A few of disabled persons were asked what Independent Living meant to them and these were the varied responses received:

• Independence to some meant a wheelchair to move around with ease and dignity as the respondents were forced to drag themselves on the ground to get around;
• Some said it meant the ability to communicate easily through sign language or communication boards;
• Responses also included a gainful employment that would ensure that the disabled person could gain status within his/her family as those who are unable to provide for themselves or their family were viewed as a burden;
• Asha [name changed] has bowel control problem and cannot leave or move out to work or participate in any social events since 30 years. Independence to her meant just being able to get out of the house.

There can be numerable such examples cutting across class, religion and different kinds of disabilities. However, the crux of the issue as each example highlights that the disabled person is denied choice, control, freedom, and equality.

Independent Living is succinctly defined by Dr. Adolf Ratzka

“Independent Living does not mean that we want to do everything by ourselves, do not need anybody or like to live in isolation. Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and sisters, neighbours and friends take for granted. We want to grow up in our families, go to the neighbourhood school, use the same bus as our neighbours, and work in jobs that are in line with our education and interests, and raise families of our own. We are profoundly ordinary people sharing the same need to feel included, recognized and loved.”

To summarise, “Independent living is what non-disabled people take for granted: living your own life, deciding what you want to do and making it happen”i. The philosophy behind Independent Living, is primarily to recognise disabled people as citizens first and only then as passive receivers of healthcare, rehabilitation or social services. The removal of infrastructural, institutional and attitudinal barriers and the adoption of the Universal Design principle are the pillars on which this philosophy rests.

Background

Historically, disabled people have been depicted as victims of circumstance, deserving of pity. Disabled people are seen as victims who need care and as persons not capable of looking after themselves or managing their own affairs, hence needing charity to survive. From tragedy and pity stems a culture of ‘care’. Although highly praiseworthy in many respects, it carries certain dangers as medically classifying, segregating and often institutionalising many disabled people. “The problem is that medical people tend to see all difficulties solely from the perspective of proposed treatments for a ‘patient’, without recognising that the individual has to weigh up whether this treatment fits into the overall economy of life. In the past especially, doctors have been too willing to suggest medical treatment and hospitalisation, even when this would not necessarily improve the quality of life for the person concerned. Indeed, questions about the quality of life have sometimes been portrayed as something of an intrusion upon the purely medical equation”ii.

A Brief History of Independent Living

The history of the independent living movement can be linked to the civil rights movement of the 1960s and the fight for the economic, social and political rights of black people spearheaded by Martin Luther King. A major part of these activities involved the formation of community-based groups of people with different types of disabilities who worked together to identify barriers and gaps in service delivery. The independent living movement, also in many ways, reflects Rawls’ idea of ‘. . . all citizens are to have an equal right to take part in, and to determine the outcome of, the constitutional process that establishes the laws with which they are expected to comply.’iii

It was from this understanding rooted in the civil rights agitation, that the first Centre for Independent Living (CIL) was born with an aim to address barriers, to develop action plans, to educate the community and to influence policy makers at all levels to change regulations and to introduce barrier-removing legislation; founded on three basic principles:

the best persons to understand the needs of disabled people and how to meet those needs are disabled people themselves।
Comprehensive programmes that provide a variety of services can effectively meet the needs of disabled people
that disabled people have the right to participate fully in societyiv
These principles continue to influence the philosophy and workings of CILs all over the world.

Challenges

As a philosophy, Independent Living is both inspiring and powerful. However, the main problem with services is that far from freeing people, they actually entrap them. Some of the threats and challenges to Independent Living is that most Independent Living Centres all over the world are run by non-disabled persons as rehabilitation and corrective centres rather than providing disabled persons with choice, control, freedom, and equality. There is a lack of trained care givers as in the case of Asha who is incarcerated due to lack of infrastructural facilities and right policies. There is a general political apathy as disabled persons are not considered a “vote bank”.

The understanding of Independent Living should be that of enabling a holistic and meaningful life of equal opportunity and not just an existence in one’s own home. A service provider’s understanding is often based on an approach which is about hands on, getting up and going to bed, and these kinds of tasks which disabled people would some times refer to as the ‘bed and breakfast syndrome’. In other words, basic survival not ‘quality of life’.

Convention on the Rights of Persons with Disabilitiesv & Independent Living

Asha faces barriers that needed to be overcome, particularly the lack of attendant services and medical professionals who rarely make efforts to try to come up with workable solutions to enable Asha and many others like her to live more independently and on their own terms. Now as things are, she can only imagine what it would be like to live with privacy and independence, however there is still hope, as people with similar disabilities are living successfully in the community.

Asha need not despair, India has recently ratified the UN Convention on the Rights of Disabled Persons [UNCRPD]. Soon the disabilities law in India would ensure an environment conducive to Independent Living!!

The drafters of the UNCRPD included persons with disabilities. The participation of disabled persons has added first hand experience and knowledge and helped to address variegated issues arising out of disability to which Governments had limited exposure and little or no experience. The Convention exemplifies the phrase, “Nothing about us, without us” .

