The Rights of Women with Disabilities [Part 2 of 2]

Independent Living & Inclusion

Inclusion

The right to live in community is a distinct human right with the overarching objective of achieving full inclusion and participation in society. Full inclusion and participation in society means that as a person with disability I can go out if I want to, wherever I want to. I can commute from one place to another. I have the opportunity to choose my place of residence; where and with whom I live, on an equal basis with others and am not obliged to live in a particular living arrangement.

Segregation

Historically people who are not able bodied have been segregated and kept together, often hidden away. This segregation, like in a classroom where good scoring children sit in front and the ones who do not fare well sit at the back, pushes them further away, to the margins. People who are on the margins often get forgotten, which makes them even more vulnerable, as individuals and even as a community with a shared history of oppression and aspirations.

Discrimination on the basis of disability means any exclusion or restriction on the basis of disability which results in a violation of human rights. It includes denial of reasonable accommodation. Reasonable Accommodation means appropriate modifications, not imposing an undue burden, to ensure to persons with disabilities the enjoyment of all human rights.

Living Independently

The concept of persons with disability “living independently” is based on a social model of disability which recognises that people are not limited in their choices because of any inherent feature or condition of the person him or herself, but by the social and physical environment in which they live. In enabling environments people are supported to make independent and autonomous (and in some cases supported) decisions. Living Independently does not mean that people with disabilities have to be living a highly self-sufficient life, at a distance from other people.

Institutionalisation

An Institution is any place in which people who have been labeled as having a disability are isolated, segregated and/or compelled to live together. An institution is also any place in which people do not have or are not allowed to exercise control over their lives and their day-today decisions. An institution is not defined merely by its size.

Deinstitutionalisation

Deinstitutionalisation is a political and social process, which provides for the shift from institutional care and other isolation and segregating settings to independent living. The key to any deinstitutionalisation processes are when people with disabilities are in the truest sense included.

For persons with disabilities, alternative options could be home care by families, living in community run homes or community supported independent living arrangements. Usually these spaces infringe on the democratic and private lives of people with disabilities. It corrodes self-determination and personhood.

Creating smaller living spaces for groups of people with disabilities is not a solution. That is re-institutionalisation.

Deinstitutionalisation is about access to physical spaces, equal opportunities and self-representation. In the absence of this, people with disabilities are excluded from important roles and positions. They are restricted to a state of dependency and have the state and other concerned parties make decisions for them.

Strategies for deinstitutionalisation need to be local, contextual and situational. Persons with disabilities need to have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community. They need to live on their own terms, have a place which they will call home and which might not a natal home.

Just as able-bodied persons can move around from one place to another so should people with disabilities have the same opportunity? Community services and facilities need to be available on an equal basis to persons with disabilities and responsive to their needs.

Challenges

Institutional Care

In India, many Institutions for people with disabilities are overcrowded, and do not have adequate, empathetic caregivers, authorities.

These institutions have a rigid hierarchy where experts and medical professionals drive the whole care and treatment. There is hardly any person-centric intervention or consideration for autonomy, participation, choice and self-determination.

Institutions also serve as a convenient dumping place for people with disabilities.

When people with disabilities are locked away in Institutions, their visibility reduces and society gets unused to seeing them, thereby leading to further isolation.

Resistance to de-institutionalization may come from various people who have a vested interest in keeping people with disabilities away. Families, caregivers who patronise and infantilise people with

disabilities would rather they live in facilities where they are supervised and looked after.

Political will, commitment and funding remain a big challenge too.

Community Living

While physical placement within the community is necessary to ensure living in the community, it is not sufficient. Even living alone in one’s home in the community does not guarantee inclusion in the community. Isolation and segregation could occur:

Due to an imposed regimented way of life and the lack of every-day choices

If services are provided in a paternalistic manner and are not geared toward enabling inclusion. Or if conditional services are provided.

If people with disabilities who need support to find and retain meaningful employment are provided only with the option of a sheltered centre, rather than a chance to find employment according to their talents with the opportunity for advancement.

Rights, Laws and Schemes

The right to live in the community is closely linked with fundamental rights such as personal liberty, private and family life and freedom from ill-treatment or punishment but is captured as a distinct right in the UN Convention of the Rights of Persons with Disabilities (CRPD).

International Treaties UNConventionoftheRightsofPersonswithDisabilities(CRPD) Article19

The overarching objective of Article 19 is full inclusion and participation in society. Its three key elements are:

• Choice;individualized supports that promote inclusion and prevent isolation; and making services for the general public accessible to people with disabilities.

• Article 3(a) of the CRPD: respect for individual autonomy

• Article 3(c) of the CRPD: political participationis very important as well as “full and effective participation in society” (can they vote and buy something for themselves, associate, protest and standing for elections)

• Article 12: equalrecognitionbeforethelawand legal capacity. Choice is upheld by recognising one’s legal capacity to make choices and have them respected. Similarly, progress in implementing the right to live independently in the community will strengthen individuals’ exercise of legal capacity. Thus, the implementation of Articles 12 and 19 of the CRPD go hand in hand, and progress in one area positively affects the other area.

Advocacy: Our Role as Activists

• Community-based care, refers to the spectrum of services that enable individuals to live in the community. It includes services, such as housing, healthcare, education, employment, culture and leisure, which should be accessible to everyone regardless of the nature of their impairment or the required level of support. As activists, we must:

• Ensure that community ecosystems are user-led- that there is full participation of people with disabilities. They are actively involved in the planning, design, delivery and evaluation of services.

• Foster person-centred community care around the concepts of personhood and individualization which means that they are tailored to the individual’s needs and aspirations and can change as required over time.

• Promote and support Self-Advocacy.

• Take into account needs of people with intensive support requirements/ people from minority communities while planning disability care so that their needs are given the same priority as others.

