Awakened
It has been less than one month since the inauguration, and the barrage of orders has come from on high at such a pace to shake up the world significantly. In the midst of this onslaught, I hear the criticism of “woke” ideologies.
Growing up, I heard a lot of things that I didn’t like. My dad was a construction foreman, union carpenter, and despite the diversity of workers, ethnic biases and harsh language were rampant on the sites–and many other places. Divisions were visible, and it had only been a few years since schools were divided by race. They still were, if then by economic realities instead of actual laws. As unpopular and impractical as busing was, it did make a difference. Affirmative action made a difference. The ADA made a difference. Biases became more muted, The casual slurs hit harder, because they were less common. This is not to say that biases were erased, not by a long shot, but the voices of people who previously had a small platform became more prominent. I grew up. It was a good thing. For someone like me, who first was fascinated by the diversity of cultures around the world, then facing disability in my family, I felt hopeful, even though the road still had miles of tough climbs ahead. I think that the better term for this road, this process, is not “woke.” It is “awakened.”
Is this what it takes?
We have all been captivated in the aftermath of Brian Thompson’s brazen murder in New York. As the news was announced, many speculated that the gunman was either a frustrated United Healthcare customer or hired by one. As we have seen in the last few days, the apprehended suspect did, indeed, face debilitating pain, though the details of his medical journey have not been made public.
Beyond the reckless gun violence that seems to define our country, we like to think of our society as a morally ethical one. We are a democracy, with laws in place to punish crimes like this, including the vigilante crimes that to some seem justifiable. In the end, this was a murder, the premeditated killing of a human being, and this is without a question wrong.
Some have called the murderer a hero. By this argument, United Healthcare is an evil corporation, and killing the CEO is a statement against all that the insurer has done to harm its customers.
The murderer is no hero.
Whatever the outcome of a trial, however, we cannot deny that the murder has brightened the spotlight on much that is wrong with healthcare in the United States. Despite the high premiums we pay for health insurance, the process of getting medical care approved and funded can seem nearly impossible, especially for those who need it the most.
I have read many arguments in response to discussions lately that insurance is not intended to cover normal care… and in fact, I remember a time, years ago, when this was true. When I was little, my mom wrote a check to the doctor for ordinary visits. Ha! So long ago! Private pay feels quaint now–or exclusive, limited to the private care psychiatrists, med-spas, membership concierge practices. In reality, ordinary healthcare, even one office visit, is largely unaffordable without insurance, and still unpredictable despite pricing transparency laws that have gone into effect since 2021. Reduced prices negotiated for health insurance plans create a two- (or more) tier system with much higher prices for those who want to pay out of pocket.
Insurance or not, the research and study involved in making predictions about costs for care are overwhelming, and harder still to navigate while sick or injured. People are talking about this loudly again, with media coverage and attention from Congress. Anger today is palpable, as if we just realized that the countless hours we spend on hold with our insurers are the experience of nearly everyone, and not isolated incidents. Protests, strikes, marches all seem overdue, but demonstrations have seemed so ineffective to the monstrosity of a system where the decision-makers seem so cut off from ordinary people.
For the last fifteen years, I have seen firsthand that for most people, often very sick people, it is not the illness or condition that is the primary point of suffering; it is the maneuvering necessary to secure treatment and payment for that treatment. How horrible is that?
Worry about payment shocks and all too often, bankrupts people who get sick. Many of us have delayed or deferred care that was not urgent, often due to cost, either defined or potential, and most of us now have fought at least one battle to have our care approved. Copays for ongoing treatment often are a barrier, though some ongoing therapies may cost far less in the long run–and improve quality of life overall. Ordinary devices and services could improve life for so many, but think of all that is rarely covered by insurance: dental care, hearing aids, any sort of long-term care support services (community-based or institutional)… If the human condition includes a certain amount of physical disability throughout a lifetime, a morally ethical society would take our likely need for healthcare into account within the framework of human rights. I am not the only professional who has seen jaws drop as people who have paid for years into a system figure out that the gold-standard plans they paid into for years are more like lead: heavy, impenetrable, and toxic.
Back in 2012, Robert Wood Johnson Foundation, Harvard School of Public Health, and NPR released a study called “Sick in America” (https://www.kff.org/wp-content/uploads/sites/2/2012/05/charts.pdf). It was not the first study of the issue, but it struck me at the time because of what I was seeing, and because the study compared perceptions of medical care and health insurance based on the illnesses and conditions people had experienced. For those who had chronic conditions requiring care for over a year, favorable responses dropped enormously.
