Disability: A Perspective
Disability is the disadvantage or restriction of activity caused by the environment or society which takes little account of people who have physical impairments and thus excludes them from mainstream social activities. Impairment, on the other hand, refers to some bodily defect, usually constituting a medically classified condition. This analysis of disability within a social framework shifts the position from individual to social ie. discrimination, exclusion and social oppression.
The disadvantage experienced by disabled people is seen to be institutionalised throughout society. The social model approach to disability demands an identification and analysis of the social, political and economic conditions that are imposed on their already existing impairments to restrict or limit the person's participation in society. The United Nations Convention on Rights of Persons with Disabilities defined disability as an evolving concept. Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.
Challenges
Disability is present in social structures, manifesting in:
• Ignorance
• Fear
• Stigma
• Lack of Education
• Inaccessible facilities, transport, information
• Lack of and inflexible employment
• Lack of social network
• Lack of choices for home and family
• Overprotection, hidden and made invisible
• Segregated services
• Lack of sexual citizenship
There are three main models of disability.
Charity Model: The charity model of disability looks at disability as the problem of an individual person. The person becomes a passive victim and is an object of pity, as the disability becomes their main identifying factor.
Whatitlookslike:People in your community assume you will always need help and pity you. You are considered a burden requiring charitable resources for support.
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Medical Model: Later, the charity model evolved into the medical model where people with disabilities were treated as sick and needed to be cured, fixed and cared for through medical intervention and therapy. Under the medical model, the experts on disability were considered medical professionals, such as doctors, nurses, therapists.
Whatitlookslike:People in your community perceive you as “sick” because of your disability. Most services are focused on curing your disability or making you appear non-disabled, instead of making the environment more accessible. For example, wheelchairs may be provided, but the streets are not accessible. While we need medical interventions to better manage or prevent further disability this needs to be a choice and not an imposition by people who know better. The implications of interventions also need to be laid out clearly.
Social and Human Rights Model: Based on a human rights paradigm, these models emphasise that disability-related problems stem from an inaccessible social structure, as opposed to the disability itself. These models focus on environmental and attitudinal barriers that prevent people with disabilities from having equal opportunities in their societies. Many disability rights activists today embrace social and/or human rights models to inform their work.
Whatitlookslike:A person with a disability is able to attend school, go to work, participate in social activities alongside non-disabled people, perhaps using disability-related accommodations or
modifications that make the environment more accessible to them, have children, exercise voting rights, etc.
Capacity: Capacity refers to a person’s ability to do or understand something. Capacity is an intrinsic value of human life, one that all humans possess in degrees. It is a three-step process:
Step 1: Understanding the facts and choices involved;
Step 2: Analyzing Consequences and
Step 3: Communicating the Decision.
Capacity has two dimensions: mental and legal. Mental Capacity is centred on making decisions, while Legal Capacity refers to the inherent recognition of people as holders of rights and being able to implement those rights.
Understanding Mental Capacity: Any adult person can be better at making certain decisions, while not being as adept at making other decisions. For example, a person can be good at budgeting and making financial decisions, but may lack the knowledge to understand legal terms, hindering them from entering a legal contract. Therefore, a person’s capacity is always decision specific.
Mental Capacity is determined by:
• Timing of the decision - a person may be more competent to make decisions when not preoccupied with other matters, or maybe when their environment suits them
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• Level of complexity involved in the decision making - a person may be able to make simpler decisions by themselves but may require assistance from others to make more complicated decisions, especially if the process requires something outside their skillset
• Information received and understood by the person
• Clarity in Communication during the process of decision making
• Physical Environment, especially when it affects the person’s stress levels
• Experience with the situation at hand
• Health Conditions. A person is usually more competent when healthy
• Personal issues that the person may be undergoing at that moment
Understanding Legal Capacity: Legal capacity can be defined as a person's authority under law to engage in a particular undertaking or maintain a particular status, and/or enter into contract for work, business, marriage, dissolution of marriage, etc.
All persons above the age of 18 in India have legal capacity. However the capacities of persons with disabilities are often demeaned by the social structures and the popular belief that their “impairments” make them incapacitated to perform activities usually expected from a “ nondisabled” person. The whole arena of soliciting their opinions even in matters that concern their lives are not considered necessary or
important by society or by those in their immediate circle. This lack of conviction in their capacity for deciding for themselves naturally spills over to their capability to exercise their legal capacity.
Interestingly persons with disabilities are not a homogeneous community. The ambit of exercising their legal capacity is determined by the nature of impairment of the person in concern. Thus, from experience it has been noticed the acknowledgement and exercise of legal capacity is relatively more under scrutiny for persons with psychosocial, intellectual and in some instances developmental disabilities.
Throughout history, Indian laws have given recognition to substitute decision making for persons with psychosocial disabilities. In multiple Indian laws, persons with “unsound” mind have been forbidden from entering a legal contract including marriage, unless in a lucid interval.
It is important to note here that unsoundness of mind is not synonymous with and has no correlation with mental illness and psychosocial disabilities. Unsoundness of mind, the way in which it is mentioned in Indian laws, refers to a state in which due to intoxication, inebriation or being under undue influence of substances, may momentarily hamper a person’s rationale and judgement. It is also important to keep in mind that soundness of mind has not been defined in any law, thereby making unsoundness of mind hugely contestable.
