2.1 Attitude of family, Community, Peer Group, Teachers, Co-workers
History on PWID indicates influence of various psycho-social, biological, religious and educational factors for the existence of stereotypical attitudes towards PWID. Across the world until the mid-80's they were a marginalized group of people who were discriminated from others' who considered themselves as “normal”. But since the early part of the 21st century significant efforts have been reported across countries in integrating and mainstreaming the PWID in the community at large. To attain this challenging milestone attitude plays a very significant role. Families of PWID undergo high levels of stress and emotional reactions resulting from daily care demands, emotional distress, interpersonal difficulties (family discord), financial hardships as well as social isolation which call for intervention not just for the intellectually disabled but also with the family members. Positive attitude among the health and all professionals with humane qualities such as empathy, genuineness, unconditional positive regard towards the PWID leads to positive expectation and better outcome. Interestingly in developing countries stereotypes are based on ignorance and families find it extremely difficult to disclose the presence of Intellectual Disability (ID) as it is considered to be a ‘loss of face'' and is believed to tarnish the family reputation. Hence, families often adopt strategies to hide the existence of a disability, which in turn delays the treatment, and rehabilitation of PWID. Along with parents and family members other stakeholders like siblings and relatives, teachers, educationists, health professionals and general public's attitudes towards them are highly influential factors for their rehabilitation and integration in the mainstream community. Hence, this chapter is an attempt to focus on the importance of attitude that determines the course towards acceptance of PWID. The authors' focus is on the various perceptions towards intellectual disability and the implications of the favorable and unfavorable attitudes towards PWID since the Egyptian era in developed and developing nations. Further, the recommendations provided are for the policymakers and stakeholders to design intervention programs to alter people's attitude towards acceptance and compassion towards PWID. This is believed to help in their rehabilitation, and integration into the society at all levels and thereby reduces the prejudice and discrimination towards them.
Every child is special to a parent. Some children have special needs and others do not, and this determines the parental care and treatment services in the developmental stages of life. No parent would like his or her child to have any deficits in intellectual, developmental, physical, or psychological domains. But, very often some children have a temporary or permanent disability or a disorder which may have a profound impact on the family.
Intellectual disability (ID) is considered to be a bio-psycho-social problem. Genetic, biochemical, biological, social, psychological, and various interacting forces like attitude and family dynamics, peers and society in which the child lives, play an important role in the adaptive and normal functioning of a child. There are millions of intellectually challenged children in the world who have been considered to be dangerous, incurably insane, and incapable of learning even the simplest task.
According to the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), intellectual developmental disorder (IDD) “is a disorder with onset during the developmental period that includes both intellectual and adaptive functioning deficits in conceptual, social, and practical domains” (American Psychiatric Association, 2013). The intellectual functioning of persons with IDD is below average and their intelligence quotient (IQ) is 70 or less. The origin of the disability is before one reaches the age of 18 years.
Children and adults with IDD never gain respect from the society at large as they are not given full benefits, rights, and privileges, like other individuals with no deficits. Review suggests that prior to the development of institutional care for the retarded, they were treated with the most rudimentary manner focusing only on their physical needs and disregarding psychological, emotional, or social needs. Very often the parents and society have had a negative attitude towards the children with disabilities. Social marginalisation and community rejection are common and they are often demeaned and ridiculed.
The attitudes held by parents are important component of the “handicapping” environment. As stress among parents rise due to the increased demands for energy, time, and financial resources, it may affect their treatment towards the child. Additionally, the social stigma and ridicule attached to any form of disability leads to social isolation. If negative emotions among parents and caregivers are high, it may lead to family disharmony which may have a negative impact in the development and rehabilitation of these children.
Bowlby (1988), the father of attachment theory, had rightly mentioned that the greatest loss and negative consequences of an intellectually challenged child is lack of adequate nurturing relationship with adult caregivers.
So, the way parents’ react to a child with special needs partly depends on how they perceive it and the practical implications the disability or illness has on them. This in turn determines their attitude towards the same and if disability is present, stress and negative emotions increase.