• Place quality of life at the centre, in the provision of communitybased services. This should not be confused with quality of

services, although the latter contributes to the enjoyment of human rights.

• Involve all actors (i.e. persons with disabilities and their families, employment places, housing corporations, professionals, local public authorities, health bodies, civil society organisations) to enable mainstreaming of community care.

• De-institutionalisation is a long-term goal that needs people with disabilities to be at the heart of the movement, to share their experiences and demand their rights. Collectives are empowering as they create a bigger impact than if one affected individual negotiates for their rights.

• Adopt a social model of disability. This identifies the failure of society to accommodate disabled people, such as the inaccessibility of buildings and discriminatory attitudes, as the barrier to their inclusion in society rather than their particular impairment.

Stories to Talk About

Work in groups to identify what action we can take to help these women.

Partho’s Story

Partho has a severe physical disability. He lives with his family. His family does not care much for his participation and decides everything for him. They hardly ever take him out of the house. Partho feels unvalued and helpless.

• Whatcanyoudo?

• Areanyrightsbeingviolated?Ifyes,whichrights?

• Whatattitudesneedtobeaddressed?

Krishna’s Story

Krishna has lived in a state disability care home for many years because her family does not want her back. The state does not have provisions for Krishna and many others like to her to live independently. But you know that this is a violation of their rights.

• Whatcanyoudo?

• Areanyrightsbeingviolated?Ifyes,whichrights?

• Whatattitudesneedtobeaddressed?

Shormi’s Story

Shormi was a homeless woman who lived in and around railway tracks. She would beg for food. She was sexually assaulted and became pregnant. Some helpful people filed an FIR and she was put in a shelter home. She displayed symptoms of mental illness and was put into a mental hospital. After recovery she was reintegrated with her family. Her social worker found she was doing menial jobs for Rs 2000. She complained about not being allowed to roam freely on her own or buy things with her own money. Most importantly she was not allowed to join any festivals. She felt trapped in her own house and said she would like to live on her own.

• AsanadvocatewhatwouldyoudoforShormi?

• Areanyrightsbeingviolated?Ifyes,whichrights?

• Whatattitudesneedtobeaddressed?

Personal Reflection

• Haveyoueverexperiencedisolationorsegregationinyourown lifeasawomanwithdisability?

• Howdidyouovercomethis?

• Whatweretheenablingfactorsinyourownjourney?

• Whatdoyouliketosaytoyourfamily,communityorhealthservice providers?

Quiz: Independent Living and Inclusion

Choose the correct responses.

1. The objective underlying the right to live in community for persons with disability is

a. that they must be looked after by their natal families

b. full inclusion and participation is society

c. that they must be kept in shelter homes

d. institutions should be situated in communities

2. Segregation faced by girls with disability is because:

a. they are infantilised

b. of environmental barriers in mainstream spaces

c. of social barriers such as stigma, discrimination

d. all of the above

3. Some challenges of Institutional Care in India are:

a. Regimented schedules and lack of choice

b. Inadequate beds

c. High Costs

d. Only for persons with visual impairment

4. De-institutionalization is about

a. Access to physical spaces

b. Self-Representation

c. Equal Opportunities

d. All of the above

5. As activists our role is to:

a. Ensure people with disabilities are involved in all aspects of planning of community care

b. Set up Institutions to provide shelter to girls

c. Empower collectives of persons with disability to promote deInstitutionalization

d. Engage all stakeholders to mainstream community-based care.

6. Article 19 of the UN CRPD promotes full inclusion and participation in society. It’s three key elements are:

a. Choice

b. Individualized support that promote inclusion and prevents isolation

c. Making services for the general public accessible to people with disabilities

d. Protection of women with disability

Links & References

• inclusion-europe.eu/wp-content/uploads/2017/07/Jointsubmission-to-the-Draft-General-Comment-No-5-on-Article-19.pdf

• www.easpd.eu/en/content/roadmap-deinstitutionalisationmaking-community-based-services-reality

• youtu.be/FGcO0FcJQVM

• communitylivingforeurope.org/tag/community-based-living/

• Gooding, Piers Michael, The Right to Independent Living and Being Included in the Community: Lessons from the United Nations (November 21, 2018). 24 International Journal of Mental Health and Capacity Law 32-54, 2018, Available at SSRN: https://ssrn.com/abstract=3288312

• The UN Convention on the Rights of Persons with Disabilities, a commentary

• Bantekas, Ilias., Stein, Michael Ashley. and Anastasiou, Demetres. 2018

Notes

Violence against Women

Women with Disabilities face multiple and intersecting discriminations, marginalization, and denial of their human rights. They face almost three times higher levels of violence, discrimination and abuse than their non-disabled counterparts.

Reeling under the prejudices of a patriarchal and ableist society, women with disabilities are considered a burden. They are infantilised regularly and stripped of decision-making powers. They are not considered to be “woman enough” and routinely discriminated against or abused and harassed.

Domestic violence is difficult to document and report for disabled women, so no formal records are available. Much of the violence faced by women with disabilities occurs within the “safe” space of families and homes. Some forms of violence faced by Women with Disabilities are:

Physical Violence: Beating, pushing, mocking of their disabilities

Emotional Violence: Verbal abuse and isolation is common emotional violence. They are treated as an aberration and shame to the families, women face confinement, isolation from social functions which leads to lack of self-confidence and sense of personhood

Sexual Violence: There is a massive control over disabled women and their bodies which results in many forms of sexual violence including and not limited to rape, assault, forced hysterectomies and an overall control over their decision making especially in matters of their bodies, sexual experiences, child bearing and more.

Economic Violence: Since many of the places to access their money (like ATMs or digital applications) are inaccessible for women with disabilities, there is an increased chance of family controlling the income and money of the woman and withholding her from using it in a way she would like.

