Voices of Older People on their Rights to Autonomy and Independence

‘Nobody likes to live a life depending on others. People should have freedom to live their life according to their wishes’, voiced a 68-year-old woman from Nepal.

People of all ages have equal rights to make choices and decisions as well as to perform actions of daily living and participate in society according to one’s will and preferences. Because of the long tradition of ageism in many parts of the world, people are generally denied from enjoying their rights to autonomy and independence when they get older.  90% of older people expressed autonomy and independence in everyday activities and participation in society is very important for them. It gave them independence, dignity, confident and self-respect. However, 36% said they had limited or no freedom to do this.

These were the findings of a consultation with 1063 older people, approximately 100 older people in 10 countries of Asia and Africa, conducted by 10 member organisations of the Global Alliance for the Rights of Older People at the end of 2018 for a new report ‘Our Voices, Our Rights – What older people say about the normative elements of their right to autonomy and independence’.

Older people value their rights to independency and autonomy

An octogenarian older woman from Tanzania said ‘important things for me cannot be decided by another person because what is important to me may not be important to him or her’.

The majority of older people highly valued the normative elements of their rights to autonomy and independence like: where and with whom to live, making decision what matters in life, participation in society, care and support and palliative care.

In many societies, older people are even restricted in making decisions about where and with whom to live though 85% older people thought this is very important to ensure a high quality and dignified life. Stressing the importance of taking a decision about where and with whom to live, a 67 years old man from India said ‘Otherwise, it would be like being a caged bird or animal.’  More than half of the older people interviewed lived with multiple family members.

Nearly half of the respondents had a disability and around 80% of older people above 80 were disabled. The majority of older people were unaware about the concept of palliative care. Older people need to make difficult decisions about their care and support. Hence, they may require the support of their family/ relatives in their decision-making.  Many older people did not have a trusted person to support them in making decisions about their care and support. They said they would like to have access to more information about their options for care and support services. If they have the right to decide about palliative care, ‘it equalises us with the other cohorts of age groups’, a 78 year old man from Kenya said.

Official recognition of their rights to independency and autonomy

The number of participants in these consultations was limited cannot be seen as representative of all older people. But the report clearly presents the need for official recognition of older people’s rights. ‘Many older people have not got freedom’ and are ‘dominated by family, society and community’. The vast majority of older people said it was very important or important that their government or the United Nations officially recognize their rights to autonomy and independence. Recognition meant they could ‘legally claim their right to palliative care’ and ‘enjoy their freedom to make decisions’ and ‘not depend on others’ to make decision for them. It was found that men value their autonomy and independence more highly than women.

Older people have the right to personal autonomy to make decisions, to determine their life plans, and to lead autonomous and independent lives in line with their will and preferences on an equal basis with others. The right to autonomy and independence in older age is not clearly articulated in international human rights law. Their rights should include a guarantee that older people are never denied their status as a rights holder. This must be included in a new international legal framework to ensure that the right of older people to autonomy and independence in all aspects of life is guaranteed.  ‘This recognition by both the government and the United Nations will help to extend the right to autonomy to all older people at all levels, even at village level’ expressed a 60-year-old man from Tanzania.

Sanju Thapa Magar, CEO, Ageing Nepal

Prapti Gautam, Public Health Officer, Ageing Nepal