Braille Monitor                                                June 2013

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The Power to Live in the World

by Jonathan Young

Jonathan Young speaking at the 2013 Jacobus tenBroek Disability Law Symposium.From the Editor: The following remarks were delivered as the keynote address at the 2013 Jacobus tenBroek Disability Law Symposium on April 18, 2013. Jonathan Young is a partner and general counsel at FoxKiser and the former chairman of the National Council on Disability. This is what he said:

I am truly honored to join you here today and pay tribute to one of our movement’s pioneers and greatest thinkers, Jacobus tenBroek. And I am pleased to have an opportunity to offer some of my thoughts on this year’s theme: Push Forward and Push Back: Continuing the Struggle for the Right to Live in the World.

Let me begin with the words of Jacobus tenBroek: He introduced his seminal article, “The Right to Live in the World,” by stating, “Nothing could be more essential to personality, social existence, and economic opportunity than the physical capacity, the public approval, and the legal right to be abroad in the land.”

TenBroek was a man ahead of his time. He articulated the tenets of the Americans with Disabilities Act (ADA) long before it was conceived, let alone enacted. Today, “The Right to Live in the World” is known and appreciated for its masterful effort in harnessing the common law of torts as a means to ground the right of people with disabilities to participate in all aspects of society. As he said by way of conclusion: “The right to live in the world…entails at least a right of free and safe physical access to it through the use of streets and sidewalks, roads and highways, and the common modes of transportation, communication, and interchange. It includes as well full and equal access to places of public accommodation, places designed to accommodate men in the course of gaining access to the world.”

In keeping with today’s theme of pushing forward and pushing back, I want to push boundaries. My goal is to revisit tenBroek’s article from a different angle: through the lens of “power” rather than “right.” Hence the title of my remarks, “The Power to Live in the World.”

Power was implicit in tenBroek’s framework. But we don’t give power enough attention in our current disability rights discourse. My central thesis is that the rights we have admirably secured cannot be exercised fully, absent individual and collective power, and that dwelling on rights to the exclusion of power imperils the goals of the ADA.

Power versus Right

Let me begin by explaining what I mean by “power” versus “right.” First let me note that the true value of either power or right lies most not in its intrinsic value but rather in its utility in achieving a desired outcome. My right to vote, for instance, has little value if I decline to exercise that right in casting my vote. Now an individual can have the power to do something but not the right, or the right to do something but not the power. One does not always need to have both right and power to achieve one’s goal. However, an exercise of power without right or right without power does not always ensure sustainable achievement of one’s goal.

TenBroek hinted at the concept of power when he talked about physical capacity along with public approval and legal rights as having overlapping effects on the end goal of integration. Thus tenBroek asked, “To what extent do the legal right, the public approval, and the physical capacity coincide? Does the law assure the physically disabled, to the degree that they are physically able to take advantage of it, the right to leave their institutions, asylums, and the houses of their relatives?”

TenBroek largely took as a given that individuals had the physical capacity of being integrated and focused his attention on whether the law, and to a lesser extent public attitudes, inhibited people from using their physical capacity to be integrated. TenBroek’s genius was to recast the common law of tort as a regime that should not focus merely on objective standards of human behavior and assessing whether a blind person should be held to the same standard of contributory negligence as a sighted person. In tenBroek’s words, “The question to be asked is not whether the defendant created an unreasonable risk of harm, but whether he interfered with the effectuation of the policy of the social integration of the disabled; not whether the plaintiff conducted himself as a reasonable man of ordinary prudence acting in the light of all the circumstances, but whether he acted pursuant to his right to be a part of his community.” In other words, the law of tort must be adjusted to accommodate the capacities of people with disabilities and promote integration. TenBroek was right to focus on the right to live in the world. But I submit to you that’s not enough to achieve the goal of integration. Friends, we need power along with rights.

Let me use a simple example to illustrate. One does not have a “right” to drive a car until an individual has reached a certain age and passed certain tests to obtain a driver’s license. But the “power” to drive a car really has nothing to do with rights. Countless people under the legal driving age have demonstrated the power to drive by borrowing their parents’ cars in the dark of night for a joy ride. I suspect there are many people in this room, sighted and not, who have driven a car without a license, without a right to do so. Others have a right to obtain a drivers’ license but haven’t ever learned how to drive a car; they don’t have the power to drive a car, or are at least unwilling to exercise their potential power.

