Modern Italy, 2014

Vol. 19, No. 2, 161–168, http://dx.doi.org/10.1080/13532944.2014.910504

Women with disabilities: from discrimination and violence towards an

ethics of reciprocity
Rita Barbuto and Emilia Napolitano*

Disabled People’s International Italia, Lamezia Terme (Catanzaro)

(Received 26 February 2013; final version accepted 30 October 2013)

Since 2001 DPI Italia, the Italian section of Disabled People’s International, has played
an important role in a series of research projects in the European Commission’s Daphne
Programme on violence against women with disabilities. Several different types of
violence have been identified, from sexual abuse to removal of women’s control over
their environment to invasion of their privacy in healthcare contexts to control of their
reproductive capacity, particularly of women with intellectual disabilities. In the
light of these projects, and of the CRPD’s recognition of the multiple discriminations
experienced by many women with disabilities, the article argues for a shift away from
an ethics of care and dependency towards one of equal reciprocal relations between
disabled women and others and to a bioethics grounded not in exceptional need but
in everyday life. Peer counselling among disabled women is particularly important in
effecting this shift.
Keywords: women; disability; sexuality; multiple discrimination; peer counselling

Between 2001 and 2008, Disabled People’s International (DPI) Italia, the Italian branch of DPI,
an organisation committed to affirming the human rights of people with disabilities, contributed
to a series of projects under the umbrella of the European Commission’s Daphne programme.
All five projects were concerned with violence against women with disabilities. The first,
completed in 2001, was ‘Disabled girls and women – victims of violence: awareness-raising
campaign and call for action’.1 It incorporated research conducted, with the collaboration of
women with disabilities, in Italy, Spain, Germany and Great Britain, and it highlighted the areas
in which violence against disabled women and girls was most frequent. Also included in the
study were an analysis of international documents and a comparison of national legislation in
the partner countries regarding women in particular and people with disabilities in general.
The results clearly revealed a lack of attention to the specific needs of disabled women.
Moreover, it was found that, even today, disability for a woman in Europe means continual
exposure to various risks, including violations of her human rights, social exclusion and
deprivation in her private life. Acts of physical, psychological and emotional violence are rarely
reported when they occur, and the women with disabilities who undergo them may consequently
become withdrawn, recognising themselves neither as persons nor as women.
The second project, ‘Dawn: new opportunities for the treatment and support of women with
disabilities’, carried out in 2003 in Spain, Italy and France, studied the phenomenon of gendered

*Corresponding author. Emails: rita@dpitalia.org; emiliananapolitano@alice.it

q 2014 Association for the Study of Modern Italy

162 R. Barbuto and E. Napolitano

and family violence in order to create a network of support and assistance among women who
share similar difficult situations. The third project, ‘I care – disabled women and personal
assistance against violence’, completed in 2004 and 2005 in Italy, France and Germany,
examined violence in the home-care setting, a subject that at the time was still not well
understood. This includes potential or real violence, perpetrated or undergone, through which
two female realms – women with disabilities and their personal assistants – establish the
boundaries of their relationship.
The fourth project was ‘Walking roots – methodologies and means against violence on
women with disabilities’, conducted in 2005 and 2006. Its outputs included an annotated
bibliography on gendered violence among disabled people, based on research into best practices
and documents concerning women with disabilities in Europe, and the book Consulenza alla Pari.
Da vittime della storia a protagonisti della vita (Peer Counselling: From Victims of History to
Protagonists of Life) (Barbuto et al. 2006). The fifth and last project, ‘Lighthouse – health
institutions: a place of violence for women with disabilities? An issue of ethics and human rights’,
was carried out in 2007 and 2008 in Italy, Hungary and Spain. Its aim was to understand the
situation of disabled women as users of public health services, and it sought to bring to light the
forms of violence to which these women are exposed in certain situations. The project was also
conceived as a guide that could help develop and define initiatives and legal measures to secure
quality healthcare for disabled women, equal to that available to other, non-disabled citizens.
The research produced through these five projects demonstrated very clearly that violence
perpetrated against women with disabilities can occur at various levels – physical, instrumental,
institutional – and in various forms and degrees. All these forms of violence have a
psychological aspect because in all cases they damage the woman in the most intimate part of her
self, which others often perceive only in terms of weaknesses and fragility.
Women with disabilities may encounter several different types of violence. One that is
particularly widespread is the violation of their role. According to Paola Baratella and Elena
Littamè (2009, 195), this:
is definitely the type of violence that women with disabilities encounter most frequently, both inside
and outside the spheres in which they live. What role is possible for women with disabilities? What
role do we imagine for our daughters, sisters, friends, whom we have difficulty imagining as
autonomous adults capable of maintaining a home and raising a family?
A second, very important, type is sexual violence:
from childhood, it is difficult for women with disabilities to recognize and demand their right to be
heard and respected in matters of affectivity and sexuality. Lacking the opportunity to determine
their own sexuality freely and consciously, disabled women are more at risk than others of sexual
violence and abuse. (Baratella and Littamè 2009, 195)