Understanding Supported Decision Making: In order to exercise legal capacity, Article 12 includes supported decision making which
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involves support and safeguards. The decision will be that of the individual with psychosocial disability but may be enacted and ascertained by the nominated person. While making decisions there can be a gap between a holder (of mental capacity and decision) and an actor (legally being able to act) and that is where supported decision making comes in. Now this support can manifest in many different ways. The delinking of mental capacity and legal capacity is the basis for a shift from substitution to support. Many laws diminish the self-determination of people with disabilities by attributing that power to someone who is considered to be of more ‘able’ status, therefore substituting their legal capacity and decision making to anyone who has their best interest. This is generally done following tests by medical professionals to assess capacity of persons with disabilities. But these tests are contended as they seek to find out impairment degrees more than intrinsic human values like capacity and self-determination. However, once one acknowledges that legal capacity is not determined on the basis of mental capacity, it is possible to provide support even to those with differing levels of mental capacity in order for them to enforce their capacity.
Supported Decision Making
…
• Is a decision that a person takes voluntarily - that of appointing someone to carry out their decisions. It does not mean someone else makes decisions on the person’s behalf. This person who is appointed is known as a nominated representative who is meant
to only carry out the decision of the other who has appointed them.
• Is an approach using values and principles designed to support people living with mental health and coexisting conditions, to assist them to exercise legal capacity and exert greater choice and control. It does not assume that the person who is being supported does not possess capacity.
• Can be realised through advocacy with relevant stakeholders to develop support mechanisms that allow people to make their own decisions, train relevant people who do this kind of work, as well as advanced planning, sharing of adequate information and knowledge, and enhancing local ombudsman systems.
• Focuses on the will and preferences of the person with psychosocial disability as opposed to what might be perceived to be in their best interest.
• Substitute decision-making paradigms often work using the “best interests” principle, whereby the person who is making decisions on behalf of the person with mental illness has to make a decision that would be in that person’s “best interests.”
• Supported decision making can be an instrumental tool for women with psychosocial disabilities, who have been historically excluded from participation and exertion of choice.
• Supported decision making can be achieved at a practical level by developing indicators for persons with disabilities to decide for themselves whether or not through supported decision making
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they have access to participation and inclusive services, removing barriers for women with disabilities in accessing justice, public services, equal opportunities in education, employment, marriage.
Rights, Laws and Schemes
International Treaties
UnitedNationsConventiononRightsforPeoplewithDisability
Article12:EqualRecognitionbeforethelaw
States Parties reaffirm that persons with disabilities have the right to recognition everywhere as persons before the law.
States Parties shall recognise that persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life.
States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.
States Parties shall ensure that all measures that relate to the exercise of legal capacity provide for appropriate and effective safeguards to prevent abuse in accordance with international human rights law. Such safeguards shall ensure that measures relating to the exercise of legal capacity, respect the rights, will and preferences of the person, are free of conflict of interest and undue influence, are proportional and tailored to the person’s circumstances.
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Article14:Libertyandsecurityofperson
States Parties shall ensure that persons with disabilities, on an equal basis with others:
a) Enjoy the right to liberty and security of person;
b) Are not deprived of their liberty unlawfully or arbitrarily, and that any deprivation of liberty is in conformity with the law, and that the existence of a disability shall in no case justify a deprivation of liberty.
States Parties shall ensure that if persons with disabilities are deprived of their liberty through any process, they are, on an equal basis with others, entitled to guarantees in accordance with international human rights law and shall be treated in compliance with the objectives and principles of the present Convention, including by provision of reasonable accommodation.
Country Laws
1872:IndianContractActmentions that a person can be considered of sound mind during entering a contract, if at that point he understands it and can formulate a rational idea about its effects on his interests. This negates the capacity of any person who does not understand legal terms, irrespective of disabilities.
1912:IndianLunacyActauthorised any police officer to arrest any person who is believed to be a “lunatic”, violating their right to move freely, irrespective of whether the person truly had a medical condition or not. It also forbade such persons from holding property as they were not considered competent enough for the responsibility.
1987:MentalHealthActalso kept this notion alive, along with assigning persons with “unsound mind” to the care of a guardian who will take all legal decisions on their behalf.
2016:RightsofPersonswithDisabilitiesActis the disability legislation passed by the Indian Parliament to fulfill its obligation to the United Nations Convention on the Rights of Persons with Disabilities, which India ratified in 2007. The Act replaced the existing Persons with Disabilities Act, 1995.
2017:MentalHealthcareActlays down a procedure for persons with psychosocial disability to prepare an Advanced Directive where they can specify their preferred medical action, preferences for institutionalisation, or even appoint another person of choice to take such decisions when they themselves are not in their “lucid interval”.
Any person can admit themselves or discharge themselves from institutions of mental care voluntarily, through a medical board. This establishes legal capacity of persons with psychosocial disability on paper.
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Advocacy: Our Role as Activists
• Promote the social model of disability
• Advocate with relevant stakeholders to develop support mechanisms that allow people to make their own decision
• Build partnerships with local communities to develop a safety net
• Train relevant people who do this kind of work
• Ensure authentic representation when creating interventions
• Share adequate information and knowledge and enhance local ombudsman systems
• Involve local governments as stakeholders in providing services and schemes
• Large-scale awareness that is representative of people with disabilities so that they are not otherisedas a result of being invisible
• Regular conversations around this population with relevant state social welfare and legal departments
Personal Reflection
• Whatmodelofdisabilitydidyouwitnessorexperiencegrowing up?