Denial of Access: Denial of access to knowledge, information, resources is one kind of violence. There is also denial of access to assistive aids which limits the woman with disabilities' mobility and increases dependence on the family.

Barriers - women and girls with disabilities face a lot of discriminatory treatment in terms of nutrition, access to health care when needed, restrictions resulting in barriers to employment and denial of right to education which restricts the growth and development of women with disabilities.

Challenges

Women with disabilities who live with a violent family member or if their Caregiver2 is the perpetrator of violence, there is often limited or no capacity for the support to continue if she reports the violence. This is a huge disincentive for women to identify their family members or caregivers as perpetrators of violence.

Treated as an aberration and shame to the families, women with disabilities often face confinement, isolation from social functions, lack of self-confidence and sense of personhood.

Discriminatory treatment in terms of nutrition, health care and education, denies women the opportunities to grow into their own.

Often in families, women with disabilities are forced to understand the violence and discrimination meted out to them as ‘normal’.

The control exerted by patriarchy on women’s bodies and their autonomy manifests in sexual violence, overlooking their own consent and decision making in matters of their bodies, health, marriages, child bearing.

Women with disabilities are disproportionately subjected to practices such as forced or coerced sterilization, contraception, and abortion. Substituted decision-making by parents, guardians, or doctors, who

make decisions about these reproductive health procedures for women deprived of legal capacity, is often specifically permitted by law. Forced practices are frequently based on false and discriminatory assumptions about women with disabilities’ sexuality or ability to parent or are based on the desire to control their menstrual cycles and growth.

Women and girls with different disabilities face high risk of sexual violence in India.

Those with physical disabilities may find it more difficult to escape from violent situations due to limited mobility.

Those who are deaf or hard of hearing may not be able to call for help or easily communicate abuse or may be more vulnerable to attacks simply due to the lack of ability to hear their surroundings.

Women and girls with disabilities, particularly intellectual or psychosocial disabilities, may not know that non-consensual sexual acts are a crime and should be reported because of the lack of accessible information.

For WWDs abandonment happens at two levels, one due to their disability and the other when they are discovered to have been victims of sexual violence, especially in instances where they have conceived as a result of the abuse. In both cases, their vulnerability increases to more sexual abuse in the society by their unprotected and homeless

2 for those who require care

state of being. Unfortunately, railway stations are a convenient place for such acts of abandonment.

Access to justice is particularly difficult for women and girls with disabilities largely due to the stigma associated with their sexuality and disability. As a result, they often do not get the support they need at every stage of the justice process: reporting the abuse to police, getting appropriate medical care, and navigating the court system.

Once abuse has been experienced and acknowledged, there are complicated mechanisms for complaints and redressal, absence of accountability of both state and private actors and insensitivity of personnel in the police and judicial systems.

From the point of view of disability, there are two striking shortcomings in addressing violence and abuse in the home setting, as the law only deals with situations where the perpetrator is a male member with whom the woman is living in a household relationship and does not cover female perpetrators and carers. Incest is common.

These challenges are exacerbated for women and girls with disabilities who experience unique stigmatization related to their disability, which can lead to social isolation and lack of access to information on legal rights and protections. Additionally, Information about sexual and reproductive health is frequently not provided in accessible formats, denying women and girls with disabilities information essential to avoid sexual abuse, unwanted pregnancy, and sexually transmitted infections (STIs).

Multiple factors make women with disabilities more vulnerable. These include:

• severity of the disability

• dependence on the abuser

• communication limitations (for instance, women with speech and hearing disabilities, intellectual disabilities, psychosocial disabilities)

• easy access to inmates in Institutions

• low credibility of complaints of harassment and abuse by WwDs (particularly women with psychosocial and intellectual disabilities)

• myths around sexuality (WwDs are asexual or hypersexual)

• whole range of socio- economic and cultural factors that configure the lives of non-disabled women in patriarchal society.

Advocacy: Our Role as Activists

Review all legislation and policies related to violence against women from a disability sensitive perspective.

Collect and disaggregate data on sexual and gender-based violence on the basis of gender, disability and age to inform government policies to better address the needs of women and girls with disabilities.

Properly implement laws and policies to protect rights in cases of gender-based and sexual violence against women and girls with disabilities (including those who live in Institutions). Adopt and implement:

• Ministry of Health and Family Welfare Guidelines and Protocols for Medico-Legal Care for Survivors/Victims of Sexual Violence across all states and jurisdictions.

• Rights of Persons with Disabilities Act 2016

• Juvenile Justice (Care and Protection of Children) Act 2015

• Domestic Violence Act 2005

• Committee on the Elimination of Discrimination against Women (refer to standard procedures for the police on gender sensitive investigation and treatment of victims and of witnesses)

Ensure the enforcement of the prohibition on the “two finger test” and that sanctions are applied when it is performed.

Ensure that police, judicial officers, medical officers and judges receive adequate training in the rights of survivors of sexual violence, including women and girls with disabilities. Enable Police and Courts to have access to “special educators,” who can identify disability accurately and provide support or other accommodations.

Formulate a uniform scheme to provide compensation to victims of sexual violence, including women and girls with disabilities. Compensation awarded should consider the additional costs incurred and urgent needs of victims with disabilities.

Put in place guidelines on the issue of identifying, addressing, redressing and rehabilitation in case of abuse of WWDs, especially in institutional settings.