Now consider the potentially revolutionary impact of the NFB Blind Driver Challenge™ to develop nonvisual interfaces that will allow a blind driver to operate a vehicle independently. During the passage of the ADA, advocates tried to allay employers’ concerns with a simple and compelling illustration that the “essential functions of a job” requirement meant a blind person couldn’t be a qualified person with a disability for a job that required driving because obviously a blind person couldn’t and wouldn’t ever be able to drive. Clearly people didn’t know that Mark Riccobono would be driving at the Daytona International Speedway less than twenty-five years after enactment of the ADA. Mark has successfully navigated a car equipped with nonvisual technology for 1.5 miles. He has demonstrated the power of a blind individual to drive a street vehicle in public without the assistance of a sighted person. People who are blind are on the cusp of having the capability—the power—to drive a car independently and safely on highways and byways as well as driveways and racetracks. Some fun court cases lie ahead.

The Blind Driver Challenge example illustrates how power and right must be paired to achieve goals on a lasting basis. Technological capacity may help give people who are blind the power to drive just as hand controls gave new power to people with physical disabilities. But Mark Riccobono won’t escape getting pulled over and possibly arrested while driving his car until legal rights are established to permit blind people to drive a car. I have no doubt that the NFB will ensure that those rights are secured.

The point again is this: one can have the power to do something, but not the right; or one can have the right, but not the power. As a community we will be strongest with both.

Political Power

Let’s talk about political power. In an essay published last summer on disability and politics in the Oxford Companion to American Politics, I described political power as “the perceived ability to move people and money.” Moving people relates to showing up at the polls. Moving money is about fundraising. There is irony in the history of the disability rights movement. Our legislative victories have come in the absence of substantial political power. I don’t mean to minimize the extraordinary role of disability rights advocates who deftly shepherded the ADA and other laws through Congress, but reflect for a moment on a string of legislative achievements stretching from the Architectural Barriers Act of 1968 through the ADA of 1990 and beyond. Consider just how few people were engaged on a grassroots basis in contrast to the groundswell that paved the way for the Civil Rights Act of 1964. The contrast between the broad-based social disruption wrought by the civil rights movement and the below-the-radar advance of disability rights reveals that other forces besides traditional political power were at play. At every step along our path to securing rights to live in the world, our community has benefitted from individuals in positions of power who were able to translate movement ideas into enforceable rights: George H.W. Bush, Tony Coelho, Tom Harkin, Steny Hoyer, Ted Kennedy, Dick Thornburgh, to name just a few. These were not people who were put in power at the behest of a burgeoning political force in the way that the LGBT community and the Tea Party Movement have put people in places of power. Rather, these were individuals who came to power independent of disability but had personal connections to disability and supported the cause. In a real sense we have repeatedly secured rights before the political power typically needed to secure those rights.

There is nothing wrong with leveraging the power of people in positions of influence, but there are risks. First, legislative victories like the ones we have enjoyed can lead to a misplaced illusion of political power. It is great that elected and appointed officials have carried our mantle because they felt a connection and wanted to help. But that’s different from having elected officials feel compelled to act because of political strength and being able to take some credit for the fact that they are in office. That’s a far cry from the long-term efforts other communities have undertaken to elect leaders from within their communities.

Second, we should remember that most of the disability rights victories we have secured have come without substantial resource allocation. Indeed, when it comes to things like the ADA, policymakers thought it would save the government money rather than require the government to spend more money. It is easier for policymakers to grant deficit-neutral rights than dedicate (or sustain) potentially deficit-growing funds. Budget decisions are influenced more by typical traditional power than by political largesse. Moreover, we don’t have anywhere near the number of champions that we’ve had in the past, and we aren’t backfilling the recent departures of leaders like Senators Tom Harkin and Ted Kennedy. Lack of political power during far-reaching budget debates is dangerous.

Finally, and most important, we must remember that rights secured can never be taken for granted—not only in terms of keeping the law on the books but also in ensuring that we continue to build on our rights amidst changing circumstances. Rights are not perfected at their creation. They must be cultivated, sustained, implemented, and enforced. Only then do rights have meaningful effect. This requires ongoing political engagement. Friends, we need to cultivate and wield sustainable political power.