Since that time, the COVID epidemic has brought healthcare concerns to the forefront. Several years past then, we have faced the burnout of medical staff, inflation, hospital closings, and an aging population that needs medical care more than ever. We are in trouble, and it has hit nearly all of us close to home. None of what I am saying here is new. The Affordable Care Act may well have eliminated exclusion to payment for pre-existing conditions, for example, but we never managed to remove the greed from the equation. Critics of single-payer systems have long pointed to the evil elements of a supposedly socialist health payment system, named them death panels who would restrict our care. The death panels are the insurers we have now. We all know this, and yet we remain complacent in our swallowing of what capitalism allows to trickle down to us.
I hate the fact that a man was murdered, and hate even more that a man was likely murdered to make a point about greed and the injustices in our healthcare system. Vengeful violence only perpetuates the system.
Many people feel completely helpless to faceless corporations and their enablers. Our country is suffering. The murder of Brian Thompson has highlighted the worst aspects of our country: gun violence and corporate greed. I hope that this time will be different, that changes will come to bring back a system that nurtures its citizens instead of perpetuating a class struggle.
We condemn human rights violations abroad so often, and we have so many freedoms and advantages in the United States. And still, more and more people find themselves locked out of rights because of financial struggles stemming from nothing more than the human condition. What more will it take for us to restore our humanity?
What the Hal?
Over the summer, I took on the task of editing a quarterly newsletter for the New England Translators Association. I was honored by the request and have wanted to get more involved, so I started collecting articles that I thought might interest the members. As I was doing this, I received some surprising news at work. My job, and the job of two others in my small office, were being eliminated by the end of summer. I started job hunting, and two trends became quickly evident to me. One, there are many unaccompanied minor children who have ended up in a new country alone. This alone was not news, but I was surprised by the number of recruiters offering opportunities to language professionals and case managers (also preferably bilingual). The jobs paid fairly well, but sounded grueling and required long stays away from home.
The second trend was also nothing new in our brave new world of smart phones and smart televisions and smart cars and smart houses and lives. Artificial Intelligence needs teachers, too, it seems, and recruiters are out all over the place rounding up subject-matter experts, preferably bilingual, to train large language models to sound more normal.
It occurs to me as I write this that I could have just asked my browser to write up something cute for my blog about the new jobs around this, but I didn’t. I hold tight to the talents that bring me pleasure, especially, but also, I would rather not work for $20 per hour in a job that is intended exactly to eliminate people like me.
So many years ago, I remember sitting in high school Latin class listening to my often-off-topic teacher. His ponderings were an enormous part of what made him a great teacher, and one day he was musing about the future. In the early 1980s, he told us that the next revolution, an unimaginable change, he said, would be a cybernetic revolution. We had a little lesson in Greek that day, learning a word that has, indeed, changed everything.
Many things will happen this year. I am sure of this, as we face an election and the steady march into this world where machines seem more and more capable of thinking for us. I wonder sometimes if we have a responsibility to train these machines well and not leave them to the subject matter non-experts who need a job. Would it make a difference? I have tried to understand the technology and the changes coming for years now, but it remains fuzzy to me. I suspect that much as I long for newsprint and vinyl, we may all soon long for the tangible, and for the warmth of humanity to replace the machine-generated mask of pure imagination.
Anecdotes
I began this blog several years ago when I was working for the Metrowest Center for Independent Living in the Options Counseling program. It has been nearly fifteen years since that program began as a pilot, and it is still up and running, a regular part of centers for independent living and elder service agencies.
Back when we were getting started, the program was exciting. Originally intended to be the link between people at risk of nursing home placement and the home services they needed to avoid it, Options Counseling was not as easy as it may have been if those home services had been funded, but it gained a ton of hoopla nonetheless. This is the way these things so often work out–much ado and an utter lack of what was intended–but I gained valuable experience in creative problem solving and community outreach to make things work for people as much as possible. I also learned when to tell people the bitter truth.
My next work for the Canadian government was also an exercise in problem solving, with the gratification of having the tools I needed to get the job done, at least most of the time. The burnout and stress I felt in Options Counseling were replaced with a warm sense of accomplishment. There were hiccups and complications, but nearly none were insurmountable. In fact, we managed to meet our clients’ needs relatively quickly, and with a touch of friendliness that warms my soul to this day. Even on the busiest day, I never felt unsafe in that position the way that I have in many other roles. The people who needed our help all had a story, and many days I felt that we were building a case to prove an urgent need combined with an identity that qualified for the ask.. I loved it, really, and I enjoyed the people we met.
