course, but also speech therapists who worked with him on communication skills. Occupational therapists and adaptive physical education teachers who helped him with his motor planning and ability to calm himself. School counselors who helped him build friendships. Aides who helped him stay on task in class and occasionally take a moment to decompress when he couldn’t. And the principals and other staff who stood by and made sure all those people had the support they needed.
I had to trust these people. All of them. A lot.
There was no “trust but verify.” Where there are cameras, there is no trust.
The national media is noting the ignorance and cruelty in Texas public policy, including the new laws that ban abortion and suppress voting rights. I would argue that the state’s policies and governance vis-à-vis people with disabilities amply demonstrates that this ignorance and cruelty isn’t new.
Elected officials in Texas have refused for years to adequately fund the medical and disability services that allow individuals to live in the community and avoid costly (especially to taxpayers) institutional care. Federal programs can pay the lion’s share of these services, and in most other states they do, but Texas refuses to expand Medicaid enough to allow that to happen. Instead, they authorize puny levels of funding for “waiver” programs—part of the federal law that allows Texas and other states to opt out with the promise to take care of people in their own way. But really what Texas does is pretend the burden doesn’t exist. Instead of fostering human progress, Texas disability policies hardwire families and communities for long-term suffering.
Sam was in kindergarten when we first moved to Texas. We followed the advice of the good people at Denton MHMR and put his name on one of the infamous waiting lists for the state’s waiver programs. Our social worker said that even though we couldn’t be sure then what services Sam might need when he was 18, we’d have no chance at help if he wasn’t on a waiting list. At the time, we were among the young families that got a little help paying for respite care and for special equipment, so we picked the waiting list for the waiver program most like that.
(Sadly, a year or two later, even that modest state program for young families ended. We were on our own.)
Families who are able to access services under these sparsely funded waiver programs understand them much better than I do. Sam made enough progress and adapted well enough that he doesn’t need the help—the kind of basic human need that tends to make allies and advocates into battle-hardened experts in the shortcomings of public policy.
But I do know that the Texas waiting lists for waiver programs are cruelly long. Nationwide, there are about 600,000 people on a waiting list and more than half of them are on a list in Texas. (For context, remember that less than 9 percent of the nation’s population lives in Texas.)
In its latest budget, the Texas Legislature funded additional slots to get more people into the waiver programs, but not nearly enough. Some advocates and self-advocates have done the math: the Texas list is so long that individuals could wait their whole lives and never receive services.
When other states would get in this deep, they agreed to Medicaid expansion made possible by the Affordable Care Act. Waiting lists for waiver programs in those states nearly disappeared because Medicaid expansion stepped in to fund those services.
According to the Kaiser Family Foundation, Texas is among just 12 states that haven’t expanded Medicaid. Texas is, by far, the most populous state to refuse to provide services at a meaningful level and make no real progress toward that goal.
Some advocates wonder whether the U.S. Department of Justice will intervene, especially when U.S. Department of Health and Human Services officials seemed to wobble on approving the state’s waiver program earlier this year. It’s a great question, but we need look no further than the state’s troubled institutions—called state supported living centers—to see how a negotiated settlement might go. Independent federal monitors have visited those centers since 2009, after fresh reports of abuse and neglect emerged with cellphone video of a “fight club” forced on residents at the Corpus Christi center. All 13 centers were supposed to meet negotiated standards by 2014 or face further action, up to and including closure. Twelve years later, none of the centers (home to about 4,000 people with developmental disabilities) met the standards, the monitors still make regular visits, and all 13 centers remain open at increasingly unsustainable costs to state taxpayers.
Texas is growing fast and its people need a far more robust physical and social infrastructure than state officials seem to grasp. Some people see our governor moving about in a wheelchair and think he’s got the disability thing covered. But advocates know better. “He’s not one of us,” I heard one self-advocate say recently, pointing out the many, many differences between an individual who must adapt their entire life when compared to the governor’s experience, where the need for a wheelchair came much later in a life of privilege.
These days, Texans are watching their governor and the other small, little men in state leadership race to the bottom in a panic to maintain power. In that twisted race, their lawmaking and policies are displaying new levels of ignorance and cruelty for all to see. But color me not surprised, as the ignorance and cruelty has been part of their law- and policymaking for our community for a very long time.