Perspectives

Mental illness as disability

Worldwide, there are believed to be around 450 million people suffering from mental or behavioural disorders. 14 per cent of all global disease burden is attributed to mental disorders. There is one psychiatrist for 10,000 people in high income countries and one for 2 million people in low income countries.

In India, there are considered to be just 4,000 psychiatrists for the whole country. According to the National Human Rights Report 2000, 20 to 30 million people “appear to need some form of mental health care” and according to the National Commission for Women, five million of these are women. Yet, mental health, either in the form of health policies or budgetary allocations, are no where on the radar of government

Woefully inadequate

When one looks at The Persons with Disabilities (Equal Opportunities, Protection Of Rights and Full Participation) Act, 1995, which does little more than list mental illness as one of the seven disabilities in its definition and The Mental Health Act 1987 (which came into force in 1993) one will realise that they are woefully inadequate with numerous lacunae.

According to The Mental Health Act 1987, a person with mental illness is defined as “a person who is in need of treatment for any mental disorder other than mental retardation”.

The law is silent about emergency care. Any person with a mental illness picked up by the police first needs a reception order from the Judicial Magistrate before being admitted to an institution. According to the Act, there should be one psychiatrist for every ten mentally ill patients and a cured patient cannot be discharged from a hospital except to a guardian.

Thus, patients who have long since been cured continue to languish in mental institutions as family members refuse to accept them back. Many who work with the mentally ill say the Act is biased towards people with mental illness and it speaks little on rehabilitation and post care treatment. What is noticeable is that even while mental stress continues to increase, pushing growing numbers of people like women and youth to the brink of insanity, our mental health institutions continue to remain like virtual jails, austere steel cages where people are not encouraged to socialise and lead normal lives.

The treatment, of the mentally ill is largely medical and does not address the root causes that led to the onset of the illness. Rehabilitation facilities continue to be concentrated in urban areas and the majority of the rural poor resort to quacks and local healers in search of a treatment.

Marginalised issue

Mental illness itself is a highly marginalised issue among the general disability debate even the National Policy for Persons with Disability 2006 makes nothing more than a passing mention of mental illness in some of its sections.

Thus, the issue of mental illness needs to be brought to the centre stage, focused upon and mainstreamed into the general disability debate. The stigma around mental illness also needs to be addressed through a wide spread media campaign that helps people identify mental illness and treat it early.

Children in schools and people in their work place need to be taught to address their mental stress in healthy ways through the presence of psychologist and counselors. Governments need to make appropriate and adequate budgetary allocations to address the growing problem of mental illness.

Many people with a mental illness require medication for the rest of their lives and this medication needs to be provided free of cost for people who are living below the poverty line. There is a need for half way homes where people who have recovered from mental illness can be rehabilitated by learning a vocational skill and from where they can be integrated into their families. These homes will also offer shelter to those not accepted back by their families.

There is also a need for more mental health institutions and with all probability these should be in the form of additional wings in the district hospital rather than segregated hospitals that further stigmatisation.

(The author is a founding member of disAbilityFirst, a disability group working on advocacy issues.)

Source: Lilian D'Costa. Mental illness as disability. Deccan Herald, Bangalore, 24 December 2007.

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Independent living – For freedom!

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, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our neighbors, 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 summarize, “Independent living is what non–disabled people take for granted: living your own life, deciding what you want to do and making it happen”. The philosophy behind Independent Living is primarily to recognize 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 institutionalizing 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 recognizing 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 hospitalization, 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”.

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.'

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 society

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 Disabilities & 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 recognizes 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 recognizes 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 Action, Non-Discrimination in transport, on the road and in the built environment 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 favor 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 penalized.

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!

Source: Nilesh Singit. Independent Living: Scent of Freedom, This article was published in Combat law, Volume 7, Issue 1, Jan–Feb 08.

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Employment in the private sector

People with disabilities find it difficult to get jobs, both in the private and public sector undertakings, even a decade after the Persons With Disabilities Act 1995 came into effect.

Partha Pratim Dey, 33, who suffers from partial visual impairment, has been looking for a job in the IT sector. With seven years of work experience in software, a degree in zoology plus a three–year diploma from NIIT and training in Oracle, he has not met with any luck.

Says Mr. Dey: “When I apply for jobs, recruiters tell me that I am qualified but employing me is a risk. They have told me that if I write a wrong programme, it will affect the organisation. All the top companies, where I have applied, seem understanding but will not employ me.”

He can read using the magnifier version of Windows XP yet was forced to put in his papers twice when his employers discovered his handicap.

“At first, they appreciated my work and asked me to improve my speed. When they learnt that I was slow because I was partially blind, they changed tack and told me that I was inefficient,” he said. With increasing disability awareness in the private sector, several companies, including big names such as Progeon and Infosys have introduced corporate social responsibility initiatives. The Bangalore-based BPO firm 24/7 trains disabled people and then recruits those who meet their requirements.

“The teams that have disabled people are put through special training to ensure that they are able to work productively. We employ disabled persons in BPOs only because most of them are diploma holders and not qualified,” says Nandita Gurjar, Head of HR, Infosys.

Infosys was recently given a prize by the Ministry of Social Justice and Empowerment for “Best Employer for Disabled”. As many as 171 disabled persons work in Infosys across India. Although this is a good number compared with others, it is still only 0.012 per cent of its BPO workforce.

With increasing attrition rates and a talent crunch, companies, especially BPOs, are employing more disabled persons.

But the larger picture still far from perfect. While success stories reflect a glimmer of hope, the truth is that several qualified people like Mr. Dey are left out in the cold. As he points out: “At the CII Disability Forum seminars, all companies promise to recruit disabled people. They promptly forget about it after the seminars.”

“Attitudes need to change. Companies may be open but recruiters still make the wrong assumptions about our efficiency,” says Ankit Jindal, a visually impaired person working at a leading software company.

“There is still a lot of resistance in all companies to recruit visually impaired persons who are well–trained in software and can function like everyone else,” says Mr. Jindal.

Javed G., a wheelchair user and senior associate at Tata Consultancy Services, says: “Honestly, it was very difficult at first. Recruiters see us as liability. They think we are unproductive and so they cannot afford to hire us.”

A recent World Bank report titled People with Disabilities in India says that while the Indian Government's policy is good, it lacks in implementation.

“There is no legislation that makes it mandatory for companies to be inclusive. Often, they employ only minimally disabled persons so they can declare that it is being done,” says Rama Chari of Diversity in Equal Opportunity Centre, a non–governmental organisation.

The People with Disabilities Act 1995 recommends that the Government provide incentives to the private sector to ensure each firm has a 5 per cent reservation for disabled people. Although the Centre formulated a quota policy, Chhattisgarh and Karnataka are the only States with a draft policy in place.

Source: Deepa Kurup. Private sector reluctant to hire disabled. The Hindu, Chennai, 24 December 2007.

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