Lately I have been working on solving problems, too, but life in the private sector of the disability world is yet another thing. Financial resources are sometimes nearly limitless where I sit right now, and yet, the human element remains. We live now in a time of scarcity of service, on all levels. I say this not from a space of post-COVID pessimism, but from all the stories I hear and the things I see from those people in the thick of things. There just isn’t enough–not enough people willing to do the jobs, not enough jobs, not enough programs, not enough listening. Money helps–a lot–but too often, there is just nothing left to buy.
I have not collected the numbers necessary to run data analysis at scale. Being out in the world talking to people nevertheless leaves an impression. In the years I have collected these anecdotes, I have noticed a few things.
- The US healthcare system offers amazing innovations and opportunities, but is inaccessible to many people from a practical, financial standpoint. This is not new, but it has gotten worse.
- Money does not solve everything. But it helps.
- COVID-19 was a shock to everyone, even the people who expected it. It raised awareness of our lack of preparedness. I feel that relief not to think about our masked days all the time now, but the resentments that came out of the emergency seem stronger than the lessons we learned from it.
- People are living longer with chronic diseases and disabilities, and we are not ready to take care of them. This is no surprise. The fact that the infrastructure bill ended up removing remedies (and actually making it worse for providers) is shameful, to say the least.
- It is tempting in helping professions to make referrals and call it a day. What is available on paper (or on google) is rarely the reality, and unfunded programs and waiting lists frustrate people who need help now. Better to tell people the truth than to send them down a rabbit hole.
I struggle with my anecdotes, and with the value of the stories I collected over the years. We grapple now in our media with non-truths and rewrites, and I fear the confusion and divisiveness. It is hard to listen to all sides, harder now, and yet, we share a common thread as human beings. As a non-fiction writer and reader of tales of all sorts, fact-checking matters, but data sets do not always tell the real story.
User Experience
I needed milk and ran into our local Stop & Shop today. Of course, we needed more than just milk, so I also picked up coffee, the cherries that are on sale, and several other things. This is the closest non-specialty grocery store to me, and even though my son once worked here, I am not a huge fan of the chain. Overpriced and rude more or less sums up my general experience at this particular location in the past several years. Because of this, though, the store is rarely crowded, and prices are not as high as they once were, at least not for everything. They do have a few things I like, so it was a good chance to run out for a break from my job search.
I made my way around the store with few problems. I think they have finally gotten rid of the terrifying robot that roamed the aisles, or at least I didn’t see it today. On a past visit, the beeping android startled me, and I slipped on a wet floor, cracking my knee right by the checkout. In case you are wondering, no one from Stop & Shop asked if I was all right, although they plainly saw me fall. But I didn’t sue. I also didn’t go back for over two years. I returned once on a whim last year when they were the only store without a long line to enter. It can be nice to go into a store with so few customers in a pandemic.
Today, I made it all the way through my visitt, and opted for self checkout, as I saw only one regular register open, with a few customers already waiting. Framingham has a new ordinance to encourage bringing our own bags, which I was already doing, anyway, so I lined up my bags in the designated area past the scanner. As it should happen, this doesn’t work well, because the bagging area has a scale for items that are scanned. My bags had not been scanned, so they set off the alarm that “assistance is needed.” The employee then told me that I can’t put bags from home in that area, so I would have to load my purchases after I finished.
I had a couple of heavy items that I would normally put right back into the cart, but the scanner will not work unless the most recently scanned item is in the bagging area. A large bag of bird seed would not fit there. This required assistance.
I scanned an avocado, which again set off the alarm, and the employee scolded me not to scan produce. There is nothing to indicate this at the checkout, but the barcodes on produce do not work; you have to look up each item on a directory instead.
I accidentally scanned the cherries as grapes, and the employee came back and scolded me again, and also grabbed a bag of pistachios from my cart, right next to my purse. She was abrupt, and seemed angry, which I guess I can understand if she has to provide assistance four to five times for each customer in self checkout. Other than a few people who had only one item, it seemed that alarms were going off all around. She was alone handling six self checkout registers, while only one regular register was open. It seems such a short time ago that there were only two self check registers, and four or five registers with a checker and bagger for each, and not even that long ago that there were six or seven registers with one express line.
