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.
Peggy (to Sam, after sharing news with cousins about second co-authored book on its way): You wrote a chapter for my first book, remember?
Sam (to cousins): Yeah, Mom can’t write a book by herself.
Sam (after sitting down briefly in the easy chair, rises and returns to kitchen): That pizza’s gotta cook. I’m hungry.
Britney Spears’s battle to be free of the conservatorship that has governed her affairs touches familiar themes for us old-timers in the disability world. She’s asking for the grown-up version of the least-restrictive environment, the federal right of children with disabilities to receive a free, public education alongside their peers in regular education classes, with support, if necessary.
For now, the least-restrictive environment is the best way we know to ensure every child has access to all they need to learn and grow into their best selves.
Over the years, I’ve seen a few families struggle to understand what guardianship really means. Adults need a least-restrictive environment, too. When Sam approached high school graduation, we were told that, as his parents, that we’d better think about setting up guardianship before he turned 18. It has been a few years now, and perhaps understanding has improved among the teams that do this transition planning, but at the time, Mark and I really thought that recommendation came out of left field. We’d fought for Sam his whole life for him to be included at school and in the community, to be in that least restrictive environment. Something about guardianship felt very restrictive to us.
Then an older, wiser friend boiled it down for us. “You’ll have to tell a judge, in front of Sam, that he’s incompetent.” I can still see Mark’s face when he realized what that meant. “We could never do that to Sam,” he’d said. To which I’d replied, “oh, hell no, we couldn’t.”
I often bring the salt, just FYI.
For our family, that ended the guardianship discussion right there. I did poke around a little, however, to figure out ways we could be his bumper guard. Once you start looking around, there are all kinds of ways to be there for someone, even in a somewhat official capacity, from bank signatories to putting both names on a vehicle title to advance directives and more–all without ever stepping foot in a probate court.
Last week, I learned even more about the power of supported decision making, an alternative to guardianship that gets you in the door when your loved one really needs you. These documents are legally recognized, even if your loved one is ensnared in the criminal justice system. One-page profiles can also help a lot for those times you can’t get in the door–when your loved one is in the hospital with covid, for example.
When your loved one truly needs a guardian, it pays to be thoughtful and as minimally restrictive as possible. That can be tough in Texas, just another FYI.
This year, advocates helped defeat a troubling bill filed in the Texas House of Representatives during the last regular session. If it had passed, the bill made it too easy for parents to get and retain guardianship of their teen. The legislation was inspired by one family’s tragedy, but it was rife with unintended consequences that would have stripped many young adults of their autonomy—especially if special education transition teams in Texas school districts are still advising parents to pursue guardianship without thinking it through.
Only a few generations ago, some doctors blamed mothers for their children’s autism. Psychologists wrote long theoretical papers based on their observations of mothers and their children. They concluded that autism mothers were cold and that their lack of love triggered the child’s autism.
If you stop to think about that idea for a minute, those explanations were quite a leap. And a cruel one at that.
We humans look for patterns in the world around us–it’s almost one of our super-powers. We use the information to make meaning, and create loops of ferocious thinking that make the world around us a little better.
Therefore, knowing that we’re supposed to make things better, the Refrigerator Mother explanation for autism just begs the question. How much did those early theoreticians consider and—most importantly, rule out—before concluding they’d observed a pattern of mothers who don’t love their children?
Granted, many people were immediately skeptical of these mother-blaming theories, including other professionals and autism families. The theories fell after a generation, but the damage was done to the families forced to live under that cloud as they raised their children.
And, the blame game is still out there.
The latest iteration has started in a similar way, with people seeing problematic patterns in autism treatment. Young adults with autism are finding their way in the world. Some of them had good support growing up, but the world isn’t ready for them. Some of them had inadequate support growing up, so they have an added burden as they make their way in a world that isn’t ready for them either. Some are speaking up not just about the world’s unreadiness but also about that burden. We must listen. Autistic voices can help us find new patterns and new meaning and build a better world for all of us.
We should be careful about letting one person’s experience and voice serve as the representation for the whole, because that’s how the blame game begins. Even back in the old days, when information was scarce, we had the memoirs of Temple Grandin, Sean Barron, and Donna Williams to show us how different the experiences can be. As Dr. Stephen Shore once said, if you’ve met one person with autism, then you’ve met one person with autism.
Here’s an example of how that can break down: some now argue that asking an autistic child to make eye contact, as a part of treatment service, is inherently abusive because eye contact feels bad for them. Missing from that argument is the basic context, the understanding that for humans to survive, we need to connect to one another. For most of us, eye contact is the fundamental way we begin to connect, from the very first time we hold and look at our new baby and our baby looks back at us.
