DSQ > Fall 2007, Volume 27, No.4
Abstract

While cross-disability consciousness developed in the United States and England in the 1970's, a similar consciousness failed to emerge in Israel until the late 1990s. Furthermore, even in countries with a long history of cross-disability collaboration, there is a tendency for people with psychiatric disabilities to remain excluded from the ensuing disability community. The present article had its origins in the course "From Personal Coping to Social Responsibility: Leadership Training for Social Change for People with Disability," initiated and funded by the Disability Rights Commission in Israel, and developed and implemented by Shatil, the Empowerment and Training Center for Social Change Organizations. An explicit goal of the course was the development in Israel of a cross-disability consciousness inclusive of people with psychiatric disabilities. In the present article, three course graduates and the course facilitators reflect upon the insights that emerged from the cross-disability discourse generated among participants, during the course and in the course of joint writing about the course. Special emphasis is given to the dynamics and effects of the inclusion of a large sub-group of people with psychiatric disabilities in the cross-disability group.

Introduction

A necessary condition for the development of movements for social change among oppressed populations is the crystallization of a collective group consciousness. Through this consciousness a critical mass of group members comes to perceive their individual difficulties as the product of unfair treatment and conditions systematically promoted by the dominant culture (Barnartt and Scotch, 2001). What defines a social group whose members can develop a "collective group consciousness"? Young (1990) describes members of a social group as having a specific affinity with one another because of their similar experience or way of life, which prompts them to associate with one another more than, or in a different way than, with those not identified with the group. A social group is differentiated from an aggregate or from an association by its emphasis on a shared sense of identity based on identification with a certain social status, and the common history that social status produces. Young notes that an essential characteristic of a social group is that one finds oneself as a member of a group, which one experiences as always already having been.

Since the beginning of the disability movements in the 1970's there has been an ongoing dialectic between two overlapping but separate collective identities, that of people with a specific disability, and that of people with disabilities as a whole. In the early stages of the movement there were those who predicted that it would be difficult if not impossible to forge a broader collective identity of people with disabilities (Barnartt and Scotch, 2001). It was noted that people with different disabilities do not always identify with, or see themselves as experiencing a shared fate, with people with other disabilities. The difficulties people with different disabilities face, and the solutions they seek, are often not only different but even contradictory (Scotch, 1989).

Despite the predictions, a collective consciousness based on the identity of "people with disabilities" did form. This collective was strong enough to support successful activism through which, in addition to specific-disability demands, cross-disability demands — especially in the realms of accessibility and equal opportunity — have been promoted in a number of societies. Davis (2002) even goes so far as to claim that the phase of shared identity is now being eclipsed by a next phase in which, as each disability sub-group feels secure enough to explore their uniqueness and difference, the solidarity of the larger group is deemphasized.

The collective disability consciousness developed in the disability movements was founded, at least in part, on a conceptualization of the collectivity of people with disabilities as an oppressed minority group suffering — in ways similar to other minority groups identified by race, ethnicity, gender, or sexual preference — from economic and political oppression. It seems that this conceptualization can compel people with different disabilities to joint political action, so long as people with specific disabilities "find themselves" in the broader identity of a "person with a disability," if this identity becomes compelling over and above other competing identities, and if there is a community of people with disabilities that is inclusive of people with one's specific disability.

The Development of a Collective Disability Consciousness in Israel

The difficulty of creating a collective disability consciousness is compounded by the prevalence of a disability hierarchy, in which some disabilities are perceived by society and by themselves as having a higher status than people with other disabilities (Thomas, 2000). Disability groups differ from one another based on their varied histories, levels of visibility, social and economic benefits, the structure of the welfare system, and cultural perceptions, but perhaps the experience that most distinguishes them from one another is the degree of stigma attributed to the disability. Physical and sensory disabilities have historically been more socially acceptable than psychiatric and cognitive disabilities, and members of the former tend to share society's stigmatic perceptions of the latter.2 This has been reflected in the tendency for people with these disabilities to be doubly excluded — once from society as a whole, and a second time from cross-disability coalitions that purport to represent them.

