labrys, études féministes/ estudos feministas
julho/ 2016- junho 2017 /juillet 2016-juin 2017

Women with disability: fear of an imperfect body

Alessandra Fabbri

Abstract

In our complex society, which is complicated by some elements like family fragmentation and job precariousness, the keystone of the identity becomes the bodily self. The body, however, is fewer and fewer representing the expression of itself, of its own subjectivity, since it has been transformed in an object: almost a container to shape at will, following the rules of beauty forced by the mass media, expression of an intensified recognition quest.Women with disability suffer from a double discrimination for their sex and for their disability. In fact, they not only do not mirror the typical characters of male gender, but also do not identify themselves in that stereotypes established by the social roles.

I believe that the greatest difficulty for disabled women in realizing a project of an independent life is caused both by the evident limits in carrying out daily activities and by the reduced possibilities to be included in the job’s market, and therefore by the reduced economic possibility and to embody the social role of women, that imposes to women the management of the house: the difficulty in carrying out such assignment generates a devaluation of their womanhood.

Key-words: women, disability, discrimination

Introduction

It is very hard living as women in a world mainly dominated by men: in our society a symbolic still exists, largely dominated by males, that constitutes a rule/value: on one hand there is a male resistance to women’s empowerment expressed through men’s refusal - fortunately not by all men - to cooperate equally in housekeeping, and witnessed by the high number of sexual violence, on another hand we are facing the growing standardization, pushed by political and ideological globalization, resulting in sexual specifity erosion and imponderable identities.

The social roles related to gender are present ever since the early childhood: we find reactivated, in the school, all the worse sexist stereotypes for which guys hold the contemporary ones: women as false envious persons, gossipy, superficial. Stereotypes also maintained in adult age, which engrave on the perception of itself.

Furthermore, in our complex society, complicated by some elements like family fragmentation, job precariousness, the keystone of the identity becomes the bodily self. The body, however, is fewer and fewer representing the expression of itself, of its own subjectivity, since it has been transformed in an object: almost a container to shape at will, following the rules of beauty forced by the mass media, expression of an intensified recognition quest.

Identity is not once and for all a guaranteed essence and nobody can define itself on its own. Identity is an effect of the relationship, of the exposure to the other. It is in the dialectical exchange between subjectivity and objectivity that the experience of the self takes place. The self, which is unable to realize a self-establishment, asks continuously to be recognized by the other. Nowadays, the exposure to the other one has changed: you cannot mirror yourself in a trusted person, but it is more normal to compare yourself with an abstract and impersonal ideal proposed in a suggestive and subliminal insinuating way by the mass media.

Accordingly, it raises the need for shaping and remodeling our own bodies: a necessity to confirm the control on ourselves, while it has become difficult changing the world, that is translated in the increasingly large use of piercing and tattoos, until reaching the performances of the body art.

Living with a disability: the life of women with disability: discrimination and recognition

In this climate of uncertainty, how is it perceived the disabled person? 

The word disabled contains itself the prefix dis, the negative, her not ability, the non-standard being, but how the rule has been established? Canguilhem writes that the norm is given between fact and value: it indicates what mostly happens, for the majority of the individuals of our kind, it has therefore a relief statistic, but such data is at the same time assumed as a normative value, it is for the best.

Especially in our contemporary society we are absorbed in the norms.

"We live in a world of norms […] Probably doesn’t exist a contemporary life’s field without some halfway or average model."(Leonard, 2013: 1).

This normative value becomes a barrier for the one who does not reenter in it since it is considered different.

Women with disability suffer from a double discrimination for their sex and for their disability. In fact, they not only do not mirror the typical characters of male gender, but also do not identify themselves in that stereotypes established by the social roles.*

This multiple discrimination, as it is easy to realize, can be found in the job, in the education, in the affective and sexual life: in each of these areas of the existence, women with disabilities have less opportunity and liberty of choice, not only in comparison to the other women, but also in comparison to disabled men. This situation also is witnessed by ISTAAT data[1], according to which disabled people who live in Italy are three million, a figure that represents the 5% of the population.

"Two disabled persons on three (66,2%) are women: There are 1 million and 700 thousand, that is the 6,1% of the Italian women. Among men the percentage is equal to 3,3%, value almost halved in comparison to women. The rates of disability of men and women start to diverge when age augments."(Istaat, 2015: www.disabilabile.it)

Concerning an independent life from the family of origin, data notice divergences between men and women.