• Hasyourmentalorlegalcapacityeverbeenchallenged?
• Whatweretheenablingfactorsinyourownjourney?
• Whatdoyouliketosaytoyourparentsorschoolorcommunity?
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Quiz: Disability
Choose the correct response/s.
1. Disability refers to
a. Physical impairments on the body
b. Restrictions caused by society which does not account for people who have physical impairments
c. An inability to take action
d. Physical or mental handicaps
2. When people in the community assume a person with disability will always need help and pity, the disability model is the…
a. Charity Model
b. Medical Model
c. Social or Human Rights Model
d. None of the Above
3. When people in your community perceive you as “sick” because of your disability, the disability model is…
a. Charity Model
b. Medical Model
c. Social or Human Rights Model
d. None of the Above
4. Capacity is:
a. A person’s ability to do or understand something
b. An intrinsic value of human life, one that all humans possess in degrees
c. A three-step process: understanding the facts and choices involved; analyzing consequences and communicating the decision
d. All of the above
5. Legal Capacity...
a. is the right of every human being over 18 in India
b. is the ability to handle legal matters independently
c. is the authority to enter into contract for work, business, marriage, dissolution of marriage etc.
d. is the skill of lawyers
6. Supported decision making...
a. Is a voluntary decision of appointing someone to carry out their decisions
b. is an approach to assist people with disability to exercise legal capacity and exert greater choice and control
c. Focuses on the will and preferences of the person with psychosocial disability
d. All of the above
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Stories to Talk About
Aditi’s Story
Aditi is a person with moderate intellectual disability. Sometimes, she gets anxious when she has to choose from a lot of options. When her mother tried to get Aditi to pick out her own outfit for the day, Aditi became nervous and withdrawn.
• HowwouldyousupportAdititomakedecisions?
In this situation, Aditi’s mother helped Aditi express her preferences for what to wear by breaking down the decision into smaller, simpler steps. First, she would ask Aditi which colour she would like to wear that day. Then, Aditi’s mother would lay out outfits only in that colour. Pooja would then choose the outfit she liked best.
• WhatdoyoufeelaboutAditi’smother’sapproach?
• Doyouhaveanyexamplesofsupporteddecisionmaking?
Jaya’s Story
Jaya is a 45 years old woman with cerebral palsy. She is a wheelchair user and communicates through the medium of augmentative and alternative mode of communication. She needs assistance with most of the activities of daily living. She has a post graduate degree and works for a multinational company using special software. She is
however given very little space to make her own decisions. Her finances are controlled by her parents. Her mother even controls the kind of food she eats on the pretext that she might falls sick. She is just not given the status of an adult. She gradually sinks into depression.
• WhatdoyoufeelaboutJaya’ssituation?
Shila’s Story
Shila was diagnosed with depression in a government hospital. She comes from a resource poor background and has to work as a domestic help at local houses. One day you see her with bruises on her face. She says her unemployed husband gets drunk every evening and beats her. He also takes away the money she has earned. She needs this money to feed her two children and even their school fees. She has nowhere else to go and does not want to lodge a police complaint against him.
• WhatrightsofShilaarebeingviolated?
• Howwillyouintervene?
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Links & References
• Capacity Toolkit : https://www.justice.nsw.gov.au/diversityservices/Documents/ca pacity_toolkit0609.pdf
• Video : https://www.youtube.com/watch?reload=9&v=J3PVqTYI05s
• https://reimagine.today/step-1/disability-and-psychosocialdisability/
• Supported decision making: A guide for caregivers in IndiaCentre for Mental Health Law and Policy, Indian Law Society, Pune
Notes
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Education
Education plays a significant role in empowering girls and women with disabilities. It is responsible for economic, social and political growth of girls to enable them to become productive members of society. The aim is to provide education in an ‘appropriate environment’ to all girls with disabilities, irrespective of the type or degree of impairment. There are four types of education that are especially relevant for women with disabilities.
Inclusive Education
The goal of an inclusive education system is to provide all students with the most appropriate learning environments and opportunities for them to best achieve their potential. Characteristics of Inclusive Education:
• Acknowledges that all children can learn and respects differences in children – age, gender, ethnicity, language, disability.
• Enables education structures, systems and methodologies to meet the needs of all
• Increases communication skills, empathy, and development of positive peer attitudes and enables children to value differences.
• Tries to accommodate diverse needs ie. removing barriers and takes into account individual needs, costs, safety and impact on others.
• Inclusion requires all stakeholders - children with disabilities, parents, teachers, community, to be comfortable with diversity.
• Accessibility for children with disabilities, ranges from physical access to services and the build environment, to access civil and social participation.
• Accessibility to transport, mobility, communication, assistive devices and participation in educational settings are important to the children with disabilities for full participation in an inclusive environment.
Higher Education
Higher Education includes all types of studies, training, and research at the post-secondary level. Characteristics of Higher Education:
• Higher Education requires an individual’s initiative to pursue the same though individual responsibility is tempered by structural arrangements which are often inaccessible.
• It is possible if students with disabilities get inclusive qualitative education, peer support and guidance from teachers and parents.
• Higher education increases chances of employability for women with disabilities.
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Special Education
Special Education is the practice of educating students with disabilities in a way that addresses their individual differences and special needs. Children with severe multiple disabilities who have difficulty in coping with regular schools are referred to such special schools. Characteristics of Special Education are:
• Individually planned, specific design of curriculum and teaching procedures
• Adapted equipment and materials, and accessible settings.
