Tag: Intellectual disability

When a caregiver leaves

For the fourteen years that I knew my mother-in-law Janice, she would sit at her computer for hours doing her bookkeeping working or just playing solitaire. Her son Vincent would sit quietly beside her, keeping her company. Then Janice passed away. Pretty soon, he kept Veronica and I company in the same way, for the time he lived with us. More recently, for the almost-six years that he has lived in a group home near our house, he has sat quietly beside the night manager Carol, while she has done her own computer work and play. Carol and Vincent have a special relationship.

Carol has firm opinions about things. She and Vinnie squabbled frequently, often when he was caught cutting corners on some rule. We sometimes squabbled with her, too. There’s awkward negotiation and role conflict regarding various details of Vincent’s care. She was away for awhile on sick leave after some surgery. The guys missed her terribly.

We called her last weekend to get a phone number. She surprised us with the news that she will be leaving her position. Like so many black women caring for other people’s loved-ones, she’s had to move on. Not for the first time, no one quite knows the right thing to say. “Thank you for everything” is essential, but leaves so much unsettled and unsaid.

Through circumstances that were beyond her control, she would not be able to say goodbye in person. So she asked one thing: Would we please tell Vincent that she will miss him terribly, but that she won’t be able to see him anymore. Would we also say goodbye to my two daughters, whom she has come to know? Veronica and I spoke with Vincent about it. A staff member had already gotten the guys together. She broke the news to them, rather in the way one tells small children about the death of a close relative.

Vincent is resilient and hungry for human connection. So he will soon find a new person to keep company with before he kicks in for the night.

Vincent’s not saying much about it. That’s his way. I’m helping him pen a goodbye card, as we’ve done when others have passed through his life. Given the low pay and the difficult working conditions in direct care work, he’s experienced this before.

At some random moment long in the future, he’ll say: “I miss Carol.” I’ll say: “Me, too, Vin. Me, too.”

Remembering a great moment in the life of Ladies Home Journal

After 130 years, Ladies’ Home Journal will cease monthly print publication. The magazine still has a circulation of 3.2 million. Yet its aging reader base and the generally disastrous magazine financial ecosystem has undermined this flagship publication, a leader among the “seven sisters” that once dominated this segment of the business.

Every type of journalism has a craft to it, offering opportunities for excellence and contribution the outsider easily overlooks. That is certainly true of Ladies’ Home Journal and other women’s magazines.

Cover, Ladies Home Journal, May 1, 1950

It’s tempting to overlook some terrific journalism millions of readers found in these pages. When the moment is right, women’s magazines could ratify—and thus propel—larger social changes, too.

One such moment occurred on May 1, 1950, when Ladies Home Journal printed a taboo-breaking article by Pearl Buck called “The child who never grew.” Buck recounted her gradual discovery of her daughter Caroline’s intellectual disability, and describes her painful decision to institutionalize Caroline at the age of nine within the Training School at Vineland, New Jersey.

More here, from me, at the Washington Post Wonkblog section.

Some actual bipartisan legislation to help people living with disabilities

My latest at Wonkblog.

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Veronica Perrone Pollack and Vincent Perrone, blowing out the birthday candles.

The Achieving a Better Life Experience (ABLE) Act would allow people with disabilities and their families to establish 529-style accounts for education, transportation, and other expenses. Identical versions are co-sponsored by seventy senators and by 359 members of the House. It’s amazing to see Senators Bernie Sanders, Jay Rockefeller, Mitch McConnell, and James Imhofe co-sponsoring the same bill.

In an era so disfigured by mean-spirited and polarized gridlock politics, this is no little thing. More here.

Lawrence Summers as Fed Chair: The View From Climate Policy

Lawrence Summers: Does The Emperor Have Any Clothes?
Lawrence Summers: Does The Emperor Have Any Clothes?

Lots of debate in Blogistan and elsewhere about President Obama’s apparent desire to appoint Larry Summers as Fed Chair.  We know (or at least we think we know) that he is brilliant, but he has a strange tendency to get matters of judgment wrong.  He supported the abolition of Glass-Steagall, endorsed deregulation of the financial industry, and seems to have little desire to admit that he got these things wrong.  Plus, there are sexist overtones to the seeming refusal to want to appoint current Fed vice-chair Janet Yellen, an outstanding economist in her own right.

All right.  But what does this have to do with climate policy?

Interestingly, a few years ago, Summers participated in a Council on Foreign Relations task force regarding climate policy options.  Like all CFR task forces, this one was self-consciously centrist, chaired by former New York Governor George Pataki (relatively moderate Republican, especially on climate issues) and former Iowa Governor (and now Agriculture Secretary) Tom Vilsack (moderate Democrat).  Its report, Confronting Climate Change: A Strategy for US Foreign Policy, is a quite comprehensive view of the stakes of climate policy, at least as of June 2008, when it was written.  It recommends putting a price on carbon, reducing emissions to the Kyoto level, and several other policy options.  Summers signed it.