"In absolute values disabled people who live in family are two million and 600 thousand equal to the 4,8% of the Italian population. Living with the partner they are above all the disabled men (60%), while the percentage falls down to 26% in the case of the women."(Istaat, 2015: www.disabilabile.it)

Working integration of people with disability is lacking and women with disabilities have great difficulties to be inserted in the market of the job where

"it lands only the 3,5% of Italians with disability; only the 0,9%, of the disabled people without occupation are looking for a job. 66% are out of the working market, or because they have retired, (43,9%) or because unable to work (21,8%). To have a job, are mainly men with disabilities (6,82%), while the rate of occupation falls down to the 1 ,82% for disabled women. The source of principal income for people with disability is the retirement (85%)."(Istaat, 2015: www.disabilabile.it)

I believe that the greatest difficulty for disabled women in realizing a project of an independent life is caused both by the evident limits in carrying out daily activities and by the reduced possibilities to be included in the job’s market, and therefore by the reduced economic possibility and to embody the social role of women, that imposes to women the management of the house: the difficulty in carrying out such assignment generates a devaluation of their womanhood. The femininity and the handicap are united by a sense of strangeness and discomfort towards a society that exalts the perfection and the efficiency.

From this perspective it is interesting to notice some analogies between the routes of Women's Empowerment and those of people with disability. The women and the feminist movements are committed to distinguish the biological data from the socially built data, as the gender identity. People with disability have made a similar path by distinguishing people who have an impairment, which is an evident biological data, from people who have a handicap, which is socially built by a culture incapable of recognition.

Why, despite the analogies, the matters of gender identity have not taken into account the studies on disability? Basically, because the concept of disability is not recognized in its heterogeneity and is still monolithic, limited, differences are not adequately considered among people with disability. We interpret the disability as one, an inside compactness is implied in the world of the disability that only links the disabled person to the impairment and consequently to the lack and to the impossibility, without recognizing the existing differences among people who live with disability and their different experiences, therefore the thoughts concerning the connections between gender’s studies and disability have not been developed properly.

However, the attention and the sensibility to the conditions of people with disability are increased, this will probably bring to a greater consideration of the gender’s issue bound to the disability.

An example of the greater consideration of people with disability is witnessed by the existence of the Disabilities Study[2], in North America, in North Europe and in the United Kingdom. A fundamental aspect of this discipline has been the attendance of people with disability to the scientific activities, as active subjects and not as objects of the study. Giving voice and possibility of involvement to people with disability is a way to favor the recognition and to get away from discrimination, that unfortunately is still present, especially when the disabled person is of female gender.

In particular, the existence of a discrimination is reported by an investigation of the «SuperAbile Magazine», edited by INAIL, published in the number of March 2013:

In a world predominantly built for men and managed by men, being women and disabled involves a life of multiple discrimination. Disabled women are always and however women, but they are never recognized as so.

«We do not have to believe that in Italy life condition of women with disability is better than in other States, neither that the economic and cultural poverty in which the disabled women are segregated is typical of the developing Countries», reports Luisella Bosisio Fazzi, adviser of the Ledha[i] (League for the rights of the people with disability).

The association is planning the opening of a Center of anti-discrimination, to support also the female universe, with the willing to become a regional and national reference point, collecting reports and requests, offering information and advices.

The recognition of the discrimination of women with disability: the international documents

Disabled women's disadvantage is recognized and considered, also, in some international documents: meaningful, even if not recent, is the «Manifesto of the disabled women» written on February 22^nd 1997, in Bruxelles, from the Work Group on women and disability of the European Forum on the disability. The document, born by a revision of the Seminar of experts of the United Nations about disabled women, picks up all the strategies to improve the life of the latter in order to realize their rights and duties.

The Manifesto proposes furthermore to sensitize the European Parliament, the European Committee and the same movement of women about problems related to being women, and being disabled.

Representative is the chapter Human Rights, ethics where, from the first paragraph, we understand the intention of the document which is: to guarantee dignity and awareness to disabled women

“The human rights and the fundamental liberties of girls and disabled women shall be recognized and respected. Girls and disabled women must enjoy of equal opportunities in all the spheres of the society. The importance of the accessibility of the society must be recognized for these people, and must be taken measures for the access to the information and the communication as well as something to make more accessible the physical environment […]” [3]

It is, however, the ONU convention about the rights of people with disability, approved in New York, from the General Meeting of the United Nations on the 13^rd December 2006 [ii]and ratified by Italy with the law 3 ^rd March 2009, that represents a fundamental tool for:

“[…]eradicating historical obstacles as the discrimination, the social isolation, the economic marginalization, the lack of opportunity in taking part into the decisions on political and economic field. The text, ample and articulated, is composed by a preamble of 50 articles and by an additional protocol that mainly concerns the procedures of appeal in case of violation of the rights established by the same Convention”.