Article 19 of the Convention on living independently and being included in the community “recognises the equal right of all persons with disabilities to live in the community, with choices to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement. “Persons with disabilities are entitled to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community;”

The other Articles of the UNCRD complement and enhance the experience of living independently and each article is interdependent and closely connected. Article 09 on Accessibility, Article 10 on the Right to life, Article 11 on situations of risk and humanitarian emergencies, Article 12 on equal recognition before the law, Article 17 on protecting the integrity of the person, Article 21 on freedom of expression and opinion, and access to information, Article 20 on Personal mobility, Article 22 on the Respect for privacy, Article 23 on Respect for home and the family, Article 25 on Health, Article 26 on Habilitation and rehabilitation, so on and so forth. Article 28 speaks of an adequate standard of living and social protection and Article 30 covers the much needed participation in cultural life, recreation, leisure and sport.

There can be no Independent Living without Human rights and there can be no Human Rights without Independent Living; UNCRP recognises that independent living encompasses economic, social and cultural rights as well as civil and political rights. Therefore Independent living is ‘a means to an end’, a way to access human and civil rights for disabled persons. The failure to understand the interlink between various human rights has an adverse impact on independent living. For example, the right to vote has no meaning if the polling booths are inaccessible.

Independent living is a specific right: The Tenerife Declaration, states ‘Independent Living is a fundamental Human Right for all disabled people regardless of the nature and extent of their impairment’. A specific right to independent living is required because while disabled people are entitled to the same human rights as non-disabled people they cannot benefit from such rights, unless additional requirements (arising from the impairment or from disabling attitudes and/or the environment) are met:. The phrase ‘effective enjoyment’ in Article 10, is similarly reflected to promote and to ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities.

Article 32 on International Cooperation of the Convention also states that ALL development programmes should be inclusive and accessible to persons with disabilities. “Within economic capacities” would no longer be used as an excuse to justify not taking into account the needs of disabled persons.

Another vital component of the Convention is the concept of full legal capacity of persons {Article 12} endorsed and assimilated with disability across various issues within the Convention having greatest influence on Article 19. The recognition of full Legal Capacity of a disabled person on equal basis as a non-disabled person ensures that disabled persons enjoy life on par with others.

Policy level requisites for Independent Living In India

In India, Independent Living is covered under Chapter 3 of the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 (NTA) whose objectives are to enable and empower persons with disability to live as independently and as fully as possible within and as close to the community to which they belong:

to strengthen facilities to provide support to persons with disability to live within their own families;
to extend support to registered organization to provide need based services during the period of crises in the family of persons with disability ;
to deal with problems of persons with disability who do not have family support;
to promote measures for the care and protraction of persons with disability in the event of death of their parent or guardian;
to evolve procedure for the appointment of guardians and trustees for persons with disability requiring such protection;
to facilitate the realization of equal opportunities, protection of right and full participation of persons with disability;
But this not enough as essentials like accessibility, housing, reasonable accommodation are not covered in the NTA however in the Persons with Disabilities Act 1995 (PwD Act) there is reference to Affirmative Actionviii, Non-Discrimination in transportix, on the roadx and in the built environmentxi to accessibility and housing.

One of the main prerequisites for Independent disabled people is an effective housing policy. A policy that entails non-discriminatory public works programs, non-discriminatory housing subsidies and non-discriminatory building codes. Section 42 of the PwD Act speaks of appropriate Governments and local authorities framing schemes in favour of persons with disabilities, for the preferential allotment of land at concessional rates for housing, setting up business; setting up of special recreation centres. However, policies are yet to be framed that are non-discriminatory to make mandatory in all new construction which is financed and undertaken by any municipal, regional or state government agency barrier-free or universal design principles are enforced. Non-discriminatory housing subsidies mean that programs for public or social housing in the form of incentives in the form of subsidy and tax rebate to builders with the sole condition that the buildings conform to accessibility housing standards. Lastly, strict building codes. No builder, whether public or private, would get a building permit without showing that the finished structure complies with the spirit of visitability. The standard excuse that “We’ll build the house so a ramp could be added later.” should be penalised.

Visitability

The spirit of Visitability is that it’s not just unwise, but unacceptable that buildings continue to be built with gross barriers, given how easy it is to build basic access in the great majority of new homes, and given the harsh effects major barriers have on so many people’s lives. These barriers cause daily, draining drudgery; physically unsafe conditions; social isolation; and forced institutionalization. The inflexible Visitability features are wide passage doors and at least one zero-step entrance.

Payments for personal assistance

Another requirement for making disabled persons like Asha independent are services that assist with daily activities. The NTA seeks to “strengthen facilities to provide support to persons with disability to live within their own families”; however there is no provision or mention of payment for the services of personal assistants. As an example good practice the Swedish Personal Assistance Allowance Act of 1994 allows persons with severe disabilities to cash payments from the Swedish National Social Insurance Fund. Payments are made for the number of hours of services required per week for maintaining a “good quality of life”. Assistance with personal hygiene, eating, communicating (in the case of non-verbal persons, including sign language), household chores, at one’s workplace, in getting around town or travelling abroad are covered. The payments are not taxable.

There is an urgent need – keeping in view of the spirit of the UNRCPD – to move away from the substituted decision making and legal guardianship model of NTA where the guardian takes all decisions on behalf of and without consultation with the ward, which sounds the death knell to choice, control, freedom, and equality. Full legal capacity with supported decision making paradigm would keep disabled persons at the centre of all decisions affecting them.

Nothing About Us Without Us!

Monday, December 24, 2007
by Nilesh Singit, blog: http://singitnilesh.blogspot.com/
(This article was published in Combat law, Volume 7, Issue 1, Jan-Feb 08)