• Student to teacher ratios are kept low, in order to provide individualized education, addressing specific needs.
• However, this special education often has been located in urban areas and thus isolated many girls with disabilities from their families if they are staying in residential special school. Today international human rights laws and internationally-agreed development goals reflect a strong preference for inclusive education.
Home Based Education
Home-Based Education is defined as the education of children with severe intellectual/physical disabilities, who can be educated in the combination of home-based and alternate educational settings to enable them to achieve independent living skills. Characteristics of Home-Based Education are:
• It is often aimed at school preparedness and preparation for life.
• Provide opportunities for learning of social skills, vocational skills and implementation of life skills.
Challenges
However, in India today, there are many challenges to education of girls with disabilities. And low or no education of girls can lead to exclusion and marginalisation in mainstream society.
Challenges to Education include:
• Lack of Schools that can ensure quality education for children with disabilities.
• Physical barriers such as inaccessible building, lack of ramps, narrow entrance, slippery roads, inaccessible roads, infrastructure, paths etc.
• Social barriers such as stigma, discrimination, isolation, prejudice, pity, ignorance from family, school, other students, teachers and society.
• Frequent absenteeism from school by girls with disabilities due to lack of toilet facilities, safety issues, menstrual management issues, lack of parental interest
• Inadequate teaching and learning resources
• Inaccessible teaching - when the way of teaching is not adapted to all the students or when a wide variety of needs is not taken into account;
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• Lack of training of teachers, academic staff, higher education teaching staff on inclusive education and disabilities
• Lack of support programmes or the inaccessibility of such programmes.
• Lack of awareness of Schemes and Policies including lack of assistive devices.
Advocacy: Our Role as Activists
Sensitise Parents, Teachers, School management committees on:
• Disability Issues
• Importance of education for girls with disabilities at school and village level
• Need to address barriers created by negative attitudes
• Need for a partnership between home, school and community
• On Schemes/facilities available for girls with disabilities to access education
• Contact NGOs, Government Hospitals for providing different assistive devices to assist girls with mobility, hearing and communication challenges, sight, writing and sitting challenges.
• Train Teachers on student-centred pedagogy, a flexible curriculum, a variety of teaching strategies and ongoing curriculum-based assessment.
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Rights, Laws and Schemes
International Treaties
2008UnitedNationsConventiononRightsofPersonswithDisability
Article24of the UN Convention on the Rights of Persons with Disabilities (CRPD) protects the right to education of persons with disabilities. It proclaims the right to inclusive education and prescribes the steps that have to be taken to this end.
It focuses on addressing and removing barriers, making reasonable accommodations and providing support.
Country Laws
• 1992- Rehabilitation council of India Act
• 1999: National Trust Act
• 2009: RTE
• 2016: Rights of Persons with Disabilities Act
• 2020: National Education Policy
Policies and Schemes
PromotingInclusiveEducation
• 1974: Integrated Education for Disabled Children (IEDC)
• 2001: Sarva Shiksha Abhiyan (SSA)
• 2005: National Curriculum Framework (NCF)
• 2009-10: Inclusive Education of the Disabled at the Secondary Stage (IEDSS)
• 2013: IEDSS included in Rashtriya Madhyamik Shiksha Abhiyan (RMSA)
• 2020: National Education Policy
PromotingHigherEducation
• National Overseas Scholarship
• Saksham Scholarship Scheme
• Rajiv Gandhi Fellowship Scheme
• UGC Guidelines
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Personal Reflection
• Whatchallengeshaveyoufacedwithregardstoyourown education?
• Howdidyouovercomethem?
• Whatweretheenablingfactorsinyourownjourney?
• Whatdoyouliketosaytoyourparentsorschoolorcommunity?
Quiz: Education
Choose the correct response.
2. Education is important for those Women with Disability
a. who have only a minor physical disability
b. who have visual or hearing impairment
c. all girls with disabilities, irrespective of the type or degree of impairment
d. who live in urban areas
3. Challenges faced by girls with disability are mainly around:
a. physical or environmental barriers
b. teaching learning methods
c. social barriers such as stigma, discrimination, isolation, prejudice
d. all of the above
4. The different types of education that can be accessed by girls with disability are:
a. Special Education, Inclusive Education, Home-Based, Higher Education
b. Special Education
c. Home Based Education
d. Primary Education
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5. Inclusive Education tries to
a. Accommodate diverse and individual needs
b. Remove barriers
c. Look at safety and impact on others
d. All of the above
6. As activists our role is to:
a. Teach girls with disability ourselves
b. Set up schools to provide services to girls
c. Raise Awareness on importance of education and facilities available for girls with disabilities to access education
d. None of the above
7. Article 24 of the UN CRPD
a. Is only focussed on education of boys with disability
b. Promotes the right to inclusive education and prescribes the steps that have to be taken to this end.
c. Promotes Home Based Education
d. Promotes Special Education
Stories to Talk About
Work in groups to identify what action we can take to help these young girls access education.
Nita’s Story
12-year-old Nita was born with a disability and uses a wheelchair for mobility. She wants to go to school like her siblings and friends. Her father refuses to allow her to go to school as he feels that she is disabled girl. Besides, the school is far from her home and the road to school is in bad condition. Nita needs help to attend the school and if she attends the school, she needs to get someone’s support to sit in the classroom as the school does not have ramps. The teacher in the school does not want her and ignored her.
• Nitareachesouttoyouforhelp.HowcanyouhelpNita?