But interestingly, Summers also appended a very short “comment” to the report, which says something about potential behavior as Fed Chair (how much is up to the reader).

Here are the two key graphs of his comment:

I have signed this report because it makes the need for urgent action on climate change clear and presents a smart and thoughtful agenda for reducing U.S. emissions, building international consensus, and promoting international action, with which I broadly concur.

The Task Force rightly notes that the costs of addressing climate change are highly uncertain, but I remain concerned that many policymakers do not sufficiently appreciate how large these uncertainties are or the consequences of paying them insufficient attention. Environmental certainty enjoys much attention while uncertainty over the cost of cutting emissions receives too little. This balance is wrong, particularly in the short term, since emissions in any given year matter little, while high costs, even for a short period, can cause substantial economic harm, particularly to the most vulnerable.

A few things jump out here:

1)  Summers gets the politics of climate change exactly 100% wrong.  The gravamen of his argument, i.e. “we are hurtling toward overregulation in the climate sphere” was wrong at the time and has been proved to be completely inaccurate.  To the extent that a Fed Chair has to be cognizant of political trends, this is not a good sign.  Anyone can get political prognostication wrong: but to go out of your way to get it wrong is a black mark.

2)  Summers makes no real substantive contribution in his comment.  He seems simply to want to emphasize, “I am thinking about things that no one else is.”  This on a task force with some of the leading thinkers in the field.  This does not bode well for a position like Fed Chair, which requires building consensus.

3)  He was wrong about what other people are thinking about.  Scholars and policymakers have been thinking about uncertainty all the time and had done so for more than a decade.

4)  To the extent that his emphasis on short-term costs and long-term benefits is a sub silentio call for a carbon tax, he was also wrong about its salience: the carbon tax idea was being promoted literally by dozens of scholars and policymakers.

5)  To the extent that his emphasis on short-term costs and long-term benefits is a restatement of the need of a high discount rate, it is not backed up by any facts or reasoning.  It also is wrong on the absence of short-term costs.

I keep hearing that Summers is a very brilliant man, and would do a wonderful job as Fed Chair.  To the extent that his intervention in climate policy is any indication, there is absolutely no evidence of this, and in fact the evidence demonstrates the opposite.  I’m assuming for the time being that the Emperor has clothes: but it would be nice to see them eventually.

A word about Alex Karras

Most reports of Alex Karras’s death noted that he had dementia, but not that he attributed his dementia to his years playing in the NFL. Nor did they mention that he was one of the players suing the League for concealing what it knew about the long-term effects of concussion. These omissions do a disservice to Karras, to his family, and to all of us who love football.

I grew up watching the Colts, by which I mean the BALTIMORE Colts of the 1960s, of Johnny Unitas-Ray Berry-Lenny Moore fame. (If you don’t recognize the names, just trust me: we shall not see their like again.) That team included the tight end John Mackey. So when I saw a bit of news tape showing Mackey sitting in a nursing home while his wife tried to help him recognize himself-himself!-in his football jersey, I was sickened by the damaging effects of the sport I love to watch. Later that year Mackey died of fronto-temporal dementia; but still I kept watching.

Six months before, a member of my beloved 1985 championship Chicago Bears had killed himself, leaving behind a plea that his brain be autopsied. Dave Duerson too proved to have had extensive brain injury, in the form of chronic traumatic encephelopathy; but still I’d kept watching.

I thought of both men when I heard of Karras’s death, and it finally took. No matter how exciting and graceful the game-and, having been taught to watch it by my father, I’ve relished both the excitement and the grace for nearly 50 years-their lives are too high a price to pay. It’s time to stop watching.

A simple question regarding the Republican platform

I don’t believe in screaming about abortion. I will just say that I find the GOP platform-and Romney and Ryan’s positions here-both extreme and inhumane.

Peter Hamby of CNN reports:

The Republican Party is once again set to enshrine into its official platform support for “a human life amendment” to the Constitution that would outlaw abortion without making explicit exemptions for rape or incest, according to draft language of the platform obtained exclusively by CNN late Monday.

“Faithful to the ‘self-evident’ truths enshrined in the Declaration of Independence, we assert the sanctity of human life and affirm that the unborn child has a fundamental individual right to life which cannot be infringed,” the draft platform declares. “We support a human life amendment to the Constitution and endorse legislation to make clear that the Fourteenth Amendment’s protections apply to unborn children.”

As I understand it, Governor Romney believes in exceptions for rape and incest. Paul Ryan does not. 

Here’s a question that doesn’t arise all the time, but does arise in a heart-rending number of cases. Intellectually disabled young women sometimes become pregnant.  A pregnancy may be the result of a physically coercive act. It may be the result of statutory rape. It may be a purely unintended pregnancy within a consensual relationship with a casual or long-term partner.

Obviously such pregnancies pose difficult issues for both these young women and their caregivers. Not surprisingly, many woman and their families decide that abortion is the best option. As I understand it, Representative Ryan supports the Republican platform, which would outlaw abortion in each of the above situations. He would therefore require the young woman to proceed with her pregnancy. Governor Romney would make an exception for rape, but would otherwise do the same.