I asked Sam recently (and for the first time) whether making eye contact is hard or painful for him. I told him I was especially curious now that eye contact changed for all of us after living behind face masks for a year. He said this, “Eye contact is very powerful. I wonder whether I make other people uncomfortable with eye contact.”
He’s right. It is powerful. And he just illustrated the point about one person’s perspective.
When Sam was young, we never forced him to look at us. But after a speech therapist suggested using sign language to boost his early communication, I found the sign for “pay attention” often helped us connect.
The additional movement of hands to face usually sparked him to turn his head or approach me or Mark in some way, so we were fairly sure we had his attention and that was enough to proceed with whatever was next. Over the years, we’ve shared eye contact in lots of conversations and tasks. But if not, we recognized the other ways that we were connecting and I didn’t worry about it.
All of this context—both the need to survive and the difficulty with a basic skill needed for that survival—cannot go missing from any conversation about the value of teaching an autistic child. Some people with autism do learn how to make eye contact early on and are fine with it. Some don’t. For this example, then, we can listen carefully to adults with autism and their advocates as they flag patterns from their bad experiences with learning to make eye contact and make changes. But that fundamental need to connect and share attention remains.
That’s when we also need to remember our tendency to blame others when our troubles feel intractable. Sometimes, in these fresh arguments over how autism treatment should proceed, I hear that same, tired pattern of blame I’ve heard since Sam was born. Take it from a worn-out mother who’s been blamed plenty over the years: some arguments are just another round of the same, they just come inside an elaborate wrapper of mother’s-helper blaming instead.
All the families I know truly love their children and are learning how best to respond to them. We can’t forget that parents have a responsibility to raise their child as best they can. Let’s talk, please. But please also, let’s spare the rollout of Refrigerator Mother 2.0, because it could cost us a generation of progress.
Our extended family has been checking in with one another as we get vaccinated. We are scattered across several states, each with differing priorities and abilities to deliver the vaccine. Still, we cheer each other’s progress as we all approach the finish line.
Texas ignored essential and frontline workers in making its priorities, emphasizing shots for nursing home residents and seniors instead. Texas also got behind other states in getting shots in arms (color me not surprised). As fears rose with the fourth wave of new infections full of variants, I worried that Sam would get sick before Texas got around to vaccinating his age group.
For a while, our best hope seemed that our county was doing a good job in spite of it all. Both Dallas County (with millions of residents) and Denton County (with less than a million) have been holding mass vaccination events and both celebrated the 250,000 mark this week.
As soon as Denton County opened its vaccination list to all adults, I signed Sam up. He was at work when I did. I knew he wanted to take care of it himself, but I told him if we’d waited, even just those few hours for him to get home from work, who knows how many thousands would have gotten in line ahead of him?
The strategy seems to have worked. Sam’s appointment came the first day of the first week for the new cohort—all Texas adults. After he got his appointment, he took the unusual step of group texting his siblings and his aunties with the news. He got the high fives, but his brother and one of his aunties also reminded him that it was a shot and he would feel it.
He needed to talk about that. Sam has been accustomed to the extra steps the nurses at his regular doctor’s office take for inoculations, including applying a topical anesthesia to take the edge off. Knowing that wouldn’t happen at a mass vaccination event made him nervous. I reminded him that his brother and aunt were being very loving by telling him the truth about what to expect.
I did my best to continue the truth-telling by answering his other questions about what to expect since mass vaccinations are different. He asked me to drive him. He said he didn’t think he could manage his anxiety and drive, too. (He is not alone in that. I’ve volunteered at the speedway a few times and have seen plenty of folks shore each other up that way.)
When the moment came and the medical reserve volunteer opened the car door to administer the vaccine, he noticed Sam’s anxiety. We acknowledged it—it was the truth, after all—and he immediately shifted gears to help ease the way for Sam. The volunteer may not have had topical anesthesia, but his care had the same effect. Once inoculated, Sam said he was surprised how easy it was. The volunteer laughed and told him that applying the bandaid was the biggest part of the job. Then they both laughed.
I learned early on that it’s always better to tell Sam the truth. First of all, any child will stop trusting you if you say things like “shots don’t hurt” when you know perfectly well that they do. In addition, when Sam was little, he needed us to bridge him to the rest of the world. We couldn’t afford to be wiggly, amusement park rope bridges. Also, he doesn’t know what to do with white lies or half-truths. (Heck, they used to confuse me, too, but Sam also taught me that if you take people at their word instead of playing along, it’s their turn to be confused.)