• Whatattitudesneedtobeaddressed?
• WhatactionscanbetakentohelpNita?
• WhichschemescanhelpNita?
Lila’s Story
Lila is 18 and just completed her class 12 exams. Lila is hearing impaired. She aspires to study further. Her family feels it will be a waste of time and money. They would rather invest in her younger
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brother’s education. The neighbours also influence her parents, telling them that Lila should not be allowed out of the house anymore.
• Lilareachesouttoyouforhelp.HowcanyouhelpLila?
• Whatattitudesneedtobeaddressed?
• WhatactionscanbetakentohelpLila?
• WhichschemescanhelpLila?
Rama’s Story
10-year-old Rama goes to the local school in her area. She is not good at studies and is constantly being ridiculed by her teacher. Her family is tired of the complaints.
Rama’s mother shares with you that she feels perhaps Rama has a learning disability which is why she is not able to remember things like her classmates.
• HowcanyouhelpRamaandhermother?
Links
• http://www.nhfdc.nic.in/scholarship.html.
• https://www.ugc.ac.in/nfpwd/eligiblity.aspx
• https://www.ugc.ac.in/nfpwd/downloads/NF-PwD-%20GuidelinesRevised.pdf
• https://www.aicte-india.org/sites/default/files/Saksham.pdf
• https://enabled.in/wp/national-overseas-scholarship-for-studentswith-disabilities-2016-
17/#:~:text=Eligibility%3A%20Candidates%20with%2040%25%20a nd,annum%20are%20eligible%20to%20apply.
• https://www.ugc.ac.in/pdfnews/5471032_person-withdisabilities.pdf
• http://www.deoc.in/the-rights-of-persons-with-disabilitiesrpwdact/
• https://thenationaltrust.gov.in/upload/uploadfiles/files/National% 20Trust%20Act%20-%20Englsih.pdf
• https://www.mhrd.gov.in/iedss
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Notes
Health
Health is a state of total physical, mental and emotional well-being. Health is about keeping fit not just about managing illness or disease.
Physical Health: This refers to the state of our body, taking into account everything from the absence of disease to fitness level.
Physical health is critical for overall well-being, and can be affected by our lifestyle, diet, physical activity and our habits. Hereditary and Physiology; our environment and access to healthcare all affect our physical health.
Mental Health: This includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices.
Mental health is important at every stage of life, from childhood and adolescence through adulthood. Mental Health is influenced by biological factors, such as genes or brain chemistry; life experiences, such as trauma or abuse and family history of mental health problems.
Sexual and Reproductive Health: This is a human right for everyone. It is linked with a complete state of physical, mental and emotional wellbeing in matters related to the reproductive system. It means that
people are able to have a satisfying and safe sex life, the capability to reproduce, and the freedom to decide if, when, and how often to do so.
Adolescent Health: Adolescents in the age group 10-19 years comprise of individuals who are growing and require nutrition, education, counselling and guidance to ensure their development into healthy adults. They are at risk of early & unintended pregnancy, unsafe sex leading to STI/HIV/AIDS, malnutrition, anaemia, obesity, drug abuse, mental health concerns and violence. Investments in adolescent reproductive and sexual health help in delaying age at marriage, reducing teenage pregnancy, maternal mortality and STI/HIV prevalence.
Neonatal Health: Over 60% of Infant Mortality Cases are caused by Neonatal Mortality. New-born care services at health facilities are important ways to manage this risk.
Challenges
• Lack of information about availability of services
• Available information is inaccessible
• Poverty and unemployment burden on the additional cost of healthcare
• Neglect and often reluctant attitudes of the family members
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• Healthcare centres located at a distance from their place of residence.
• Inaccessible transportation system and high cost of transportation
• Negative attitude and general ignorance about disability of the healthcare staff
• Communication barriers between healthcare staff and persons with disabilities especially those with speech and hearing impairments, intellectual and psycho-social disabilities
• Inaccessible built-in environments and equipment alienate persons with disabilities from the healthcare system
• They experience discrimination in disability related health-care services in the national health-care schemes.
• Access to sexual and reproductive health services is even more limited.
• There is a lack of gender-sensitive programmes on sexual and reproductive health and rights for women and girls with disabilities
• On the contrary they often face forced sterilization and hysterectomies because of the popular belief that this will save them from unwanted pregnancies.
• Families and guardians also go for hysterectomies to avoid the trouble during menstruation. This is more common in case of women with intellectual disabilities.
Advocacy: Our Role as Activists
• Creating awareness about existing health schemes
• Information about all health-related matters to be available in accessible formats
• Identifying key stakeholders in the healthcare sector
• Ensure that hospitals, primary healthcare centres, diagnostic centres etc. to be made accessible for different type of disabilities
• Formulating advocacy strategies for different sectors - Panchayat, Anganwadi workers, primary healthcare centres, district hospitals
• Advocacy with the Medical council of India to include a compulsory paper on disability in the MBBS and nursing courses
• Orientation on disability for para medical staff on different types of disabilities and disability etiquette.
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Rights, Laws and Schemes
International Treaties
2008:UnitedNationsConventiononRightsofPersonswithDisability
Article2
States Parties recognise that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability. Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability.
States Parties shall take all appropriate measures to ensure access for persons with disabilities to health services that are gendersensitive, including health-related rehabilitation.
