Consensus Paper

Right to Life

Provisions in New Law

• Every human being has the inherent right to life and should be provided with all needs and supports so that he / she is able to live and have a good quality of life.
• Basic needs are not only physical and material needs, but also basic human intellectual (knowledge) and emotional needs. Quashing PDs' emotional life, dreams, desires and aspirations should also be treated as neglect of basic psychosocial and interdependence needs. [The first two bullet points will be reworked relying on the Article 21 jurisprudence created by the Indian Supreme Court to formulate the right to life for persons with disabilities in the new law ]
• The new Act should criminalise the actions that amount to exclusion and neglect of basic needs and inappropriate societal practices by person or persons / family members / organisational / institutional managers (private and public) leading to aggravating the disability, diminishment of quality of life or to death. The new Act should impose penalties on the abetment of deeds leading to barriers being created for PDs. [A connection would be forged between this aspiration and the penalties and offences chapter of the New Law]
• The new Act must provide for all basic aspects of sustaining life and quality of life, on equal basis with others, such as food and balanced nutrition, clean water, fuel, housing, environmental health & hygiene, livelihood and social security. [ This bullet point and all the sub points will be used to make the positive obligation under the new law]
  1. All spaces offering services of any sort for persons with disabilities including residential care, health care, rehabilitation services, allied peripheral health, legal and other services must be conducive to enhance the quality of life of PDs on equal basis with others. Inclusivity should be a principle here, not 'special'. Such spaces must clearly provide information on the rights of PWDs who it is serving.
  2. The services must study and develop its own value base and 'good practices' in order to standardize the delivery of care.
  3. Continuing assessments of services, PD partnership in service evaluation, etc. must be encouraged by the Act.
  4. The Act must create some funds for the standardisation of ground level service delivery practices, their value base, delivery mechanisms, good practices and effectiveness.
• The New Act should pronounce on the right to life of people living in institutions, and those PDs who are homeless or abandoned by family members. [will be incorporated in the new law as positive obligation on appropriate governments for vulnerable groups]

Changes in Other Laws

MTP Act - The subgroup discussed whether the right of the mother or right of the foetus should be protected. While making the new Act, the PNDT Act and the MTP need to be referred to. We are referring to these for protecting the rights of the person with disability. MTP should not be done on the basis of disability. Appropriate changes in MTP and PNDT should be brought about. Information to pregnant women, to adolescent girls, nutritional programs, etc. [This issue was discussed as one of the slippery slopes of the right to life. The sub-group did not take a position one way or the other but noted the fact that the IDC in the Ad Hoc Committee discussing the right to life just stressed on the value of a disabled life and skirted clear of this issue as it did not want the rights of persons with disabilities to be caught in the cross-fire between pro-life and pro-choice groups]

Programs (Mandatory)

Imaginative programs can be considered: Personalized care giver at home; volunteer base for home visits; people with empathetic listening skills; group living programs; peer support and networks; etc.

Situations of Risk and Humanitarian Emergencies

The following points formulated by the CPR sub-group shall be utilized to formulate the entitlements of persons with disabilities in the new law

Provisions for new law

• Persons with disabilities, including women and children with disabilities, have to be identified as a group by all agencies concerned with situations of risk and humanitarian emergencies.
• Rights of persons with disabilities will need to be recognized and ensured in risk prevention and mitigation as well as disaster preparedness, relief and reconstruction programs and policies.
• Specific evacuation methodology for PD during fire or earthquakes (lifts not possible), floods etc. to be developed - mock drills to be conducted for the same in public places / care centres for PD for both regularly deployed rescue personnel as well as citizens.
• Procedures need to be developed to consult local organizations of persons with disabilities, and of parents of children with disabilities, together with NGOs working in the field of disability, by all concerned agencies. People with disability must be involved in planning and execution of services at times of risk and emergencies People with disability must also be involved in teaching and training courses for risk and emergency situations.
• So the National Disaster Agency and other concerned organizations will be required to review all its policies and procedures to ensure that persons with disabilities rights are addressed in interventions in situations of risk and humanitarian emergencies, within a period of one year after the law comes into force.
• Medical doctors must not collude with the state or other forces or contribute to depriving emergency care to sections of people. This will tantamount to neglect, and if combined with narcoanalysis, and other such barbaric methods of truth telling, to torture.
• Guidelines need to include provisions for identification of persons with disabilities in a population for registration to ensure support is provided where needed. Specific support must be ensured for people with disability who are home-bound.

Changes in Other Laws

• So the National Disaster Agency and other concerned organizations will be required to review all its policies and procedures to ensure that persons with disabilities rights are addressed in interventions in situations of risk and humanitarian emergencies, within a period of one year after the law comes into force.

Programs (Mandatory)

• Counselling services, psychotherapies, trauma reduction programs are a must in emergency situations. Cadres of people must be trained in targeted trauma reduction techniques, such as somatic healing. Guidelines must be provided so that people are not re -traumatised through services given.