Particularly the article n° 6 takes seriously in consideration the condition of disabled women:

“States Parties recognize that women and girls with disability are subject to multiple discriminations and, in this respect, they will take measures to assure the same and plenty enjoyment of all human rights and the fundamental liberties from women and girls with disability.

States Parties will take every appropriate action to assure the full development, advancement and strengthening of women in order to ensure them the exercise and the enjoyment of human rights and fundamental liberties enunciated in the present Convention.”

Just in implementation of what is proposed by the above Convention:

“The Spanish movement of people with disability has organized in June 2012 an international conference specifically focused on the theme of women with disability, first appointment of this kind, after the approval of the ONU Convention, hosted by the CERMI (Comité Español de Representantes de Personas with Discapacidad), the Spanish Committee of the Organizations of People with Disability. The Conference has exactly taken place from 27 to 29 June in Madrid, at the Sporting and Cultural Center of the ONCE (Organización Nacional de Ciegos Españoles), the Spanish National organization of Blind people, and has counted on the presence of over three hundred experts on the issues of disability and gender, coming from the international movement of the disability, but also from the political world, the academic one and from civil society.

“Women with disability - as declared in Madrid by Ana Peláez, component of the executive of the EDF (European Disability Forum), who opened the Conference - suffer from a multiple form of discrimination." Also for the EDF -  the “umbrella – organization” that protects the rights of million disabled people in Europe - the inclusion of women and girls with disability is certainly one of the principal key passage to concretely reach a new culture.”

There is an increasing consideration of the person, recognized worth living a life without discriminations, having the right to realize its own potentialities, in a liberal society that recognizes all the individuals, independently from its own physics or psychic’s conditions: «Equal in the dignity and in the rights and different in the needs and in the ability».». (Battaglia, 2009: 8)

Attention to the needs is also underlined by the World Health Organization, that has defined health as: «Condition of physical, psychic and social comfort and not simple absence of illness»[4] it follows that the conditions and the well-being (to feel good) of the sick assume a central importance and not his/her pathology. A model of classification like the ICF (International Classification of Functioning, Disability and Health, OMS 2001) is based on this definition that does not refer to a structural or functional trouble anymore, without firstly comparing it to a considered state of health. It is meaningful that the classification also lists the environmental factors that interact to determine a situation of disability, that is defined, in fact, as the consequence or the result of a complex relationship among the condition of individual’s health, and personal and environmental factors which affect the context of which it is part.

It is difficult to apply what is adequately expressed by the documents for the embarrassment that still exist towards people with visible impairment that makes body imperfect. Which role has the body in and for our existence?

We are our body

The body is fundamental for our well–being e and well-living: we do not have a body, we are and we are not our body. The body structure is a structure of relationship, in which the individual is an open system. This allows us to understand that it is really the body that represents the whole of social relationships, because therein are both the history of the individual, and his/her potentialities of change. The difficulty in considering and taking care of one’s own body is exasperated when the body is hurt by a disability.

Where does this difficulty come from? It mainly arises from the fact that it does not fall into a standard and that the body is different from people’s bodies majority.

Our physicality, is something beyond the bodily function: it is everything that the body expresses; there is a continuous dialogue among bodies, something that goes over the limbs, and is connected with the psychological and emotional aspects: it is here that the physicality was born, from the perfect fusion between psychological and organic aspect.

All people who have or do not have a disability, have their own physicality, their own body feeling, which includes emotions, gratification, acceptance of the own itself.

The body hurt by the disability is often manipulated and submitted to visits, its sick part is observed in its nudity, but it does not mean that it is seen in its entirety. A body with a disability is difficult to touch, difficult to stroke even for the mother who has to overcome the mourning for the death of that perfect baby, imagined for nine months after the disabled child’s birth.

A body difficult to accept for the disabled person too.

Hurt womanliness

As previously underlined, the situation is emphasized if the body with disability is female because the female body, according to the images proposed by the media and internalized by each of us, must be healthy, young and perfect.

It is the social culture with its imposed models, that creates that behaviors that transform the impairment into handicap.

And it is always the culture and the social organization that make women with disability doubly disadvantaged.

 I do not want, obviously, to deny the biological origin of the handicap, but I would like to focus on the social construction of the disability that forces us to arise some questions that are apparently obvious, but that often we prefer to forget and to remove from a comfortable and skilled daily life.

