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Adding vintage lesbian fabulousness to a life with disabilities and chronic illnesses, aided by my beautiful wife Claudia, our son Rupert and our adorable pups. I make fun, uplifting and educational content that should help you get through tough times and not feel alone.

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International Socialist Review Issue #96

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International Socialist Review Issue #96

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Quite possibly the best article I’ve ever read on Helen Keller.

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Helen Keller is one of the most widely recognized figures in US history that people actually know very little about. That she was a serious political thinker who made important contributions in the fields of socialist theory and practice, or that she was a pioneer in pointing the way toward a Marxist understanding of disability oppression and liberation-this reality has been overlooked and censored. The mythological Helen Keller that we are familiar with has aptly been described as a sort of "plaster saint;" a hollow, empty vessel who is little more than an apolitical symbol for perseverance and personal triumph. ¹

This is the story that most of us are familiar with: A young Helen Keller contracted an illness that left her blind and deaf; she immediately reverted to the state of a wild animal, as depicted in the popular movie The Miracle Worker; she remained in this state virtually unchanged until she was rescued by her teacher Anne Sullivan, who "miraculously" introduced her to the world of language. Then time passed, and Helen Keller died eighty years later: End of story.

The image of Helen Keller as a gilded, eternal child is reinforced at the highest levels of US society. The statue of Helen Keller erected inside the US Capitol building in 2009, which replaced that of a Confederate Army officer, depicts Keller as a seven-year-old child kneeling at a water pump. Neither the statue itself nor its inscription provides any inkling that the sixty-plus years of Keller's adult life were of any particular political import.

When the story of Helen Keller is taught in schools today, it is frequently used to convey a number of anodyne "moral lessons" or messages: There is no personal obstacle that cannot be overcome through pluck and hard work; whatever problems one thinks they have pale in comparison to those of Helen Keller; and perhaps the most insidious of such messages, the one aimed primarily at people with disabilities themselves, is that the task of becoming a full member of society rests upon one's individual efforts to overcome a given impairment and has nothing to do with structural oppression or inequality.

Ironically, this construction of the iconic, or mythological, Helen Keller has resulted in numerous essays and books written by individuals with disabilities who recount growing up feeling deeply resentful of her. They saw Keller as an impossibly perfect individual who personally overcame all limitations in order to become a world-famous figure-someone who pulled herself up by her bootstraps, so to speak, and did so with a polite smile. ² In reality, such a narrative starkly contradicts the experiences of the vast majority of people with disabilities, then and now, who endure incredibly high rates of poverty, homelessness, discrimination, police brutality, and ostracism.

Distortions of Helen Keller, then and now
Keller fought her entire life against such bigoted notions and distortions of her life story. She constantly combated attempts to render her a hollow icon. Nonetheless, such images regarding Keller and disability continue to be reinforced everywhere. This can be found in primary school curricula, in the vast majority of children's books on Helen Keller, and in most adult biographies of her. More often than not her radical politics are simply ignored. But even when they are acknowledged, it is usually to discount them.

One of the most authoritative recent biographies on Keller-written by the noted author Joseph Lash, and commissioned by the prestigious Radcliffe College and the American Foundation for the Blind-includes the following explanation of Keller's involvement with socialist politics: "She needed to see the world as a contest between Good and Evil. Her imagination-cut off by blindness and deafness from many of the signals that brute experience sends most of us counseling caution, compromise, grayness instead of black and white-lent itself to dichotomies. . . . If she kept some grip on reality, it was because of her Teacher [Anne Sullivan], a woman of practical common sense." ³

This assessment, while expressed in milder terms, isn't far from the accusations Keller regularly faced in her lifetime. Newspaper editors would use her disability as a means to dismiss her politics and to dissuade people from taking her seriously. Her radicalism, conservative writers would aver, was a product of the political "mistakes [which] spring out of the manifest limitations of her development." ⁴

Here is what the Detroit Free Press wrote about her in 1914:

As long as Miss Keller appears before the public in the light of a member of society struggling nobly under great handicaps and furnishing by her example inspiration for others who are unfortunately placed, she does a valuable work. But the moment she undertakes to speak ex cathedra, as it were, of all the political and social problems of the day, she receives a consideration out of all proportion to her fund of knowledge and judgment.

Helen Keller, struggling to point the way to the light for the deaf, dumb and blind is inspiring. Helen Keller preaching socialism; Helen Keller passing on the merits of the copper strike; Helen Keller sneering at the constitution of the United States; Helen Keller under these aspects is pitiful. She is beyond her depth. She speaks with the handicap of limitation which no amount of determination or science can overcome. Her knowledge is, and must be, almost purely theoretical, and unfortunately this world and its problems are both very practical. ⁵

What is remarkable, however, is the power and tenacity Keller brought to bear in answering these attacks. She courageously defied any and all attempts to render her a second-class citizen. She would have her say, and woe unto those who would try to silence her.

The radicalization of Helen Keller
Helen Keller was born in 1880 in Alabama to an upper-class family. Her father had been a slave-owner before the Civil War in which he had served as a commanding Confederate officer. After the war, he became the editor of a major newspaper in Alabama. Keller's mother hailed from a wealthy and connected New England family.

When Helen Keller was two years old she became permanently deaf and blind as the result of an unknown illness. It was not until she was seven years old that she began her formal education under Anne Sullivan, a twenty-one-year-old graduate of the Perkins School for the Blind, who had been hired by the Kellers as a live-in tutor.

Keller's education proceeded rapidly under Sullivan's guidance, and her development soon gained attention from increasingly far-flung quarters. When she enrolled in a college preparatory school with seeing and hearing girls in 1896, newspapers around the country-and even the world-ran articles detailing her course loads, semester grades, and attendance records. Her every move became the subject of intense scrutiny and gossip. By the time she had graduated with a Bachelor of Arts degree from Radcliffe College in 1904, Keller had become something of a global celebrity.

Then, in 1908, Helen Keller took the seemingly unlikely step of joining the American Socialist Party (SP). She cites two major factors that led her to this: First, her widespread readings on society and philosophy, which had ultimately led her to the works of Karl Marx as well as those of contemporary socialists, such as H. G. Wells, William Morris, and Eugene Debs; and second, her growing interest in studying the specific conditions of people with disabilities in the United States, which led her to draw conclusions about society that dovetailed with the former.

She noticed that the leading causes of disability in the United States were largely attributable to industrial and workplace accidents and diseases, frequently caused by an employer's greed and reluctance to prioritize workers' safety lest it diminish profits. She found that other social factors contributed, too, such as the prevalence of poverty, unequal access to medicine, overcrowded and unsanitary slums, and an officially imposed societal ignorance regarding matters of reproductive and sexual health.

She discovered that, once disabled, such individuals constituted a class who "as a rule are poor," cast aside and forgotten. ⁶ They were thrown into institutions; mired in poverty and unemployment; cut off from educational opportunities; and segregated and marginalized at every turn. There was not a single census in any state or city of the country that even kept track of the numbers and needs of the disabled population. They simply did not exist as far as the powers-that-be were concerned.

"Step by step," Keller recounted in 1912, "my investigation of blindness led me into the industrial world."

And what a world it is! How different from the world of my beliefs! I must face unflinchingly a world of facts-a world of misery, degradation, blindness, sin, a world struggling against the elements, against the unknown, against itself. How to reconcile this world of fact with the bright world of my own imagining? My darkness had been filled with the light of intelligence, and behold the outer day-lit world was stumbling and groping in social blindness. ⁷

"For a time I was depressed," she told the New York Times in 1916, "but little by little my confidence came back and I realized that the wonder is not that conditions are so bad, but that humanity has advanced so far in spite of them. And now I am in the fight to change things. I may be a dreamer, but dreamers are necessary to make facts!" ⁸

In short, she had come to conclude that "our worst foes are ignorance, poverty, and the unconscious cruelty of our commercial society. These are the causes of blindness; these are the enemies which destroy the sight of children and workmen and undermine the health of mankind." ⁹

One final factor that attended her decision to publicly commit to the socialist movement is less explicitly political but nonetheless important. In 1908, she wrote a sort of existential treatise titled The World I Live In. Keller felt that if she were to be taken seriously by society at large in the assertion of her right as a human being to discuss the affairs of that society, she would have to mount a fundamental intellectual self-defense against her many detractors.

[Scientific men] think that I can know very little about objects even a few feet beyond the reach of my arms. Everything outside of myself, according to them, is a hazy blur. Trees, mountains, cities, the ocean, even the house I live in are but fairy fabrications, misty unrealities.

Ideas make the world we live in, and impressions furnish ideas. My world is built of touch-sensations, devoid of physical color and sound; but without color and sound it throbs with life. Every object is associated in my mind with tactual qualities which, combined in countless ways, give me a sense of power, of beauty, or of incongruity.

It is not for me to say whether we see best with the hand or the eye. I only know that the world I see with my fingers is alive, ruddy, and satisfying. . . . The colors that glorify my world, the blue of the sky, the green of the fields, may not correspond exactly with those you delight in; but they are none the less color to me. The sun does not shine for my physical eyes, nor does the lightning flash, nor do the trees turn green in the spring; but they have not therefore ceased to exist, any more than the landscape is annihilated when you turn your back on it.

In sum, she asserted, "Between my experience and the experience of others there is no gulf of mute space which I may not bridge." ¹⁰

A socialist Joan of Arc
After Keller had made the decision to commit herself to socialism, she quickly became a leading figure in the movement. In fact, many recognized her as one of the most dedicated and effective propagandists of the socialist cause. She wrote regular columns in the Socialist Party press; she went on nonstop lecture tours across the country; she supported and popularized all the major strikes and industrial battles of the day. Later, when she grew increasingly despairing of what she deemed to be the Socialist Party's conservative, electoral-based reformism, she became a steadfast proponent of the efforts of the Industrial Workers of the World (IWW), which advocated for the organization of an explicitly revolutionary labor movement.

One newspaper in Albany predicted in 1912, "Helen Keller promises to become one of the greatest of Socialist lecturers within the next few months. Miss Keller expects to become the most influential Socialist lecturer among the women of the US, at the same time speaking in the interests of deaf, dumb, and blind children." ¹¹

It was along these lines that Keller actually made one of her greatest contributions to the socialist movement. In 1913 she published Out of the Dark: Essays, Letters, and Addresses on Physical and Social Vision. This work comprised a collection of her writings on socialism, women, and disability, and remains the most explicitly political of all her books. It was very popular within left-wing circles, and even decades later Keller would recommend it to those interested in learning about her political philosophy.

