Category Archives: Disability

Unequal Exposure

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On April 29, I will be moderating “Demanding Equity: Planning for Post-Disaster Recovery,” a 45-minute session in a special three-day virtual conference of the American Planning Association, NPC20 @HOME. The online conference is an attempt to replace the experience of the canceled National Planning Conference, which would have taken place in Houston, April 25-28. For the first time in APA history, the annual event will not go forward as planned. Like numerous other conferences, it was untenable to assemble thousands of participants in the middle of the coronavirus pandemic. But it is possible to provide a decent educational opportunity in its place by broadcasting and recording distance learning and letting participants ask questions remotely.

But why do I mention this one session, when APA is offering two dozen? Because it touches on some issues so central to the social and economic impacts of coronavirus, and speaks so directly to what planners and planning can do as we recover from this experience, that I wanted to highlight the subject in this post. It has been said often that the coronavirus does not discriminate. That may be true, but our society has done so and still does, often in ways people are reluctant to consider or admit. The result is that, as happens with most disasters, minorities and low-income people, those with fewer opportunities in life or greater exposure to danger, are disproportionately affected. And so it will be when the histories of this pandemic are written. The evidence is already stark enough for passionate discussion.

To give credit where it is due, the session was the brainchild of Adrian Freund, a veteran, semi-retired planner in Oregon. Before the NPC was canceled, however, Adrian was hospitalized (not because of coronavirus) and realized he would be unable to go to Houston. He reached out through a former president of APA, David Siegel, also of Oregon, to ask me to take over, and I agreed. We are on the same page on this issue. When APA decided to replace NPC with NPC20 @HOME, this was one of the sessions they felt must be included, and I reassembled the speakers to modify our plans for the new format.

All of them have a ton of wisdom to contribute on the subject. Shannon van Zandt is a professor of urban planning and department head at Texas A&M, and has authored numerous articles and led many projects on subjects related to equity in disaster recovery, particularly in the Texas context in which she works. Marccus Hendricks, an assistant professor of planning at the University of Maryland, is a Texas A&M graduate who has focused on infrastructure issues and environmental justice, writing his doctoral thesis on stormwater management in Houston. Chrishelle Palay is director at the HOME Coalition in Houston. Obviously, the panel has strong Texas roots, but there are few states where one can get better insights into the impacts of environmental inequities.

But it is the screaming headlines of the past week that have brought renewed attention to the issue in the context of coronavirus. In Chicago, we have learned that African Americans are dying from the virus at six times the rate of whites. Gary, a predominantly African American city, is the new coronavirus hot spot in Indiana. It is also where it gets personal for me. A 12-year-old granddaughter lives there and, as of yesterday (April 10), appears to have COVID-19 symptoms. Her mother called and was asked not to bring her to a hospital, but to isolate her at home. She will not be tested because, as everywhere else, this nation has not gotten its act together on testing. Will she even be included in the statistics, then, as a known case? Good question. I have no idea how Indiana is tallying such numbers. But she is in for a rough ride in the immediate future, and Gary and surrounding Lake County are certainly not fully prepared.

But what is happening in Chicago, as numerous commentators and public health officials have noted in the past week, is not only not unique, but to be expected. Detroit is emerging as a hotspot with major disparities in racial impact. State health data reveal that, while blacks make up 14 percent of Michigan’s population, they account for one-third of the cases and 40 percent of the deaths so far. In Louisiana, with one-third of the population, blacks account for 70 percent of the deaths. New Orleans has clearly emerged as a southern hot spot for coronavirus infections. Across the nation, one can find similar racial disparities.

Beneath those figures, however, are other disparities that weave in and out of racial and ethnic numbers. Age is perhaps the best-known factor, but so are many others. People in low-income service jobs, for instance, to the extent that they are still working, are more dependent on public transit and much less likely to be able to work from home like white-collar professionals. Public transit contributes greatly to mobility in urban centers, but does little for social distancing. It is still unclear just how transit will be affected for the long term, although it remains a vital link to jobs for many of the working poor. But coronavirus is clearly challenging the economic viability of many transit systems, one reason they were the target of assistance in the CARES Act.