This identity dialectic has played itself out in Israel in a unique way. Weiss (2002) claims that historically, collective discourse and identity construction in Israeli society has idealized the strong, masculine, healthy body of the pioneer, soldier and laborer. People with disabilities, on the other hand, perceived unfit for contributing in these most valued activities, were portrayed as "deviant bodies" and were excluded from the public sphere. Within this context, how was society to relate to those people who became disabled while in the process of carrying out society's most valued activities? The answer to this question is reflected in a unique disability hierarchy that emerged in Israeli society. Army veterans with disabilities and individuals with work-related disabilities have long had social spaces and organizations of their own and were privileged in terms of the benefits and services they received from the state (Rimmerman & Herr, 2004). This has resulted in a differentiation in disability identities in Israel, whereby people with army and work-related disabilities differentiate themselves from the recipients of the General Disability Allowance, the largest but most disadvantaged group.

Perhaps, in part, due to the salience of these alternative disability identities in Israel, while cross-disability consciousness developed in the United States and England in the 1970's, a similar consciousness failed to emerge in Israel until the late 1990s.

Parent-advocacy organizations have long existed for many specific disabilities, many of which have also become major service providers as the government has progressively contracted out services to the non-profit and private sectors. Similarly, advocacy organizations of people with disabilities have emerged, especially in the last two decades, for an increasingly diverse range of disabilities (Alon and Gidron, 2007). While the development of parent and self-advocacy organizations attests to a degree of politicization of separate disability consciousness, it does not indicate any collective disability identity.

In fact, it seems that a cross-disability consciousness did not grow from the "bottom up" within the disability community, but rather has, to a certain extent, been the product of the encouragement and facilitation of professionals in non-profit and government agencies who established theoretical and organizational frameworks for cross-disability collaboration. For example, Bizchut, a professional disabilities-advocacy organization largely responsible for formulation and passage of the cross-disability Equal Rights for People with Disabilities Law of 1998 (ERPDL, hereafter the Equality Law), established a coalition of disability organizations to lobby and struggle jointly for the implementation of the Equality Law and further legislation. Similarly, the law itself also set up the Disability Rights Commission within the Ministry of Justice for overseeing its implementation, and this commission appointed a cross-disability advisory committee to accompany its progress.

This is not to say that disability leadership has not played an important role in the development of a cross-disability consciousness. Rimon-Greenspan (2006), in her analysis of the two disability protests in Israel in 1999 and 2001, notes that:

their importance lies in the fact that the disability community in Israel is gaining a voice of its own, self-representation and leadership, and is thereby reclaiming its place in the Israeli public sphere. In other words, the power of the protests was in turning the disability community into a social actor that can no longer be ignored, or constituted as 'invisible' in the larger society. Most importantly, through the protests the disability community became 'visible' to itself, i.e., it initiated an inner-community process of raising a political disability consciousness and identity. (p. 75)

Rimon-Greenspan (2006) found further that the adoption of a political consciousness of disability occurred mainly at the leadership level, and even there to a limited extent, while the majority of the community still lacks a political consciousness of disability. Thus the disability community in Israel seems to be in the early stages of developing a politicized collective group consciousness.

Methods

The present article had its origins in a course entitled "From Personal Coping to Social Responsibility: Leadership Training for Social Change for People with Disability". The course, held in May through July, 2006, was initiated and funded by the Disability Rights Commission of Israel's Ministry of Justice, and developed and implemented by Shatil, The Empowerment and Training Center for Social Change Organizations in Israel. Leaders of existing advocacy organizations for people with a range of disabilities were invited to jointly design a process explicitly oriented towards developing a new cadre of leaders with disabilities who, through their participation in the process, would bring a cross-disability consciousness to their activism. An additional important guideline for the course was that its structure and process should be actively inclusive of people with psychiatric disabilities, in an effort to counter the tendency toward their exclusion within the disability community. The course was open to but not attended by people whose disabilities were derived from army service or work-related accidents. As such, the cross-disability consciousness fostered was among those who are at the "lower" end of the disability spectrum, recipients of the General Disability Allowance (with the exception of people with cognitive disabilities, who were invited but not actively recruited, and ultimately did not attend the course).

