Apr 152020
 

Ed Yong writes in The Atlantic about what our Pandemic Summer might look like. It has a strong dystopian vibe: frequent testing for the virus, half-empty restaurants and classrooms, and intermittent lockdowns in the event of additional outbreaks. You probably won’t be able to see a ball game or attend a big family reunion anytime soon. This summer and the months beyond are going to be a time of uncertainty as we try to figure out how to live with the coronavirus until a vaccine is available.

Yong also points out that we will all need resilience to cope with what lies ahead; something that people with disabilities have been practicing for most of our lives:

The disability community has also noted that, at a time when their health is in jeopardy and their value is in question, abled people are struggling with a new normal that is their old normal—spatial confinement, unpredictable futures, social distance. “We know how to do community from afar, and how to organize from bed,” said Ashley Shew of Virginia Tech, who studies the intersection between technology and disability. “Instead of feeling this great vacuum, our social life hasn’t radically changed.” 

When people ask me how I’ve been doing during the quarantine, I shrug and say, “Fine.” It’s not that I don’t miss my friends and co-workers or going to the movies. I do, but it’s not like I had a packed social calendar before the pandemic arrived. Given the specifics of my disability, the lack of accessibility in much of our built environment, and my own introversion, I’m already accustomed to some degree of isolation. As long as I have a working Internet connection, I can find plenty of things to keep me occupied at home. And I have a nice view of downtown, which helps to keep the walls from closing in.

Right now, I’m not planning on visiting a restaurant or movie theater until this fall at the earliest. If I turn out to be wrong, great. A strategy of hoping for the best but expecting the worst might be the best approach for the next few months. For many of us with disabilities, such thinking is already our default.

Apr 102020
 

Well, all of this is pretty awful, isn’t it?

I’ve read and watched plenty of dystopian fiction over the years and I would idly wonder what it would be like to live through some kind of global crisis. And I guess I have my answer now. For me, the past four weeks have been a surreal blur as I watch a litany of horrors unfold on television and in my Twitter feed, punctuated by moments of anxiety or rage. I worry about getting sick (even though I I haven’t left my home in over four weeks). I’m being very careful to limit my contact with other people, but I can’t completely isolate myself because I still rely on a team of nurses for my daily needs. They are being incredibly conscientious about washing their hands and staying at home, but my risk of getting sick certainly isn’t nil.

And when I’m not worrying about my own health, I’m fuming at Trump’s boundless narcissism, stupidity, and incompetence. All of these traits were fully on display during his presidential run, but his supporters simply shrugged and handed the White House to a man singularly unfit for the office. And now here we are. Do you want to know what really sends me into a white-hot rage? Despite this administration perpetuating a clusterfuck of historic proportions, the fall election will still be a close affair because conservatives have convinced millions of Americans that any efforts to create a more humane society will turn us into communist zombies or some such bullshit.

In the midst of my anxiety and outrage, I need to remember how fortunate I am. I’m still employed and able to work from home. So many people are struggling with basic issues of survival and I’m fretting about politics.

I probably won’t be able to leave home for at least a few more weeks and I hope to do some more blogging during this weird time. Writing has always helped me clarify my thoughts and I haven’t done enough of it lately. In the meantime, please wash your hands and stay home as much as you can. You’re giving people like me a fighting chance to live through this pandemic.

May 062018
 

The Star Tribune reports on young people with disabilities who are forced to live in nursing homes because of a dire shortage of home care workers across the state. Medical Assistance (the Medicaid program that funds most long-term care for Minnesotans with disabilities) pays only $12-$13 per hour for personal care assistants, which is simply not enough to attract people to a demanding profession with variable hours. The most obvious solution would be to increase the pay of these workers and disability advocates are working hard to convince the Legislature to do just that. The legislative session ends in a couple weeks, so if you’re in Minnesota, please consider calling your state legislators to ask them to support a pay increase for PCAs so that people with disabilities aren’t forced into lives of isolation.

Plenty of people with disabilities (including me) live with the nagging fear that we could end up in an institution because of a lack of adequate staffing. I’m fortunate to have a devoted team of nurses caring for me, but it would only take the sudden loss of a couple nurses for me to face the imminent possibility of life in a facility. Articles like this remind me both of how lucky I am to live at home and that my independence hangs by a tenuous thread. I’m also regretting that I read some of the nasty, dismissive comments that accompanied the article–Ayn Rand has no shortage of acolytes around here. I remain hopeful that lawmakers will recognize that they must act to preserve Minnesota’s position as a leader in supporting people with disabilities, but we need to make some noise to ensure this happens.

Feb 282018
 

While Trump pretends to play dealmaker again, his cabinet continues to demonstrate that they are really bad at hiding their corruption. The Times reported yesterday that the Department of Housing and Urban Development spent $31,000 on a dining room set for Secretary Ben Carson’s office. This news comes on top of previous allegations that Carson used his position to secure government contracts for his son.