It goes without saying that health care workers are significantly more exposed, but they are not just doctors. Their ranks include nurses, nursing assistants, and many others, some with much lower incomes, who nonetheless are risking their lives every day. Some of them work in nursing homes, which have not been the focus of any noticeable attention at the federal level. There are many ways to slice and dice the data to identify patterns of exposure, including those for access to health care, quite possibly the single most important factor driving disparities in this particular disaster. Lack of insurance coverage and inability to afford adequate health care leave many people untouched by the system and untested until it is too late. Poor or nonexistent health insurance coverage, especially for undocumented immigrants, accompanied by food deserts in many inner-city neighborhoods, endemic poverty in many rural areas and small towns, and exposure to job-related ailments, can produce numerous chronic conditions that make exposure to a new virus fatal or disastrous instead of merely survivable.

It remains remarkable, in view of these factors, that the Trump administration can maintain its drumbeat of opposition to the Affordable Care Act, including the recent refusal to allow newly jobless Americans to sign up for coverage. But this is one of many ways in which this nation, through both federal and state policy, continues to resist expanded, let alone universal, health care coverage to shore up health care deficiencies for the most vulnerable among us. There is both a meanness and short-sightedness that underlies much of this resistance. As I noted just two weeks ago, these health care vulnerabilities, with all the racial and socioeconomic inequities they embody, form the weak links in the chain of overall vulnerability for our communities when pandemic strikes.

And that brings me back to the point of the session I will moderate. One essential element of the planner’s skill set should be demographic analysis. The coronavirus pandemic highlights the critical value of addressing public health in comprehensive plans and other efforts to chart the future of cities, counties, and regions. Issues of national health care policy may be well beyond the reach of planners and their communities, but exposing the glaring disparities that have been made evident as the data on coronavirus cases grows is critical to knowing how resilient our communities are or how resilient we can make them. Access to health care is not merely a matter of insurance, as important as that is. It is also affected by the practices of local hospitals, the access to open spaces for densely populated areas, environmental regulations controlling industrial pollutants, public education around personal health, access to healthy food, the quality of our food distribution systems, and a myriad of other considerations that can be addressed to one degree or another through local or regional planning and through policy commitments to social equity.

That is precisely why, as the White House dithers, and federal management of the coronavirus crisis continues to fall short, dozens if not hundreds of mayors and governors and other local and state officials have stepped up to fill the gap. It is sad that there is not better national leadership in this crisis, but we are learning who our real leaders are. Enabling planners and other policy makers to support those officials with essential and meaningful data is an ongoing task, but if we are going to emerge from this disaster in a better place, identifying the inequities that weaken our communities and finding ways to build resilience across those weak links is going to be essential. There is no good alternative.

Jim Schwab

“For God’s Sake, Don’t Repeal It”

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Overflow crowd attends health rally at SEIU-HCII hall.

Overflow crowd attends health rally at SEIU hall.

“Six weeks ago,” said Sen. Dick Durbin, the Illinois Democrat who is assistant minority leader in the U.S. Senate, “I got a call from Burlington, Vermont.” It was Sen. Bernie Sanders, who told him “we need to rally in cities across the U.S.” to preserve health care for Americans. Sanders, though falling short of the Democratic nomination last year against Hillary Clinton, showed a noteworthy capacity as a prescient organizer. He clearly anticipated the assault that the new administration and congressional Republicans have now launched against the Patient Protection and Affordable Care Act (ACA), popularly known as Obamacare. And so today, five days before Donald Trump will be inaugurated the 45th President of the United States, rallies to preserve the ACA took place. Durbin spoke in Chicago at the overflowing hall of the Service Employees International Union (SEIU), Health Care Indiana-Illinois (HCII) unit.

Line forms at the back of the building. It got much longer.

Line forms at the back of the building. It got much longer.

My wife and I arrived about 15 minutes before noon, parked our car in the lot behind the building, and joined a long and rapidly growing line of people seeking to attend the 1:00 p.m. rally. Limited by fire code, the SEIU staff had to cut off the number of people entering, directing the rest of the crowd to a Jumbotron behind the building. We were lucky, among the last 25 people allowed inside, and the line behind us stretched around the corner. Clearly, the Republican attack on health care had stirred a hornet’s nest, at least here in Chicago.
Durbin was the leadoff speaker following an opening by Greg Kelley, executive vice-president of SEIU-HCII. With

U.S. Rep. Jan Schakowsky posing with followers.

U.S. Rep. Jan Schakowsky posing with followers.

him were several Chicago area Congressmen—Reps. Mike Quigley, Jan Schakowsky, Brad Schneider, and Raja Krishnamoorthi, all Democrats, along with Cook County board president Toni Preckwinkle. Durbin cited the statistics that reveal the origin of the angst driving the overflow crowd. He noted that some 1.2 million people in Illinois stood to lose their health insurance coverage if the ACA is repealed, roughly 10 percent of the population. The ACA saves seniors in Illinois an average of $1,000 per year on prescription drugs. People stood to lose the ACA’s protection against lifetime limits on coverage, which in the past often led to bankruptcy for people with catastrophic illnesses like cancer.