Economic Power

Political power is important. In the end it serves only a subordinate purpose—as a means to an end. We can all agree that one of the most important measures of our strength as a disability community is economic power, or, to couch it in more typical policy terms, employment.

During his last inaugural address, President Franklin Delano Roosevelt famously proclaimed: “True individual freedom cannot exist without economic security and independence.” Put another way, the right to live in the world doesn’t result in true integration absent economic security. In his 1944 State of the Union Address, FDR laid out a powerful vision for an economic bill of rights that included, among other things, “the right to a useful and remunerative job.” Unfortunately, in our American political tradition, civil rights have vastly more traction than economic rights. The continued battle over health care (another element of FDR’s bill of rights) reveals just how much support there is for a pull-yourself-up-by-the-bootstraps capitalism and how much skepticism there is toward ensuring any basic modicum of economic well-being. Then there’s Mitt Romney’s disdain for the 47 percent of Americans who benefit from public supports: “There are 47 percent who are…dependent upon government, who believe that they are victims, who believe the government has a responsibility to care for them, who believe that they are entitled to health care, to food, to housing, to you-name-it — that that’s an entitlement. And the government should give it to them.”

Friends—we don’t want pity. We are not victims. But we do have a responsibility—to one another—to give all of our brothers and sisters a chance to reach their potential. There is a role for government in giving life to FDR’s economic bill of rights. There is a battle for our country’s future, and we need to wield power to show that we belong in that future and have opportunities to thrive in it.

Speaking of FDR, consider an important contrast between FDR’s and Barack Obama’s presidencies. The disability rights movement was built on the ideological framework of the civil rights movement. “Same Struggle, Different Difference,” was the title of my dissertation on the history of the disability rights movement and the ADA. But contemplate this. Most Americans across the political spectrum have applauded the significance of the Obama presidency as evidence of our progress on racial discrimination. It is downright inconceivable that President Obama could have been elected half a century ago, prior to enactment of the Civil Rights Act. It has taken generations to transcend a powerful legacy of abject and overt discrimination of people of color enough that a solid majority of Americans could elect a person of color as president of the United States. Legal rights prohibiting discrimination didn’t guarantee election of a person of color. But those rights were a necessary prerequisite to transforming the landscape of what is possible.

Contrast this experience with the election of a person with a disability as president in 1932—more than three decades before the Civil Rights Act and nearly sixty years before the ADA’s enactment. Sure—attitudes of the day compelled FDR to hide his disability. Not everyone knew the extent of FDR’s paralysis because he hid it and media honored that hiding. But his disability was also no mystery. And he was elected not just once or twice but four times—more than any other U.S. president.

How could FDR be elected president in 1932, in 1936, in 1940, and again in 1944 when people with disabilities purportedly didn’t secure their basic civil rights until enactment of the ADA? The answer lies in understanding the difference between power and rights. Countless people with disabilities have been able to wield real power in the absence of any formal or explicit rights giving them license to wield such power. Thus Stephen Hopkins, a person with “shaking palsy,” could be a signatory to the Declaration of Independence in a way that a woman or an African American could not have been.

This is not to say that discrimination against people with disabilities hasn’t been real. It has been degrading, destructive, hostile, inhumane, and unacceptable. In some ways disability has been even more insidious than other forms of discrimination because of so-called benign neglect. However, discrimination against people with disabilities has been selective. Disability is the category from which someone can be exempted. “I don’t think of so-and-so as ‘disabled,’” we often hear people say. What does that mean? People often associate disability with incapacity. Consequently, people who are not perceived as incapable often escape the discrimination that comes from the disability label. FDR, in other words, was a person with a disability. But he was not identified as disabled. By contrast, President Obama could not transcend the legacy of slavery and racial discrimination until nondiscrimination on the basis of color was the law of the land and applied to a class—not just single individuals.

What does this have to do with power and rights? When Chai Feldblum addressed this symposium several years ago, she talked about how nondiscrimination laws will not—cannot—eradicate discrimination. The ADA may drive discrimination underground, but discrimination endures. An employer won’t likely tell you that you didn’t get the job because you’re blind. Instead you’ll be told it was because of some other purportedly objective criterion beyond the reach of law and evidence. Someone else had more experience or went to better schools. You can fill in the blanks.