Before long, Keller was counting among her closest friends, colleagues, and acquaintances nearly every major figure in the radical, socialist, and anarchist movements. This included such diverse personalities as John Reed, Emma Goldman, Eugene Debs, Langston Hughes, Upton Sinclair, Clarence Darrow, Anna Strunsky, William "Big Bill" Haywood, Robert La Follette, Ella Reeve Bloor, James Weldon Johnson, Fred Warren, and countless others of lesser fame. ¹²

The IWW leader Elizabeth Gurley Flynn credited Helen Keller with playing an important role in the development of her own socialist politics. ¹³ Arturo Giovanitti, an IWW leader whom Keller had befriended in the course of the Lawrence textile strike of 1912, wrote of her, "She has grasped the full meaning of the socialist movement as well as any of the grizzled veterans of the class war. . . . [N]one of us will contend any more that she does not deserve to go to jail." ¹⁴

The above sentiments fully accorded with Keller's own view of her place in the revolutionary movement. In a widely circulated 1916 interview with the New York Tribune, Keller stated, "I feel like Joan of Arc at times. My whole being becomes uplifted. I, too, hear the voices that say 'come,' and I will follow no matter what the cost, no matter what the trials I am placed under. Jail, poverty, calumny-they matter not. Truly He has said, 'Woe unto you that permit the least of mine to suffer.'" ¹⁵

It is important to note that Keller's self-comparison to Joan of Arc was very deliberate. Like the latter, Keller considered herself driven by a spiritual as well as a worldly imperative. Thus, she often infused a version of Christian socialism into her Marxist politics and activism. Her specific denomination was Swedenborgian, a sect of Christianity that saw the Bible as allegory rather than history, defied Church hierarchy and dogma, and sought to better humanity's earthly condition while simultaneously believing in the immortality and universality of the soul. Named after its founding exponent, the eighteenth-century Swedish philosopher Emanuel Swedenborg, Keller found that this particular faith enabled her "to see that I could use the Bible, which had so baffled me, as an instrument for digging out precious truths, just as I could use my hindered, halting body for the high behests of my spirit." ¹⁶ Believing that the essence of the gospel was "the supreme and equal worth of each individual soul," she insisted "there is no peace between the teachings of Christ and any form of slavery." ¹⁷

It was not uncommon for Keller to pepper her lectures and writings on socialism or disability with various religious references. She would cite select Bible passages, such as the following from Isaiah 65:22, which she interpreted as indictments of capitalist inequality and exploitation: "[God is fulfilling his promise of a day when] men shall build houses and inhabit them, shall plant vineyards and enjoy the fruits of them. They shall not build and another inhabit, they shall not plant and another eat. They shall enjoy the work of their own hands." ¹⁸ She often referred to Jesus Christ as "Him who stood with the oppressed and the defrauded," ¹⁹ and on occasion waxed almost millenarian in her view of the coming socialist society:

Then shall our own place in earth's garden be sweet indeed. . . . Man's hand, the hands of all men, the symbol of an all-creative hand, shall support us, and we shall dwell in safety. We shall then know the happiness not bought at the cost of another's misery; then shall we be "fellow-workers unto the Kingdom of God." ²⁰

Keller also had no truck with those who would use religion in order to bolster the status quo. She believed that "Faith is a mockery if it does not teach us that we can build a world, both material and spiritual, more complete than the world is today." ²¹

In drawing inspiration for her politics from elements of Christianity, Keller was far from alone within the socialist movement of that time. Eugene Debs, for instance, also often interspersed religious allusions in his writings and campaign speeches. He equated the "great moral worth" of socialist ideals to the "early days of Christianity," and argued that under the classless society that socialism would introduce, "Human Brotherhood, as taught by Christ nineteen centuries ago, will for the first time begin to be realized." ²²

The socialism of Helen Keller
The roughly twenty-year period spanning the 1910s and 1920s indisputably represents Keller at her most prolific and radical. Taken as a whole, her various writings and speeches during this time also range over a tremendously large area of subject matter: Capitalism and class struggle, exploitation and revolution, war and imperialism, women's oppression, racism, and of course, disability. Increasingly, these various issues became integrated into a single condemnation of the established social order. As the socialist and labor movements swelled and advanced during the 1910s, and especially as the cataclysmic nature of capitalism was laid bare with the advent of World War I, Keller-like millions of others across the United States and the world-rapidly and successively abandoned one set of seemingly outworn ideas after another.

"What are you committed to," an interviewer asked her in 1916, "education or revolution?"

"Revolution," Keller replied:

We can't have education without revolution. We have tried peace education for 1,900 years and it has failed. Let us try revolution and see what it will do now. . . . I am not for peace at all hazards. I regret this war [World War I], but I have never regretted the blood of the thousands spilled during the French Revolution. And the workers are learning how to stand alone. They are learning a lesson they will apply to their own good out in the trenches. . . . Under the obvious battle waging there is an invisible battle for the freedom of man. ²³

Even prior to the outbreak of the world war, Keller observed the fact that the capitalist classes of each nation treated their respective working classes as little more than an enemy population that they sought to vanquish and plunder. In order to successfully resist and overcome their subjugation, it was incumbent upon workers to dispense with the various fictions hypocritically preached by their masters. It was a lie, Keller maintained, that governments were neutral dispensers of universal law. Government was an instrument in the hands of the economically dominant class and should be treated as such by all those who oppose the tyranny of the latter. Revolutionaries ought to respect the law "only as a soldier respects an enemy."

In the presence of any law [revolutionaries] ask only whether it is expedient-good tactics-to obey it or break it. They know that the laws are for the most part made by and for the possessing classes, and that in a contest with the workers the bosses do not respect the laws, but quite shamelessly break them. ²⁴

Originally, Keller's entrance into the socialist movement had more or less coincided with her rise as a leading figure in the fight for women's rights. She participated in marches and protests for women's suffrage. She supported efforts to legalize birth control and abortion. She countered the prevailing male supremacist notion that women were biologically or necessarily subordinate to men by asserting simply, "The inferiority of women is man-made." ²⁵ In sum, she advocated the complete equality of women in all fields economic, political, and social.

As she developed her politics, Keller came to approach the question of women's liberation from a decidedly Marxist worldview. Publicly, she insisted on referring to herself as a "militant" suffragist because, as she explained to a reporter for the New York Times, "I believe suffrage will lead to socialism and to me socialism is the ideal cause." ²⁶ However, this should not be taken to mean that she believed socialism could simply be voted into power. Rather, she saw women's suffrage as a strategic field of battle for carrying out the broader fight against capitalism.

The fight for women's suffrage was not particularly controversial within the Socialist Party (SP), which had long championed the cause. But around other forms of oppression, Keller was markedly in advance of the SP mainstream. The party had no official policy of combating the racial segregation and inequality that pervaded US society generally and the labor movement in particular. And though some of its more left-wing members opposed racism and attacked Jim Crow segregation, it tolerated within its ranks leading members such as Victor Berger who openly held "the non-white races" to be inferior and even an impediment to the triumph of socialism. ²⁷

In contrast, Keller, along with a handful of other SP figures, maintained an early and life-long principled opposition to all forms of racial segregation, prejudice, and inequality. Keller became an outspoken supporter of the National Association for the Advancement of Colored People (NAACP), whose cofounder W. E. B. Du Bois she had known since childhood. In 1916 she contributed an open letter, entitled "From a Friend," to The Crisis, the magazine of the NAACP.

Even well into her elder years, Keller participated in meetings and protests against racism as part of the nascent civil rights movement of the 1940s and 1950s. After speaking at one particular gathering at Danbury "to urge justice to the Negroes of Connecticut," she wrote to a friend of the "unquenchable shame I feel over the situation. . . ."

This revolt has never slumbered within me since I began to notice for myself how they are degraded, and with what cold-blooded deliberation the keys of knowledge, self-reliance and well-paid employment are taken from them. . . . It stabs me to the soul to recall my visits to schools for the colored blind which were shockingly backward, and what a hard struggle it was for them to obtain worthwhile instruction and profitable work because of race prejudice. The continued lynchings and other crimes against Negroes, whether in New England or the South, and the unspeakable political exponents of white supremacy, according to all recorded history, augur ill for America's future. ²⁸

While Keller found a receptive audience for her political writings in the socialist press, the response of the capitalist press was near-unanimously hostile. Sometimes, as demonstrated in the previously cited examples, the press denounced her as a stooge, ingrate, or imbecile, whose disability nullified her right to speak on political matters. Most often, however, they simply ignored and censored her. They refused to publish her articles, speeches, and letters to the editor on such subjects. Editors who had previously fawned over her now wanted nothing to do with her. In the preface to The World I Live In, she complained: "If I offer to reform the educational system of the world, my editorial friends say, 'That is interesting. But will you please tell us what idea you had of goodness and beauty when you were six years old?' ²⁹ Years later, in the second installment of her autobiography published in 1929, she again vented her exasperation with this phenomenon.

So long as I confine my activities to social service and the blind, they compliment me extravagantly . . . but when it comes to discussion of a burning social or political issue, especially if I happen to be, as I so often am, on the unpopular side, the tone changes completely. They are grieved because they imagine I am in the hands of unscrupulous persons who take advantage of my afflictions to make me a mouthpiece for their own ideas. . . . I like frank debate, and I do not object to harsh criticism so long as I am treated like a human being with a mind of her own. ³⁰

The disability politics of Helen Keller
There is at least one social issue that most people in the United States likely identify with the name Helen Keller: disability. However, as detailed at the beginning of this article, the disability politics attributed to Keller in most popular narratives are far from representative of her real views. In fact, Keller's theoretical and political approach to disability was informed by her socialism. And while certain scholars in disability studies argue to the contrary (more on this below), it is the opinion of this author that Keller's approach to disability was far ahead of its time and truly revolutionary.

For instance, in a groundbreaking article, "The Unemployed," written in 1911 for a magazine for the blind Keller argued,

We have been accustomed to regard the unemployed deaf and blind as victims of their infirmities. That is to say, we have supposed that if their sight and hearing were miraculously restored, they would find work. But I wish to suggest to the readers of this article that the unemployment of the blind is only part of a greater problem.

Mass unemployment, Keller argued, is due not to "physical defects or lack of ability," but rather to the fact that capitalist production requires "a large margin of idle men." The capitalist class use the pressure of unemployment to force workers to compete with one another, and in that process, "the weaker workmen are thrust aside." Thus, she argued, blindness may be a contributing factor to a person's unemployment, but not the primary cause. Linking the struggle of blind people for the right to work with the struggle of all unemployed people for jobs, she wrote, "We know that the blind are not debarred from usefulness solely by their infirmity. Their idleness is caused by conditions which press heavily upon all working people." She concluded that "it is not physical blindness, but social blindness which cheats our hands of their right to toil." ³¹

In using Marxist concepts in order to explicitly situate disability oppression within the framework of capitalist relations of production, Keller took a gigantic analytical leap beyond the prevailing theories regarding disability. Virtually all her contemporaries who theorized on the subject were, first of all, not themselves living with disabilities, and secondly, wrote in a way that was saturated in paternalism. It was widely held that the root of disenfranchisement people with disabilities lay primarily in their lack of skills, training, and education. If only people with disabilities could become more adept at fitting into existing society, it was argued, their problems would be solved.

The main difference with Keller's approach was that, while she adamantly fought for expanded educational and vocational opportunities for people with disabilities, she maintained that the larger problem was the existence of a society that did not properly fit all of its members. Moreover, because Keller had an understanding of the class nature of capitalist society, she hit upon an insightful way to express the fact that the issue was not exclusively one of people with disabilities versus people without disabilities, but rather all of the exploited and oppressed (including disabled people) versus a form of society that multifariously-yet nonetheless commonly-subjugated the former as a precondition for the wealth and power enjoyed by a dominant fraction of that society.

Note how similar Keller's insights are to the analysis of disability activist Marta Russell, in an article written ninety years later:

Any struggle for freedom from oppression has something in common with Marxism. . . . The capitalist class exploits wage earners for profit to the detriment of the working class. A primary source of oppression of disabled persons. . . is their exclusion from capitalist exploitation. . . . Industrial capitalism imposed disablement upon those non-conforming bodies deemed less or not exploitable by the owners of the means of production. The prevailing rate of the exploitation of labor determines who is "disabled" and who is not. ³²

The insidious aspect of this phenomenon is not only that capitalism relegates people with disabilities to a permanent status of social and economic inferiority, but as a result of the competition between those compelled to sell their labor power in order to survive-as Keller described in her 1911 article-enmity is fostered between those with disabilities and those without.

Keller believed that the solution to this mutually harmful arrangement lay in building solidarity between people with disabilities and those without, since the two groups share far more in common than that which differentiates them. Her unconditional support of every step forward in the development of the labor and socialist movement was not a separate interest but intimately connected with her disability politics. For Keller, the key to the liberation of the full spectrum of human potential and ability lay in overcoming the structural competition between workers throughout society.

"When we inquire why things are as they are," Keller wrote in 1913 for another magazine for the blind, "the answer is: The foundation of society is laid upon a basis of individualism, conquest, and exploitation, with a total disregard of the good of the whole."

The structure of a society built upon such wrong basic principles is bound to retard the development of all men, even the most successful ones, because it tends to divert man's energies into useless channels and to degrade his character. . . .

This unmoral state of society will continue as long as we live under a system of universal competition for the means of existence. . . . It must, therefore, be changed, it must be destroyed, and a better, saner, kinder social order established. Competition must give place to co-operation, and class antagonism to brotherhood. ³³

Keller's voluminous writings on disability are not, however, without certain limitations. Always in advance of the prevailing conceptions of disability and people with disabilities, Keller's views were nonetheless unavoidably influenced and constrained by these conceptions. Also, like her general political outlook, her approach to disability underwent various modifications and iterations over the years, leading to certain seeming inconsistencies.