Sam has his best shot at identifying and asking for what he needs when we tell the microscopic truth. Don’t we all?
I asked him whether he still wanted me to drive him for his second shot. Yes, please, he said.
Save the warnings by the National Weather Service, our household would not have been prepared for the freezing weather and massive power and water losses Texas suffered last week. From late Sunday night through Thursday afternoon, we endured rolling blackouts as two separate winter storms came through North Texas. Unlike many Texans, we didn’t lose our household plumbing in the cold, but our city’s system lost water pressure and we were without safe drinking water from Wednesday afternoon through Saturday morning. We also had no home internet service for most of the week.
As the meteorologists gave their forecasts, the conditions looked to me much worse than they did in 2011, the last time we had a day of rolling blackouts. Since that debacle, I’d read Ted Koppel’s book “Lights Out,” a sobering assessment of life after a catastrophic grid failure. Sam has friends who eventually gave up on living in Puerto Rico post-Maria. I recognized the incredible risk embedded in that forecast. We prepared like a hurricane was coming, with extra food, water (including filling the bathtub), and other provisions. We sheltered our plumbing as best we could.
If we had been waiting for cues from state or local public officials, we would not have prepared.
Once the crisis began, it was hard to explain to Sam what was happening. We had little official information to go on. For example, I couldn’t tell him when we might be able to depend on having power again, because no one was saying. I showed him the homepage for the state’s power grid, which has a good visual for what’s happening at the moment. On the outage days, there were bizarre spikes in future capacity, as if ERCOT expected four or five generation facilities to come back online at any moment.
Of course that wasn’t what happened. During the second day of rolling blackouts, we would get a phone call once or twice a day from the city utility, telling us to expect rolling blackouts for the day or night. But those calls said nothing about the grid status or when power would return.
After meteorologists called for warming on Saturday, we made contingency plans to get through to that day. I warned Sam that the power might be unreliable for days or weeks afterward. Power companies had rotated the power off in some places and couldn’t rotate it back on. That could mean the grid is damaged in places, I told him.
Also, when the blackouts started, I couldn’t tell him when the power would be on or off. There was no discernible pattern and we weren’t told. After about 24 hours, the city’s robocalls suggested a basic pattern, although we predicted it more closely using our oven clock as a reverse timer. We also observed street lighting changes as a predictor when we’d be shut off. If it was particularly quiet, Sam could hear the power coming back before the lights went back on. As a result, we could plan for things we needed to do to survive, like prepare food or charge our phones.
But that adaptive mode was ours to determine, and sometimes I had to coach Sam through it. Nothing was ever suggested to us by a public official how to cope with rolling outages, or how cold your home could get before it became too dangerous to sleep there, and the like.
When the city’s water system failed, our city made daily phone calls with recorded messages. They told us when the system was failing and how to help, then they told us when it failed, then they told us how recovery was going, and finally they told us when it was safe to drink again. That communication helped.
Sam does well with most of what adult life throws at him, but one of the few things he still struggles with is “official” communication.
Frankly, we all do better when public officials communicate with us in plain language. That is one reason why the federal government adopted the Plain Writing Act of 2010. I recognize the writing style when I get a letter from the IRS or the Social Security office. They always write in plain language so that even when your situation or the law around it is complicated, they use vocabulary and syntax you can understand so you can act accordingly.
For people with autism, such plain language communication is vital. Sam would likely have suffered greatly in last week’s outage without someone with him to translate what little information we were getting and work to fill in all the voids. ERCOT wrote arcane tweets about load-shedding, for example, and asked people not to run their washing machines. Still shaking my head about that.
We’re both still recovering from the trauma of last week. The trauma was made far, far worse by the lack of communication from state officials. As they set up their circular firing squads in Austin this week, we are learning that they knew this problem was coming and they knew it was a problem of their making. I’m sure individuals were panicking and that made it difficult to make good choices, but that’s why, in calmer moments, they are supposed to write and practice emergency plans. This was foreseeable and preventable. However, in my darkest moments, I sense that the lack of communication was a choice, one they made in part to avoid blame.
This week, I’ve also been stunned by how many people stung by this abject failure expect it to happen again. They simply do not expect our state to be able to fix this mess.
I want to reject that premise, but, mercy me, if it happens again, can they at least have the decency to communicate to us, and in Plain Language?
Peggy (after listening to an automated message lifting the boil water notice): Sam! The tap water is safe again! We can do whatever we want with it.