Kagan and Havemann (1980) defined attitude as an organized and enduring set of beliefs and feelings which predisposes one to behave in a certain way. Hence, the emotional component within the attitude distinguishes it from beliefs. The attitude of the people towards these individuals are often accompanied by negative feelings of hostility, shame, denial, guilt, grief, projection of blame, withdrawal, rejection, as well as feelings of helplessness, inadequacy, anger, and shock while some others have disbelief, depression, and self-blame.
Findings from studies focusing on family dynamics have reported high levels of stress and negative emotions. Family crisis may result from the presence of special needs’ child. The health of the parents determines the family wellbeing; but “guilt, ambivalence, disappointment, frustration, anger, shame, and sorrow” are often exhibited by parents. Thus, the attitude of parents may cause hindrance in the process as well as outcome of adaptive functioning in the children with IDD because the environment in which a child is born and brought up has a huge impact on a child’s psychological and physical wellbeing.
The individuals with disabilities are often viewed as incapable of doing anything in life and take care of their basic needs, but a study by Hazarika et.al (2014) to assess the outcome of services of the daycare centers on learning skills of the children found that they can learn a great deal after training in various self-help and social skills. Hence, the individuals with intellectual disability are trainable and educable though severe to profound levels of disability need regular custodial services due to their very limited learning capacity. But, in India, disability is viewed in terms of a “tragedy” with a “better dead than disabled” approach and the disabled people are an isolated lot who are shunned from entertainment and from enjoying a healthy life.
In India, prevalence of ID varies from 1/1000 to 32/1000. In India the majority of persons with IDD have traditionally been cared for by their families though there are institutionalized care centers run by non-governmental organizations (NGOs). The Acharya Ramamurthy Committee have reiterated the role of special schools to serve as resource centers for the assimilation and integration of these children into the normal schools, and thereby improve their level of education. In Assam, although integrated education facilities are present in few schools, they are not adequate. Hence, majority send the children with IDD to special schools and rehabilitation centers.
2.2 Myths, misconception and social practices
Myth 1: They can’t learn new things.
Although people with certain disabilities may learn differently from their neuro-typical peers, adults with disabilities can and do learn throughout their lives. Things like autism, dyslexia, and Down syndrome do not stop people from growing intellectually. It’s important to remember that people from all walks of life learn from the day they are born to the day they pass.
Myth 2: People with disabilities are burdens.
This myth is particularly harmful because it dehumanizes people living with disabilities. Like anyone else, adults with intellectual disabilities have intrinsic value. They have dreams, beliefs, and distinct personalities. While families of people with disabilities may do things differently than other families, they still love and cherish their time together.
Myth 3: All people with developmental disabilities wish they were “normal.”
First and most importantly, the concept of being “normal” can be offensive. No two people are exactly alike, so there is no sense in the concept of normalcy. Secondly, people with developmental disabilities sometimes love the very thing that makes them unique. For example, a person with autism may wish they were neuro-typical, or they may be proud of their differences.
Myth 4: People with developmental disabilities can’t lead productive lives.
Unfortunately, many employers believe that adults with developmental disabilities cannot be productive at their jobs. Likewise, too many neuro-typical people believe that they cannot befriend someone with a disability. People who believe this misconception are missing out. Many people with disabilities have fulfilling jobs, wonderful friends, and beautiful families.
Myth 5: They are not equal.
Almost all the harmful myths surrounding adults with developmental disabilities stem from one idea: they are not equal to people without disabilities. It’s important for all people in our society to understand that people deserve equal treatment regardless of how they learn, their physical abilities, their appearance, or their emotional needs.
Myth:Intellectual disabilityis a hereditary problem.
Intellectual disabilityis only sometimes inherited. Most often, it is caused by external influences, some of which can be prevented.
Myth:Intellectual disabilityis contagious.
This is entirely false, as intellectual disability does not spread by any type of contact.
Myth: Children with intellectual disability should not be made to cry when being disciplined.
Like all children, children with intellectual disability also need to be taught good behavior. However, it is important to take their limitations into consideration while disciplining them.
Myth: Marriage can cure intellectual disability.
This is entirely false. Marriage to a person with intellectual disability must take place with the full consent of the partner, who should be informed about the medical condition of the person.
Myth: Medicines and vitamins can cure intellectual disability.
When intellectual disability is caused by a treatable condition, appropriate treatment of that condition can cure it. There are however, no tonics that can stimulate a damaged brain.