A third type is structural violence, in other words the violence determined by the structures or
social contexts in which disabled people often live. This type of violence is found particularly in
institutions or in protected work environments:
although this kind of violence may be less intense than physical or sexual abuse, it is no less difficult
to tolerate. In a context where everything is determined by others (schedules, activities, free time,
work groups, sleeping arrangements), people with disabilities are often excluded from the choice of
how to organize their daily routine and, over time, this puts them at risk of losing control of their own
lives. (Baratella and Littamè 2009, 195)
A fourth type of violence, that in the healthcare setting, deserves particular attention.
As demonstrated by the Lighthouse Project, this setting often makes disabled women feel as
 Modern Italy 163

though their bodies are at the mercy of those around them: physicians, nurses, other healthcare
workers. These professionals often focus solely on the physiological and functional aspects of
the women’s health and in doing so fail to respect and attend to their intimacy and privacy.
Indeed, in the medical setting, the body of a disabled woman is often acted upon without
discretion and treated solely as an object to be studied. This attitude often results in their bodies
being used in videos, medical journals and other media without their consent. Moreover,
girls and women grappling with women’s health issues often encounter violent practices by
healthcare professionals who fail to relate adequately to their bodies. Many of these women, in
fact, have spent much of their lives in these contexts naked, exposed to the cold and curious
stares of the very people who are charged with their care and protection.
Women with disabilities are often seen as ‘easy targets’. Research conducted in the
‘Disabled Girls and Women – Victims of Violence’ project found that women with psychiatric
disabilities or those who live in institutional settings are often at a higher risk of violence and
abuse. In addition, women who escape from the violence of such settings usually find that
there are few anti-violence centres accessible to them. This occurs because of the continued
prevalence of the medical model of disability, which is concerned with the disabled person only
from a biological perspective, ignoring his or her potential as a human resource able to form
a life plan with thoughts, fantasies, emotions, within a network of interpersonal relations.
What women with disabilities want today, and intend to achieve, is the transition from an ethics
of care, in which the patient is solely an object of treatment, to an ethics that is more attentive to
relationships, based on a reciprocal interdependence in which each person, aware of their shared
vulnerability, makes herself or himself responsible for attending to the needs and demands of the
other. By caring for each other in empathetic ways, in the spirit of ‘I care’, they will free themselves
from the subordination in which they are merely objects of medical treatment. These women hope
to see, finally, the transition from an ethics/bioethics primarily concerned with questions of medical
advancement to an ethics/bioethics concerned with everyday life. For women with disabilities,
everyday life means being at continual risk of victimization through practices like euthanasia,
sterilization, and selective abortion – practices associated with or resulting from lack of the economic
means that would guarantee them a better quality of life. (Galati and Barbuto 2008, 26 – 27)
As revealed by the case of Gauer and Others v. France (a lawsuit brought before the European
Court for Human Rights in 2011 by five women with intellectual disabilities in France who had
been forcibly sterilised), sterilisation is often forced on women with mental disabilities. These
actions are justified by society, and, unfortunately, also at times by the women’s close family,
with the argument that this is the only solution capable of protecting the women’s physical and
psychological well-being. In reality, this only represents a solution for others, for society.
Sterilisation does not eliminate violence perpetrated through unwanted sexual relations or other
types of sexual abuse, but merely eliminates its effects: a possible pregnancy and the obligation
to care for the child.
Similarly, practices like selective abortion and infanticide have been justified by a line of
utilitarian thinking, of which Peter Singer (1995, 2011) is one of the principal exponents. Singer
has stated explicitly that selective abortion is justifiable when a grave deformity is found in the
embryo or foetus, on the grounds that this deformity could exacerbate the suffering and
unhappiness of that person as well as of their family and society in general. He concludes that,
if within the first month of life a newborn is determined to have no chance of becoming a
self-aware being and could only be kept alive through medical intervention, perhaps at the cost
of great suffering on the part of the infant, then he or she should be killed.
Similarly complex and difficult is the situation created when a woman with disabilities
decides to have a child. Even if this is not prohibited by law, the context in which she lives hardly
164 R. Barbuto and E. Napolitano