Sam: Except waste it.
Hopefully, this week tips the balance between the number of people Sam and I know who got sick with COVID-19 (a lot) and the number who’ve been immunized (only a handful). Texas has lagged the rest of the country in delivering vaccine, and our county has lagged even further, at least until they organized this week’s 10K-per-day, multi-day, drive-through shot clinic at the speedway.
The pandemic forced Sam and me to reshape our lives quite a bit over the past year, and the routine that evolved likely helped our mental health. We took a few days at Christmas to visit Michael and Holly in Austin (combining our bubbles proved just fine) and found that, in coming back home, re-establishing the daily rhythm took a little effort. We thought our routine was a gentle one, but it was a routine nonetheless.
Now, we can see that the routine will change again as the pandemic recedes. Sam says he finds it hard to imagine that things will go back to the way they were, even though he would like to go dancing again and some horseback riding competitions could return. Those leisure activities mean taking time off work, something he’s done very little of in the past year.
In addition, we like much of what we’ve folded into our lives since the pandemic shut us in. We found time to learn calculus, which has become a small, joyful part of nearly every day now. We also look forward to bike riding on the weekend. (We signed up for a virtual challenge because, first, his sister suggested it, and second, because it seemed like a peak pandemic-y thing to do.) And Saturday night has become movie night for us in a way that Alamo Drafthouse couldn’t replicate, snacks and all: we set the schedule and we curate our own themes. Right now, we are watching films that explore civil rights and our country’s dark history of white supremacy.
Many new things we do may continue, including the favorite parts of our routine. Sam says he will continue wearing masks for allergy season or whenever he needs to protect himself from dust. I suspect we may don them in public other times, too. It’s kind of gobsmacking how, in the before times, we were expected to go to work with a cold, or otherwise be out and about and infecting each other. Egad.
In other words, I don’t think it’s just the family dog who’d rather we keep the current routine. Maybe that old routine from the before times wasn’t so free after all, subjecting us all to much more of a rigid and unhealthy grind than we remember.
Olga Korbut changed the face of gymnastics when I was in junior high school. She looked so graceful and athletic in Seventeen magazine’s photos from her performance at the 1972 Olympics. As you might imagine, many of the wiggly tweens in my gym class were excited that our teacher added a gymnastics unit, largely because of what Korbut had inspired. Now, we could all experiment with moving through the world that way. That’s also when I learned one of the rules of floor exercise: a gymnastics routine can borrow from dance and mix in lots of tumbling, but it must also go to all four corners of the mat.
It’s a curious rule, yet wise when you think about it. It requires the competitor to be thorough as they challenge their body. I started thinking about that rule again recently and decided to add it to my ongoing pursuit of small, yet large, New Year’s resolutions. For 2021, I plan to take things to all four corners.
Last year’s resolution, Wear An Apron, feels prescient now, given the pandemic. We certainly spent a lot more time in the kitchen in 2020. But the bigger idea behind it–that whatever problem we faced, someone out there solved it already–kept us grounded, too. Online, we found Khan Academy to help Sam (and me) learn calculus as well as a sewing pattern and instructions for face masks vetted by some pragmatic nurses in Iowa. On YouTube, I started following a smart yoga instructor and my dad’s favorite backyard gardener, a fellow in England whose bona fides begin with his unapologetically dirty hands. Even streaming The Repair Shop revealed wide-ranging wisdom about problems I didn’t even know could be solved. Awesome.
Thinking ahead to this year, I remembered an editor who would remind us reporters to nail down all four corners of an investigative story before publication. Smart advice, but it also created a defensive image in my mind’s eye rather than something inspired by filling up the space of a gymnastics mat. Don’t get me wrong, it’s important to be able to rigorously defend your choices and actions, but the big idea for 2021 shouldn’t be about the pursuit of perfection. Instead, going to all four corners means planning thoroughly, and being careful and deliberate.
Raising kids, especially someone like Sam who needed so much, shunts the pursuit of perfection to the side in favor of steps that move toward progress. But I can’t say we always took it to all four corners.
For example, Sam does pretty well in the kitchen. All my children learned cooking and cleaning basics and food safety. Now, Sam does so well with some recipes that I can plan time off in the kitchen when he steps up. But I know we haven’t taken it to all four corners. Managing a kitchen is hard with all the planning and shopping. And the principles of cooking that let you tackle a new recipe, that’s something else, too.
So, not such a small idea after all. But it may be warranted for 2021, because I bet once we let loose the reins from the pandemic, there could be many things that need to be thought through again, and to all four corners.