One recent Keller biography, written by disability studies professor Kim Nielsen, advances a number of important criticisms of Keller's disability politics. ³⁴ She correctly condemns an article written by Keller in 1915 during a brief moment when she had adopted certain eugenicist ideas. ³⁵ Influenced greatly by her friend and then-comrade Margaret Sanger, Keller conflated the struggle for birth control and reproductive self-determination with the broader social goal of ensuring the "fitness" of future generations. To be fair, Keller never supported the more odious and racist aspects of eugenic philosophy, such as forced sterilization (a practice legalized by the US Supreme Court in 1927). In any event, within a matter of years, Keller was writing articles denouncing the entire "survival of the fittest" mentality upon which eugenics was founded, not only in Nazi Germany, but in the United States as well. ³⁶

Another criticism Nielsen raises concerns how, especially in her later years, Keller's explicitly radical political activity and her work around disability became bifurcated into two separate spheres, the latter sphere steadily losing its more militant edge. ³⁷ There is certainly truth to this insight, although, as will be discussed in more detail later in this article, this phenomenon was not entirely one of Keller's own choosing.

Yet, Nielsen's critique of Keller's disability politics goes beyond such observations. At least in part, what Nielsen seems to find Keller guilty of is failing to utilize a specific language, theoretical construction, and political identity surrounding disability that simply did not exist in developed form until many years after Keller had died. ³⁸

In the wake of the social upheavals of the 1960s and 1970s, many disability rights activists and scholars developed a set of politics that foregrounded issues of identity, pride, and independent living. A full critique of the relative strengths and weaknesses of these various politics is beyond the scope of this article. ³⁹ Suffice it to say, however, that it is simply ahistorical and fallacious to solely measure the relative merit of Keller's politics according to how far short it falls of these recent ideological rubrics.

Moreover, by focusing so much on the presentation of Keller's public persona, Nielsen confuses the essential kernel of Keller's disability politics with the inessential shell. Thus, she critiques Keller for not having a sufficient number of friends with disabilities; for sometimes referring to her blindness and deafness as a misfortune; for not articulating the universality of experience within the full spectrum of physical or mental impairments; for trying too hard to assimilate into the world of "normal" people rather than embracing her differences. ⁴⁰

In his seminal work, Nothing About Us Without Us: Disability Oppression and Empowerment, disability rights activist James Charlton offers a different way to view the personal versus the political aspects of disability. Charlton's approach lends itself to a better analysis of Keller in relation to these questions, while also demonstrating the shortcomings of Nielsen's conclusions. It is both possible and necessary to view disability as a wholly natural component of the human condition, Charlton argues, while simultaneously allowing for contradictory manifestations of disability on an individual level.

Having a disability is essentially neither a good thing nor a bad thing. It just is. This intrinsic "neutrality" of disability is the primary aspect of all the contradictions bound up in the condition of disability. There is, however, a secondary aspect of disability-its bad side. Disability often brings physical pain and atrophy; psychological and cognitive disorientation; inconvenience, immobility, and an assortment of other nuisances. While this secondary aspect of disability should not be discounted, it is the perverse inversion of these aspects that essentializes disability as intrinsically inferior/bad which the [disability rights movement] has attacked. By minimizing, patronizing (hero worship), and often eradicating the essential neutrality of disability, the dominant culture trivializes the intrinsic complexity of disability. Some people with disabilities want to be "cured"; others don't. Both positions can be understood as rational only if this complexity is acknowledged. The expansion of people's choices within this problematic is something, I believe, that should be considered progress. ⁴¹

In the case of Helen Keller, this meant that, depending upon the circumstance, she sometimes asserted that there was no vital or eternal difference that irreconcilably separated people with disabilities from those without in the universal human arenas of personality, culture, politics, labor, love, and so on, while at other times she decried a society that abides the physical and mental degradation of workers and poor people permanently impaired as a result of war, industrial exploitation, and the spread of treatable diseases. What solves this seeming contradiction is her view that a society which truly concerns itself with the dignity, respect, and well-being of all disabled individuals, must necessarily also be a society which concerns itself with the dignity, respect, and well-being of all nondisabled individuals. Keller believed that just as it was wrong to deliberately "rob" someone of one or more of their physical or mental faculties, it was equally wrong to "rob" someone without one or more of their physical or mental faculties of the right to full access and participation in society according to their abilities, desires, and needs. ⁴²

Nielsen is certainly right that Keller was far from a flawless individual who took the correct position on every question, in life or in politics. But when it comes to Keller's essential framework and the guiding impulse of her endeavors, the simple fact remains that in connecting disability oppression, prejudice, and discrimination with capitalism-in positing the notion that what people with disabilities need is not pity or charity but rather the right to the assistance necessary to be full members of society; ⁴³ in excoriating any "solution" to the problems of people with disabilities that is premised upon their segregation and ostracism into institutions or ghettos; ⁴⁴ in focusing on the social and political (rather than individual) circumstances which cause both impairment and disablement; ⁴⁵ and in asserting that the liberation of people with disabilities from the social obstacles which oppress them is inextricably linked with the broader struggle for a society in which "the welfare of each is bound up in the welfare of all" ⁴⁶ -Keller laid the basis for a truly revolutionary approach to the political question of disability.

The Russian Revolution and the international socialist movement
Over the course of the roughly six decades spanning Keller's adult life, her various political involvements took a variety of forms. To a large degree this more or less correlated with both the changing nature and relations of global capitalism, and the overall ebb and flow of the US and international socialist movements.

Helen Keller's most militant and outspoken period was from 1910 through the mid-1920s. This was a time in which the nascent socialist cause had enjoyed its greatest ascendancy, hitting a crescendo with the 1917 Bolshevik Revolution.

Like countless US radicals, Keller's radicalization brought her first into the Socialist Party, then into the Industrial Workers of the World (IWW), and finally into the camp of Bolshevism. "The first step toward social regeneration," she wrote in 1918, "has been taken in Russia. The impossible has happened. The Russian people have taken possession of Russia! At a time when all nations are torn by contention and fierce rivalries, the Russian people boldly proclaim the oneness of mankind."

With a supreme gesture they have declared against conquests and annexations and secret diplomacy, against hates and fears and conspiracies and race antagonisms. . . .

The Soviet government has abolished political classes. Through the principle of self-determination of peoples it has granted independence to the various nationalities. It has separated church and state. It has nationalized the land. It has nationalized industry to a considerable extent. It has nationalized the banks. It has provided for democratic management in factories, shops, mines, mills and other works. It has provided for a system of social insurance, including insurance against accident, sickness, unemployment and old age. ⁴⁷

Unfortunately, the "great experiment" that was the Russian Revolution proved to be an isolated world phenomenon. ⁴⁸ Workers' uprisings and even revolutions did take place in various other countries throughout Europe, but none of these proved able to successfully overthrow their respective capitalist ruling classes. By the mid-1920s, the worldwide revolutionary wave had stalled. In isolation, a new bureaucratic regime arose in Russia on the ruins of workers' democracy. In the West, a decade-long period of anticommunist repression ensued. In the United States, this was the period of the so-called Red Scare, in which virtually every recognized leader of the socialist movement was thrown into jail, executed, or deported. ⁴⁹

For her part, Keller did all she could to fight against the growing political retrograde enveloping the United States. She wrote countless articles and letters in defense of her comrades facing long prison sentences and exile on charges of "treason" or "sedition." She also became a founder and board member of the American Civil Liberties Union, which was established as a means to defend the victims of government repression.

However, by the late 1920s, there were simply fewer and fewer avenues available for Keller to participate in the socialist movement. The Socialist Party and the IWW were in shambles as a result of political repression and factional strife. And the newly formed Communist Party (CP)-which had been declared illegal by the US government-was still a relatively tiny grouping of individuals, conducting mostly underground activity and paralyzed by vicious infighting.

Though no longer under the auspices of the Socialist Party or IWW, Keller nonetheless continued on the lecture circuit, speaking before a wide range of audiences and organizations. What is interesting to note about these years is the way in which Keller's eminently political impulses are demonstrated, even in times of bitter reaction and isolation.

A routine lecture for Keller at this time usually consisted of her recounting her life story, followed by an extended question-and-answer round with the audience. The following is a typical sample of some of these exchanges:

Q: Who is your favorite hero?
A: Eugene Debs. He dared to do what other men were afraid to do.

Q: Who are three greatest men of our time?
A: [Vladimir] Lenin, [Thomas] Edison, [Charlie] Chaplin.

Q: Do you think the voice of the people is heard at the polls?
A: No, I think money talks so loud that the voice of the people is drowned.

Q: What do you think of capitalism?
A: It has outlived its usefulness.

Q: What do you think of Soviet Russia?
A: It is the first organized attempt of workers to establish an order of society in which human life and happiness shall be of first importance, and not the conservation of property for a privileged class.

Q: Do you believe spiritualism is the cure for the world's troubles?
A: No. I think the world's troubles are caused chiefly by wrong economic conditions, and the only cure for them is social reorganization.

Q: Which is the greatest affliction-deafness, dumbness, or blindness?
A: None.

Q: What then is the greatest human affliction?
A: Boneheadedness. ⁵⁰

The American Foundation for the Blind, the Communist Party, and World War II
By 1924 Keller had moved on to engaging in lecture tours on behalf of the American Foundation for the Blind (AFB). The AFB was founded in 1921 as a national agency conducting advocacy for blind people in America. Keller would end up working for the AFB in one capacity or another for the rest of her life.

For Keller, this relationship amounted to a compromise. The AFB was not a radical organization; but it was willing to pay her a regular salary despite the objections of its more conservative and anticommunist supporters. The AFB tightly controlled her message, doing everything in its power to squelch her overall radicalism and association with socialists and communists. ⁵¹ But as long as AFB officials stopped short of outright firing her, Keller was willing to work for them and consign her socialist activism to arenas external to the AFB.

One unfortunate result of this arrangement was the increasing separation between Keller's activism around disability politics and that of her general socialist political activism. Gone from her speeches on behalf of the AFB was any explicit reference to disability oppression being rooted in the capitalist system, or that the full emancipation of people with disabilities hinged upon the revolutionary overthrow of the existing society.

Nonetheless, she continued to proclaim in many of her AFB speeches that "our worst foes are ignorance, poverty, and greed;" that it was "the fields of industry and of war" that were chiefly responsible for darkening the eyes and deafening the ears of humanity; that what people with disabilities needed was not charity or pity, but rather the right to work, and the right to exercise control over all the affairs "connected with their own economic and social well-being." ⁵²

Additionally, though her work on behalf of the AFB increasingly consumed a vast portion of her time-thus accentuating the tendency for her disability work to focus particularly on blind people-she made it clear that this was in many ways purely incidental. ⁵³ "Blindness with a big 'B' has never interested me," she explained in an article for the New York Times in 1946. "I have always looked upon the blind as a part of the whole society, and my desire has been to help them regain their human rights so as to enable them to keep a place of usefulness and dignity in the world economy. What I say of the blind applies equally to all hindered groups-the deaf, the lame, the impoverished, the mentally disturbed." ⁵⁴

In any event, Keller remained well aware of the limitations inherent to her work with the AFB, which was far more akin to a charitable enterprise than a vehicle for militant activism. After decades of campaigning for the AFB, Keller was still able to write the following to a friend who expressed concern that Keller's elevated political profile would undermine her work for the blind.

It is perfectly true that my work for the blind is a trust, and in order to fulfill its duties justly I must keep it as the center of my external activities. But it has never occupied a center in my philosophy or inner relations with mankind. That is because I regard philanthropy as a tragic apology for wrong conditions under which human beings live, losing their sight or hearing or becoming impoverished, and I do not conceal this awkward position from anybody. One can, and does dishonor one's trust through suave compliance quite as much as through lack of considerate caution. There is an even higher trust-to keep my essential freedom so that wherever possible I may release fettered minds and imprisoned lives among the blind, let alone those who see. ⁵⁵

Given the pressure Keller was under to abandon completely any association with radical politics-and how her work on behalf of the AFB was demanding more and more of her time-it is quite remarkable that she remained as politically active as she did during the 1920s, '30s, and '40s. Throughout these years she continued to write articles and give interviews on an array of subjects including women's rights, poverty, capital punishment, and imperialism.

In 1929 and again in 1938 she published books that both contained extended sections defending the Soviet Union-which she maintained was still a more or less democratic workers' state-and praised the late Vladimir Lenin, whose great legacy rested on how he had helped to sow in Russia "the unshatterable seed of a new life for mankind." ⁵⁶ These books also served as public reiterations of her basic socialist worldview.