Country Laws
• 1999: National Trust Act
• 2016: Rights of Persons with Disabilities Act
• 2017: The Mental Healthcare Act
Policies and Schemes
PromotingReproductive,Maternal,NeonatalandChild,Adolescent HealthProgramme
• 2011: Janani Shishu Suraksha Karyakram (JSSK)
• 2011: Facility Based New Born & Child Care
• 2011: Menstrual Hygiene for Adolescent Girls Scheme
• 2014: Rashtriya Kishor Swasthya Karyakram (RKSK)
Personal Reflection
• Whatchallengeshaveyoufacedwithregardstoyourownhealth issues?
• Howdidyouovercomethem?
• Whatweretheenablingfactorsinyourownjourney?
• Whatdoyouliketosaytoyourfamily,communityorhealthservice providers?
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Quiz: Health
Choose the correct responses.
1. Health for Women with Disability refers to:
a. managing illnesses
b. managing impairment issues
c. total physical & mental well-being; keeping fit along with managing disease
d. physical health
2. Challenges faced by girls and women with disability are mainly around:
a. accessing health services
b. discrimination in national health-care schemes
c. forced sterilisations and hysterectomies
d. all of the above
3. Adolescent Health covers issues ranging from:
a. Early pregnancy, Safe Sex, STI/HIV/AIDS
b. Malnutrition, anaemia, obesity
c. Drug abuse, mental health concerns and violence
d. Diabetes and Cancer
4. Sexual and Reproductive Health
a. is not relevant for women with disabilities
b. refers to the importance of sterilisations
c. refers to Safe Sex and the rights related to if, when, and how often to do so
d. is a human right applicable to every human being
5. As activists our role is to:
a. Raise Awareness on Health Issues
b. Set up health services to provide services to women
c. Formulate Strategies for different stakeholders
d. Ensure Implementation of Schemes
6. Article 25 of the UN CRPD
a. Is only focussed on promoting highest standards of health for people with disabilities
b. Ensure there is no discrimination or denial of health services
c. Is only focussed on mental health
d. Is only focussed on adolescent health
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Stories to Talk About
Work in groups to identify what action we can take to help these women.
Shila’s Story
28-year-old Shila, stays in a city government shelter. The shelter houses women with disability in the 18 to 40 year age group. You learn that a decision to conduct irreversible surgeries has been taken by the authorities. Most women’s guardians have consented to the procedure. Shila’s sister is confused and reaches out to you for help. How can you help?
• Areanyrightsbeingviolated?Ifyes,whichrights?
• Whatattitudesneedtobeaddressed?
• WhatactionscanbetakentohelpShilaandhercolleagues?
• WhichschemescanhelpShila?
Sima’s Story
Sima, 22 years old, has an intellectual disability. Radha, 25 years old, has a physical disability. Both have been subjected to forced sterilizations.
• Areanyrightsbeingviolated?Ifyes,whichrights?
• Whatattitudesneedtobeaddressed?
• Whatactionscanbetakentopreventsuchsituationsinthefuture?
Bithi’s story
Bithi is a 20-year-old girl with cerebral palsy. She uses a wheelchair and uncoordinated movements (body jerks) Her speech is also slurred. She is in her final year of college. Her mother accompanied her to get her disability certificate from a government hospital. The panel of 3 doctors without wanting to know further information about her impairments certified her as having 95% “mental retardation”. When she and her mother protested, one of the doctors refuted that they were the “experts” hence no one should challenge their diagnosis.
Rai’s Story
Rai is a 35-year-old woman with physical disability. She has difficulties in walking and uses a wheelchair. She has been married to Soumen (also a wheelchair user) for 5 years. Rai’s family members find out that she is 18 weeks pregnant and insist that Rai undergoes an abortion as they feel Rai is likely to have difficulties carrying the child due to her physical disabilities. They also blame Soumen for making her pregnant. The couple however is keen to have their child.
• IsRai’sfamilylogicalintheirdemandtoabortthechild?
• DoyouthinkRai’shumanrightsarebeingviolatedhere?
• Whatwouldbeyouradvicetothecouple?
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Notes
Links & References
• National Health Mission: Adolescent Health (RKSK)
• 15 Healthcare schemes in India that you must know about
• MOHFW Schemes: UPSC (IAS) Prelims 2020: Ministry-Wise Important Government Schemes (Ministry of Health & Family Welfare)
• Forced Sterilisation: Girls With Disabilities in India Face Forced Sterilisation
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Livelihood
Livelihood is the source of income that gives one the money to buy things for daily living or securing the basic necessities of life - food, water, shelter & clothing.
Livelihood is defined as a set of activities essential to everyday life that are conducted over one's life span. Such activities could include securing water, food, fodder, medicine, shelter, clothing and few other things that are part of daily life. As it is required for one’s entire life it has to be continuous & sustainable which means a continuous flow of income and available for the entire period till the person is physically able to do that.
Sustainability in livelihood is the most important aspect. And a livelihood is sustainable when it can cope with various situations and continue to maintain or enhance the living of the person along with accumulation and creation of some assets both for now and for future so that when a person is not able to work still can survive.
Challenges
Livelihoods, for the urban and rural poor, is a challenge. Poor people lack adequate money, education, vocational and technical skills. For the people living in rural, remote and hilly terrain there are additional challenges. All these become manifold challenges for women with disabilities. WWDs face much greater difficulties than their male counterparts or than non-disabled women in earning a living.
Challenges are at various levels: political and administrative, social and at the workplace.