Make no mistake. We need our rights. It is high time for the U.S. to ratify the U.N. Convention on the Rights of Persons with Disabilities. But as a community we must not fall into the trap of thinking that rights can stand alone without power. President Obama didn’t become president as a matter of right. He became president because of the extraordinary power he was able to wield as a candidate in an environment where equal opportunity is the law of the land. FDR was elected president because—notwithstanding his disability and despite powerful discrimination against people with disabilities—he demonstrated unrivalled power and effectiveness on the world’s stage during one of humanity’s greatest acts.

The NFB has established eradication of the subminimum wage as one of its top priorities. The NFB is right to highlight the injustice of the subminimum wage. This antiquated policy is inconsistent with the principles of equality of opportunity, independent living, full participation, and economic self-sufficiency. Put aside for the moment the question of whether we as a community have the political power sufficient to leverage a change in policy. There is a more fundamental question of capacity: not narrowly physical capacity, as tenBroek phrased it, but more broadly the capacity to secure earnings at no less than minimum wage on an individual and systemic level.

Today, thanks to the lingering effects of the so-called Great Recession, millions of Americans have the right but lack the power to earn the minimum wage. This recession has had a dreadful impact on people with disabilities. The ADA was supposed to deliver a new era of decreased dependence on entitlement programs because an end to workplace discrimination against people with disabilities would lead to more people with disabilities going to work and becoming more self-sufficient. Instead we have witnessed a surge in the number of people with disabilities receiving income support and an unemployment rate among people with disabilities that, at best, has remained flat in the quarter century since enactment of the ADA.

We cannot say that no progress has been made on employment. Limits in available data prevent us from having a complete picture. However, there is clearly no evidence that we have made significant progress. Throughout the past three decades the labor force participation rate data have remained largely constant. This means that, at any given moment over the past three decades, about 78 percent of people with disabilities have not been working. Presently, the labor force participation rate among people without disabilities hovers about 70 percent compared with about 22 percent for people with disabilities. There is no easy silver lining here. It should give all of us pause. This is unacceptable. The problem is it’s been unacceptable for decades.

More than 3.5 million American jobs were lost between 2008 and 2010—a catastrophic figure by any measure. Here is what is particularly troubling: people with disabilities accounted for 5.5 million of 150 million jobs in July 2008 and less than 5 million by the close of 2010. While the nondisabled workforce declined by about 2 percent during this period, the disabled workforce declined by more than 10 percent. In other words, people with disabilities left the workforce at a rate of about five times that of their nondisabled coworkers. Last to be hired, first to be fired.

It’s not just a question of whether people with disabilities work, but how much they work and how much they get paid. In 2010 about 32 percent of people with disabilities were working part-time, compared with 19 percent of their nondisabled peers. In addition, the median annual earnings for people with disabilities of $19,500 represented just two-thirds of the $30,000 of people without disabilities. People with disabilities also experience a higher rate of poverty: 27.3 percent compared with 12.8 percent of the general population.

The employment picture is even worse when we take into account trends in income support. While labor force participation among people with disabilities has stayed largely constant for several decades, we have witnessed significant growth in the Social Security Disability Insurance (SSDI) program. The program has grown from 1.5 million to 8.2 million beneficiaries from 1970 to 2010 with a corresponding cost increase from $18 billion to $128 billion when holding dollars constant.

The ADA has apparently had no beneficial impact. Between 1989 and 2009 the percentage of working-age Americans on SSDI grew from 2.3 to 4.6 percent. The cash transfer in today’s dollars grew from $40 billion to $121 billion for SSDI and from $18 billion to $69 billion for Medicare costs for people on the SSDI program. The estimated present value of a combined award of SSDI and Medicare for a person with a disability is about $270,000. Among 8.2 million SSDI recipients, that’s a whopping present value of over $2 trillion. Clearly it’s in the national interest from an economic perspective, let alone a disability rights perspective, that people with disabilities be gainfully employed, tax-paying citizens.