As I said at the beginning, I have encountered rudeness before at this store, but today I had my limit. The system is broken, and I’m not going back there. I have had problems at every store with self checkout, and this is not limited to Stop & Shop. At first, I resisted using it, because I felt it gave the stores excuses not to hire workers, but in many places, it is hard to find a register that is not self checkout.
I used to see more people working in stores, people I chatted with and liked to see. I don’t want to push back against improvements and technologies, but customers seemed fed up; I know I am. In a few stores, I have realized that I am the odd person shopping for myself while most people in the store are Instacart shoppers rushing through aisles. This is an amazing convenience, and I have used it a few times, too. But I really prefer to choose my own produce, and meats, and sometimes, in the right place, I am delighted by something I find. Is the shopping experience becoming a frustration intentionally? Are we being pushed to order everything from home? The convenience is undeniable, but I don’t like a world where we stay in our own huts and never encounter a stranger.
I suspect that the frustrations we face are not so intentional, though. My guess is that it is just cheaper to have more self checkout aisles, to avoid hiring workers. The store profits, and customers may grumble, but they adapt. They leave the stores in a bad mood, though, and over time, some realize that there are better experiences elsewhere.
I wrote some time ago about the Target dressing room, and the frustration that could have been avoided by providing a sign telling customers to check in with the store employee before trying things on. I have seen hospital staff fed up with baffled patients and their families. It is easy to forget that visitors to stores and hospitals do not know what the employee knows and experiences all day, everyday. And vice versa; it is easy for customers and patients and consumers of all sorts to forget that employees are (usually) doing the best they can.
Designing systems that work well for both employees and visitors takes planning and care. It matters, and it can make someone’s day.
Not Like That!
“Not like that!” the clerk shrieked to a customer about to pull out a shopping cart. The woman, who had just stood in a socially distanced line for several minutes before entering the store was trying to take an outdoor cart instead of one of the newly sanitized ones waiting for her inside. “Whoops, sorry,” the customer said, as the clerk shook her head. In the same store, another clerk asked me if I had brought my own bags, and I had not, because only a week earlier, the store had banned all outside shopping bags, and required the wearing of disposable gloves, in addition to the customary mask. My clerk said that they were running low on bags, and asked me to remember next time.
This was a scene from May, early in our whole experience of lockdowns and restrictions. A new reality had emerged, one with no rule book. People and organizations tried to cope as well as possible, and some awkwardness was to be expected. But I find my patience wearing thin now, months later, as I run into the store for the various things we need.
What will be the rules next time? It seems that everywhere I go, every time I go, there is a new procedure, or the abandoning of one. The statewide mandates are clear enough, and I can wear a mask everywhere away from home without too much thought. I can avoid throwing huge parties, and won’t race out to hug people I haven’t seen in months.
I had always loved the store, so was happy to abide by the rules, careful as we are now in these days of COVID-19. But I found myself shamefully grabbing three bags of my son’s favorite chips instead of just one, some attempt at avoiding this ordeal–an ordeal not because of the rules, but because of the crabbiness and muddiness of it all.
This year of pandemic has been difficult for everyone, and we have all tried in various ways to cope with the situation. These are not the tragedies, not the immediate ones, anyway. We are thankful not to be ill, not to have loved ones who are ill, and nearly everyone is at least a little afraid. It seems natural to wing it, to do the best we can, and there are generosities and kindnesses to be sure. But the fraying of our nerves, the testiness, the outright nasty comments… I wonder how long it will take for these to fade when we come out of all this.
Beyond Understanding
The year that Obama became president, my mom was still alive. I remember her tearing up as he was sworn in. She said that she never thought she’d see the day that a black man became president, and that she was proud to be an American.
Fast forward to our world today, torn apart by hatred and greed, and I am ashamed. My mom died eight years ago, and as much as I still miss her, I am relieved that she never saw Trump become president, glad that she has not been separated even more by this pandemic, which would have threatened her enormously with her COPD, and saddened her by the response to it all. And most of all, I am glad that she is not see our president fan the flames of violence by ignoring the systemic racism that still exists in our country today, evidenced almost daily. The horrors of violence toward people of color, institutionalized by the notion of law and order, may well have never disappeared, even in the moment that my mom felt pride. But to have a president who not only ignores, but encourages racism and hatred… we can no longer stay silent. I can no longer stay silent.