Keller also maintained a constant correspondence with her old comrades from the SP and IWW, many of whom were now active in the CP. Keller herself never joined the CP but was a "fellow traveler"-someone who supported or engaged in CP activities but not a member. During the 1930s and '40s she was involved in numerous campaigns, organizations, and initiatives alongside the CP. ⁵⁷ She also regularly wrote articles for CP journals and magazines. ⁵⁸

By this time, however, the Soviet Union for all intents and purposes had ceased to be a genuinely revolutionary force in the world. Internally, all the gains of the revolution had been undone by Joseph Stalin's bloody counterrevolution, and in place of workers' democracy there now existed an exploitative, class society ruled by a one-party bureaucratic state. Externally, this had a profound impact on Communist Parties around the world, which had developed into more or less obedient executors of the foreign policy needs of the Stalinist regime in Russia. As a result, the politics and activities of the international socialist movement became tangled in a number of distortions and contradictions.

This can be seen, too, in the behavior of Helen Keller in the years leading up to the start of World War II. Up until 1941, Keller had publicly been against the United States' entry into the war, which she described as an imperialist conflict, just the same as she had described World War I. Even when Britain and France declared war on Germany, Keller still maintained that the working class had no interest in the war. ⁵⁹

Keller was not complacent or ambivalent, however, about the very real danger that the rise of fascism posed to the world. Ever since 1933, copies of her books had been banned and burned by the German Nazis who deemed her to be too sympathetic to Bolshevism. ⁶⁰ By the end of the 1930s, while powerful Americans such as famed automobile industrialist Henry Ford were still financing and publicly extolling the virtues of the Nazi regime, and even the president of the United States was refusing entry to Jewish refugees of Hitler's terror, Keller was speaking out vigorously against these crimes against humanity. ⁶¹

In 1938 she wrote an impassioned appeal to the editor of the New York Times to end the newspaper's de facto policy of minimizing and underreporting the scale of Nazi atrocities then being committed. In particular, she lamented how the American press appeared to be completely ignoring the plight of people with disabilities trapped in Germany. Jews and non-Jews with disabilities alike were "doubly stricken people," Keller argued, because not only did they face the Nazi's eugenic terror within Germany, but they were also left with nowhere to turn for refuge. Virtually every Western nation at the time explicitly prohibited anyone with a disability-"defectives" as they were labeled in US immigration protocols-from immigrating into their respective countries for similar reasons. ⁶²

Still, Keller's antiwar position remained inviolate. Instead, she advocated an international boycott of the fascist governments of Italy and Germany; she called upon soldiers and citizens within these countries to actively resist the militarism and racism of their respective governments; and she was part of various campaigns to push the "democratic countries" to accept all the refugees of fascism without exception. ⁶³

Then, in June 1941, Keller dramatically changed her position on the war following the German invasion of Russia. ⁶⁴ Virtually overnight, the Soviet Union and all Communist parties declared it the duty of workers everywhere to advocate that their government enter the war on the side of Russia. Naturally, Keller, like millions of others who still had illusions in the socialist character of the Soviet Union, responded to this call. ⁶⁵ She justified her new pro-war stance by declaring that the "rankly imperialist" war had suddenly "develop[ed] into a people's war of liberation." ⁶⁶ Along with the CP and most of the rest of the Left, Keller dispensed with her previous language denouncing the United States as an undemocratic capitalist nation and instead praised Stalin's new ally, President Franklin Roosevelt, as the champion of democracy and freedom. ⁶⁷

Keller's patriotic turn during the war notwithstanding, she did continue to raise important criticisms of various contradictions within US society. For example, while proclaiming the war to be one of democracy against fascist tyranny and race hatred, the United States actively enforced racial segregation in the army, war industries, and throughout the entire nation. Keller took up this subject in an October 1942 article titled "What the Negro Means to the War," written for the CP magazine, New Masses:

It is a ghastly reductio ad absurdum for America to sacrifice millions of men allegedly to defeat Nazism and brute force while in its borders discrimination and inertia are allowed to rob the colored folk of their hard-won advances toward justice and intelligent citizenship.

. . . [I]t is incumbent upon us to help the Negroes safeguard their bulwarks against injustice, remembering from bitter experience that if those rights are cancelled, the war cannot end in a genuine victory for democracy. ⁶⁸

Helen Keller turns to the Third World
Throughout the duration of the war, Keller's commitment to the side of the Allied Powers remained firm. Then, when the war drew to a close in 1945 and the Cold War between the United States and the Soviet Union began, Keller, following the CP, once again denounced the United States as an imperialist nation, undermining democracy at home and abroad.

The presidential administration of Roosevelt's successor, Harry Truman, had not given Keller "the slightest cause to renounce my extreme left-wing views. I have long suspected that both the Democratic and the Republican parties, backed by high financiers and other powerful vested interests, are working towards imperialism, and now the proof glares me in the face." ⁶⁹

In particular, Keller accused Truman of backing anti-democratic forces in Greece and Turkey, which were then engaged in the brutal repression of Communists and other left-wing partisans. ⁷⁰ She also condemned Truman's domestic policy. As the Cold War began to unfold, she lamented the rampant racism, the stifling of radicalism and liberal ideas, and the proliferation of nuclear weapons. ⁷¹

By the end of the 1940s and early 1950s, however, Keller had come to view the Soviet Union as also deserving of criticism alongside the United States. She had grown weary of supporting a country that had obviously become rife with internal repression, and acted on the postwar international stage like every other powerful, bullying nation. She adopted no particular analysis to explain the changing nature of the Soviet Union, but instead simply felt utterly "bewildered by the contradictions." ⁷² Consequently, she began to publicly distance herself from the Soviet Union and the CP. The context in which this occurs makes it all a bit complicated.

Throughout the 1940s and 1950s, as the United States clashed with the Soviet Union abroad, it also declared an all-out war on Communism at home. In a wave of repression that has come to be known as McCarthyism, tens of thousands of Communists or suspected Communists were jailed, fired, and deported. Many former Communists renounced their radicalism and publicly testified before Congress about the treasonous activities of their former comrades.

Helen Keller was disgusted by this. She wrote articles and lent her name to petitions protesting McCarthyism and the anti-Communist witch hunts sweeping the nation. ⁷³ She proudly declared that she would never renounce her socialist politics-past or present. But she also made it clear that she no longer personally supported the Soviet Union or the Communist Party. In effect, what she began to grasp toward, ideologically speaking, was a sort of non-communist, rather than anti-communist, vision of socialism.

Interestingly, her rejection of Communism coincided with a developing reconsideration of her support for World War II. In the years since the war's end, she toured Europe and saw the incalculable devastation wrought there; she visited Hiroshima and Nagasaki where two nuclear bombs dropped by the Truman administration had killed nearly half a million people, and she recoiled in horror at the "damning atrocities" that the United States had committed there-atrocities that had "scorched a deep scar" in her soul. ⁷⁴ Finally, she concluded that she had "betrayed a sacred thing" by laying aside her antimilitarist principles in support of the war and was "determined not to do it again." ⁷⁵ Not only had Keller grown disillusioned with World War II itself but also with the stated promise of universal peace and democracy that its conclusion was supposed to secure.

In fact, the postwar years seemed to only bring fresh conflict, domination, repression, and hypocrisy carried out by the war's victors, both in the East and the West. She wrote of the United States and the Soviet Union as locked in the same old competitive wrangling that had hitherto plagued the world. She laid the blame for this state of affairs at the feet of both of these world powers. ⁷⁶

Thus, in 1948, when Josip Tito, the leader of the Socialist Federal Republic of Yugoslavia, defied Stalin's imperialist designs on that country, Keller immediately sided with Tito. "Of course my sympathies are with Yugoslavia," she wrote in 1949, "in its rebellion against what seem arbitrary measures to take away its raw materials for the profit of another country-measures which no real democracy will tolerate." ⁷⁷

She was similarly drawn to the constellation of colonized nations that had achieved independence in the wake of the war. In particular, she was extremely enamored with Jawaharlal Nehru, the first prime minister of an independent India. ⁷⁸ Along with Tito, Nehru was fast becoming a leading figure in the development of the Non-Aligned Movement. This movement was a loose grouping of formerly colonized or oppressed nations (of the "Third World") that sought to assert their independence from both Washington and Moscow. Additionally, the leaders of these nations by and large self-identified as "socialist." This socialism, however, was identified not with workers' power but with state planning.

As Keller's worldview evolved in response to global events, so too did the company she sought for political conversation, activism, and friendship. Her closest companions and trusted political collaborators became other like-minded "non-Communist" socialists such as Albert Einstein, Jo Davidson, Van Wyck Brooks, and principled progressives such as Henry Wallace. ⁷⁹ Her work with these individuals during the postwar years included various initiatives opposing McCarthyism, atomic warfare, racism, and Cold War imperialism.

Whether intentionally or not, most Keller biographers have characterized these later years as a period in which Keller had moved beyond the socialist beliefs of her youthful radicalism. Nielsen argues that Keller had become a "Cold War liberal," while Lash merely says that she was no longer being "duped" by communists. ⁸⁰ Even the title of Communist historian Philip Foner's 1968 edited selection of Keller writings and speeches, Helen Keller: Her Socialist Years, logically implies that Keller was no longer a socialist after 1929, the date of the final speech he includes in the chronological collection.

In fact, one of the very few biographers who claims that Keller actually did remain a lifelong socialist was Van Wyck Brooks. ⁸¹ Tellingly, Brooks also happens to be the only one of these biographers who actually knew her (and knew her as an intimate friend precisely in her later years).

Keller's postwar politics were certainly not as straightforward as they had once been. Her conflicting statements on the Soviet Union, the United States, and the war definitely lend themselves to confusion. Moreover, her socialism-as it had for many who experienced the degeneration of the Russian Revolution, the rise of Stalinism, and the emergence of the Cold War-was now a far more moderate, diluted variety than that which she had embraced in the past. Nonetheless, she remained unmistakably, albeit cautiously, socialist.

"I have never had a tolerant view of the character, objectives and flaws of capitalism," Keller wrote in 1950, "and I fear I am incorrigible. A very few of the rich whom I meet appeal to me eloquently, and are ready to surrender their all for the good of humanity if need be, but I have never felt close to them even before I became a Socialist." ⁸²

A New York Times interview with Keller conducted earlier in 1950 further clarified the various ideas she was grappling with. When asked for her current thoughts on the communist movement, Keller replied that it was true that she was still a socialist, but she felt that "Communism is another kind of tyranny over human minds and bodies." However, she quickly proceeded to tell the interviewer that she still owned a Braille copy of the Communist Manifesto, and declared that, "If it isn't imposed as tyranny, it is one of the finest pieces of literature ever written." As for Russia, she felt the pendulum had swung away from the "spirit of Lenin back to the old state of power exercised by the Czars" under the personage of Stalin. ⁸³

Helen Keller's final years
While Helen Keller invested what hope she had left for the realization of a better world into the struggles of the Third World and various non-Communist socialist intellectuals, she felt that the promise of socialism was now more remote than at any time in her life. In interview after interview she repeatedly expressed deep feelings of sadness and remorse over the state of the world; a world seemingly just as wracked by violence, bigotry, and poverty as ever. With the ever-increasing control exerted by AFB trustees over virtually all areas of her life (they were granted power of attorney over her and controlled her finances and public appearances, even visitors in her home, which they owned), Keller became withdrawn and isolated by the end of the 1950s. She futilely protested to those closest to her that she felt "old" and "tired" and "wanted to be left alone to lead my life the way I want to." ⁸⁴

Even as William Gibson's now-famous production The Miracle Worker became a smash hit on Broadway in 1959, Keller had little involvement in the endeavor. In fact, it resulted in much turmoil for her. The project had initially gone ahead over her objections (the content of those objections are unfortunately not entirely clear). Eventually, Keller became resentful and hostile toward both the undertaking itself as well as those around her who had championed the production without her full consent and participation. ⁸⁵

For solace she turned increasingly to her poetic and religious interests, retiring for all intents and purposes from political pursuits. In both public and private conversations, she became far more likely to cite as a source of inspiration the words and deeds of people like Walt Whitman, Mahatma Gandhi, and Jesus Christ than that of Karl Marx, Vladimir Lenin, and Eugene Debs. In a sense, her particular brand of Christian socialism had come to focus on the Christian aspect to a much greater degree than the socialist.

