Consensus Paper

Right to Privacy

[The manner in which the right to privacy has been recognized in Indian legislations and case law shall be drawn upon to convert the following aspirations into law. The jurisprudence developed by other countries will also be consulted]

Provisions for New Law

• Privacy and having a boundary is central to anyone's experience of personhood. Not having an assurance of privacy leads to loss of dignity, shaming, and disrespect.
• Reasonable accommodation and necessary support must factor in personalized needs for privacy. The balance between disclosure and privacy is a matter to be decided by PWD if necessary with support group, including family.
• Protection of privacy in personal hygiene and self care within the home environment is a must.
• Privacy needs must be addressed by balancing need for being alone, and need for being supported. Neglect on the one hand must be balanced by overprotection on the other hand.
• Sexual identity and needs of PWDs also brings up issues of privacy (e.g. case study of woman with disability put into a room with lots of male cousins).
• Media, courts, printed and electronic channels, movies, medical and other kinds of health services must assure privacy. Use of private information in media, courts and medical services must be regulated. (Case study of woman with mental illness whose privacy was invaded for weeks by a local newspaper in Maharashtra.)
• Medical services must assure privacy in routine delivery of health and mental health care. Often only families are consulted, not PWD.
• Privacy in situations of medical emergencies must be assured.
• Ministry website having names and other details of PWDs must be edited out.
• There must be a mechanism that should look at whether reasonable accommodation is being monitored. (The sub-group needs to clarify what is meant by this bullet point?)

Freedom of Speech expression and Information

Provisions for New Law

[The definition of communication in the definitions clause will have special significance for this right. The existing Indian jurisprudence on the right to freedom of speech and expression as also the contemporary importance accorded to the right to information will be drawn upon to convert the following bullet points into legal text. Once again the legal text would prohibit discrimination on grounds of disability as well as require performance of positive obligations]

• The concept of 'communication' must be looked at more broadly, as helping people connect with each other in a meaningful and empathetic way. (The Committee may wish to examine whether they wish to alter the definition of communication in order to incorporate this aspiration of the sub-group)
• Communication should be across domains, cultures, linguistic backgrounds, individualised forms of expression, non verbal communication, metaphorical communication, etc.
• Freedom of expression creates an atmosphere of support and care for the larger community. It helps in creating tolerant, adaptive and caring cultures. It creates safe emotional environments.
• The PWD should have the freedom to express oneself in any way they choose to.
• All modes and forms of expression of PWDs to be accepted / recognized.
• The views and opinions of PWDs expressed should be accepted and not be judged or criticised. Validation and affirmation of what PWDs express, and the right to be listened to, should be provided for.
• Language as a system of communication is based on cognitive ability. Social and Emotional communication (e.g. receiving or giving a hug) is also to be developed to foster interdependence.
• Personal assistance and supports to be provided for expressing oneself.
• Freedom of expression must be established in medical contexts, without it being considered as a further symptom of disability.

Programs (Mandatory)

• We must be enabled to talk about the right to "emotionally safe" environments and the access to that. What would be 'emotionally safe communication', which will break barriers between people to connect? Programs on assertive communication, creative communication, non violent communication, holding dialogues and trialogues, etc. can be fostered by the Act.

Right to Live Independently and in the Community

[This right has primarily been visualized in programmatic terms. The Committee may wish to examine the interplay between this right and the laws permitting institutionalization of persons with disabilities]

Provisions for New Law

• People with disability have a right to choose their place of residence and not be obliged to live in a particular living arrangement.
• A National Institute of assisted and independent living shall be established under the New Act which will be guide by the basic principles of the New Act and the vision of Assisted And supported living as envisaged by people with disability themselves [ This suggestion has not been discussed. It will need to be considered by the Committee whilst deliberating on the effectiveness of the Disability Rights Authority ]

Programs (Mandatory)

• Support services to enable people with disability to live in their natural surroundings must be made available and it also must be ensured that these services are available at a low cost to people with disability in difficult circumstances.
• State shall provide dignified living options to people with disability who are homeless, abandoned and with multiple vulnerabilities. These options will be community based and shall ensure quality services.
• Community mechanisms for inclusion must be laid out, including peer support systems, local healing services, community networks, centres for making first contact, multipurpose workers who can provide first level counselling and immediately needed services at a single point, etc.