Rights, Laws and Schemes

International Treaties

1981:ConventionoftheEliminationofAllFormsofDiscrimination againstWomen(CEDAW)

Article 5(1): Elimination of prejudice under

Article 15: legal capacity in civil matters

1989: Convention on the Rights of Child (CRC)

2013: Convention on the Rights of Persons with Disabilities (CRPD)

Article 6: twin track approaches towards the inclusion of women with disabilities

Article 11: mandates rights-based approaches towards the inclusion of persons with disabilities in humanitarian frameworks

Article 15 & 16: the right to live free from torture, ill-treatment, exploitation, violence and abuse

Article 24: the right to access education within an inclusive education system

Article 25: the enjoyment of the highest attainable standard of health, including sexual and reproductive health, without dis- crimination on the basis of disability

Article 27: the right to work on an equal basis with others

Article 28: the right of persons with disabilities to an adequate standard of living for themselves and their families

2030 Agenda for Sustainable Development

Outlines the Sustainable Development Goals (SDGs)

Country Laws

Country Laws have reflected issues faced by women with disabilities to some extent.

• 2005: Domestic Violence Act, 2005*

• 2013: Criminal Law Amendment**

• 2016: Rights of Persons with Disabilities (RPD) Act

• 2017: Mental Healthcare Act

*AlthoughtheDomesticViolenceAct,2005isbeingimplementedtoaddressissuesof violenceandabuseinthedomesticsettingforallwomen,WwDscontinuetofaceserious abusesatthehandsofrelatives.Theseincludethedeliberateactsofseclusion,denialof basicamenities,chaining,mentalabuse,emotionaldeprivationandabandonment.

**AfterthefatalgangrapeofayoungwomaninDelhiinDecember2012,thegovernment respondedtothepublicprotestsbystrengtheningTheCriminalLaw(Amendment)Act,2013 againstsexualviolence.Theamendmentsincludeseveralprovisionstosafeguardtherights ofwomenandgirls,includingthosewithdisabilities.Forexample,womenandgirlswith disabilitieshavetherighttorecordtheirstatementwithpoliceintheirhomeoraplaceoftheir choice,andtherighttoassistancebyaninterpreterorsupportpersonwhenthecomplaintis recordedandduringtrial.

Personal Reflection

• Haveyoueverexperienceddiscriminationorviolenceinyourown lifeasawomanwithdisability?

• Howdidyouovercomethem?

• Whatweretheenablingfactorsinyourownjourney?

• Whatdoyouliketosaytoyourfamily,communityorhealthservice providers?

Quiz: Violence against Women

Choose the correct responses.

1. Violence faced by Women with Disability manifests as

a. Physical, Emotional, Sexual or Economic Violence

b. An issue only in Institutions

c. An issue in urban areas

d. An issue only if the woman is rich

2. Girls and Women with Disability could face violence from

a. Teachers

b. Employers

c. Caregivers

d. Community Members

3. Some factors that make women with disability more vulnerable are:

a. Severity of the disability

b. Dependence on the abuser

c. Communication limitations

d. None of the above

4. Under the law addressing violence and abuse in the home setting:

a. Only male perpetrators living in a household relationship with a woman are covered

b. Only female perpetrators are covered

c. Only Care Givers are covered

d. Incest is included

5. As activists our role is to:

a. Ensure that police, judicial officers, medical officers and judges receive adequate training

b. Enable Police and Courts to have access to “special educators,” who can provide support.

c. Intervene in each and every situation of violence that happens

d. Review policies and focus on enforcement

6. Article 15 and 16 of the UN CRPD

a. focuses on access for girls with disability

b. focusses on the right to live free from torture, ill-treatment, exploitation, violence and abuse

c. promotes good health

d. focuses on equal employment

Stories to Talk About

Here are excerpts from women’s own accounts of their experiences. Work in groups to discuss:

• Whataretheformsofabusethatwomensharehere?

• Isitviolence?

• Whatkindofsupportcanbeprovided?

Amba’s Story (1)

The first doctor we went to after I tested positive asked my partner and me several questions, starting ‘Is this your first pregnancy?’ She then moved on to questions regarding our health history, and I was like, oh, well, I have mental health issues. Her eyes widened. ‘Are you on any medication?’

‘Well, I was, till a few months ago.’

She frowned. ‘Better not to tell anyone about the pregnancy till you do the ten-week scan.’ At ten weeks, you do the first screening for ‘abnormalities.’ ‘These medicines have all kinds of side effects,’ she said, giving me a look.’ As a disability rights activist, I found her matter of fact approach to terminating of ‘abnormal’ foetuses disturbing.

Amba’s Story (2)

At eight weeks, I was about to sit down to dinner when I felt a bright splodge of blood on my panties. We rushed to a nearby multispecialty hospital and I was led to the emergency room. The Doctor asked me to pull my pants down, and I obliged, and lo and behold, there was no more blood. She told me I would need to register and do a foetal heartbeat scan. I explained to her that I had registered here four years ago to see their psychiatrist, exactly twice. Her eyes widened. ‘Are you on psychotic medication?’ she asked.

‘What, no! I mean, there’s nothing wrong with being on…’

She pushed her face into mine. ‘Are you sure you are pregnant?’ I realised from her expression that she honestly believed that I was in some kind of delusional state of phantom pregnancy. By then, my partner had fished out the folic acid prescription from the previous doctor. She looked at it and seemed slightly convinced. It was only when I was preparing to see my regular ob-gyn that I looked at the patient history sheet from the hospital that night, just below the note on my diclofenac allergy, was in large, all caps: *WAS ON ANTI PSYCHOTIC MEDICATION TILL 2012’.

Read the complete story

Payal’s Story

When I was married 14 years ago, I was both totally blind and partially hearing impaired, as I still am. I was very much in love— I was looking forward to the beautiful dream come true that was going to be the rest of my life.

We weathered the usual settling down blues most couples go through when they are finally under one roof. He was messy, I was a neat

freak. He procrastinated, I needed things done yesterday. We saw these times through with smiles and tears. But then, things began to go downhill. Suddenly, he became a very private person. He began to have a problem with me talking to my close friends or my parents. He didn’t want to hang out with my friends or have much to do with my family any more. He regularly dumped me with my parents while he went out to see his friends which he just had to do alone. If I argued with him, there would be long painful silences, which to me as a blind person were like torture.