The current article has been jointly written by the two course facilitators (Israel Sykes and Ayala Vlodavsky) and three of the graduates (Eyal Menashe, Elliot Lazerwitz, and Limor Zagha-Shabbat). In writing the article we have not taken upon ourselves to describe the course, its contents, and its outcomes (which are described elsewhere, in Sykes and Vlodavsky, 2007) but rather to give voice to reflective accounts of the meanings that participants in the course experienced as they moved from a separate disability consciousness to a cross-disability consciousness. Because of the uncommon emphasis in the course on the inclusion of people with psychiatric disabilities, we have given that process an important place in the reflections. It should be emphasized that the reflections relate primarily to the process aspects of the course, while not elaborating on the equally important contents of the course, which focused on developing knowledge and skills for leadership and political activism.

All graduates of the course were invited to participate in writing a joint article. Three who expressed interest attended an initial meeting in which they were each, in turn, asked to describe their experience in the course, with an emphasis on the effect of inclusion of people with psychiatric disabilities. These statements were documented and given back to participants. On the basis of these statements, two participants/students wrote an initial draft, while one additional graduate who was not at the meeting also wrote a draft. These drafts were subsequently first jointly shaped with the lead author so that they would both be authentic representations of the author's experience and also fit the context of the journal article, and the two that were written in Hebrew were translated into English. These were then shared with the whole team as a basis for jointly reflecting on the meanings that emerged from the new texts. The third reflection was also subsequently revised so that it came to be both a self-reflection and a conversation with the first two narratives. The introduction and discussion were written by the facilitators in order to frame the reflections and to connect them with relevant literature.

Reflection # 1, Eyal Menashe

I first heard about the leadership development course from my advisor at the Technion - Israel Institute of Technology. The proposed course suited me in terms of both its contents and timing. I was in the middle of a number of struggles for promoting sign language at the University and I felt that I needed more knowledge and tools, and could use some professional guidance. In addition, I was attracted to the challenge of participating in a group with people with a range of disabilities.

While I see myself as an open-minded person, I admit that I had certain stigmatic perceptions of the mentally ill. I had never met such people. What I assumed about them prior to the course was that they were similar in their madness to Dr. Jekyll and Mr. Hyde.

When I organized a ride to the first meeting of the course, one of my fellow travelers was a person with a psychiatric disability. I didn't know what to expect. My wife was worried and told me to be careful on the way.

In the course of the first two meetings, a lot of things about the participants with psychiatric disabilities remained unclear. I had a lot of questions, such as: How do these people live? What happens and what do they do when the outburst comes? Do they turn into a different person like Mr. Hyde? How do they deal with this? What do they feel when it happens? How do they relate to the people around them?

In the third meeting we were divided into smaller groups that were heterogeneous in terms of disabilities, and we were each asked to describe our coping with our disability, on the one hand, and our coping with society's response to our disability, on the other. It was here that I was exposed for the first time to the experiences of people with psychiatric disabilities. This more personal meeting opened my eyes to a lot of new perspectives on life and on the lives of people with different disabilities.

The life stories of the participants with other disabilities were in many ways analogous to mine. Beginning from the moment I was born, through my childhood, adolescence, and today. I found a great deal in common between myself and the others, things that previously had never occurred to me. Like the shame I felt around people because of my use of sign language or hearing aids; the ways that the regular children in my class used to make fun of me; my difficulty getting along and fitting in with my peers and in the community; my giving up on things that I wanted because of my shame and my difficulty communicating; feelings of inferiority and frustration; and missing out on the many things that were inaccessible to me.

Through this meeting I developed greater sensitivity, understanding, and identification with people with other disabilities. After all, I too faced daily many of the very same frustrations and challenges as they. I came away from this meeting with the realization that while we were separated from one another by society's definition of our disabilities, our life experiences were nonetheless surprisingly similar.

As the course progressed and more details of people's lives came to the surface, our shared experiences and interests became increasingly visible. I saw that people who are deaf and people who are hard of hearing have more in common than I expected, even though each seem to live in different worlds. I came to know that people with mental health problems are people like me and like anyone else. They too have families, and sometimes marry and have children. They live with a disability just like I do.