ever supports this choice. From the moment when she approaches the health authority she
finds that there are no services able to respond to her specific needs. The necessary diagnostic
instruments and support services, such as personal assistance, are either inadequate or
non-existent. In addition, a woman with disabilities who expresses her desire to have a child is
often considered lacking in the awareness required to be a mother. As shown by research
conducted through the projects supported by the Daphne programme, physicians often respond in
a shocking manner to this completely legitimate request. Revealing atavistic prejudices, they
consider motherhood to be an option only for women who are completely ‘healthy’. Of course, in
this context, assumptions about who is ‘healthy’ depend on pre-established mental constructions
that label disabled people as ‘unhealthy’, to be taken care of and therefore incapable of caring for
others, let alone an unborn child, whom these doctors imagine would automatically lead an
unhappy life. If this is what people think, hospitals will never build a delivery room that
anticipates the specific needs of women with disabilities. Even worse, these women have often
been so conditioned by this way of thinking that they hardly ever dare challenge the view that
others have of them, which denies them the opportunity to procreate, as the writers of this article
know from first hand. This conditioning can be so strong that it can make women unaware of their
own desire for motherhood. On the other hand, those disabled women who have successfully
fulfilled their desire for a child may find themselves impeded from fully living and occupying
their role as mother. Wheelchair users, for example, often confront architectural challenges that
prevent them from walking with their children, taking them to school or to the doctor, or simply
sharing those everyday moments that are crucial to the mother – child relationship.
Disabled women continually find their basic right to life threatened. As Barbara Waxman
(1994) noted, they are the population most at risk of being subjected to forced eugenic practices
– including sterilisations, forced abortions and medical experimentation – due to apprehension
that they could bring disabled children into the world. Some women have been left to die as
infants because they were too costly, and some ask to die through euthanasia because their
economic conditions do not allow them to live with dignity. More than on the woman and her
needs, attention is always focused on the interests, both economic and otherwise, of society.
Despite a lack of official data and a nearly non-existent record of victim complaints, the writers
of this article can confirm through a decade of experience that violence against women with
disabilities is widespread.
In reflecting on the roots of these forms of inflicted and endured violence, one must ask two
questions: What part of a man or woman’s personal history pushes that person to act violently
towards a disabled woman? What part of a disabled woman’s personal history creates the
psychological and emotional conditions that render her either unaware or aware of violence?
These are intrapsychic dynamics that we can explore, at least in part, without claiming fully to
understand or resolve them. Violent attitudes and behaviour spring from feelings of rage that, in
these cases, erect themselves as a defence against the fear that arises from the encounter with the
other and what she or he represents. That encounter occurs between a man and a woman or
between two women; however, it also occurs between their subjectivities, histories, aspirations
and unaccomplished goals, as well as between the tenacity of one and the compliance of the
other, or between the interests of one and the expectations of the other.
Having established the problem of women with disabilities enduring violence, one can find
part of the cause in the women’s inability to recognise their full personhood and to recognise or
construct their own female identities. These phenomena have their roots in the many rejections
such women receive throughout their lives as well as in families’ infrequent acceptance of
disabled women as sexual beings. Thus may lead some disabled women to allow themselves to
 Modern Italy 165

be subjected to violence – physical, sexual, psychological or otherwise. In other words, these