He found other ways to punish me whenever we had a disagreement. He would not touch the food I cooked and said he’d rather go hungry, which he knew was very painful for me. I’d beg, cajole, and go hungry myself, but to no avail. Things that I could not avoid became reasons for his anger: clothes that came out of the washing machine with lint on them were thrown at my face, missing and odd socks were all my fault, utensils that were washed and wiped with lint weren’t fit to be used. He once threw a bowl of curry because he found a piece of thread in it.

My hearing impairment also became a huge problem. He spoke softly and sometimes I had difficulty hearing him. But if I asked him to repeat himself, he would walk away. The more agitated I got, the lower my ability to hear got. Sometimes he left me alone in the house in the middle of the night with the door locked from the outside, without telling me he was leaving or answering his phone.

Was it my home, or prison? Where had all the love gone?

The distance between us grew. I changed although I am a talkative person, I found myself becoming quieter. My love of singing and

listening to old Hindi songs became unbearable to him. I was tone deaf and Lata Mangeshkar shrieked. I stopped that too, to keep the peace. I stopped watching TV because we were interested in watching different things, and there was no middle ground.

Read the complete story

Jhilmil’s Story

It began when I was 21 and met my ex-husband, then a dashing US Air Force officer. We got married in 1992 and everything seemed rosy. In hindsight, I can see there were red flags, but like many people, I ignored them. When he wanted to control all our money, even though we were both working. When he forced me to have sex.

When he pouted and sulked for days if I refused, and I decided that it was best to perform just to keep the peace. When he kept me isolated from my friends and family because he claimed he did not like to go out. When he said let’s not employ a cleaner because he was an American and it was an invasion of his privacy. I tried. God knows I tried to comply, to change, to perform, to please.

But sometimes, things are not meant to be. When in 2002, desperate to save my marriage after ten years, a business together and three kids, I opted for therapy to cope with the stress, I was labelled as the ‘crazy’ one. Even though the therapist at the time suggested that we all get therapy, my husband and my parents refused. Their answer: ‘We are fine, you go.’ I continued with the therapy and hoped things would improve at home.

They did not. Things got so bad that I could not breathe. I would wake up at night, gasping for breath. I was routinely awakened from deep sleep for sex and I would comply. That I would vomit right after, and bleed from all my orifices, was a matter of concern only to me. When I

told my parents that I was being sexually abused, they tried to brush it under the carpet.

And so it went. 2002 became 2006. I tried harder to focus on the marriage. I tried to be a ‘good’ wife. In the meantime, my family and ex-husband started floating the theory that I had mental illness because I was getting therapy. Words like bipolar disorder were flung around, although I was never officially diagnosed.

In 2007, while having a meltdown, I found myself being taken to a psychiatric facility. I was taken alone; my father and ex-husband had colluded to have me committed. That incident changed my life and I was locked up for 46 days, including two weeks in solitary, with guards present around the clock. The whole process was a concerted and systematic way of dehumanizing you. From the hospital gowns they make you wear, to the shackles around your feet, from the force feeding of medicine and routine injections if you dare to dissent, to the cruelty of the nurses and orderlies who have you at their mercy. The place broke my spirit. And it was designed to do just that.

Read the complete Story

Links & References

• Video: Ending the silence by Rising Flame

• Denial of sexual rights: insights from lives of women with visual impairment in India

• Women with disabilities: India's 'invisible victims' | India

• Five things you didn’t know about disability and sexual violence

• Rising from the ashes: How I rebuilt my life after I left my abusive husband

• Five facts to know about violence against women and girls with disabilities

Annexure

Government Programmes and Schemes on Education

Integrated Education for Disabled Children (IEDC) 1974

• To provide equal opportunities to children with disabilities in general schools and facilitate their retention.

Sarva Shiksha Abhiyan (SSA) 2001

• To achieve the goal of Universalization of Elementary Education ie access, enrolment and retention of all children in 6-14 years of age.

• It has a zero-rejection policy that ensures that every Child with Special Needs (CWSN), irrespective of the kind, category and degree of disability, is provided meaningful and quality education.

National Curriculum Framework (NCF) 2005

• Implemented a National Action Plan for the inclusion in education of children and youth with disabilities.

Inclusive Education of the Disabled at the Secondary Stage (IEDSS)

2009-10

To provide assistance for the inclusive education of disabled children at class 9 and 10.

IEDSS included in Rashtriya Madhyamik Shiksha Abhiyan (RMSA) 2013

• Eligibility: All children studying at the secondary stage in Government, local body and Government-aided schools, with one or more disabilities as defined under the Persons with Disabilities Act (1995) and the National Trust Act (1999) in the class IX to XII.

• Girls with the disabilities receive special focus to help them gain access to secondary schools, as also to information and guidance for developing their potential.

• Setting up of Model inclusive schools in every State

Student-Oriented components

• Medical and educational assessment, books and stationery, uniforms, transport allowance, reader allowance, stipend for girls, support services, assistive devices, boarding the lodging facility, therapeutic services, teaching learning materials, etc.

• Rs. 3000 per annum per disabled child in the age group of 14 to 18+ years (class IX-XII) will be given to the school which can be utilized in a flexible manner on certain items such as cost of assessment to specialists, book, stationery, uniform, transport allowance, reader allowance, escort allowance, assistive device, hostel facilities, therapeutic services, purchase of screen reading software, purchase of instructional materials.

Children with disabilities must have disability certificate to avail the facilities.