My activism has expanded since the course. I am more active and am pursuing change on several different fronts. Similarly, I have greater self control when I am faced with others who display ignorance or lack of awareness. I accept this as a state of initial "shock" that the other person gets when he meets a person like me for the first time, and I realize that it will take some time until he "gets the picture" as the knowledge gap diminishes. Despite the growing awareness in society of people with disabilities, I have faced such situations in the University — more among professors than among students.

My self-confidence has increased as a result of my deepened acceptance of my own disability. For example, if someone tries to make contact with me and we have difficulty communicating, I say it's too bad they don't know sign language. Not out of arrogance or criticism, but as a way of reaching out, and as a step toward developing awareness and recognition of the world and language of the deaf community.

Reflection # 2, Limor Zaga-Shabbat

I was very curious what it would be like to sit in a circle with people who cope with different disabilities. Of course, every disability sub-group brings its own common experiences, language, accessibility, and special needs. This holds true for people with physical disabilities like myself, people with visual and hearing disabilities, as well as for people with psychiatric and learning disabilities.

While I had previously taken part in two courses for people with a range of disabilities, neither course had included people with psychiatric disabilities. The leadership development course was thus my first opportunity to get to know people with psychiatric disabilities, and not only as a small minority, but as a dominant sub-group comprising nearly half of the entire group. I wondered what it would be like to be in such a group, what would "they" bring to the rest of us, and how would their participation affect the course? I wondered whether I would be able to understand people with psychiatric disabilities, and if they could make themselves understood? I wondered if I would discover that I have stereotypes about them, and if I would be able to admit to such stereotypes?

I also wondered what distinguished them from me. I have no doubt that my disability has taken a mental and emotional toll on me. After all, the need to live in a body that is only partly functional inevitably has a deep effect on one's psychology. So how are they different from me?

As we progressed in the course, it became clear to me that while we were establishing positive relationships with one another and discovering many experiences that we had in common, people with psychiatric disabilities had a particularly hard time conveying to the others in the group the experience of living with a psychiatric disability. I heard this admission directly from them, and other members of the group also expressed frustration that it was difficult to understand from their words what they experienced as a result of their disability. A hearing aid, a wheel chair, sign language, a walking cane — all of these tools of accessibility compensate for an obvious disability. What, then, is a psychiatric disability, and what means of accessibility can compensate for it? That remained much more obscure.

I found that I needed to use my intuition a lot and to engage the participants with psychiatric disabilities in more personal conversations in order to understand them. In the session in which we were divided into smaller groups and invited to share our stories of coping, I had a chance to listen and to dare to ask things that I needed to know in order to better understand their experience.

At a certain point in our development as a group, in an effort to help make more transparent the experience of coping with a psychiatric disability, one of the facilitators (Israel Sykes) told a story from his life as a person with bi-polar disorder.3 I immediately felt that his sharing from his own "disability resume" wrapped us all in a special intimacy, and anointed us all with courage as members of a community of people with disabilities. I have no doubt that Israel's choice as a facilitator to put his own experiences as a human being and as a person with a psychiatric disability into the center of the group — in an appropriate way and at the appropriate time — added depth to my experience in the group. He showed by personal example that despite all of the difficulties our disabilities pose, they could also be a foundation for important and meaningful work in the world.

For me the course provided a context in which I could express parts of myself that I had always kept inside. Over the years I kept to myself all of the pain that my disability caused me. At most, when the pain became unbearable, I would sometimes tell my mother. This was not a matter of deliberate choice. There was simply no place for me to let it out. In the leadership course, the pain of coping with the disability was given a place of respect. Under these conditions, my inner voice could be expressed for the first time. I found that when others expressed their pain and it was received with respect, this gave me the courage to express my own. And I see that once expressed, this voice has become a crucial resource for my own activism.