Keller lived out the rest of her years in relative solitude, and after suffering the first of a series of strokes in October 1961, she disappeared completely from public life. She died a few years later at the age of eighty-seven.

The last public speech that Keller gave was in April 1961, on the topic of disability. What is most noteworthy about this speech is that it anticipates the fight around a number of issues that would take center stage during the rise of the disability rights movement of the 1970s, and which remain pressing issues today.

She began by applauding how the US government had recently increased aid for vocational rehabilitation programs for the blind, but she deplored how "nearly one-half of the blind of the United States, and considerably more than that number in other parts of the world, are dependent upon some sort of public assistance," and meager assistance at that.

She proceeded next to the topic of education. Fifteen years before the federal government extended the right to an education to all children with disabilities, ⁸⁶ Keller declared,

There seems to be a growing conviction that the Federal government should at least provide education and funds to promote the schooling of children who are physically, mentally, or emotionally handicapped. Think of it-probably 75 percent of all such children are denied the right to any education! Of course we know how expensive special education is, but America should provide this advantage, so unspeakably precious to families whose young blind are growing up to adulthood. . . . It saddens me inexpressibly to learn that this country urgently needs more educational agencies for blind children, more teachers, more embossed books and an increased amount of school materials.

Finally, she concluded by addressing the widespread practice of throwing people with disabilities into institutions and asylums, and warehousing elderly people with disabilities into sterile "senior centers."

"More than ever," Keller states, "I abhor the idea of placing old blind persons in asylums or homes just for the blind.

I believe that the blind are like other human beings-they desire homes cheered by friendship, interesting amusements and opportunities for normal family living. Nothing, surely, can be more damaging and undesirable than situating them in institutions without a chance of home pleasures or the joys of social life. Who has the heart to segregate those who cannot see, to prevent them from finding wholesome pleasures or delightful experiences? ⁸⁷

Helen Keller's legacy
Sadly, the fundamental dream that Helen Keller maintained throughout most of her life ultimately eluded the grasp of her generation. In the years since her death, that dream-the dream of a socialist world, free of oppression, exploitation, and war-has likewise been deferred for subsequent generations. And yet, that dream has not died, and will not die as long as there are people in the world who remain animated by the memories and legacies of Helen Keller and all of our other fighting ancestors. It is in such a spirit that this article ends at the beginning-with an excerpt from the very first public lecture given by Helen Keller, in February 1913.

I am going to try to make you feel that no one of us can do anything alone, that we are bound together. I do not like this world as it is. I am trying to make it a little more as I would like to have it.

It was the hands of others that made me. Without my teacher I should be nothing. Without you I should be nothing. We live by and for each other. We are all blind and deaf until our eyes are open to our fellow men. If we had penetrating vision we would not endure what we see in the world today.

The lands, the life, and the machinery belong to the few. All the work they do gains for the workers a mere livelihood. It is the labor of the poor and ignorant that makes others refined and comfortable. It is strange that we do not see it and that when we do we accept the conditions.

But I am no pessimist. The pessimist says that man was born in darkness and for death. I believe that man was intended for the light and shall not die. It is a good world and it will be much better when you help me to make it more as I want it. ⁸⁸

1. Dorothy Herrmann, Helen Keller: A Life, 2nd ed. (Chicago: University of Chicago Press, 1999), xv.

2. See Liz Crow, "Helen Keller: Rethinking the Problematic Icon," Disability & Society 15.6 (2000): 845-59; Georgina Kleege, "Blind Rage: An Open Letter to Helen Keller," Southwest Review 83.1 (1998): 53-61; Kathi Wolfe, "The Foresight of Helen Keller Can Help to See Us Through," Independence Today (April 2011), Independent Living Center of the Hudson Valley.

3. Joseph P. Lash, Helen and Teacher: The Story of Helen Keller and Anne Sullivan Macy (New York: Delacorte Press, 1980), 427.

4. Helen Keller, "How I Became a Socialist," New York Call, November 3, 1912; available at the Marxist Internet Archive, www.marxists.org.

5. "Wonderful But No Prophetess," Detroit Free Press, January 13, 1914.

6. Helen Keller, The Story of My Life (New York: Double Day, Page & Co., 1904), 276-77; Helen Keller, "What the Blind Can Do," Youth's Companion (January 1906), reprinted in Out of the Dark: Essays, Letters, and Addresses on Physical and Social Vision, Helen Keller (New York: Double Day, Page & Co., 1913), 141-49.

7. Helen Keller, "The Hand of the World," American Magazine (December 1912): 43-45, reprinted in Helen Keller: Rebel Lives, John Davis, ed. (New York: Ocean Press, 2003), 46-51.

8. Barbara Bindley, "Helen Keller Would Be I.W.W.'s Joan of Arc," New York Tribune, January 16, 1916.

9. Helen Keller, "Social Causes of Blindness," New York Call, February 15, 1911, in Helen Keller: Rebel Lives, 18-20.

10. Helen Keller, The World I Live In (1908) (New York: New York Review of Books, 2003), 86, 7, 42, 67, 40.

11. Lash, Helen and Teacher, 378.

12. Edna Porter, ed., Double Blossoms: Helen Keller Anthology (New York: Lewis Copeland Company, 1931).

13. Elizabeth Gurley Flynn, The Rebel Girl (New York: International Publishers, 1973), 279-80.

14. Kim Nielsen, The Radical Lives of Helen Keller (New York: NYU Press, 2009), 25.

15. Bindley, "Helen Keller Would Be I.W.W.'s Joan of Arc," 1.

16. Helen Keller, My Religion, 1927 (San Diego: The Book Tree, 2007), 47-49.

17. Helen Keller, "To the Editor of the Brooklyn Eagle," Draft, January 11, 1916 in Helen Keller Archives, "Writing by Helen Keller: B - General," Box 223, Folder 9, Series 2: Writing by and about Helen Keller, American Foundation for the Blind, 2 Penn Plaza, New York City, NY, 10121.

18. Helen Keller, "Building the Future," 1916, Helen Keller Archives, "Speeches: 1916-1917," Box 212, Folder 3.

19. Helen Keller, Untitled Speech, Helen Keller Archives, "Speeches: Children of Atlanta," Box 215, Folder 11.

20. Helen Keller, Untitled Speech, 1912, Helen Keller Archives, "Speeches: 1912-1915," Box 212, Folder 2.

21. Helen Keller, "A Message from the Hand, or, From Darkness to Light," 1928, Helen Keller Archives, "Speeches: 1928," Box 212, Folder 8.

22. Eugene Debs, "The Socialist Party's Appeal," Independent 65.3124 (October 15, 1908).

23. Bindley, "Helen Keller Would Be I.W.W.'s Joan of Arc."

24. Helen Keller, "Introduction," Arrows in the Gale, Arturo Giovannitti (City, CT: Hillacre Bookhouse, 1914), 12-13.

25. Helen Keller, "Woman Suffrage: An After-Dinner Speech made by Helen Keller in Chicago, June eleventh, 1916, to the delegates of the new Woman's Party," Chicago, IL, June 11, 1916, Helen Keller Archives, "Speeches: 1916-1917," Box 212, Folder 3.

26. Herrmann, Helen Keller: A Life, 176.

27. Ira Kipnis, The American Socialist Movement 1897-1912 (Chicago: Haymarket Books, 2005), 278-79.

28. Helen Keller, "Letter to Nella Braddy Henney," September 22, 1946 in Helen Keller: Selected Writings Kim Nielsen, ed. (New York: NYU Press, 2005), 277-80.

29. Keller, The World I Live In, 7.

30. Helen Keller, Midstream: My Later Life (New York: Doubleday, Doran & Co., 1929), 172-73.

31. Helen Keller, "The Unemployed," Ziegler Magazine for the Blind (April 1911) in Helen Keller: Rebel Lives, 21-23.

32. Marta Russell, "Disablement, Oppression, and the Political Economy," Journal of Disability Policy Studies 12.2 (2001): 87-95.

33. Helen Keller, "Blind Leaders," Outlook for the Blind 105 (September 27, 1913) in Nielsen, Helen Keller: Selected Writings, 63-64.

34. Nielsen, Radical Lives, 9, 13.

35. Ibid., 36-37.

36. Helen Keller, Untitled Speech, Philadelphia, PA, April 20, 1931, Helen Keller Archives, "Speeches: 1931," Box 212, Folder 10; Helen Keller, "America's New Ideal," 1935, Draft, Helen Keller Archives, "Writing by Helen Keller: A - General," Box 223, Folder 8; "Helen Keller Advises Pair Child's Health Comes before Sight," Daily Boston Globe, January 5, 1951: 1; Nielsen, Radical Lives, 68-69.

37. Nielsen, Radical Lives, 12-13.

38. Ibid., 9-13. For other critiques of Nielsen's approach, see Meghan Lindsley Todd, "Helen Keller, a Militant: Blind Girl Believes Suffrage Will Lead to Socialism. Exploring Contradictions between Biographical Scholarship and One Woman's Radical Voice," Order No. 1434792 (Ann Arbor: Sarah Lawrence College, 2006), 26-28, 30-31.

39. Cf., James Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (Berkeley and Los Angeles: University of California Press, 1998); Colin Barnes and Michael Oliver, The New Politics of Disablement, 2nd ed. (New York: Palgrave Macmillan, 2012); Ravi Malhotra, "The Politics of the Disability Rights Movements," New Politics 8.3 (2001); Marta Russell, Beyond Ramps: Disability at the End of the Social Contract (Monroe, ME: Common Courage Press, 1998).

40. Nielsen, Radical Lives, 9-13.

41. Charlton, Nothing About Us, 167.

42. Helen Keller, Untitled Speech, 1906, Helen Keller Archives, "Speeches: 1902-1906," Box 212, Folder 1; Helen Keller, "Facing the Future," 1916, Helen Keller Archives, "Speeches: 1916-1917," Box 212, Folder 3; Helen Keller, "Helen Keller on the Plight of the Deaf and Blind in Germany," The Hour 2 (May 15, 1939): 5-6, American Council Against Nazi Propaganda, New York, Helen Keller Archives, "Writing by Helen Keller: A - General," Box 223, Folder 8.

43. Helen Keller, "What the Blind Can Do," Youth's Companion (January 1906). Reprinted in Keller, Out of the Dark, 141-49; Helen Keller, "The Travesty Called Civilization," New Leader 2.30 (July 25, 1925): 7; Helen Keller, Untitled Speech, North Carolina Legislature, Raleigh, NC, January 29, 1935, Helen Keller Archives, "Speeches: 1935-1938," Box 213, Folder 2; "Helen Keller Asks Aid for Negro Deaf-Blind," Chicago Defender October 14, 1944.

44. Helen Keller, "The Heaviest Burden of the Blind," Speech, New York Association for the Blind, January 1907 reprinted in Keller, Out of the Dark, 218-19; Helen Keller, "Acceptance Speech - Annual Humanitarian Award," Lions International, April 8, 1961, Helen Keller Archives, "Speeches: USA, 1960-1961," Box 215, Folder 7.

45. Helen Keller, "Speech for Detroit," Junior League of Detroit, 1930, Helen Keller Archives, "Speeches: 1929-1930," Box 212, Folder 9. (By "impairment" is meant the actual physical or mental difference of the individual bearer, whether genetic or acquired; by "disablement" is meant the process whereby an individual with an impairment is rendered disabled or incapacitated to participate as an equal and valued member of society by the imposition of social or political circumstances. See Barnes and Oliver, New Politics of Disablement.)

46. Keller, Midstream, 340.

47. Helen Keller, "The Russian Revolution," June 1918, Helen Keller Archives, "Speeches: 1918-1919," Box 212, Folder 4.

48. Keller, Midstream, 334.

49. See, for example, Robert K. Murray, Red Scare: A Study in National Hysteria, 1919-1920 (Minneapolis: University of Minnesota Press, 1955).

50. Herrmann, Helen Keller: A Life, 227-28 and Lash, Helen and Teacher, 496-97 .

51. Lash, Helen and Teacher, 702-703.

52. Keller, "A Message from the Hand"; Helen Keller, "Untitled Speech," Baltimore, MD, October 22, 1929, Helen Keller Archives, "Speeches: 1929-1930," Box 212, Folder 9; Keller, "Speech for Detroit"; Helen Keller, "The Needs of the Blind of Australia," Australia, 1948, "Speeches: Australia (Miscellaneous), 1948," Box 213, Folder 8; Helen Keller, "Prevention for Arabs who likely read the Koran," Egypt, April 1952, "Speeches: Egypt, April, 1952," Box 214, Folder 8.