In debates around subminimum wage, proponents of eliminating the 14(c) program often point to anecdotal stories of people who were once in a sheltered workshop and have been liberated to earn minimum wage in the community. These are powerful examples of the capacity—of the power—of countless people with disabilities to succeed in the community if only given a chance. Yet our current legal regime does not prohibit people with disabilities from earning minimum wage in the same way that, by extreme contrast, African American slaves in the antebellum South were stripped of virtually all substantive social and economic legal rights. Indeed the anecdotal stories used to illustrate why subminimum wage should be ended also underscore how, for many people with disabilities, the right to earn minimum wage is alive and well if they can find economic opportunities in the community. Wielding the power to command good jobs is an indispensable part of the equation. I am reminded of advice from disability historian Paul Longmore many years ago about succeeding as a person with a disability in academics: you need not just to meet standards but exceed them because of lingering discrimination. Wielding economic power means being able to demonstrate you are the best candidate among many and then to perform on the job.

Again, let me emphasize that the NFB rightly points to the subminimum wage as an anachronistic policy out of step with the ADA. My challenge to all of us is to recognize that eliminating subminimum wages would not, of its own accord, translate into individuals actually earning the minimum wage. Particularly in an economy where millions of able-bodied Americans who have not had to endure years of menial work in a sheltered workshop are unable to find work, we must recognize the limits of changing the legal regime. Prohibiting subminimum wages, critical as it may be to creating new opportunities for some people, is not the same thing as achieving the ADA’s goal of economic self-sufficiency, of achieving FDR’s dream of individual freedom marked by economic security. We need more jobs and need to sustain high expectations along with adequate resources to enable more people with disabilities to develop the requisite skills and experience to succeed in those jobs.

What should be done? I wish I could say there were easy answers to the stubborn persistence of high unemployment and underemployment and sub-standard compensation of people with disabilities. Anyone who tells you otherwise has to account for how myriad efforts over several decades before and after the ADA have failed to move the employment rates among people with disabilities. But let me offer one thought as a bridge between political and economic power. As a community we need to cultivate real political power so that we can help grow the economy in ways that provide more people with disabilities opportunities to earn a living wage, using community-based tools and efforts that have been proven to work. We have entered an era of sequestration and austerity of yet-to-be-determined length and impact. And yet we know that equipping people with disabilities with the skills and experiences they need to succeed and providing the supports they need on the job and in the community often require significant resources in technology, in human capital, in transportation, and in other ways. We know what works on a case-by-case basis, but we lack the resources to make things work more often for more people on a sustainable basis. We also know it’s worth the investment, because the alternative to earning one’s own living wage is relying on income support financed from other people’s wages. And of course we know it’s the morally right thing to do because, as FDR understood, the right to inhabit the world is a fleeting victory if one can’t afford to live in the world.

Conclusion

I’ve focused my time more on highlighting the challenges we face as a community than prescribing solutions. My goal has been to push us to be vigilant in cultivating power as well as rights and to think creatively about how to cultivate the power to live in the world. By way of closing, let me focus on one key building block to wielding power: “individualized empowerment,” as the late and great Justin Dart Jr. called it. “Only you (and I) and thousands like us have the power to make the dream of individualized empowerment live in every life,” Dart wrote. As Dart conceived it, a culture of individualized empowerment would “provide all human beings the customized education and services and the customized tools to meet each of their distinctive needs and to maximize each of their distinctive abilities.”

I applaud the NFB for its efforts in supporting countless individuals whose lives have been transformed by an ideology of individualized empowerment. Set aside for a moment the NFB’s legacy of proclaiming, securing, and advancing a host of legal rights for people with disabilities—which merits praise in its own right. When I hear people like Anil Lewis tell their personal stories of what it meant to encounter the NFB and throw off long-held stereotypes of what blind people can’t do, and hear the strength in his voice, and witness the confidence in his every step—not just in walking but metaphorically—I behold power in action. The power that the NFB effectively wields begins with the individual journeys its members take to recognize and channel the power that lies within and the power that can be harnessed through the support of our peers and mentors. Yes, we need to secure our rights. Yes, we need to enforce our rights. But let’s not wait on rights to exercise power wherever and whenever we can, and let’s not allow ourselves to think that rights alone will sustain us individually or as a community. Instead, let us show that we can develop and leverage the power to live in the world and thus enjoy more fully the right to live in the world that Jacobus tenBroek so capably established for all of us. Let us unleash the culture of “individualized empowerment” envisioned by Justin Dart. Acquire power. Then use it to live in the world.

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