The Internet forum played an important role in this process. It was a lifeline for releasing emotions on the edge of explosion. Each time it was a different matter that pushed me to our virtual meeting-place. The forum was almost like an illicit rendezvous with a group of my peers — no matter which disability they had, in the end they all understood that place where things are difficult. Sitting down to write in the forum took me each time on an unpredictable journey. I began with a feeling and little by little I processed it until my inside world was out there in writing, sent off for the others to see. I waited with suspense, hoping their responses would be evidence that I had been seen and understood. And when the responses contained new and interesting insights, I fed them back inside, changing in the process.

A powerful experience for me during the course was the unbearable tension I experienced between life in the group and life on the "outside." In the group — in face-to-face and virtual meetings — I felt my fullness and my belonging. In the outside world I have to wear masks. It is all but impossible to stop and share with others my seemingly trivial personal difficulties and special needs as a person/woman/mother with a disability. So I experience myself in the outside world as unheard and unseen. That does not mean that I lack people whom I like being with or whom I enjoy meeting, but the constant need to hide my inner experience takes an emotional and physical toll. For this reason the transition from the group to the outside world was sometimes unbearable. Little by little, I began to bring the self that I had discovered in the group into my other life contexts, and especially into expanding my activist activity.

The group meetings enabled me not only to externalize my inner world for the first time, but also to deliberate with peers about actions that I was contemplating in the "real world." In the group, I found support for my entitlement as a parent with a disability to access to my child's classroom, and through the course, I met professionals with the knowledge and the know-how to help me achieve a successful outcome despite initial resistance in the school.

Reflection #3, Elliot Lazerwitz

Even in the best of times, life in Israel is never easy. Coming here to live is a kind of moral statement. What I've learned from my "severe and lasting mental illness" that followed, is one's need to be faithful to one's culture and values, in the midst of subtle expectations to change. When one betrays one's values, the downward slope is quick to becoming what one is not. In my case, the price to be paid was devastating.

I was a teenager in the 1970's, just arrived here from the American Midwest. Thirty years later, I began to make some closure. I believe the people in the Leadership Course for Social Change, each of us bearing some sort of disability and difference with integrity and grace, helped me to awaken. I've come to believe that people with different disabilities have much to gain by getting to know one another and, once trust is established, beginning to work together as a collective for social change in the arena of disabilities and perhaps onwards.

When looking at the literature on disability, at the conventions and conferences, one rarely finds mention of people with psychiatric disabilities — despite the fact that we make up a third of the entire disabled population, the single largest segment in fact. It sometimes feels as if we're a disability apart.

Why is this so? Where do we fit in the disability picture? Do we fit in? Are we being excluded? If so, why? Have we ourselves set ourselves apart out of a sense of being different? Is there some essential difference which stands as a barrier between our disability and all the others? Finally, is this "sense of difference" something chosen by us, consciously or not, or is it imposed on us by others? This article poses an opportunity to reflect upon these rarely discussed questions.

Recently I was talking to a prominent leader in the mental health disability movement in Israel. I was trying to make the point that everybody in this world has some kind of disability, of personal pain, that we have no special rights when it comes to human suffering. Although most people living with mental illness have experienced great personal devastation, many other people have led hard lives, too. Suffering is subjective and there's no way to measure who is worse off. When my friend refused to acknowledge the possibility that anyone had it worse than us, I replied in these words: "We may have suffered, more perhaps than most people in this world, but we are still obligated to respect the suffering of others."

Why do so many mental health consumers (such as myself, sometimes) remain stuck in the traumatic indignities and horrors of our psychiatric lives? Our anger and rage can energize our advocacy against the many injustices in the psychiatric system. But for me personally, it can also result in corrosive rage, bitterness, or self-centeredness. You might say, "Why not just get over it? Been there, done that!" Or, "get a life!' Many survivors of the Nazi Holocaust have done just that — gone on and rebuilt their families and their lives. Can we learn from the survivors of the concentration camps? You might ask, "why not choose an easier way of life than outspoken activism, with less stress than exposing oneself in the media, or uphill, wearying political advocacy in an indifferent legislature?"

Yes, I'm stuck in the past sometimes. There's this grip which our hospital experiences have. There's the resulting loneliness, strained relations with friends and family, difficulty in finding work or a profession, frustration from financial dependence on our parents. It seems that only another "survivor" can really understand this traumatic way of life, and it would be unwise to confide in anybody else.