These people are just the fucking worst. While Carson was busy redecorating his office, his agency proposed steep cuts to housing programs for the poor and the elderly. I’m sure Carson doesn’t see any hypocrisy in his actions, which is the whole problem. Trump’s appointees seem happy to treat their positions of public service as personal fiefdoms with no care for how their actions might violate the public trust. In fact, they work diligently on plans to undermine the core missions of their agencies.

I have no doubt that Carson was once a talented surgeon, but he’s also a grifter. His presidential campaign was little more than a scam to line his pockets and he can’t seem to turn down another opportunity to scam the American people.

Feb 182017
 

As expected, House Republicans announced on Thursday their plans to cap Medicaid as part of their broader effort to repeal and replace the Affordable Care Act. Medicaid would be transformed from an entitlement program that covers anyone who is eligible to a fixed amount of funds. This fixed amount of funds would not be sufficient to keep pace with rising health care costs or increased need for Medicaid during economic downturns, forcing states to make some combination of cuts to eligibility, covered services, and payments to health care providers.

One of the most disturbing aspects of the plan is that it pits vulnerable people against each other in a scramble for pieces of a diminishing pie. Republicans portray this as an effort to save Medicaid for “the most vulnerable,” but that’s a lie. Everyone–kids, people with disabilities, the elderly, and poor adults–would suffer as a result of these radical changes to Medicaid. Minnesota alone would face budget deficits in the billions of dollars because of these cuts and the consequences would be felt by a wide swath of my fellow citizens. Republicans aren’t really interested in “saving” medicaid for us poor cripples. They view Medicaid as a huge redistribution of wealth that must be cut as deeply as possible for the sake of free-market principles and survival of the fittest. I’m sure that they would protest this characterization, but it goes to the heart of their ideology.

Of course, this policy fight is personal for me. Medicaid has provided me with the supports I need to live an independent and productive life. If the Republican plan becomes law, I could lose some or all of my nursing care. Minnesota could eliminate the buy-in program that allows me to purchase Medicaid coverage and earn an income, forcing me to quit my job as an attorney. It’s conceivable that I could even end living in an institution. These are scary prospects for me, but millions of other people will be facing even more calamitous prospects if they lose their Medicaid coverage. As I’ve noted before, those of us who depend on Medicaid for our survival can’t allow ourselves to be divided in this fight. If that happens, we will have already lost.

This is only the opening shot in the war on Medicaid. Formal legislation has yet to be introduced and it must go through a lengthy process before it becomes law. But in the meantime, we need to tell our stories to our representatives and senators. They need to understand how Medicaid has made our lives better and how funding cuts could make our lives worse. Those stories need to be told via phone calls to congressional offices and at town hall meetings with your representatives. If enough of us tell our stories, we may be the ones who actually save Medicaid.

Dec 152016
 

It’s only now that I feel like I can write about the election and its aftermath with any degree of perspective. I was wrong about so many things; things that maybe should have been more obvious at first blush. I thought Clinton’s experience and competence would compensate for her lack of charisma and aloofness. I thought that bragging about sexually assaulting women was far more disqualifying than e-mail mismanagement. I thought that the Obama coalition would turn out in droves to defeat a flim-flam man with no prior political experience and a penchant for manic tweeting.

In the weeks since the election, I’ve been watching a lot of Seinfeld and doing my best to avoid my Twitter feed. Reading the news has become a grim exercise in endurance. Ben Carson will be in the Cabinet? The guy who ran Breitbart will have an office in the White House? The president-elect is dismissing reports that Russia may have hacked our political process to give Trump an advantage? This would all be hilarious if it wasn’t, you know, actually fucking happening.

So now what? Perhaps Trump will turn out to be just a generic Republican, which is still pretty awful. Perhaps he’ll resign after a year or two because he’ll be unable to reconcile his authoritarian tendencies with his pathological need to be liked. Whatever happens, progressives will need to figure out how to mount an effective opposition to this administration. Republicans wrote the playbook on this and we shouldn’t hesitate to use their own tactics against them. Any efforts by Trump to shred the social safety net, undermine efforts to prevent climate change, or cut taxes on the wealthiest among us must be met with the staunchest resistance. We can try to work with Trump when he has some genuinely good ideas, but I’m guessing that will be a rare occurrence. Too much progress has been made in the last eight years and too much remains to be done.

This blog will be a very small part of that resistance. If nothing else, it will serve as the chronicle of a snarky middle-aged guy trying to navigate Trump’s America. So buckle up, Dear Reader. We’re both in for a bumpy ride.