Aids and Appliances

• Access to learning materials such as braille, talking book, large print book, video tape

• Stipend for girls with disabilities as Rs. 200 per month at secondary level to encourage their participation up to senior secondary level

• Provision for purchase of special software such as screen reading software like JAWS, SAFA, for visually impaired and speech recognition software for the hearing impaired to develop computer vocabulary for the hearing impaired and modified hardware like adapted keyboards. Computer provided to students at secondary school will also be made accessible to those with disabilities.

• Development of teaching and learning materials- financial assistance will be available for purchasing/ production of instructional materials and for purchase of equipment required for that. The available materials will be translated and produced in regional language. It will also support the workshops for adaptation in curricular content and development of supplementary materials for teachers and students.

• Cost of non- beneficiary-oriented components include appointment of special education teachers, allowances for general teachers for teaching such children, teacher training, orientation of school administrators, establishment of resource room, providing barrier free environment, etc.

• Removal of architectural barriers to ensure that students with disabilities have access to classrooms, laboratory, toilet, library

• In service training for resource teachers, regular and special teachers, principals, school management

• Strengthening the training institutions and assistance to existing organisations/NGOs to develop teacher training programme in inclusive schooling and for educational interventions for specific disabilities

• Provision of resource rooms and equipment

• Appointment of special teacher in inclusive school to support the children with disabilities and regular school

• Environment building programme up to Rs. 10,000/- per programme at local level

• Construction of block level resource room @Rs. 2,00,000/- per room for 5000 blocks and equipment of Rs. 70,000 per resource room for 6000 blocks

• 5% of central funds for innovative and Research and development project and support up to Rs. 5,00,000 for setting up of model schools

• Regulation for relaxation of rule related to exam, admission, minimum and maximum age for admission

• Provision in adaptation in examination evaluation procedure as well as alternative mode of examination for some children with disabilities according to their special needs.

Schemes for Higher Education

• Providing access to students with disabilities such as disability friendly environment as ramps, rails, special toilets, makes necessary adjustments to suit the special need.

• Providing special equipment to augment educational services such as low-vision aids, scanners, mobility devices

National Overseas Scholarship

For students with disabilities who peruse master level and Ph.D. level in the field of engineering, management, pure sciences, social sciences, applied sciences, agriculture, medicines, commerce and out of 20 scholarships for each year, 6 scholarships are reserved for women with disabilities.

Saksham Scholarship Scheme:

All India Council of Technical Education implemented the scheme by the objective to provide encouragement and support to 1000 students with disabilities to pursue technical education in a year, fulfilling the eligibility criteria mentioned in the scheme.

Rajiv Gandhi Fellowship Scheme

The scheme offers scholarships to individuals with disabilities to pursue higher education such as M. Phil / Ph. D for almost 200 fellowships every year and covers all the universities and institutions covered by the University Grants Commission.

All students with disabilities admitted to M. Phil / Ph. D programmes of any university or academic institution are eligible for the fellowship provided they meet the requirements of the scheme.

The fellowship will be awarded for a maximum of five years.

There is no restriction as regards to the minimum marks in the PostGraduation examination.

There is no restriction to the effect that a student with disabilities should have cleared NET/SLET examination for being eligible for receiving the RGN.

UGC Guidelines

Reservation in admissions: UGC has given instructions to all universities and colleges for providing 3% reservation (horizontally) in admissions for student with disabilities, including hearing impairments.

Government Programmes on Health

Reproductive, Maternal, New-born, Child and Adolescent Health Programme

RMNCH+A Programme essentially looks to address the major causes of mortality among women and children as well as the delays in accessing and utilizing health care and services. It also introduces new initiatives like the:

• Score Card to track health performance,

• National Iron + Initiative to address the issue of anaemia across all age groups

• Comprehensive Screening and Early interventions for defects at birth, diseases, and deficiencies among children and adolescents.

Janani Shishu Suraksha Karyakram (JSSK) 2011

To provide for both pregnant women and sick new born till 1 year after birth:

• Free and zero expense treatment

• Free drugs and consumables

• Free diagnostics & Diet

• Free provision of blood

• Free transport from home to hospital

• Free transport between facilities in case of referral

• Drop back from institutions to home

• Exemption from all kinds of user charges

• To promote Institutional delivery

To eliminate out of pocket expenses which act as a barrier to seeking institutional care for mothers and sick new born

To facilitate prompt referral through free transport

New- Born Health

• Over 60% of Infant Mortality Cases are caused by Neonatal Mortality.

• To address the issues of higher neonatal and early neonatal mortality, facility-based new-born care services at health facilities have been emphasized.

Facility Based New Born & Child Care

• Special New-born Care Units (SNCU)

• States have been asked to set up at least one SNCU in each district

• 12-20 bedded unit and requires 4 trained doctors and 10-12 nurses for round the clock services.

New-born Stabilization units (NBSUs)

• NBSUs are established at community health centres /FRUs.

• 4 bedded units with trained doctors and nurses for stabilization of sick new-borns

New Born Care Corners (NBCCs)

• NBCC at each facility where deliveries are taking place should be established.

• 1 bedded facility attached to the labour room and Operation Theatre (OT) for provision of essential new-born care.

• A comprehensive “Facility Based Newborn Care Operational Guide- 2011, a guideline for planning and Implementation” have been published and disseminated in 2011 by Child Health Division, MoHFW, GOI to act as reference tool for the states to take necessary steps in implementation of same.

Menstrual Hygiene for Adolescent Girls Scheme 2011

• To increase awareness among adolescent girls on Menstrual Hygiene by ASHA workers primarily in rural areas

• To increase access to and use of high quality sanitary napkins to adolescent girls in rural areas (available at a subsidized price)

• To ensure safe disposal of Sanitary Napkins in an environmentally friendly manner.