Some of us disdain the sealed-off subculture of mental illness. Others seem to enjoy identifying with that role, plunging wholeheartedly into the "mental patient identity." Why does "mad pride" become a badge of pride for some of us, while others do their best to put their bad years behind them and return to "normal social roles"? Why freely adopt a stigmatized identity? Have social and economic conditions left these people no other option?

Here's my take: In our culture there are life scripts and narratives, some approaching the accepted norms, some straying from them. The experience of life for a person with disabilities will inevitably stray from the accepted norm. As a youth, traumatic experiences occur such as bullying or sexual violence. Later on come issues like profound loneliness, dependence upon parents, and living in grinding poverty. It's been said that "experience dictates attitudes," and difficult times in life often, indeed, lead to bitterness, passivity, nihilism, or cynicism.

For people with physical or sensory disabilities, these "hard times" are very, very hard. But what people with psychiatric disabilities are dealing with goes beyond what I have described. Society expects us to bottle up our experiences within. Our disabilities are invisible, therefore they lack legitimacy. They aren't part of accepted social discourse. They are either hidden, or sources of mockery or outright fear. Our life experiences cease to be legitimate topics for discussion. As a friend once said, "It's like we're criminals — but who have we hurt?"

If people living in the mental health subculture, in a moment of naïve hope, should mention their past to co-workers, employers, family members, relatives, neighbors — beware, it's likely to backfire. Reactions can sometimes be surprisingly encouraging and warm. On the other hand, we may encounter shock, disbelief, scorn, or outright rejection. It's stigma that's behind the bad reactions, and it's the topic of much research. In order to survive in the "normal world," we learn to conceal the ups and downs of our illness, and hence the true degree of our suffering — and the courage, integrity and persistence of our struggle. This helps us achieve a nominal degree of safety. And this need for secrecy is why so many of us are loath to "self-identify." And in turn, it is a major reason why it's hard to set up mental health advocacy groups — people feel they have too much to lose.

Here's my second point: People with psychiatric disabilities are dealing with something beyond missing physical or sensory capabilities. In the leadership course, we learned of the struggle of life led by people using a power wheelchair, of the struggle and deep frustration of hearing-disabled people, when dealing with verbal communication from bus drivers and bank cashiers, of the searing pain felt by people with rheumatic disease walking on inflamed joints, and of the bones broken by blind people tripping and falling over objects they cannot see. Previously I made the point that suffering can't be quantified or objectively compared, that basically we're all in this together.

I'm trying to describe this barrier of misunderstanding, between our disability and the others — the barrier spoken of so eloquently elsewhere by Limor and Eyal. This wall has largely prevented mutual cooperation and activism between us all. How can greater understanding — might I say "dialogue" — be created?

Again, I must speak of the most basic differences between "us" and "them." As far as I know, most other people with disabilities live on a more-or-less even plane, when speaking of physical or emotional pain. When looking at the "life cycle" of a "person with mental illness" — you're likely to see wildly cycling moods, or episodes of hallucinations. You'll see episodic hospitalizations which drain us of strength and spirit, and often leave us physically ill. This disability affects our behavior, and our personal relationships with those closest to us are severely disrupted. (What's tragic is that most of us are sensitive and need love, but it's our friendships and intimate relationships that are cut off.)

Mistrust stands between psychiatric survivor activists and other disability activists. Mistrust stands between us and other activist groups. The wariness we developed to survive in a society where staying alive can be a daily struggle, keeps us from uniting. And things are progressing, but slowly, Lord, so slowly.

I hope that if and when an extensive cross-disability alliance is formed in Israel, we will feel stronger and safer. Our approach to advocacy leadership must evolve, despite the odds, into an environment, in which all parties learn to trust one another, hopefully with a non-violent, trauma-oriented approach. Perhaps real progress can then be made, towards a more livable and sustainable society in Israel.