“The Affordable Care Act was the most important vote I have ever cast as a member of Congress,” Durbin concluded. “If the Republicans can’t replace it with something as good or better, for God’s sake, don’t repeal it.”

A true citizen uprising needs more than politicians at the podium, and union leaders, such as SEIU president Mary Kay Henry, health care consumers, representatives of Planned Parenthood and a small business alliance, and others, including the Rev. Jesse Jackson, kept the standing-room-only crowd revved up. Tracy Savado, introduced as a health care consumer with a story to tell about lifetime coverage caps, shared that her husband had been diagnosed with an acute form of leukemia. Fearful of lacking enough insurance, she inquired of her insurance company representative about this point, and, she said, was told that President Obama’s health care law had done away with such limits. Prior to the ACA, she noted, about half of all insurance policies had lifetime caps on coverage. She added that she had recently attended a farewell for outgoing Health and Human Services Secretary Sylvia Burwell. Asked what might happen in the new administration, Savado said, Burwell paused and noted that the biggest obstacle to the GOP plan for repeal is “people sharing their stories” about the benefits they have enjoyed from the new law. “When people understand what’s at stake, they aren’t going to want repeal,” she concluded.

Many of the other speakers essentially made many of the same points in different ways for almost an hour and a half, until William McNary, co-director of Citizen Action Illinois, ended the rally on a boisterous note with a rousing speech in which he declared that “the only pre-existing condition the Republicans want you to have is amnesia.”

His comment is a powerful point that is worth remembering in considering how matters came to this pass. More than a few Americans who voted for Trump in the recent election are also benefiting from Obamacare. While people clearly can and do vote on issues other than health care, it remains undeniable that this constitutes some form of contradiction that requires explanation. Even amid the 2010 debate that ended with the passage of the ACA, Tea Party rallies often featured protesters with signs that read, “Keep your government hands off my Medicare.” What sort of stunning ignorance is required to fail to understand that Medicare was and is a creation of the federal government by a vote of Congress in the 1960s and that, absent the “government hands,” it would never have come to be in the first place?

Recent polls have shown overwhelmingly that voters favor virtually all the key features of the Affordable Care Act even as many nonetheless oppose whatever they perceive as “Obamacare.” A post-election Kaiser Health Tracking Poll found public support at 80 percent oDSCF3283r above for ACA provisions allowing young adults to stay on their parents’ insurance plans, eliminating most out-of-pocket costs for preventive services, subsidies for low-income insurance purchasers, and state  options for expanding Medicaid, as well as 69 percent for prohibition of denial of insurance because of pre-existing conditions. Only 26 percent want the law repealed. What we have faced since 2010, and must confront now, is not a real plan to replace Obamacare with something better, but an incredibly slick campaign of propaganda to associate the word Obamacare with something evil.

People who come to terms with the origins of such contradictions may find themselves in a better position to understand the remarkable political gall required for the Republican majority in the U.S. House of Representatives to pass repeal in recent days without offering a clue as to what will replace Obamacare. “Repeal and replace” was Trump’s campaign mantra, yet even he has offered no details of consequence about what that will mean even as he insists Congress will somehow do both within the next few weeks. Anyone who believes that can be done by a party that has failed to define an alternative for the last six years is truly prepared to believe in political miracles.

It would be more realistic to look closely at Trump’s nominee for Secretary of Health and Human Services, Rep. Tom Price of Georgia, a man who advocates replacing much of current Medicare coverage with a voucher system and is devoted to dismantling Obamacare. Read his intentions closely, get angry, and organize.

Jim Schwab

Just an Ounce of Empathy

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Free clip art from Bing.com

Free clip art from Bing.com

Disability was one noteworthy theme during the presentations Monday night at the Democratic National Convention—how we perceive it, how we react to it, how we treat those with serious physical and mental limitations. It is no small subject, and Republican presidential nominee Donald Trump did himself no favors earlier in the year with his mocking imitation of a New York Times reporter, which the Democrats have already been using in ads to question his character. And rightly, for it does make you wonder what prompted such an immature outburst.

But I am not writing to dwell on the missteps of Trump, nor on the virtues of Hillary Clinton in this regard as extolled by speakers with disabilities on the stage in Philadelphia. That comparison is one of many people can decide for themselves. I am about to suggest a simple way of thinking about the issue that all of us can readily use even if we are not among the estimated 56 million Americans afflicted with such shortcomings.