Discriminatory and Paternalistic attitude of society: WWDs are often treated as “good for nothing” or “not capable of earning an income” as if their disability affects all their other abilities.
Discrimination within the family and in the education system. Often, they have low or no education.
Employers also discriminate and have doubts about their capacities. Young WWDs are mostly unable to access various training opportunities and are extremely under-represented in vocational trainings run by Government or private institutions. They have limited access to professional and market-oriented employment.
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WWDs have low self-reliance. They lack confidence and personality and this affects their chances at employment1.
Physical barriers to reaching the workplace from home and lack of easy access within the workplace both create challenges to WWDs opportunities for employment.
Abuse and violence on WWDs at the workplace is double that of their non-disabled women counterparts. Unfortunately, the Prevention of Sexual Harassment at the Workplace Act has no specific provisions for WWDs by which they can seek redress under the law.
Vulnerable to violence at home, community and at the workplace WWDs find it difficult to have a decent livelihood and live a life with respect and dignity.
At a larger level, there is an absence of representation of Women with Disabilities in decision making positions.
In the Government Sector:
The reservation in RPWD Act 2016 is not gender balanced. It just says reservation for PWDs and does not state reservation for women within that or outside of that.
On the other hand, the Women specific Laws / Acts are also flat - do not specify reservation for “most vulnerable / marginalized groups” among women. Therefore, WWDs do not get any benefit per say from these Acts / Laws
1 Mehrotra Amitabh, Disability and Livelihood, SPARC-India, Lucknow
There are no provisions for reasonable accommodation in most employment /livelihood programme guidelines including MNREGA.
VRCs (Vocational Rehabilitation Centre) designed specifically for PWDs do not have specific arrangements for safety & protection of WWDs which demotivates them for joining the training courses
There is limited access to Financial and other Support. There is no available data on the number of WWDs who have received funding, bank loans, business products or other benefits meant to support Self Employment of persons with disabilities.
In the Private Sector:
There is non-implementation of affirmative action programmes and this creates serious impacts on employment opportunities of WWDs
There is no data available about employment rates of PWDs or WWDs in private establishments and the levels at which they are employed.
There are no specific Disability Employment Policies in place in business houses that do employ PWD.
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Rights, Laws and Schemes
International Treaties
ConventiononRightsofPeoplewithDisability
Article27
States Parties recognise the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities and that States Parties shall safeguard and promote the realisation of the right to work, including for those who acquire a disability during the course of employment.
The right to work on an equal basis with others thus requires the provision of reasonable accommodation and accessibility. The work environment should also be open and inclusive.
Country Laws
RightsofPersonswithDisabilityAct2016
• Reservation in public sector jobs; Denial of Promotions prohibited
• 4% reservation for persons with benchmark disabilities in Government Establishments
• 5% of the workforce in the private sector to consist of persons with disabilities
• Section 19: Vocational Training and Self-Employment
• Loans at concessional rates to facilitate and support employment of persons.
• Section 37: Setting up of Special Employment Exchanges
Other laws in relation to work/employment/livelihood of non-disabled people should be equally applicable to any PWDs/WWDs.
• Combating Abuse /Sexual violence on WWDs at Workplace –Safety & Protection laws
• Sexual Harassment of Women at Workplace (POSH) Act, 2013
• Protection of Women from Domestic Violence (PWDVA) Act, 2005
• National Commission of Women (NCW) and State Commissions of Women (SCW)
Schemes
All Poverty Alleviation schemes & policies must equally be applicable for WWDs/PWDs rather any such policy shall ensure that it is inclusive of all categories of PWDs/ WWDs as per RPWD Act 2016
• Provision for Short Stay Homes or Hostels for Women with disability under RPWD Act 2016
• Right to Food through Livelihood to rural population
• Mahatma Gandhi National Rural Employment Guarantee Act
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Loan Schemes
• Mudra Loan Scheme
• National Handicapped Finance Development Corporation
Incentive Schemes
• Uddyam Prabha by National Trust
Vocational Training
• Vocational Rehabilitation Centres for Handicapped by Ministry of Labour and Employment
• Employment Exchanges
• Courses offered by National Institutes of Department of Empowerment of Persons with Disabilities and affiliate organisations
• ITIs: 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 Development
• National Urban Livelihood Mission of Ministry of Urban Development.
Advocacy: Our Role as Activists
Census of India 2011 data shows that among all women, only 1.8% of women with disabilities are in any kind of work. This indicates that a large number of women with disabilities are out of employment or livelihood opportunities. There are many gaps that need to be addressed.
As activists our role includes:
• Demanding, Collecting, Analyzing specific data on WWD and Employment for appropriate policy framing.
• Collection of gender disaggregated data on Skill Development to review the 30% reservation policy in the Skill Council for Persons with Disabilities. This is necessary to understand the status of development of market-oriented skills which are required for any form of employment.
• Collection of disaggregated data on Employment under the reserved posts for PWDs including the number of women with disabilities who got employed through special employment exchanges across the country.
• Collection of desegregated data on WWDs who have worked or are working or having a job card with the MNREGA, the largest livelihood program run across the country.
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• Review of any data that throws light on the economic status of WWDs. This includes annual reports of the relevant ministries, reports on economic status, opportunities and number of WWDs in the organized /unorganized sectors.
• Advocating for the major issues that determine effective employment /livelihood. Unless these are done all the efforts will remain ineffective. These are:
• Barrier free infrastructure
• Accessible transportation
• Reasonable accommodation at the workplace
• Violence Free Workplace: Safety and Protection at Workplace since sexual abuse & violence at the workplace often force WWDs to withdraw from work.