Apr 092015
 

Republican legislators in red states like Kansas and Missouri are doing their damnedest to ensure that poor people never experience one moment of fun or pleasure on the public dime. The Kansas legislature recently passed a bill that would prohibit people from using their cash assistance at pools, movie theaters, cruise ships, casinos, race tracks, and other businesses. It would also restrict them from withdrawing more than $25 per day from their benefit accounts. A Missouri bill would prevent people from using food assistance to purchase seafood, chips, soda, energy drinks, and cookies.

Some restrictions on public benefits make sense, but these bills seem largely motivated by moral panic and antipathy. Republicans generally regard poverty as the direct result of moral failings. Conservative ideology demands that people with moral failings be treated with a firm hand or they will continue to make bad choices. These bills also provide a troubling insight into the conservative imagination. They perceive poverty as fun. They think that poor people spend their days going to the movies, eating lobster, and taking the occasional cruise courtesy of the taxpayer. Their deeply distorted view of poverty leads to policies that only compound the stresses that poor people experience every day. It’s cruelty thinly disguised as paternalistic compassion. And in most red states, that cruelty is only becoming more entrenched.

 

 

Aug 292014
 

While I still play video games and enjoy them a great deal, I don’t consider myself steeped in “gamer” culture. I peruse gaming websites to learn about what’s new and what’s good, but I don’t have strong opinions on the latest World of Warcraft expansion or the merits of playing as a Monk versus a Barbarian in Diablo III. Gamer culture seems to require a certain amount of obsessive attention to detail that—if I ever possessed it—has faded away in my dotage. Gamer culture also has a tendency to become mired in bro-centric toxicity; a tendency that became depressingly obvious this week when feminist critic Anita Sarkeesian released the latest YouTube video in her Tropes vs. Women series.

Sarkeesian’s Tropes vs. Women series examines how video games portray women as ornamental objects, damsels in distress, and other stereotypical gender roles. The series has been ongoing for a couple years and Sarkeesian offers compelling evidence of persistent misogyny in games. Here’s the latest video, which is worth watching if you have any interest in games or feminist theory:

Sarkeesian’s critiques have provoked the kinds of responses you might expect from gamer bros: plenty of vitriol sprinkled liberally with rape and death threats. Sarkeesian had to leave her home this week after receiving specific death threats directed against her and her parents.

Gamer culture, like a lot of subcultures that flourish on the Internet, can be insular and exclusionary. That may partially explain the ferocity of the attacks; gaming has long been seen as a fringe activity that hasn’t received the same kind of critical analysis that is applied to film, books, and other media. But gaming is now a mainstream activity that has gained ample visibility in our culture. With the spread of mobile devices, nearly everyone has some contact with games. Why shouldn’t games be the subject of criticism? And not the kind of criticism that determines whether a game is fun to play, but the kind of criticism that examines games as a reflection of our values and mores. In other words, the kind of criticism that adults debate and discuss.

Unfortunately, some gamers don’t have much patience for critical theory. They perceive criticism as a trespass on their dominion and worthy of vicious retribution, particularly when the source of that criticism is a woman. They don’t want to see their favorite pastime grow up, which is exactly what will happen because of the efforts of Sarkeesian and other smart people. The attacks on her will certainly continue and they will be as ugly and brutal as ever, but they will eventually be seen as the death throes of a particularly toxic subculture that deserves no memorial.

 

Mar 102014
 

This week’s must-read is a devastating article in the Times about the exploitation of several men with cognitive disabilities who, until recently, lived in Atalissa, Iowa. These men were brought to Iowa from Texas institutional facilities decades ago to work in a turkey processing plant. The company boarded the men in an abandoned schoolhouse and paid them $65 dollars per month to work long hours doing dangerous work that left many of them with serious health problems. At the schoolhouse, they lived in squalor and were treated like children by the live-in supervisor and frequently abused and neglected. They were never given a choice as to where they might live or what other work they might want to do. This mistreatment continued for years despite family members and town residents asking the state to investigate the matter.

The disability rights movement has accomplished a great deal, but like most civil rights movements, its victories have not been evenly distributed. The true scope of the abuse these men suffered was not discovered until 2009. Several townspeople quoted in the article suspected something might be wrong, but said nothing. Some of that can be attributed to plan old Midwestern reticence, but it can also be attributed to the unconscious marginalization of these men because of their disabilities. Nobody intervened because nobody really wanted much to do with these guys. And those attitudes persist far beyond Atalissa’s borders.

Oct 152013
 

Now that a debt default is more than a remote possibility, I’m trying to devise a barter system for paying my nurses. Lacking any livestock or a hidden cache of gold bars, I may have to pay them in Pringles and electronics, assuming electricity is still a thing in a blighted post-default hellscape. Now, where did I put the spikes for my wheels? I need to get them installed before the roving street gangs get too cocky.