53. According to Keller's friend and editor Nella Braddy, "Destiny had chosen Helen to work for the blind. She would as willingly have worked for the deaf or any other group that needed her, but once embarked upon the work for the blind she found that she had very little time left for anything else." Nella Braddy, Anne Sullivan Macy: The Story Behind Helen Keller (New York: Doubleday, Doran & Co., 1933).

54. Helen Keller, "An Epic of Courage: 'Seen' by Helen Keller," New York Times January 6, 1946: 2.

55. Helen Keller, "Letter to Nella Braddy Henney," September 18, 1944, in Helen Keller: Selected Writings, Nielsen, 232.

56. Keller, Midstream, 335; Helen Keller, Helen Keller's Journal 1936-1937 (London: Double Day, Doran & Co., 1938), 232.

57. From 1925 to 1964 the Federal Bureau of Investigation kept a detailed file on the radical activities of Helen Keller, considering her a "communist sympathizer" and therefore a person of interest. Thus, much of Keller's involvement in various Communist-affiliated activities and Popular Front initiatives during the 1930s and 1940s were meticulously recorded by the FBI, including her comings and goings to CP meetings and events. See Fred Pelka, "Helen Keller and the FBI," Ragged Edge 5 (2001); "FBI file on Helen Keller," Marxists Internet Archive.

58. "Helen Keller Will Speak at Vets Memorial." Daily Worker, February 15, 1939: 2; Keller, "Helen Keller on the Plight of the Deaf and Blind in Germany," 5-6; Helen Keller, "To the Soviet Women," Soviet Russia Today 10 (January 1942): 8; Helen Keller, "What the Negro Means to the War," New Masses 45.3 (October 20, 1942): 23-24; Helen Keller, et. al., "Open Letter to the American People," Soviet Russia Today (June 1943): 20-21; Helen Keller, "From Art Young's Friends," New Masses 50.6 (February 8, 1944): 24-25.

59. Kathryn Cravens, "Helen Keller Pities the Real Unseeing," New York Times, June 23, 1940.

60. Helen Keller, "To the Student Body of Germany," cablegram, May 9, 1933, Helen Keller Archives, "Book Burning," Box 210, Folder 3; Elenore Kellogg, "Helen Keller Condemned," New York Evening Post, May 10, 1933, Helen Keller Archives, "Book Burning," Box 210, Folder 3; Frederick Birchall, "Nazi Book-Burning Fails to Stir Berlin," New York Times, May 11, 1933, Helen Keller Archives, "Book Burning," Box 210, Folder 3.

61. Michael Dobbs, "Ford and GM Scrutinized for Alleged Nazi Collaboration," Washington Post, November 30, 1998; Rafael Medoff, "FDR's Troubling View of Jews," Los Angeles Times, April 7, 2013.

62. Helen Keller, Letter to John Finely, emeritus editor of the New York Times, December 2, 1938. In Nielsen, Helen Keller: Selected Writings, 198-201.

63. Lash, Helen and Teacher, 607-608, 667-68; Helen Keller, "Letter to Van Wyck Brooks," November 12, 1940, Helen Keller Archives, "Writing about Helen Keller: Van Wyck Brooks, 1940-1949," Box 217, Folder 2.

64. Lash, Helen and Teacher, 668-69.

65. "Miss Keller Lauds Russia," New York Times, January 7, 1942.

66. Helen Keller, "Letter to Nella Braddy Henney," September 18, 1944, in Helen Keller: Selected Writings, Nielsen, 231.

67. "Support the President!" Soviet Russia Today (October 1941): 5; "For a U.S. Plane and Tank Week for Russia," Soviet Russia Today 10 (November 1941): 6.

68. Keller, "What the Negro Means to the War," 23-24.

69. Helen Keller, "Letter to Nella Braddy Henney," September 22, 1946, in Helen Keller: Selected Writings, Nielsen, 280-81.

70. Lash, Helen and Teacher, 699-700.

71. Helen Keller, "Letter to Eric Boulter," February 10, 1947 in Helen Keller: Selected Writings, Nielsen, 249-50.

72. "'Terror' of H-Bomb must 'Deter Man from War,'" Times of India, February 23, 1955.

73. Nielsen, Radical Lives, 84-85; Herrmann, 282-283, 286-287.

74. Helen Keller, "Letter to Nella Braddy Henney," October 14, 1948, in Helen Keller: Selected Writings, Nielsen, 251-56.

75. Lash, Helen and Teacher, 759-60.

76. Joseph Barry, "At 70, 'New Spirit, New Freedom,'" New York Times Magazine (June 25, 1950), Helen Keller Archives, "Writing about Helen Keller: Joseph A. Barry," Box 216, Folder 7.

77. Helen Keller, "Letter to Jo Davidson," December 6, 1949, in Helen Keller: Selected Writings, Helen and Teacher, Nielsen, 283.

78. Nielsen, Helen Keller: Selected Writings, 274; Nielsen, Radical Lives, 120; Lash, Helen and Teacher, 749; Van Wyck Brooks, An Autobiography (New York: E.P. Dutton & Co., 1965), 636; Helen Keller, Letter to Van Wyck Brooks, October 17, 1953, Helen Keller Archives, "Writing about Helen Keller: Van Wyck Brooks, 1950-1953," Box 217, Folder 3.

79. Barry, "At 70, 'New Spirit, New Freedom'"; Van Wyck Brooks, Helen Keller: Sketch for a Portrait (New York: E.P. Dutton & Co., 1956); Herrmann, Helen Keller: A Life, 282, 330; Helen Keller, "Albert Einstein," Home Magazine 3.4 (April 1931): 6, Helen Keller Archives, "Writing by Helen Keller: Home Magazine, 1930-1932," Box 225, Folder 1; Lash, Helen and Teacher, 608, 676-702.

80. Nielsen, Radical Lives, 112; Lash, Helen and Teacher, 704.

81. Brooks, Sketch for a Portrait, 87.

82. Helen Keller, "Letter to Jo Davidson," July 24, 1950, in Helen Keller: Selected Writings, Nielsen, 289-90.

83. Barry, "At 70, 'New Spirit, New Freedom'."

84. Lash, Helen and Teacher, 759-60; "Helen Keller 'Cannot Be Gay this Christmas,'" Washington Post, December 8, 1940: 16; Barry, "At 70, 'New Spirit, New Freedom'"; R. L. Duffus, "At 80-the Miracle of Helen Keller," New York Times, June 26, 1960: 1; Helen Keller, "Remarks for Publication by the American Weekly," draft, June 1, 1961, Helen Keller Archives, "Writing by Helen Keller: A - General," Box 223, Folder 8.

85. Lash, Helen and Teacher, 753-54, 760-64.

86. The Education for All Handicapped Children act was enacted by Congress in 1975. It required all public schools to provide equal access to education for children with disabilities. In 1990 Congress officially renamed the act the Individuals with Disabilities Education Act.

87. Keller, "Acceptance Speech-Annual Humanitarian Award."

88. "Rich Criticized by Helen Keller," New York Times, February 7, 1913.

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Helen Keller is one of the most widely recognized figures in US history that people actually know very little about. That she was a serious political thinker who made important contributions in the...

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Eugenics Archives reflects the collaboration of scholars, survivors, students, and community partners in challenging eugenics.

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Eugenics Archives reflects the collaboration of scholars, survivors, students, and community partners in challenging eugenics. Bear with us as we rebuild and expand our site! Feedback welcome to rwilson.robert@gmail.com Built by Ben McMahen and the Eugenics Archive Technical Team

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WE'RE IGNITING A GLOBAL REVOLUTION IN ME CARE Our movement fights for recognition, education, and research so that, one day, all people with ME and CFS will have support and access to compassionate and effective care. JOIN US What is ME? Myalgic encephalomyelitis (ME), commonly known as chronic fatigue syndrome (CFS) or ME/CFS, is a ...

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The Puzzle Solver by Tracie White; May 16, 2016 published in Stanford Medicine Magazine 

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The Puzzle Solver by Tracie White; May 16, 2016 published in Stanford Medicine Magazine 

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For three years, Whitney Dafoe's world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a prison.

He doesn't eat. An IV line delivers nutrients and liquids and medicines to keep him alive. He doesn't speak. He's unable to write. Any motion exhausts him. Eye contact hurts him. He can't bear to be touched.

Last December, in desperation, he used Scrabble tiles to communicate, laboriously lining them up to spell out: CANT TAKE CARE OF MYSELF; DONT KNOW WHAT TO DO. At the end of the month, emaciated due to his inability to digest food, he selected five final tiles and spelled out: D, Y, I, N, G. Then he rang a bell for his father.

"My son Whitney woke me this morning to inform me that he is dying," his father, Ron Davis, PhD, posted on the Facebook page for the Stanford Chronic Fatigue Syndrome Research Center that day. "Whitney has severe chronic fatigue syndrome (CFS). He did not say he is dying - he cannot speak. He did not write he is dying - he cannot write. He used Scrabble tiles to spell out his message. I did not answer him - he cannot tolerate anyone speaking to him."

As paramedics wheeled Dafoe into the back of an ambulance that day, he opened his eyes, and for the first time in three years, stared awestruck at the wide, blue sky.

Each weekday, Davis, a renowned geneticist, takes a break from his job as director of Stanford's Genome Technology Center, arrives home at 2:30 p.m. for his shift caring for his son, drops his comfortable, old, brown, brimmed hat on the kitchen counter and walks down the darkened hallway to his son's bedroom door.

He doesn't enter the room right away. Instead, he sits on a chair outside the door in the hallway, watching through a keyhole for Dafoe to find the strength to sit up and pull a blanket over his shoulders, signaling that it's OK to come inside. Dafoe can hear Davis in the hallway. He knows he's there. And slowly he prepares. Sometimes Davis waits, and he waits, and he works, and he thinks, and he puzzles over the mystery behind the closed door.

Over his 50-year career, Davis, a professor of biochemistry and of genetics at Stanford, has become one of the world's pre-eminent solvers of what others call unsolvable puzzles. In 2013, The Atlantic magazine ranked him among the world's greatest living inventors. His biotech methods helped launch the field of genomics, making terms like "artificial chromosomes" and "genome editing" part of the lexicon. A substantial number of the major genetic advances of the past 20 years can be traced back to Davis. And now, his research has expanded into a whole new arena - the search for a molecular cause for his son's illness, and from that, a cure.

Davis is grappling with the most vexing puzzle of his life. And it's personal.

Each day has become a race to unravel the mystery of chronic fatigue syndrome, the disease that is killing his 32-year-old son, a freelance photographer who was forced to move into his childhood home five years ago when he was no longer able to care for himself. It's a puzzle that Davis ruminates over day after day, his mind humming along in high gear, constantly shifting through data, hypothesizing, analyzing.

At night, he dreams of science experiments. Each morning he awakes hopeful, with a new piece of the puzzle to fit into place, or an old one to throw out, and he heads back to work.

When you are a man of science, a world-class puzzle solver, how can you not solve this, the most important puzzle of all?

Chronic fatigue syndrome, also called myalgic encephalomyelitis or ME/CFS, is a disease that has baffled many, one that waxes and wanes, with no definitive tests for diagnosis, and symptoms that vary from patient to patient. Key to diagnosis is an inexplicable exhaustion that lasts for at least six months, and isn't alleviated by rest. Unrefreshing sleep, unexplained pain in multiple systems of the body, cognitive impairments referred to as "brain fog" and digestive ailments are all common symptoms. And then there is "the crash."

Laura Hillenbrand, best-selling author of Seabiscuit and Unbroken, who has lived with CFS for 29 years and spent many of those years bedbound, describes "the crash" - known in scientific terms as "post-exertional malaise" - as an invisible line you know is there, but you're not sure where exactly. Any expenditure of energy, however slight - walking up stairs, say, or in severe cases like Dafoe's, watching someone walk into your room - could push you over the line. Once that line is crossed, the setback can be devastating.

"The exhaustion is so profound it's a struggle to breathe, a struggle to just lie there; it takes every effort just to stay alive," Hillenbrand says. "This can go on for months or years. ... You have to be so careful with every little bit of energy. You just don't know what your line is."