women may be incapable of recognising violence because they do not feel worthy of asking for
something better, such as responses to their aspirations and dreams, and because they have been
taught to make do and not take risks, to continue to seek the approval of others.
A disabled woman often has difficulty aligning herself with a feminine model that seems to
be an unreachable fantasy, and as a result she becomes easily vulnerable to multiple forms of
violence. In other cases, the physical assistance required by certain forms of disability can make
the woman ashamed, as her basic needs (such as personal care and assistance) must be attended
to by another person. The relationship between a disabled woman and her personal assistant,
whether man or woman, can be characterised by violence, abuse, aggressiveness, harshness and
mistreatment. It should be remembered that this type of relationship comprises not simply two
bodies, one sustaining the other, but rather two psychological worlds and two identities, each one
with its life history, emotions, fantasies, life experiences, sensations and ideas, that then meet
each other during the basic activities of biological life such as eating, drinking and going to the
lavatory. When these two worlds meet, what happens? They may not acknowledge each other,
and a subtle war can erupt, unconscious and submerged despite the fact that both women have
the same desire: to exercise their power in order to assert their identity. At its heart, violent
behaviour is essentially a violation of the fundamental human right to be ‘seen’ as a person and
woman. Moreover, the aggression that underlies such violence is not only personal but also
societal. It can take on different guises in the lives of individual women, both within social
organisations as well as in established social relationships. Not surprisingly, it is also legitimised
by institutions, norms and societal values that continue to take an aggressive stance towards
people with disabilities. Despite efforts to cultivate progressive ideas, domination and success
prevail in private as well as public life.
The Convention on the Rights of Persons with Disabilities (CRPD) was a huge step forward. It
was the General Assembly of the United Nations’ first treaty of the twenty-first century, approved
on 25 August 2006 and definitively adopted on 13 December of the same year. The Convention
represents a benchmark of success that is the result of decades of growth in awareness, both on the
part of disabled people and on the part of society, of what the condition of disability entails for the
person her- or himself as well as for the organisations that serve them. At the same time, however,
the Convention also represents a point of departure towards a future still yet to come. In 2014, for
example, we are still fighting for the approval of legislation to end discrimination against persons
with disabilities. There are many contexts, such as when receiving services essential for daily life,
such as personal assistance, in which this type of freedom is still not guaranteed. In its preamble
and main text the Convention recognises us as diverse people, a detail that makes us realise how
much our awareness with regard to our disabilities has grown, allowing us to imagine a world
hospitable to all. Looking specifically through the lens of gender, the international movement of
women with disabilities who contributed to the drafting of the Convention demonstrated their
ability to get in touch with the depths of their own inner worlds, often the only space that allows
them to feel like free protagonists, capable of assuming their personal responsibility in a process of
civil growth that involves us all.
Indeed, if the CRPD is a milestone for the cause of human rights for people with disabilities,
for women with disabilities it represents their first opportunity to be recognised as people within
their gender. For the first time, the multifaceted discrimination and the condition of invisibility
that have historically accompanied their very existence were finally acknowledged. However,
the inclusion of questions of gender in the CRPD was not easy. Although the member country
representatives and CRPD organisers, as well as the diverse cultures and societies they
166 R. Barbuto and E. Napolitano