Rashtriya Kishor Swasthya Karyakram (RKSK) 2014

• To ensure holistic development of adolescent population, reach out to- male and female, rural and urban, married and unmarried, in and out-of-school adolescents with special focus on marginalized and undeserved groups.

• Includes in nutrition, injuries and violence (including gender-based violence), non-communicable diseases, mental health and substance misuse.

• The strength of the program is its health promotion approach. It is a change from the existing clinic-based services to promotion and prevention and reaching adolescents in their own environment, such as in schools, families and communities. These are done through community-based interventions like, outreach by counsellors; facility-based counselling; Social and Behaviour Change Communication; and strengthening of Adolescent Friendly Health Clinics across levels of care.

• Adolescent often do not have the autonomy to make their own decision. RKSK takes this into consideration and involves parents and community. Focus is on reorganizing the existing public health system in order to meet the service needs of adolescents.

• Under this a core package of services includes preventive, promotive, curative and counselling services, routine check-ups at primary, secondary and tertiary levels of care is provided regularly to adolescents, married and unmarried, girls and boys during the clinic sessions.

Government Programmes and Schemes on Livelihood

Childcare

Ministry of Personnel, Public Grievances and Pensions

• 16 US Dollars (INR 1000) per month shall be paid as special allowance for child care to women with disabilities for maximum two children or till the child is two years old. There will be an increase by 25% every time the Dearness allowance on the revised pay structure goes up by 50%.

Employment

National Scheduled Caste Finance Development Corporation (NSFDC)

• 1% rebate in the interest for women with disabilities under all its schemes including micro- credit scheme

National Handicapped Finance and Development Corporation (NHFDC)

• Special rebate of 2% on interest is given to women with disabilities in all the schemes of NHFDC.

Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment

• Scheme of assistance to disabled persons for purchase/ fitting of aids and appliances (ADIP scheme), 25% of the budgetary allocation is earmarked for women

Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment

• Several Vocational Rehabilitation Centres (VRC) have been set up by the Government. One such VRC for Handicapped at Vadodara is exclusively for the disabled women Awards

Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment

• Seven National Awards for Empowerment of PWDs are reserved for women with disabilities

• However, during 2018-19 only 19% of them who registered actually worked, due to poor working conditions3, Implementers lack awareness on accommodations under MGNREGA for inclusion.

• Inclusion of persons with psychosocial disability and learning disabilities is disproportionately low under the programme4. It does not help women with disabilities.

• Mudra Loan Scheme: boost livelihoods by extending affordable credit, without security or collateral, to allied agricultural activities, non-farm micro and small enterprises in manufacturing, trading and services. 134 million people availed of Mudra loans since its inception in 20155 . There is no disability disaggregated

3 Ministry of Rural Development (2019) ‘Number of disabled persons and person days for the financial year 2018-19’. Accessed on 03.01.2019 at http://mnregaweb4.nic.in/netnrega/state_html/stdisabled.aspx?lflag=eng&fin_year=20182019&source=national & labels=labels & Digest=2sK2jsi9G7FHeqD/Cv4G1Q -

4 Draft Socio-Economic Impact of Mahatma Gandhi National Rural Employment Act 2005’ Infra.

5 http://www.newindianexpress.com/nation/2018/oct/22/over-90-beneficiaries-under-pmmy-scheme-gotloans-less-than-rs-50000-1888279.html

data of usage and access, and no focus on ensuring such loans for women with disabilities the poorest of the poor.

• The National Handicapped Finance Development Corporation gives loans to persons with disabilities for livelihood programmes. In 2017-18, out of 7785 disabled beneficiaries who received loans for their small business, only around 700 women benefitted6 .

• Access to Financial aid and Other Support - Equal facility for Bank loan and business products for persons with disabilities – as per Section 234 of the Initial India Report a circular issued by RBI stipulates no discrimination in extending products and facilities, “including loan facilities to the physically/visually challenged applicants on grounds of disability”. While such a circular is much appreciated, it is surprising why it excluded other persons with disabilities and whether it will consider encouraging women with disabilities more to access the facility as it does to empower all women.

• Uddyam Prabha (Incentive Scheme) by National Trust – Para 234 of the Initial India Report mentions the Uddyam Prabha scheme of National Trust which aims to promote economic activities for selfemployment of persons with disabilities through interest incentive up to 5% for BPL and 3% for others on loans up to 0.016 million US Dollar for 5 years. There has been no data given about how

6 http://www.nhfdc.nic.in/writereaddata/nhfdc/2017_2018.pdf

many beneficiaries under Uddyam Prabha (Incentive) Scheme and its time frame.

• Formation of National Skill Development Corporation (NSDC) by Govt. of India

• Vocational training courses offered by National Institutes of Department of Empowerment of Persons with Disabilities and its affiliate organisations like National Handicapped Finance and Development Corporation (NHFDC), National Trust etc.

• Ministry of Labour and Employment supervising more than 20 Vocational Rehabilitation Centres for Handicapped (VRCHs) and more than 1000 Employment Exchanges.

• ITIs courses - Technical and Vocational courses, being offered through Community colleges, IITs and Universities, affiliated with Ministry of Human Resources Development.

• National Rural Livelihood Mission of Ministry of Rural & Urban Development

• Compendium of schemes, 2018, published by Government of India, MSJE, Dpt. of empowerment of PWDs, under The National Action Plan for Skilling the PWDs; Objective & Coverage, point (b) says - 30% reservation for women candidates: As an Endeavour to encourage women, 30% of the total intake of each training program shall be earmarked for women candidates. However, no

data /information is available on such coverage in any livelihood initiative by Govt. so far.

• In the context of violence and exploitation within the family, the Act provides for immediate and emergency relief to women facing domestic violence in the form of protection order, a coordinated implementation mechanism, consisting of protection officer, temporary custody order, monetary reliefs, compensation for emotional distress resulting from violence, shelter homes, that are mandated to provide better access to justice and other supportive services. PWDV Act 2005 also includes provision for shelter home in case of the victim needs to be move in a safe place.