The inability to pin down the disease with a lab test and its often misleading name have resulted in patients getting labeled as malingerers or sent to psychiatric care by doctors who are unable or unwilling to help. The relatively small amount of federal funding has limited research to help find cures.

The National Institutes of Health allocated only $6 million in 2015 for research into CFS, which has roughly 2 million sufferers. (To put this in context, the annual NIH research budget for multiple sclerosis, with 400,000 sufferers, is $94 million.) A historical lack of acceptance within the medical establishment for CFS as a biological illness has resulted in a woeful underfunding of research, Davis says, but he notes signs of change.

Davis served on a panel convened by the Institute of Medicine (recently renamed the National Academy of Medicine) to redefine the illness. The panel's report, published in February 2015, cemented the definition of CFS as a "serious, chronic, complex, systemic disease." In turn, the report spurred the NIH to launch an internal study to analyze CFS biomarkers and promise to bolster research for this "elusive" disease. Most patients, including Dafoe, spend years undergoing fruitless tests and bouncing from doctor to doctor before finally getting a diagnosis.

"We don't have a definitive lab test, so often the attitude is that these people are crazy," Davis says. "Whitney was told that it's all in his head, that he was just depressed."

For Dafoe, the illness started more than a decade ago at 21, or possibly even earlier than that with a bad case of mononucleosis in high school, followed by a spell of headaches and dizziness after a trip to Jamaica during college. More signs of illness arose when he was 23. He'd been in India for several months when he began experiencing stomach pain, bloating and nausea. Two years later, he caught a cold and never felt normal again. He lost the strength to travel, he couldn't set up his camera equipment, eventually he couldn't prepare his own food, and digestive ailments made it difficult and ultimately impossible to eat.

Dafoe was an adventurer, the complete opposite of a so-called malingerer, says his sister, Ashley Davis. He traveled to all 50 states, studied Buddhism in India and Nepal, ran a campaign office for Barack Obama and took photos at his first inauguration, lived with a shaman in the Ecuadorian rainforest, helped build a nunnery in India, rode a motorcycle in the Himalayas.

But by 2013, Dafoe had become bedbound. Pain in his legs when he walked had hobbled him. In his last entry on his photography website, in June of that year, he wrote:
Really sick. I can't talk. Can't type/text enough to communicate. Haven't had a conversation with someone in six months... To die of this illness is atypical; however, to hover in an in-between state where one experiences a 'living death' for years or decades is quite typical.
That was three years ago. Since then, Dafoe's condition has steadily declined.

Since Dafoe was an infant, his family has lived in an elegant, old, brown house in the Palo Alto neighborhood known as Professorville, a short distance from the Stanford campus. Bright Buddhist flags decorate the semicircular porch in the daylight hours and twinkling white lights strung across the front yard brighten it at night.

It's a large house overflowing with a lifetime's worth of science books, much-loved paintings, Dafoe's award-winning photographs - decor that tells the stories of the two now-grown children - Ashley, once a ballet dancer, and her older brother, a Little Leaguer. (Their parents decided to share their last names between their children, the mother's to Whitney, the father's to Ashley.) Author Gertrude Stein's brother once lived in the home, starting a history of opening its doors to charitable and political events - one that the fit the family well. Ron and his psychologist wife, Janet Dafoe, PhD, kept their doors open wide to new ideas, to debate - politics, philosophy, science, medicine. Friends. Family.

But the house has grown painfully quiet in the years since their son moved back in. A hand-scrawled note taped to the front door explains: "Please do not knock or ring bell before 3 p.m. Call or text. Very sick person."

Inside, the back of the house has become a hospital wing for Dafoe.

The family did reopen its doors last summer, holding a CFS fundraiser that drew about 100 people, including the mayor of Palo Alto, and plenty of media attention.

Every member of the family - led by Dafoe when he still had the strength - has become a CFS activist, fundraising for research, improving public awareness of the disease, doing media interviews and supporting Davis in his mission to find a cure.

"Ron feels a huge amount of responsibility and stress," Janet Dafoe says, adding that her husband had an aortic valve replacement in December 2015, returning to his research as soon as he possibly could. "He also has to keep all his other grants up. He spends all the waking hours he can thinking about CFS research."

In 2013, Davis launched the Stanford Chronic Fatigue Syndrome Research Center, which operates within the Stanford Genome Technology Center. As director of the scientific advisory board for the Open Medicine Foundation, whose mission is to find a diagnosis, treatments and a cure for CFS, he assembled a team of scientists from Stanford, Harvard and other institutions and helped the foundation raise more than $2 million in donations. The donations enabled the team in February to launch a "big data" study of 20 homebound patients with severe CFS. He's brought together some of the world's top scientists for a think tank to work on the problem, among them Nobel laureates Paul Berg, PhD, professor emeritus of chemistry at Stanford, and James Watson, PhD, chancellor emeritus of Cold Spring Harbor Laboratory; and Stanford colleagues Craig Heller, PhD, professor of biology, and Michael Snyder, PhD, chair of the genetics department.

But progress toward discovering a cure, or even a cause, for CFS is moving far too slowly for a father whose son is critically ill. Like other scientists who enter new research territory to help a loved one, Davis is pushing particularly hard for results. Twice he has submitted applications for CFS research funds to the NIH, without success.

"It's enormous pressure," he says. "We have to figure this out very quickly, because millions of people are suffering and my son is dying."

To imagine the state of Davis' mind when he's thinking about CFS, it helps to look at a complex chart stored on Laurel Crosby's computer in the basement of the Stanford Genome Technology Center. Crosby, PhD, an engineering research associate who works in the Davis lab, has spent three years attempting to deconstruct Dafoe's CFS symptoms into molecular mechanisms. The chart is a depiction of the key biochemical processes at work in Dafoe's body. It resembles an enormous dot-to-dot puzzle gone awry. All the lines are connected but no picture emerges. Now imagine this enormous dot-to-dot puzzle, called a human metabolic pathway chart, rotating in three dimensions. It's this structure that is constantly whirling in Davis' imagination. He's searching for gaps, for missing pieces, for answers.

"This is Whitney's biochemistry written out," Crosby says, pointing to the computer screen. "You can see evidence of vitamin and nutrient deficiencies because he's being fed intravenously. You can see deficiencies in metabolites that are supposed to go to make energy. The question is whether the machinery is inherently broken, or the system is just out of gas."

"If you look at Whitney's metabolic testing, it's amazing that his body works at all," Davis says. Of the 700 measurable biochemicals or "metabolites" plotted on the chart - including amino acids, carbohydrates, lipids and nucleotides - Dafoe has abnormal levels of 193. "Maybe low metabolite levels are keeping him sick?"

Like Crosby, Davis thinks the energy production system holds a promising clue. He spends a lot of time pondering the inability of the energy-producing structures within his son's cells, the mitochondria, to do their job.

"Everything points to dysfunctional mitochondria," Davis says. "But what is the molecular reason for the dysfunction? Given that there are over 1,600 genes involved in the workings of mitochondria, finding what's wrong is a daunting task. Some kind of infection or trauma or stress might trigger a series of events that causes the body to go into an altered state."

Davis suspects the answer to the CFS riddle lies somewhere in its molecular underpinnings. In his lab, researchers are looking for answers in the metabolic system. But he's exploring all possibilities; other scientists he's recruited - from Stanford, the University of Utah, Harvard University, the University of California-San Diego and other schools - are lending their expertise to investigate other systems of the body, including the immune system and the nervous system. So far, Dafoe's blood samples are guiding this exploration - his entire genome has been sequenced.

"New technology is allowing us to cast a really big net," says Mark Davis, PhD, professor of microbiology and immunology at Stanford, who is scanning Dafoe's infection-fighting T-cells for abnormalities, as well as looking at other aspects of the immune system. "Some would call it a fishing expedition. But fishing expeditions also catch fish."

The hope is that results from the newly launched trial of 20 severely ill CFS patients from Open Medicine Institute in Mountain View - a medical group practice that conducts research and provides care for patients with chronic illnesses - will increase the size of the net.

"You could say Whitney has been the inspiration for this study," says Andreas Kogelnik, MD, PhD, an infectious disease specialist and director of the Open Medicine Institute. The study entails going into the homes of the patients to collect biofluid samples - the easily accessible ones like blood, urine, saliva and stool - then comparing them with those of healthy control subjects. This group of CFS patients, who have not been studied before because they are so hard to reach, is likely to show the strongest molecular signals of the disease, Ron Davis says.

Kogelnik, who treats Dafoe and hundreds of other CFS patients, knows firsthand how difficult it is to get research funding for the disease, and how difficult it is to treat patients. Getting someone of Ron Davis' stature to bring his influence and attention to this disease has made a difference, Kogelnik says. Not only has it helped raise money for this particular study, it's helped lend legitimacy to a disease that struggles for acceptance. Davis' technological inventions that have helped shaped the field of genetics over the past 20 years will also make a difference, he says.

"This gene chip was designed in Ron's lab," Kogelnik says. He's in his Mountain View lab, holding a thin, rectangular DNA microarray, or gene chip, between his thumb and forefinger. The gene chip is a collection of microscopic spots of DNA attached to a solid glass surface. It has on it an array of 70,000 different gene components, Kogelnik says, which will allow researchers to test which genes are turned on or off in a specific DNA sample applied to the chip. This technology will be used to test the biofluid samples from the 20 patients in the CFS study. Those results will be shared with CFS researchers. Davis' inventions have come full circle, returning to help him discover a cure that could save his son.

One recent afternoon, Davis is sitting behind a desk in his office at the Genome Technology Center, preparing to drive home for his afternoon session of caring for Dafoe. He's dressed in old jeans and sneakers; his gray beard, glasses and kindly demeanor lend him a grandfatherly air. The old, brown hat waits for him on the desk.

But Davis wants to take a moment to tell a story about his childhood. It's a story of hope. As a boy, Davis used to buy chemicals at the local drugstore to make fuels for the rockets he'd shoot off in the field out back of his house in a rural area of Illinois. Though he had dyslexia, and his teachers and father told him he'd never be college material, he knew his brain could do some pretty cool stuff. At 14, he would sneak into the local college library at night to read chemistry and physics journals, and he'd get his older sister to teach him the advanced math she was learning in school, partly so he could make better fuel for better rockets, but mostly just for fun.

It was a chronic illness - one that left him bedbound for much of his childhood - that ultimately changed the course of his future, diverting him away from rocket science into medicine. Davis contracted a case of rheumatic fever when he was a year old that never really went away. It recurred maybe 200 times during his childhood in the form of strep throat, bringing with it high fevers, painful swollen joints and inflammation. Trapped in bed, Davis would play mind games to distract himself from the pain and the boredom. He'd dream up new three-dimensional worlds to escape into.

"I'd imagine myself being outside of my body," he says. "Once I got there, I could go anywhere. It was so real. I could explore the room like an ant. I could slip inside the wall plug and explore the circuits. It must have been some kind of self-hypnosis. It required me to create images in 3-D. I'd rotate things in my brain. Anything spatial was always very easy for me.

"One day, I was absolutely miserable with a high fever. The country doctor came in with his little black bag and said, 'I have something new.' That sure made a big impression on me. He injected me with penicillin. Half an hour later, it was just like a miracle. I was completely better.

"I thought, oh my gosh, medicine can do this? And it's a new technology. It set my course right then."

At 2:30 in the afternoon, Davis arrives back at home, drops his hat on the kitchen counter and walks down the darkened hallway once again to take up his post outside his son's bedroom door. These shifts provide his wife a much-needed break in her nearly round-the-clock care of their son. As Dafoe has grown sicker, the boxes of syringes and medicine bottles in the kitchen have multiplied. Nurses and home health-care workers constantly come and go. The acrid smell of antiseptics fills the room. Ashley, an emergency medical technician, cared for her brother full-time for about a year after she graduated from college. She still helps out as much as she can, aids in emergencies, stays over with her mom when her dad travels and brings her parents food.

Janet Dafoe has saved dozens of notecards written by her son from his sickbed when he still had the energy. In January 2015, he tried to explain to his parents what it was like when they entered his room, why it took him time to prepare. He wrote:
Someone in room feels like wind is blowing THROUGH me pulling me away like I'm made of sand and getting blown away... Draining but it goes deeper than it should. There is no part of me that is safe from it. I think it's just because of how little energy I have. When I'm alone I can ration it and think slow, use less mental energy...
And so Davis continues to sit in the hallway, waiting for the signal to enter.