represented, did develop and approve the Convention, they did not make it easy for women with
disabilities to become involved in the process.
The women with disabilities movement began its work with several key points in mind: that
gender-neutral documents are incapable of affording adequate attention to women, including
those with disabilities; that women with disabilities, as well as experiencing multiple forms of
discrimination, also live a double invisibility: as women and as people with disabilities; that
fully adopting the principle of ‘mainstreaming’ also entails incorporating a female perspective in
the development and execution of laws, measures and programmes dealing with disability; and
that a simple acknowledgement of gender equality, while necessary, is not sufficient – rather, it
is necessary to give explicit emphasis to problems unique to women with disabilities if one wants
to increase the likelihood that governments will adopt measures able to address them.
The CRPD is the first instance when a document of such importance not only includes a
specific article on women and girls with disabilities (Article 6) but also underlines and draws
attention to them in its most important articles. Article 6 recognises that women and girls with
disabilities are subjected to multiple forms of discrimination, asserting that States parties
(those countries that have ratified the Convention) must adopt measures to guarantee their
full and equal access to all human rights and fundamental liberties. Moreover, it declares that
States parties must take all actions necessary to secure the full development, advancement
and strengthening of disabled women, with the goal of guaranteeing their ability to enjoy and
exercise their human rights and fundamental liberties. The measures that States parties must
sponsor include the promotion of community activities (such as peer-counselling seminars and
self-help groups) and of information services geared towards women with disabilities, with the
goal of increasing women’s awareness of their own abilities as well as of the possibility of
playing an active role in their own lives. Another measure is the implementation of awareness
campaigns, innovative policies and services to help promote equal opportunities for women with
disabilities and respect for their human rights.
All these measures speak to the importance of initiating processes of empowerment through
which disabled women may learn to value themselves and understand that their condition of
disability does not cancel out their right to a high-quality, happy life. They must also develop
certain principles crucial to disabled women’s psychological growth, including a good relationship
with their bodies, self-respect, pride in their womanhood, without denial of their sexuality,
and a belief in their rights to motherhood, work, social inclusion and personal assistance, an
indispensable condition of their ability to plan and live an autonomous, independent life. Of course,
this may not be an easy or particularly enjoyable process, either for disabled women themselves,
whose task is none other than to claim their rightful place in society, or for the societies in which
they live, which must work to recognise them as productive people, reforming the mistaken
assumption that they can occupy only a passive role.
A fruitful tool of empowerment is peer counselling, a type of self-help between two or more
people with disabilities that supports them in initiating or strengthening their path out of an
unacceptable way of life. More specifically, it helps people confront fears, personal limits and
practical problems, identifying the solutions and approaches most likely to bring them closer to
realising their life plans. Self-reflection is an important aspect of this approach, allowing women
to reinforce and find confidence in their personal characteristics, abilities, desires and common
ambitions as women, which historically have not been adequately recognised by men with
disabilities or by women in general.
When DPI Italia began to develop specific methods and techniques for peer counselling it
unexpectedly found an audience among women both with and without disabilities. However, this
 Modern Italy 167

result is perhaps not so surprising when one considers the main elements of this: the centrality of
personal relationships, the sharing of life experiences, listening and being heard, a focus on
personal care, and attention to both one’s body and one’s imagination. All of these elements
speak directly to women and their needs, evincing a clear link between the larger female world
and peer counselling.
DPI Italia has confidence in peer counselling as a methodology and as a human experience
because it recognises its value as an effective instrument for people with disabilities, particularly
women. It enables them to break the wall of silence that is built around them due to the
‘transparent visibility’ often attributed to them by people who come into contact with them. Peer
counselling and other strategies of empowerment are therefore critical to the personal growth of
disabled women who seek to claim their right to an existence worthy of the word ‘life’. It is time
for women with disabilities to acquire a full awareness of their potential and their humanity. This
will enable them to increase their self-esteem and to assist other women who find themselves
without a voice because they are marginalised and segregated in a culture that provides no space
for differences. Indeed, it is precisely within these contexts that women with disabilities must
assume their responsibility to advocate for cultural, social and political changes that will allow
all people, without distinction, to benefit from universal ethical values that restore dignity to the
essential diversity in humankind.
Finally, we also welcome exchanges between all women and men, whether disabled or
not, to help foster reflection by men about men and by women about women (a sort of peer
counselling between people who have been violent, in which the person becomes more aware of
the actions and dynamics that pushed him or her to acts of violence). In fact, encounters between
women with and without disabilities rarely occur except in the case of a few enlightened minds
that have grasped the widespread discrimination that disabled people face.
Today we live in a society in which there is an increasingly urgent need to find an openness
of attitude that welcomes peoples’ differences as well as everything those differences entail,
so that each person, with all her or his idiosyncrasies, may work towards the realisation of a unity
in which everyone contributes to a cohesive equilibrium. Although our vision may seem like
a utopia, we are confident that this day will arrive thanks to all the people who, armed with
awareness, are driven by a spirit of knowledge capable of breaking down walls and meeting
diversity head on.
Translated by Kristin Szostek Chertoff (kas254@nyu.edu)