• Tracking and demanding implementation of progressive provisions made in Plans, Policies and Campaigns initiated by the Government.
• The Twelfth Plan of India (2012 – 2017) focuses to engender all programmes aimed at PWDs. The Steering Committee on Women’s Agency and Child Rights emphasized on:
• Training of school teachers and Anganwadi Workers (AWWs)
• Vocational Training and assured employment for WWDs
• Special rehabilitation services along with care provisions.
• Appropriate work and separate calculation of equal wage rate for rural women with special needs, who seek work under MGNREGA
• Specific health focus for WWDs through provision of a special health care card to facilitate regular medical check-ups under RSBY and 100% subsidy under Total Sanitation Campaign (TSC) for construction of accessible toilets in households, where there are women living with disability.
Personal Reflection
• Whatchallengeshaveyoufacedwithregardstoyourowntraining andlivelihoodissues?
• Howdidyouovercomethem?
• Whatweretheenablingfactorsinyourownjourney?
• Whatdoyouliketosaytoyourfamily,communityorhealthservice providers?
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Quiz: Livelihood
Choose the correct responses.
1. Finding Livelihood is most challenging for:
a. People in urban areas
b. People in hilly and remote areas
c. People living in rural areas
d. Women with Disability living in any of the above areas
2. Livelihood is important for those Women with Disability
a. who have only a minor physical disability
b. who have visual or hearing impairment
c. all girls with disabilities, irrespective of the type or degree of impairment
d. who have psychosocial disabilities
3. Challenges faced by Women with Disability around livelihood are mainly around:
a. being unable to access training opportunities
b. physical or environmental barriers
c. discrimination by employers who doubt capacity
d. abuse and violence on WWDs at the workplace
4. As activists our role is to advocate for:
a. barrier free infrastructure and accessible transportation
b. collection of disaggregated data on WWD and Employment
c. violence free workplace
d. high paying IT jobs for WWDs
5. Government’s Twelfth Plan of India, Steering Committee on Women’s Agency and Child Rights emphasized on:
a. Training of school teachers and Anganwadi Workers (AWWs)
b. Vocational Training and assured employment for WWDs
c. Special rehabilitation services along with care provisions.
d. Appropriate work and separate calculation of equal wage rate for rural women with special needs, who seek work under MGNREGA
6. Article 27 of the UN CRPD recognizes:
a. The right of persons with disabilities to work, on an equal basis with others
b. the need for reasonable accommodation at the workplace
c. The need for the work environment to be open and inclusive.
d. The need to promote free vocational training for WWDs in all Training Centres.
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Stories to Talk About
Work in groups to identify what action we can take to help these women.
Rama’s Story
25-year-old Rama, applied for a government job for which she was well qualified. She cleared the written tests. At the interview the management expressed concern about her being able to physically negotiate the steps to the first-floor wing of the office as she was a wheelchair user. Rama requested if she could be placed in the ground floor section of the office. The Management said they could not make special provisions for her and she did not get the job.
• WhatcanRamado?
• Areanyrightsbeingviolated?Ifyes,whichrights?
• Whatattitudesneedtobeaddressed?
Divya’s Story
Divya suddenly stopped wanting to go to work. When her family asked why, she was quiet. Later she confided in you that her male colleague was sexually harassing her and she was scared and ashamed.
• WhatcanDivyado?
• Areanyrightsbeingviolated?Ifyes,whichrights?
• Whatactionscanbetakentopreventsuchsituationsinthefuture?
Pia’s Story
A vocational training centre was set up for girls with disability at the town centre. Pia and the other girls with mobility issues were struggling as the bus would drop them half a kilometre away from the centre. Most girls gave up after attempting the first few classes. Pia decided to go every alternate day as she could not manage the strain daily. The Head of the Vocational Training Centre reported that girls were frequently absent and insincere.
• WhatcouldPiaandherfriendsdo?
• Areanyrightsbeingviolated?Ifyes,whichrights?
• Howcouldthissituationbeaddressed?
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Links & References
• Employment Rights of Disabled Women in India, A Study of Compliance and Impact of the Persons with Disabilities Act with Special Reference to UP, Rajasthan, Bihar, Maharashtra and Tamil Nadu. Sponsored by National Commission for Women, Government of India, submitted by Society for Disability and Rehabilitation Studies, New Delhi
• Equity to women with disabilities in India, A study in Odisha finds that disabled women are further marginalised from livelihoods opportunities due to gender discrimination. UNDP Government of India. Rao, Indumathi (n.d.),
• Disability and Livelihood, Mehrotra Amitabh, SPARC-India, Lucknow
• The Right to Decent Work of Persons with Disability O’Reilly, A. (2007): The right to decent work of persons with disabilities (ILO, Geneva) in National Consultation on Disability and Livelihood –Challenges and Response, Mr. Samir Ghosh, Shodhana Consultancy, Pune.
• Women with Disabilities in India Network, October, (2012), Chapter - Work and Employment (CEDAW Article 11 and CRPD Article 27, pg – 5/121)
• Women with Disabilities India Network 2014 n 15
• Planning Commission (2008), Employment of Persons with Disabilities in Public Sectors in India Emerging Issues and
• Trends; An Evaluation Study with Special Reference to Persons with Disabilities Act (1995)
Notes
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