"Once you come in the room he just totally doesn't move at all," Davis says. Dafoe wears headphones to block out any sound. He hides his eyes under the bill of his cap. "He doesn't see you but he knows you are there. I don't know what he does to keep from reacting.

"He spent a year in India. He was fascinated with the Buddha. That's what makes me think that possibly he's meditating to manage the pain and isolation," Davis says. Those brightly colored Tibetan prayer flags decorating the porch were brought back from Dafoe's trip to India.

Since Dafoe's ambulance trip to the hospital in December, his parents have been trying to add nutritional supplements to his diet through a feeding tube implanted in his gut to wean him off the IV and add missing metabolites. So far, his body has rejected most attempts at adding food supplements; they cause unbearable stomach pain and nausea. But his parents remain hopeful.

"Looking at his lab tests, he's unbelievably strong to have all these things wrong with him and still be alive," Davis says.

"I have a lot of respect for him," Davis says. He knows of other severely ill CFS patients who have killed themselves. But Dafoe is committed to doing whatever he can to help find a cure for CFS.

"He's hoping to do this for everyone with CFS," Davis says. Then he pauses. "I told him it would take a while."

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A researcher changes course to help his son

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Find out about common signs of autism in adults.

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A rich melange of symptoms occurs in chronic fatigue syndrome (ME/CFS). Five core symptoms dominate (fatigue, post-exertional malaise, unrefreshing sleep, pain and cognitive problems) dominate but many others are found.

People with chronic fatigue syndrome (ME/CFS) experience unusual levels of fatigue or exhaustion after mild exertion. The Centers For Disease Control (CDC) calls the fatigue ' severe, incapacitating, and all-encompassing" . Approximately 25% of people with chronic fatigue syndrome are house or bed-bound.

Post-exertional malaise (PEM) - The term 'post-exertional malaise' (PEM) was coined in an attempt to describe a unique kind of fatigue present in ME/CFS. It refers to symptom flareups after physical or mental exertion that can last for days to weeks. Exercise tests suggest many people with ME/CFS have a unique metabolic deficit that prevents them from regularly engaging in much physical activity.

Studies indicate the disease is amongst the most functionally disabling known. People with ME/CFS are as or more functionally limited than people with type II diabetes, multiple sclerosis, congestive heart failure and end-stage renal disease. They also have a lower quality of life than people with cancer, stroke, renal failure and schizophrenia. Twenty-five percent are home or bed-bound. One study, found that only an astonishingly low 13% were employed full-time.

Unique Types of Fatigue Present

A study which identified five different types of fatigue in ME/CFS, only one of which was found in the healthy population, suggested unique types of fatigue are present in the disease.

'Post-exertional fatigue (or malaise)' - occurs after physical or mental exertion; it is considered a hallmark symptom of this disease.

'Brain fog' - involves having difficulty with words and concentration; it is considered a hallmark symptom of this disease.

'Wired But Tired fatigue' - characterized by low energy levels accompanied by a feeling of over stimulation or being unable to relax, feeling 'wired and tired' is common in chronic fatigue syndrome.

'Molasses Fatigue' - is characterized by a feeling of heaviness in the limbs.

Flu-like fatigue - similar to what people who have a cold experience.

Problems Getting a Good Nights Sleep

Almost all chronic fatigue syndrome (ME/CFS) patients experience unrefreshing sleep and/or reduced or increased levels of sleep. Sleep issues can range from insomnia, to early waking, to difficulty achieving deep sleep. Sleep studies focusing on traditional sleep issues have had mostly unremarkable findings but recent studies employing measures of autonomic nervous functioning suggest that system is intimately involved in sleep and other issues.

Difficulty Thinking

People with ME/CFS often report more difficulty with thinking including slowed understanding, trouble finding or saying words, trouble with writing, reading and mathematics, inability to keep track of things, short term memory problems and poor concentration. Studies indicate that problems with 'executive functioning' (working memory, planning, organizing) are particularly affected.

Pain

Widespread muscle and joint pain, tension headaches and shoulder and neck pain are common. Migraines without aura are common. Upper body pain is particularly common. Studies indicate that lower pain thresholds, particularly after exercise, are present and allodynia can be found.

Autonomic Nervous System Symptoms

Many autonomic nervous system symptoms are found including difficulty standing (orthostatic intolerance), rapid heartbeat and poor blood pressure regulation (particularly during standing) that causes dizziness, nausea, fatigue, headaches, sweating, pallor, mottling in lower limbs, etc.; palpitations, breathing dysregulation (breath holding, irregular breathing, exercise induced shortness of breath), irritable bowel syndrome (constipation, diarrhea, cramping, bloating and/or nausea), visual disturbances, burning sensations, chest pain...

Sensory Overload

Hypersensitivity to light, sound, odors, vibration, speed, reduced multi-tasking ability, difficulty making decisions, motor overload - increased clumsiness, etc. when fatigued, dizziness, numbness, tingling, nausea are often found.

Visual Tracking

Vertigo, loss of depth perception, inability to follow quickly moving objects, etc. are common.

Muscle Coordination

Poor coordination, effortful movement, difficulty with everyday activities such as brushing one's teeth, dialing the telephone, etc.

Hormonal Type Symptoms

Increased or reduced body temperature, hot/cold feelings, intolerance of weather extremes, feverishness, sweating episodes, weight gain or weight loss, anxiety or panic attacks, alcohol intolerance often occur. Studies suggest gynecological issues are common in ME/CFS.

Immune System Symptoms

Sore throat, tender lymph nodes, fever, muscle and joint pains, new sensitivities to food, drugs and/or chemicals are common. Once thought to be a hallmark of this disorder, studies have indicate that enlarged lymph nodes are not common.

Mood Issues

Irritability, depression and/or anxiety commonly occur in chronic diseases and are increased in ME/CFS as well. Mood disorders are not increased in people with ME/CFS before they become sick.

How to Prove to Your Doctor You've Got Chronic Fatigue Syndrome (ME/CFS) and are Not Just Depressed

Learn More About ME/CFS

The Basics - basic overview of symptoms, diagnosis, prevalence, treatment options, etc. plus a boat load of resources

Tips For Newbies - new to ME/CFS or FM or just trying to catch up? Check out our Tips for Newbies on just about everything associated with these diseases.

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Core symptoms include post-exertional malaise, cognitive problems, sleep problems, pain and symptoms associated with autonomic nervous system abnormalities.

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A lot of you ask or wonder in the comments how I write these pieces or make these photographs in this blog when I'm so severely ill with ME/CFS. The answer is actually pretty simple - sacrifice.

For example, during a recent week I woke up with energy and immediately used it to start working on a post to share on my social media pages. But after writing the post, making photographs for it and getting it scheduled on Facebook and Instagram and Twitter and published on my blog (which all adds up to a lot of work), I was exhausted and wound up laying down still, sleeping uncontrollably for the rest of the day. And these are long 36 to 48 hour days for me. For complicated reasons, my schedule does not go with the sun, but rather with how long it takes to pump enough calories worth of liquid food into my jtube to sustain me, and when I can't sleep or my stomach gets sensitive and delays my schedule, which happens most days, I wind up with 36 hour or 48 hour days. So in the end, the only thing I was able to do for 3 days was make a social media post during the only time that I had any mental clarity. The rest of the time I couldn't answer emails, or spend time with my Niece when she was here, or text with my sister, or stay connected with people I care about online, or watch any movies or series, etc. I laid in bed still and mostly slept. This pattern is quite common for me.

So it's not that I have more energy than other people, it's that I prioritize writing and photographing and sharing that with all of you above all else. When I have energy, creating advocacy content is the first thing I do and often the last.

I had the idea recently to offer people the option to support this work and the energy I put into it. I don't have much going on outside of this work like a job, or a relationship, or many friends, or much energy to connect with my family. This is what I do with my free time and energy.

After I got a bit better from Abilify, I had the energy to work on more than I can now and more than this ME/CFS advocacy work and I started making my own headphones which is a hobby I started when I became housebound, as it's something creative I can do sitting down inside that uses little energy. I completed multiple headphone models and started a website hoping to start a company selling them. You can read more about my headphones here:
rhythmdevils audio
But I am now too sick to make production units to sell, so decided to hire a friend to make them for me, but I now have too little energy to train him and I'm worried about crashing from the training sessions even if I take Ativan to protect me. So it has been delayed for a long time. But i'm telling you because I may have a headphone company up and running at some point. Still, any funds generated from that company would just go towards paying back the significant R&D costs of developing them. And I'm too sick to keep creating new models and possibly too sick to make the company happen at all which breaks my heart as I've put so much love into the project and they are truly special, one of a kind headphones. So I may eventually have another job, but right now this work is my job and my purpose and it will always come before anything else.

My ME/CFS advocacy work also costs a lot of money in all the equipment I need to maintain like my computer, backup hard drives, the latest iPhone for the best image quality, a DSLR, a huge amount of camera gear to allow me to make images from bed, etc.

So since this ME/CFS advocacy work is a job for me (one I love) and is expensive, I'm going to let people make contributions to my work if they choose to on a Patreon page I've created, or directly with one time or recurring donations in multiple payment formats.

I want to be clear about this with you all though, that it is an option. I know that many or most of you are having a hard time financially, as this illness usually takes away our means of income while at the same time costing a lot of money because insurance doesn't consider it legitimate. I could not even get a wheelchair from my insurance company covered when i could no longer walk to the kitchen to get food to keep myself fed, and a wheelchair would have allowed me to get to the kitchen freely. I had to buy a used wheelchair myself on Craigslist. This is just one example of course, there are many examples like this from all of us, most of which are cruel, inhumane and devastating. So I understand that it is difficult or impossible to maintain an income and a very expensive life to lead.

So I want to be clear that nothing I create will ever cost you money. I will never charge for anything of substance that I create unless it is published somewhere that does charge money for accessing it. My goal is to help ME/CFS patients, not to make money.

I also understand that donating to ME/CFS research is the most important thing, and I have links to donate to ME/CFS research displayed prominently everywhere i can, always above any link to support me.

But I believe that we need more than just research donations and that my work is important for awareness (which generates research donations) and directly important for patients, caregivers, friends, loved ones and our world wide community as a whole to survive and sustain itself.

So I want to allow people who can give back to me an opportunity to do so in whatever amount makes sense to them financially. I might make some exclusive content on my Patreon site, but it will never be anything that I think would benefit fellow patients or the community, it would only be fun bits and pieces. And if you donate a certain amount that makes it financially possible, I hope to offer an annual print of an image of mine, possibly with a quote or bit of inspiration.

I'm telling you this because I know how the internet works, rumors spread quickly and often seem more valid than the truth. I want you to know the truth here first and avoid you just finding "support my advocacy work" buttons on my blogs or pages and thinking the worst or hearing rumors from others about secret content. There will never be secret content for people who can contribute, only the knowledge that you are supporting me and possibly a gift if the amount you contribute makes a gift financially feasible for me to give back to you and I have the energy to create such a gift on top of my work.

Most importantly I want to be clear that I only want people to give what they can and what feels right to them. If that is nothing, that is fine.

So when you see buttons here or there to support my advocacy work, do not feel pressure, do not feel obligation, just feel an opportunity to give back to me if you enjoy or have benefitted from my works and if you are financially able to give an amount that won't negatively impact your life.

I want to thank all of you regardless of whether you can give back to me financially or not, because you all give back to me in a huge way. I will always be grateful to this entire community for the sense of purpose you have given my life in this work. I don't know what I would do if I had no way of helping the ME/CFS community. Even in 2013-2020 before I took Abilify, when I could not make this work because I was too sick to use a phone or computer or camera or even communicate in any way whatsoever, I was planning this work, writing pieces in my head, going over them time and time again so I would not forget them, and imagining what I would create. You all have given me a way to, in some ways, fulfill my dreams of using my creative energy to help people.

So thank you all so much from the bottom of my heart. I love the ME/CFS community, I love all my fellow ME/CFS warriors and the people who help them or sustain them or befriend them or love them. I love this whole community very deeply and would do anything in my power to help all of you.

Love,
Whitney

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A lot of you ask or wonder in the comments how I write these pieces or make these photographs in this blog when I’m so severely ill with ME/CFS. The answer is actually pretty simple - sacrifice.