Note
1. Details of the research projects are as follows: (1) ‘Disabled girls and women – victims of violence:
awareness-raising campaign and call for action’, Project number JAI/DAP/OO/052/W. The results were
published in the kit Violence Means Death of the Soul (versions available in Italian, English, Spanish,
and German); (2) ‘Dawn: new opportunities for the treatment and support of women with disabilities’,
Project number JAI/DAP/02/007/W. Results were published in the kit Being a Disabled Woman –
Women and Mothers in Contact with Disabilities: Possibilities for Encounters in the Female Universe
(in Italian, English, French and Spanish). Published with this project, in Italian and English, was the
book, A Possible Autonomy: Itineraries of Women with Disabilities between Empowerment and
Advocacy (Galati et al. 2003); (3) ‘I care: disabled women and personal assistance against violence’,
Project number JAI/DAP/03/207/W. Results were published in the kit Women with Disabilities and
Personal Assistance: An Instrument to Guarantee Equal Opportunities and Quality of Life (in Italian,
English, French and German); (4) ‘Walking roots: methodologies and means against violence on women
with disabilities’. Project number 2004-2/94 completed in 2005 and 2006; (5) ‘Lighthouse – health
institutions: a place of violence for women with disabilities? An issue of ethics and human rights’.
168 R. Barbuto and E. Napolitano

Project number JLS/2006/DAP-1/147/W. Results were published in two languages – Italian and
English – in the book Women, Disabilities, and Health (Galati and Barbuto 2008).

Notes on contributors
Rita Barbuto is Regional Development Officer of Disabled People’s International (DPI), Director of DPI
Italia and a peer counsellor. Her areas of specialisation are bioethics, human rights and the interactions of
gender and disability. Publications include Una possibile autonomia: itinerari di donne con disabilità tra
empowerment ed advocacy (edited with Marina Galati, Nunzia Coppedè, Maria Meduri and Emilia
Napoletano) (Soveria Mannelli: Rubettino, 2003), Manuale di consulenza alla pari. Da vittime della storia
a protagonisti della vita (edited with Vincenza Ferrarese, Giampiero Griffo, Emilia Napolitano and Gianna
Spinuso) (Lamezia Terme: Comunità, 2006) and Donne, disabilità e salute. Questioni etiche, strategie e
strumenti di tutela nelle politiche per la salute e le pari opportunità (edited with Marina Galati) (Lamezia
Terme: Comunità, 2008).
Emilia Napolitano is a practising psychologist and psychotherapist and a peer consultant for SAAD
(Servizio di Ateneo per le Attività degli studenti con Disabilità) at the Università degli Studi Suor Orsola
Benincasa, Naples. She is a member of the organising committee of DPI Italia. She has published articles in
the journal of the Fondazione Centro Praxis NPS – Neurologia Psichiatria Scienze Umane e in Quaderni
SAAD, as well as in collective volumes on the themes of disability, social inclusion, human rights and
women.

References
Angrisani, Silvia, Cristina La Capria, Francesca Marone and Carolina Tuozzi. 2002. Quando la relazione
prende forma. Questioni educative al cinema. Lecce: Pensa Multimedia.
Baratella, Paola, and Elena Littamè. 2009. I diritti delle persone con disabilità. Dalla Convenzione
Internazionale ONU alle buone pratiche. Turin: Erickson.
Barbuto, Rita, Vincenza Ferrarese, Giampiero Griffo, Emilia Napolitano, and Gianna Spinuso. 2006.
Consulenza alla pari. Da vittime della storia a protagonisti della vita. Lamezia Terme: Comunità.
Galati, Marina, and Rita Barbuto. 2008. Donne, disabilità e salute. Questioni etiche, strategie e strumenti di
tutela nelle politiche per la salute e le pari opportunità. Lamezia Terme: Comunità, Coordinamento
nazionale comunità di accoglienza.
Galati, Marina, Rita Barbuto, Nunzia Coppedè, Maria Meduri, and Emilia Napolitano. 2003. Una possibile
autonomia: itinerari di donne con disabilità tra empowerment ed advocacy. Soveria Mannelli:
Rubbettino.
Singer, Peter. 1995. Rethinking Life and Death: The Collapse of Our Traditional Ethics. Oxford: Oxford
University Press.
Singer, Peter. 2011. Practical Ethics. 3rd ed. Cambridge: Cambridge University Press (originally published
1979).
Waxman, Barbara Faye. 1994. “Up against Eugenics: Disabled Women’s Challenge to Receive
Reproductive Health Services.” Sexuality and Disability 12 (2): 155– 171.
Women With Disabilities Australia. 2013. Dehumanised: The Forced Sterilisation of Women and Girls
with Disabilities in Australia. WWDA Submission to the Senate Inquiry into the Involuntary or
Coerced Sterilisation of People with Disabilities in Australia http://www.wwda.org.au