“Why are there so many disabled people who are unemployed, poor, isolated: why is it difficult to have a suitable education for them [...] Why people with a skilled body avoid, make light of disabled people or look down on them?”(Schiavina, 1995: 4)

It is difficult to find a suitable answer and it is so superficial seeing in people with disability the victims of the nature or of the destiny. As underlined by the ICF, we are inserted in contexts that can help or can complicate our conditions of life and that can make us more disabled.

It is correct to give voice to weak categories, as people with disability, but also to women if it is true that, as the feminists observe, «The world has been drawn for men». In some parts of the world, as in North America, women are forced to keep house clean and take care of the children and do not have an appropriate access to public life. Belonging to the womankind, they have, in short, a biological handicap, which has been created by the social organization. In the difference between private and public space, women as disabled people or the elderly, are been relegated in the private space.

Disabled people, furthermore, and mostly girls with disability, tend to isolate themselves because they fear the comparison with a reality built on perfect, but dummy images: it is the exasperated exaltation of the perfect body that conducts who is disabled to look at the mirror and to feel alone and different from the others. How much is this difference real and how is it induced by social habits?

We are being continuously blasted with images of a limitless body and with the publicity of products aimed at making our body perfect, as society orders us.

It would be enough to reflect an instant: every person has a different body in form, structure, color and development, a body that changes continuously. We do not often compare us with our real body, but with another body that does not belong to us, a body that we imagine strong and healthy because is so that we would like to be: always and however efficient. 

Ideal which concern, exactly, not only the beauty, but also the energy measured often with the strength and the speed of movement. The desire of this perfect car prevents both people without disability and those with disability from loving their bodies, as they actually are; people without disability can apparently deceive themselves that their physique corresponds to the ideal, but this illusion is dangerous because, sooner or later, they will have inevitably to face reality. It is important to confirm that the disabled person mostly lives the alienation from his/her own body: a body that often makes feel trapped because does not allow to make simplest things. Here arises the need for reasoning and working in order to accept emotionally a defective physique: if, as I have previously mentioned, people with a skilled body can live under the illusion of being perfect, postponing the necessary identification with their own real body, this is not permitted to disabled people. To start socially living they need to learn and accept themselves: this is the rule for the one that is born or meets during life an impairment.

Certainly it is not easy, as in a society that idealizes the body, the physical disability is particularly marginalized. The reason is understandable: the myth of the perfection makes the one that has a physical imperfection the mirror of the weakness that belongs to every human being; it is scary because it remembers them the impossibility to be unlimited. It is then better to forget who has not a perfect physique. My speech is not sectorial for those called skilled, but it is aimed at every person, because the stereotype of the perfect car belongs to everybody, and sometimes, mostly to those who live with a disability.

It is therefore the fear of the limits that leads to isolate people who represent them through their own physique, and it is that fear that makes the disabled person as the difference, represented by the impairment. It is the same person with disability that contributes to his/her isolation because he/she feels trapped in a body that he/her does not accept, feeling an inadequacy that throws him/her out from the model imposed by the society. I know and I tell it from my personal experience, how difficult is it to see and to experiment every day the impossibility to do daily activities, to overcome that barrier of time imposing speed, that fear of slowness which makes visibly overwhelming not being able. As for my personal experience, fear of slowness, is a feeling of discomfort that comes out from the collision between the energy that pushes me to act and the functioning, slowed by disability; a discomfort that brings anger: anger at themselves, due to the impossibility to change the situation, combined with the fear of not being appropriated, of not being adequate to others.

I am sure that you have to be brave to live impossibility; the most difficult task, I think, is to recognize this impossibility and make it fluid and changeable: a way to ease the pain caused by disability.

Each person, especially if living with a disability, has had toward him/herself feelings of inferiority that are difficult to delete. Furthermore, disabled women mostly feel their physique as negative because they are judged for their body more often than disabled men: women with disability often feel they are being observed only for their difference, they do not feel charming. It is necessary to redirect for an instant our perspective in order to understand that difference does not belong only to disabled women: their fight against the oppression is a more complicated version of the battle of women with a skilled body to reach a realistic and positive image of themselves. Furthermore, we must remember that the ideal body is not natural, but artificially created by the society and it oppresses, more or less, everybody.

Certainly it is not easy to reach this ability of analysis: especially during the youth, it is hard to cohabit with our own limits, while the model of perfection continually remembers us our imperfection. 