• However, again this important act does not have specific provision to address the concerns of WWDs facing domestic violence and the process / procedure, the shelter homes, the support services at police station, courts or in shelter homes are not accessible for WWDs and therefore, the act needs to be amended immediately to make it disability inclusive.

• Women’s Commissions - for redressal of women’s issues

• National Commission of Women (NCW) and State Commissions of Women (SCW) were set up to take up issues of human rights violations of women on an immediate and urgent basis including support in accessing the legal justice system.

• However, neither National Commission nor State Commissions are well equipped or have appropriate understanding and are mostly found to be ignorant about the concerns of WWDs. These

commissions do not have any specific focus / program/ special Cell to address the incidents of violation of rights of WWDs along with promotion and protection of the rights of WWDs, which is a huge need.

Abbreviations

• CEDAW: The Convention on the Elimination of All Forms of Discrimination against Women

• CRPD: Convention on the Rights of Persons with Disabilities

• CP: Cerebral Palsy

• DV: Domestic Violence

• GBV: Gender Based Violence

• GOI: Government of India

• MH: Mental Health

• MNREGA: Mahatma Gandhi National Rural Employment Guarantee Scheme

• MR: Mental Retardation

• NGO: Non-Government Organizations

• OBC: Other Backward Class

• PWD: Persons with Disabilities

• PHC: Primary Health Care

• PWDVA: Protection of Women from Domestic Violence Act

• PO: Protection Officer

• RCI: The Rehabilitation Council of India

• RPD: Rights of Persons with Disabilities

• SC: Scheduled Castes

• ST: Scheduled Tribes

• UN: United Nations

• UNCRPD: United Nations Convention on the Rights of Persons with Disabilities

• UGC: University Grants Commission

• WWD: Women with Disability

Quick Reference

Disabilities included in RPWD Act 2016

• Blindness

• Low Vision

• Leprosy Cured Persons

• Locomotor Disability

• Dwarfism

• Intellectual Disability

• Mental Illness

• Cerebral Palsy

• Specific Learning Disabilities

• Speech and Language Disability

• Hearing Impairment

• Muscular Dystrophy

• Acid Attack Victim

• Parkinson’s Disease

• Multiple Sclerosis

• Thalassemia

• Haemophilia

• Sickle Cell Disease

• Autism Spectrum Disorder

• Chronological Neurological Conditions

• Multiple Disabilities including Deaf Blindness

Indian Disability Laws

• 1992: Rehabilitation Council of India Act

• 1999: National Trust Act for persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities

• 2009: Right to Education Act, (Amendment 2012)

• 2016: Rights of Persons Disabilities Act

• 2017: The Mental Healthcare Act

• International Disability Laws

• United Nations Convention Rights Persons with Disability

• The Convention on the Elimination of All Forms of

• discrimination against women (CEDAW)

• International Covenant on Economic, Social and Cultural Rights

• (ICESCR)

• International Covenant on Civil and Political Rights (ICCPR)

• Committee on the Rights of the child (CRC)

• Committee on the Elimination of Racial Discrimination (CERD)

• The Committee Against Torture (CAT)

• The Committee on the Protection of the Rights of All Migrant

• Workers and Members of their Families (CMW)

About the Authors

The Women with Disability India Network (WWDIN) is a cross disability network. It is an independent virtual platform run by and with Women with Disabilities who have come together to exchange views and advocate policies. Key initiatives of the Network include reporting to the UN Special Rapporteur on Violence Against Women, Ms. Rashida Manjoo in 2013; advocacy using CEDAW in 2014 & UNCRPD in 2019 and advocacy to include women with disabilities in RPWDA in 2016. For further information contact Reena Mohanty: wwdin2020@gmail.com

Shanta Memorial Rehabilitation Centre (SMRC), a leading voluntary organization was established in 1985 by Ashok Hans and other likeminded people to give voice to the disabled on their rights. SMRC’s core expertise is in the field of Gender, Disasters, Research & Education working through communities especially in rural areas. For further information email smrcbbsr@gmail.com.

Ratnaboli Ray is an Ashoka Fellow, trained clinical psychologist and mental health activist. She is the founder of Anjali, a rights-based organisation based in Kolkata, West Bengal, which works for persons with mental health condition and or psychosocial disability. She was awarded the Human Rights Watch's Alison Des Forges Award for Extraordinary Activism.

Dr. Sandhya Limaye is Associate Professor, Centre for Disability Studies and Action, School of Social Work, Mumbai. She is an

Erarsmas Mundas Fellow, Freie University, Germany and a Fulbright Fellow University at Buffalo, USA.

Kuhu Das is the Founder Director of Association for Women with Disability. She is a disability and gender rights activist with long term experience of working with rural communities.

Jeeja Ghosh graduated with Honours in Sociology from Presidency College Kolkata, has a Masters in Social Work from the Delhi School of Social Work Delhi University and a second masters in Disability Studies from Leeds University UK. Jeeja was born with cerebral palsy and has been involved in the disabled people's movement for over two decades and is connected to other disability rights activists across India. Her special interest is women with disabilities.

Nidhi Goyal is an Indian disability and gender rights activist who has been appointed to the UN Women Executive Director's advisory group. Nidhi is the founder and director of Mumbai-based NGO Rising Flame and works in the areas of sexuality, gender, health and rights for women and girls with disabilities. She is also the first blind female stand-up comedian in India.

Dr. Nandini Ghosh is Assistant Professor of Sociology at the Institute of Development Studies Kolkata. She has a Ph. D. in Social Sciences from the Tata Institute of Social Sciences in the broad area of Gender and Disability Studies

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