This year feels pivotal in so many ways. Our country is divided, and I have found myself personally perplexed and saddened to know people who refuse to see what is happening. How is it possible to remain objective when lives are torn apart? Nearly all of the people I knew who support Trump and his methods now used to be reasonable people who wished no harm, but those who continue to support–or who have been swayed to support these policies now seem like cult members. How did they come to accept these words that have no basis in reality? They state their (Trump’s) beliefs as though he works with well-researched facts, and they fight all the harder when presented with facts. Truth no longer matters? Well, all right, let’s say that’s the way things are. But when did it become acceptable to express hatred like this?
My mom told us of an evening when she was a child in southeastern Missouri that her own mom told her to stay inside. She was young–it was still the 1930s–but this was apparently when she learned about lynchings. A man was going to be lynched, she didn’t know why, but she did know that it was happening. It was horrifying to her then, and horrifying to remember. Horrifying to know about the people who did it, horrifying to know the dangers in opposing the lynchers. Years later, she still told this story, realizing how difficult it was still to overcome this time in history.
“We Shall Overcome,” sang the protesters during the Civil Rights Movement years ago. We still hope for the moment that we all can overcome injustice and cruelty. I hate to think that the progress I saw throughout my lifetime was an illusion. I am privileged, and may well have believed that the appearance of equality was truth. I knew that equality was not complete, in all honesty, but I thought that we were a hell of a lot farther than we are.
We must overcome, for the survival of our country, and it takes more than understanding. I cannot feel the experience of being black in America, as much as I may think I have seen, as many stories as I have heard. But I believe the stories, and I have seen the injustice. I hope and pray that our anger is constructive now, that every ounce of anger strikes a blow at our past injustices and our present prejudices, and that once we can see racism torn apart, we can rebuild a better country that seeks to mend with compassion, and that serves all of its own people and not only the rich and powerful who have stolen it now.
Essential
The hospital across the street from my house has had a white tent in front of the emergency room for the last few weeks. A strange sight in normal times, but these are not normal times, of course.
If all of this had happened five years ago, I might still be going in to visit people, as I did at least two or three days a week back then, but I doubt I would have had that sort of access. I would instead be trying to telephone, or skype, if possible, and otherwise I would be worrying about the nurses and social workers I knew there, as well as all the people I could no longer visit. A phone call never took the place of going in person back then, and I imagine it still feels lacking in a world of people who often suffer as much from loneliness as from the illness they are fighting. I am sure that the barrier to touch is one of the most difficult parts of this evil virus that has taken us now, the necessary disconnection.
Someone has put up a sign in the parking lot: “Heroes park here.” And indeed, they do. I see them walking back and forth from their jobs as they always have, and they have always been heroes, long before they were deemed “essential employees” in the corona-lexicon.
It is obvious that the people on the front line of illness are essential now, but the rest of the world that keeps those of us safe and fed at home share the badge of essential in these days. Suddenly, gas station attendants, delivery workers, and grocery store cashiers have become important, as it dawns on each and every one of us just how lost we would be if they all just stopped doing their job. In my neighborhood, it is not just the hospital that keep the traffic flowing; it is the many workers, whose landscaping, painting, and construction trucks still leave every morning and come back late. They are essential, and they are busy.
This is not to say that we are always treating them so well. This morning, as my daughter approached the early morning checkout line after a triumphant quest for toilet paper, the man in front of her could not stop himself from screaming at an employee, who had been working hours before the early-morning senior hours, I am sure. What good did it do for him to curse loudly about the inadequate supply of hand sanitizer?
Ah yes, we can vent our frustration at this whole situation. We will probably snap once in a while at someone who does not deserve it. We may drive a little rudely, despite the relative lack of traffic. And we can still demean those who manage the tasks that we just do not want to do. I dare say that this sort of entitlement is a bad habit that took root in the heart of many people long before this current crisis.
Of course, many rise to the crisis, and remember to be thankful. We can order take-out and hope the neighborhood restaurant can stay afloat, and we can tip the Uber Eats driver a little extra for his willingness to risk his life in an attempt to maintain some income. We can have our kids draw pictures for the staff at Grandma’s assisted living. It is nice to do these things, to be generous, and to teach our children to be kind. But will we still remember when all this is over? Will we remember that these so-called “unskilled” workers were once so essential?
Only Anecdotal 