Valentina, a girl suffering from Spastic tetra paresis, tells us her difficult relationship with the mirror:

The mirror devours me, it devours my tears, drinks the crystalline betrayed illusions, the tears, chokes my breath zooming mercilessly every detail of my face, analysing with fascinating cruelty all features, highlighting with obsessive precision the defective attitudes in front of which I am different” (Schiavina, 1995: 46)

It is the lack of control on her own body that makes this girl suffer. The myth of the control of the body typical of a patriarchal culture, is born from the fear of the nature, fear of our emotions and lets to consider the one who does not have a total control of the body as a failed person; it is the person with disability in his/herself who feels useless. In our culture dominated by the appearance this process is carried to extreme consequences: having a healthy and strong body is considered a moral value, so who has these characteristics, that however are not stable, has also the social approval and who does not have them feels ashamed. The person with disability is consequently scared to express even his/her own needs to the doctors, because, despite the increasing consideration of the care, there are still doctors that perpetuate the myth of the normal body with an exclusive attention on the cure to repair the invalid organism. The luminaries should get out from their narrow-minded wisdom to listen to the needs of people that suffer, in order to take care, not only to cure and to understand the other. The disability is not a private fact, disabled people are citizens and they must be integrated completely in the society.

It would be a good thing to educate and to educate ourselves to transform our individualist culture into a relational culture, because each of us, with or without disability, can bring its own contribution to the community: inconveniences as the alcohol and the drug abuse are also born from the incapability to face and to accept the pain. Who has a disability has done a long way to learn to cohabit with his/her own limits, that is he/she has suffered, and can then teach to whom has dependences from drugs or alimentary troubles to face its own reality without running away.

I do not want to idealize handicap: I know the fear to cohabit with a difference and the loneliness that sometimes arises when facing the cultural barriers, not only architectural, erected by the society, but I have always looked for and I have often found a way to express me. I join the words of a young priest, forced on a wheelchair because of an accident, that represent well my thought:

“There is the wound, all right. I would like for example to race, or to walk in mountain. However I am not able. And I accept it. Peacefully, but without faking not knowing that nothing and nobody could give back us what life has stolen us in a moment ^{.“. .(Schiavina, 1995: 99)}

The awareness of one’s own disability must not force to the silence. I wonder, through the words of Pierangelo Bertoli, an energetic Emilian singer and songwriter affected by the polio virus: «Who knows if some day we will be able to be ourselves, without letting us being overwhelmed by the prejudices?».

To be able to be themselves it is necessary to build a theory and a social practice of the disability in order to promote and educate to responsibility and to take care of the other, overcoming the myth of the perfect body. These behaviors, that valorize the care, considered as a prerogative of the female sex, should be extended to all citizens, men and women to fully make society human.

Bibliography

.• Various Authors.. 2013. Disability Studies. Emancipazione inclusione scolastica e sociale e cittadinanza. Trento: Erikson.

.• Albrecht, Gary, Seelman , Katherine,Bury. Michael. 2001. Handbook of disability
studies, California: Sage Publications.

• Battaglia, Luisella (by). 2014. Potere negato. Approcci di genere al tema delle
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• Battaglia, Luisella. 2009. Bioetica senza dogmi.Soveria Mannelli: Rubbettino.
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• Bonito Oliva, Rossella, (by). 2006, La cura delle donne. Roma: Meltemi Editore.
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• Canguilhem, Georges. 1966, Le normal et le pathologique. Paris: Presses Universitaries de France (PUF)

• Lennard, Davis. 2013. The disability studies reader, fourth edition. New York: Routledge. Taylor e Francis Group

• Medeghini, Roberto. 2015. Norma e normalità nei disability studies- riflessione e analisi
critica per ripensare la disabilità .Trento: Erikson.

• Schiavina Maria Antonietta. 1995. Diversi da chi?- Normali vite con handicap-. Milano:
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• Urgesi,Tonino. 2016. La disabilità, tra corporeità e nudità, www.superando.it

• Ursino, Chiara. 2012. L’impatto dell’immagine corporea sulla disabilità motoria e il ruolo
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• Wendel Susan, 1989 «Toward a Feminist Theory of Disability», Hypatia, Vol.4, n°2

Biography

Alessandra Fabbri, qualified teacher in public schools, has a Ph.D. in Philosophy; she is assistant Professor of Moral Philosophy and Bioethics of the University of Studies of Genoa; she received a second- degree in Clinical Bioethics and Forensic Sciences; she has a bachelor degree in Pedagogy and Literature.

She is the author of several articles about topics connected to Bioethics, particularly related to ethics of care, which have been published in specialized reviews.

  Notes

* For further details: cfr Medeghini,.Roberto. 2015. Norma e normalità nei disability studies- riflessione e analisi critica per ripensare la disabilità, Trento: Erikson. Cfr. anche G.L. Albrecht, D. Seelman, M. Bury,Handbook of disability studies, Sage Publications, California 2001.