Discussion

Fraser (1989) notes that narrative conventions available for constructing individual and collective stories which are constitutive of people's social identities include "modes of subjectification": The ways in which a discourse positions the people within it as specific sorts of subjects endowed with specific sorts of capacities for action; for example, as "normal" or "deviant", as causally conditioned or freely self-determining, as victims or as potential activists, and as unique individuals or as members of social groups.

The reflections of participants in the leadership development course all reflect a transformation of the mode of subjectification experienced by course participants as a result of their participation in an intensive social context whose discourse addressed them from a new position — as freely self-determining potential activists and leaders, and as unique individuals with specific disabilities who were part of a collectivity of people with disabilities. In this context individuals with different disabilities were able to "find themselves" (Young, 1990) and each other as members of a collective of "people with disabilities." This collective disability identity did not replace their identities as persons with specific disabilities, but rather supplemented it, enabling them to use their experience to deeply connect with groups of others with whom initially they had been disconnected. In doing so, they deconstructed their own previously established identities, replacing them with an expanded and more complex view of themselves, and a heightened sense of the political nature of their own experience. This broadened experience of themselves and their relationship to others became an important resource for political activism.

One striking aspect of the narratives, especially those of Limor and Elliot, has to do with the explication of the psychological dynamics and costs of living with a disability in a society that would prefer to ignore and deny human suffering (and its responsibility for that suffering). The writers of the narratives describe eloquently how, as persons with disabilities, there were aspects of their experience — often those with the most intense psychic pain or suffering — that no one had been willing or able to see or hear. As Limor writes: "In the outside world I have to wear masks... I experience myself in the outside world as unheard and unseen." And Elliot explains: "Society expects us to bottle up our experiences within. Our disabilities…aren't part of accepted social discourse. They are either hidden, or sources of mockery or outright fear. Our life experiences cease to be legitimate topics for discussion." In the past, when they ventured to openly share these aspects of themselves, they met up with unbearable reactions on the part of others. They learned with time that if they wanted to get by in the "normal" world, these experiences were unwelcome, and needed to be born alone. In Elliot's words: "In order to survive in the 'normal world,' we learn to conceal the ups and downs of our illness, and hence the true degree of our suffering — and the courage, integrity and persistence of our struggle."

Fraser (1989) notes that an essential mechanism for depoliticizing social discourses is the "enclaving" of certain matters into specialized discursive arenas such as the domestic, economic, or professional spheres. The above narratives make it clear that there are aspects and intensities of the experience of people with disabilities for which there are no enclaves at all for discourse. Consequently, these become burdens born by individuals, depleting psychic energy that could be much better used in coping with challenging life situations, and continually reinforcing a deep sense of isolation and alienation.

The most profound aspect of the experience of the leadership development course seems to have been the creation and discovery of a social space or enclave for discourse in which these cut-off experiences were welcomed and responded to with respect. Facilitation of the course by a person who could speak openly about his own experience of psychiatric disability and who responded with respect to the suffering of others seems to have been a critical factor in making this possible. The availability and facilitation of this social space prompted inquiry about the other and revelations of self in the group and in the Internet forum, through which participants gradually came to know themselves and each other, and to reframe previously unwanted aspects of self and others as important resources for human connection and for political and social activism.

Particularly interesting in this context was the dynamic in the group, reflected in the narratives, between people with psychiatric disabilities and people with other disabilities — most of whom had little if any exposure to people with psychiatric disabilities prior to the course. The first two narratives written by Eyal and Limor probably reflect the initial attitudes of most of the participants in the course with non-psychiatric disabilities: some anxiety with regard to possible danger or strangeness, considerable ignorance as to the nature of mental illness, and a curiosity about what it would be like to get to know "them" from up close. For example, Eyal reflects on his previous assumptions about people with psychiatric disabilities: "What I assumed about them prior to the course was that they were similar in their madness to Dr. Jekyll and Mr. Hyde." Limor notes that prior to the course she wondered "whether I would be able to understand people with psychiatric disabilities, and if they could make themselves understood?"

In the initial phase of the course, participants were taken with the discovery of the commonalities shared by all members of the group as "people with disabilities." Midway through the course, however, a number of participants expressed that despite their desire to engage and more deeply understand participants with psychiatric disabilities, they experienced an opaqueness in the ways that these participants described their experiences that left them frustrated. This issue, and some of the process that addressed it, is described above in Limor's narrative.