I don’t believe in screaming about abortion. There are good people on many sides here. I will simply say that I find Ryan and Romney’s positions to be both extreme and inhumane. I trust that the American people will have the decency to reject this platform, and the two men who endorsed and helped to craft it.

On Tuesday, there will be another pointless execution

I can understand why there is some disagreement about whether convicted murderer Marvin Wilson fits the strict legal standard of mental disability. I can’t understand why Texas is so hell-bent on killing this obviously limited man

Over at ThinkProgress, Ian Millhiser notes that Texas plans to execute Marvin Wilson the day after tomorrow. As the Grio’s Zerlina Maxwell reports, “Wilson was diagnosed with mental retardation by Dr. Donald Trahan, a court-appointed, board certified neuropsychologist with 22 years of clinical experience as a mental retardation specialist.” Texas, however, employs a more stringent standard. The case received national attention after Wilson’s lawyer missed a critical filing deadline which a federal appeals court had ruled prevented it from considering this issue. The case should receive national attention by raising a simpler question:  What does Texas hope to accomplish through the ritual sacrifice of this profoundly limited man? Continue reading “On Tuesday, there will be another pointless execution”

Fear of falling*

Our meritocratic elite fails the wider society by tolerating excessive inequality. By failing to protect some of their own kids from precisely the same inequalities, these elites have failed themselves, too.

My brother-in-law looked on with pride and sadness as we packed my oldest daughter’s things for her freshman year at the University of Wisconsin at Whitewater. (She’s leaving a bit early for an intensive summer class.) “I’ll go with her,” he said. Once again, Vincent offered that he would live in a frat house, work as a bartender, become a football coach, get married, have children. I smiled and listened, as I always do. Then he stopped for a moment, and just said. “She’s leaving. I stay here.”

“Here” means the local group home. He likes it there, but he knows precisely what he has lost. Every milestone—a child’s first cellphone, the high school dance—elicits from him, and therefore from us, that same aching mix of joy and mourning. Because of my job, Vincent can live a less Spartan existence than his housemates. We still rely on imperfect medical and social services in Chicago’s southland. We see close-up, more often than most people, how truly disadvantaged people struggle to get by.

When my wife became Vincent’s full-time caseworker, driver, and nurse, that ended whatever possibility we had to join the ranks of the truly affluent—a group that includes a surprising numbers of my Princeton classmates and professional peers.  We’re doing fine, thank you.   One can live just as happily in a $250,000 house as in a $500,000 one. Still, a de facto six-or-seven-figure write-off provides a distinct perspective on the meritocratic rat-race, and one’s own vulnerability in a tough economy.

I’m enjoying Chris Hayes’ Twilight of the Elites. Hayes excoriates our nation’s insulated meritocratic elite, which he argues wrongly replicates its own privilege through access to fancy secondary schools, test prep courses, alumni donations, and more. Hayes describes a frantic, often zero-sum competition for positional goods in which dramatic inequalities among parents thwart fair competition and equality of opportunity in the next generation.

I basically agree with this critique. Yet something is missing in Hayes’ account, too. Many of us who comprise that meritocratic elite nonetheless take life torpedoes that puncture the arrogance and privilege he describes. Of course, our family experienced an extreme and unusual life event. Other privileged people experience a much more common challenge. Not every faculty brat or privileged Winnetka kid fares well in this meritocratic competition. What then? Continue reading “Fear of falling*”

Home health care workers—more than “companions” and helpers

A group of Senators wish to deprive home health care workers of minimum wage and overtime protections. Just whom do these Senators expect will bathe them when they get old?

Ten years ago, I conducted a survey of low-income new mothers in Flint, Michigan, as part of an infant mortality reduction effort there. I was astonished by the heavy percentage employed as home health care workers, assisting elderly or disabled people.  Since then I’ve met more than a few women and men who make their living bathing the disabled, cleaning seniors’ homes, and more.

This is important, sometimes difficult work. It’s not incredibly well-paid or respected. It’s also work that many of us will someday need. Today’s New York Times includes an beautifully-written and important op-ed by Eileen Boris and Jennifer Klein, titled Home-Care Workers Aren’t Just “Companions.”

Boris and Klein note that the home health and personal care workforce includes 2.5 million people. It’s the second-fastest-growing job category in the country. For complicated, but rather shameful historical reasons, these women and men do not enjoy basic labor protections that other workers take for granted. People who perform personal care work in other people’s homes, and those who receive these services, are both rather stigmatized groups. Both are poorly-positioned in the political process to demand better conditions.

At one level, the home care industry is able to employ people at less favorable wages and working conditions. At another level, though, it’s wrong to point fingers at the industry. We taxpayers and consumers are complicit in, and benefit from, these exploitative arrangements. It’s also about honoring the dignity of work-including the hard work that many of us do caring for our own loved ones or for others who cannot do basic tasks for themselves. Continue reading “Home health care workers—more than “companions” and helpers”