It may be apparent to some that this blog suffered a short hiatus on my part since my last post. To some extent, that was because I found myself very busy chasing deadlines after my return from the Natural Hazards Workshop in Colorado on July 14, a day later than anticipated because of a flight cancellation due to storms in Chicago. I was then squeezed for time, with just six work days left until taking a vacation this week, with two of those largely devoted to participating in a U.S. Environmental Protection Agency symposium on urban sustainability. Nonetheless, by last Friday, I managed with some extra effort to clear the most urgent action items from my desk in preparation for a week off.

Then it hit. Maybe I was more vulnerable because of the time pressures, or maybe it was just something that caught up with me. There is no way to know, but my neck grew tight, and by the time I got home, fever and chills set in and my wife insisted on taking me to the emergency room. After three hours of tests and x-rays, strep and tonsillitis and similar problems were ruled out, but it was clear my right-side lymph nodes were inflamed and some sort of infection had taken residence inside my throat. The doctor gave me antibiotics, which I am taking for ten days, and they seem to be effective. But the illness certainly ruined an evening in which I was going to get a haircut and shop for groceries for an outdoor barbecue party in our backyard for my wife’s birthday on Sunday. I was pretty useless on Saturday, worn down and unable to swallow or talk without considerable effort, although I did help shop for groceries, including a birthday cake. I was not good for much more, and I was growing hungry because eating was such a chore.

That remained the case for much of Sunday, though I was energetic enough by then to join the party. I did not have nearly enough energy to play grillmaster in the hot sun, so someone else took over who enjoyed the job, fortunately. But all I could eat and swallow was watermelon and some cake and ice cream, none of which excessively challenged those inflamed lymph nodes.

Why share all this? My illness will pass, but when I watched Anastasia Somoza, a quadriplegic who also suffers from cerebral palsy, discuss attitudes toward disability on stage Monday evening, it reminded me of a thought I have had before. What if the condition I was suffering temporarily were something I had to live with permanently? How would I want to be treated? How would it make me feel, and how would it affect my outlook on life? Admittedly, a viral or bacterial infection generally does not leave lasting impacts, but there are other ways all of us can at least project ourselves into such situations to begin to understand how it feels to be the perennial underdog in life.

This thought actually first occurred to me more than 15 years ago, when I suffered a debilitating herniated disk in my lower back as a result of lifting a box of books the wrong way after having our house repainted. The pain was immediate and agonizing. I had to grab the rails to ascend and descend the stairs in our three-story house. Although I never needed surgery, and I am very glad because back surgery is generally brutal and barbaric (my father underwent it in 1968), I did undergo three months of strenuous rehabilitation therapy that required the discipline on my part to do sets of exercises three times daily between therapy sessions. I was determined not to suffer permanent impacts from the injury and followed the routine to the letter, ultimately achieving release from therapy two weeks early. There is a great deal to be said for willpower, and there is nothing wrong with having the pride in one’s willpower to struggle through such a situation successfully, as I did. I soon resumed jogging, and the experience is certainly a factor in my ongoing effort to remain physically fit.

But there is a great deal wrong with thinking we are better than anyone else because of such success. There is a great deal right with using such examples to encourage others faced with similar circumstances. The one thought that stuck with me afterwards was, What if I had not been able to recover successfully? What if I had suffered a permanent injury, like many veterans or just those born with serious physical limitations over which they never had any control? I know how humbling it was even for those three months to be unable to sleep in comfort, to be wary of being bumped by anyone in close quarters, and the challenge of climbing stairs. It does not seem so hard to me to be able to extrapolate that sort of experience into some empathy for those who may never be able to function as fully as the rest of us.

So, as you listen to this whole discussion about disability rights and how we treat each other, remember that this ought not to be a partisan matter. It was a Democratic U.S. Senator from Iowa, Tom Harkin, one of my personal heroes, who introduced and fought for the Americans with Disabilities Act, and it was a Republican president, George H.W. Bush, who signed it. Harkin was motivated in part by the experience of his younger brother, Frank, who was deaf. Disabilities cross party lines and so should our empathy and understanding of what it takes to include and respect all those who face challenges. By now this should be as settled an issue as universal suffrage and the abolition of slavery. Let’s be human, folks. In this particular instance, it does not take much to imagine ourselves in someone else’s wheelchair. Just think of the extraordinary exertions on behalf of others of one of our famous past presidents—Franklin D. Roosevelt. Enough said.

 

Jim Schwab