Elliot's narrative takes this exploration much further by making transparent the experiences and thoughts of a reflective person with a psychiatric disability that had remained unspeakable in the course. "The traumatic indignities and horrors of our psychiatric lives," too difficult to put in words, were split off from the collective group consciousness fostered by the course. To a certain extent, this left the people with psychiatric disabilities more separate and isolated than they might otherwise have been. There is no way to know whether expression of such experiences would have reinforced their separateness and difference, or might perhaps have served to enhance their connections to others, who might have resonated with them in unexpected ways.

Working together on this article has, thus, extended the alternative enclave for discourse established in the course, an enclave in which the cut-off experiences of disability are welcomed and responded to with respect. These experiences can be invited, but their sharing cannot be forced. Those experiences which are particularly terrifying, or about which people feel the deepest shame, remain unspoken longest, because their expression requires enough guarantees of safety and purpose in order to offset the risk of harm. But, given that safety and purpose over a prolonged period of time, even these experiences can be expressed and thereby contribute to human connection and understanding.

In conclusion, we and our fellow graduates of the leadership development course are currently engaged in social activism in a wide variety of disability organizations and social settings throughout Israel. Along with the knowledge and skills that we learned in the course, we bring to the field a newly formed cross-disability identity, and alternative expectations regarding the quality and content of discourse, and of our positions within that discourse. As reflected in the narratives, these are not immediately embraced by those around us, including our fellow activists, who did not have the experience of the course. It is our hope that as we face the ensuing challenges separately and together, we will contribute to the development of cross-disability collaboration for the advancement of the rights of all people with disabilities in Israel — ultimately creating a more just and inclusive society for all.

References

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  • Struch, N., Shereshevsky, Y., Baidani-Auerbach, A., Lachman, M., Zehavi, T., & Sagiv, N. (2007c). Stigma in the field of mental health: The attitudes, experiences, and coping mechanisms of parents of people who cope with a psychiatric illness. Myers-JDC-Brookdale Institute Center for Research on Disability and Special Populations and Minstry of Health Mental Health Services, Jerusalem (Hebrew).
  • Sykes, I. and Vlodavsky, A. (2007). From personal coping to social responsibility: Leadership training for social change for people with disabilities. In D. Feldman, Y. Danieli Lahav, & S. Haimovitz, S. (Eds.) The Accessibility of Israeli society for persons with disability on the threshold of the 21st century. (pp. 375-400). Jerusalem: The Governmental Publications Department, State of Israel (Hebrew).
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Endnotes

  1. The authors were facilitators and fellows in a course entitled "From Personal Coping to Social Responsibility: Leadership Training for Social Change for People with Disability". The course was held in May through July, 2006. It was initiated and funded by the Disability Rights Commission of Israel's Ministry of Justice, and developed and implemented by Shatil, the Empowerment and Training Center for Social Change Organizations of the New Israel Fund, an international philanthropic partnership working to strengthen Israel's democracy and to promote freedom, justice and equality for all Israel's citizens . Writing of the article was made possible by funding from Shatil.
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  2. See Struch et al 2007 a, b, and c for an analysis of the prevalence of stigma against people with psychiatric disabilities in Israeli society, its effects upon the perceptions of the general population, and upon the experience of people with psychiatric disabilities and their families.
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  3. Israel Sykes responds: One of the reasons that I was chosen to facilitate the group was that in addition to being an organizational consultant and family therapist, I have publicly identified myself as a mental health consumer and have been involved over the years in efforts to promote social change in the area of mental health in Israel. I shared this aspect of my identity with potential participants in the initial interview for the course, so I was able to use it as a resource when it became apparent to me that participants with psychiatric disabilities were having difficulty making their experience with their disability known to the others, at least some of whom were making a serious effort to get to know them.
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Copyright (c) 2007 Israel Sykes, Eyal Menashe, Elliot Lazerwitz, Ayala Vlodavsky, Limor Zaga-Shabbat



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