Myth: Adults with intellectual disability can pose sexual danger to others because they have poor sexual control.
Adults with intellectual disability tend to be sexually inhibited.
Myth: Bad deeds/karma of parents from a previous life can cause intellectual disability.
This is entirely false. Beliefs like these only add to the already increased burden on the parents.Intellectual disabilityis a medical condition, and parents and caregivers need support from the community. People with intellectual disability perform very well with sufficient support and encouragement from their family and the community.
Myth: Faith healers can cure intellectual disability.
This is completely false. Faith healers mislead parents into believing that they can cure intellectual disability. There is no proof or valid research-based evidence that supports this claim.
How You Can Help
If you want a better life for people with intellectual disabilities, there are plenty of things that you can do to help:
· Refrain from making assumptions about anyone’s abilities or feelings.
· Don’t shy away from hiring someone with anintellectual disability.
· Befriend someone who lives with a disability.
· Treat all people as equals.
· Correct your peers when they make assumptions or treat someone poorly.
2.3 Difference between Intellectual Disability and Mental Illness
2.4 Psycho-Social Issues – Exploitation, Delinquency, child labour and child Abuse
People with disabilities are also particularly vulnerable to exploitation. Exploitation can take many forms, including:
People with disabilities are more susceptible to abuse for many reasons. Some of these reasons are:
Abuse can take many forms, ranging from overt physical and/or sexual assaults to bullying and emotional abuse that are more difficult to prove but whittle away at a person’s dignity and sense of worth. The word “abuse” is a broad term that describes any behavior that is:
People with disabilities experience the same forms of physical violence, sexual abuse and molestation and neglect as the general population. However, they experience these abuses at much higher rates. For example, people with disabilities are victims of nearly 1 million nonfatal, violent crimes every year, including rape, sexual assault, aggravated and simple physical assault, and robbery. People with disabilities are also more likely to experience several less common forms of abuse. For example, it is not uncommon for an abuser to manipulate medications or to withhold access to assistive equipment and technology, including communications devices, in order to control behavior. In other cases, a personal care assistant might refuse to provide essential assistance.
Unfortunately, in many cases, the victim knows his or her attacker. The majority of abusers are family members, relatives, caregivers, neighbors, classmates, educators or staff members assigned to support the person with disabilities.
The word delinquency stands for crimes or other morally wrong acts : illegal or immoral behaviour especially by young people.
Involvement in kids within the special education system is a hot topic. When
the federal special education law was passed in 1975, Congress found that most
children with disabilities were not receiving an appropriate education - and
that millions of children were excluded from school altogether.
Today, schools continue to suspend and expel students with disabilities for behaviours that are a direct result of their disabilities. These children often become delinquent, feel worthless, are viewed as "failures," stop trying, and/or end up in the juvenile justice system as a result of their treatment by those who are charged with educating them.
The 2006 UN Convention on the Rights of Persons with Disabilities (UNCRPD) introduces a ‘social’ approach to disability, which “results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others”. The UNCRPD reaffirms that people with disabilities must enjoy the same rights than non- disabled people, and emphasizes that societies must uphold the principle of reasonable accommodation of their needs in order to ensure their full participation.
The ILO’s International Programme on the Elimination of Child Labour (IPEC) refers to child labour as “work that is mentally, physically, socially and morally dangerous and harmful to children; and also interferes with their schooling by depriving them of the opportunity to attend school; obliging them to leave school prematurely and requiring them to attempt to combine school attendance with excessively long and heavy work.”
Disability, education and child Labour at the Global Level
UNICEF estimates that there are at least 150 million children with disabilities3, while the WHO and the World Bank estimate the number of children aged 0-14 years with “moderate or severe disability” at 93 million, with 13 million children experiencing severe disabilities. Children with disabilities are more likely to be male than female, possibly suggesting that baby girls with an impairment have less chance of survival. around 80 per cent of people with disabilities live in developing countries, where they make up between 15 and 20 per cent of the poor4.
The global number of children in the 5-17 age group classified as ‘in employment’ is 306 million globally. Among them, 70 per cent, or 215 million, are in child labour5.
Global trend analysis6 shows that child labour is declining (-3.2 per cent between 2004 and 2008), particularly in Asia and the Pacific, which nevertheless remains the region with the highest absolute number of child labourers. Most child labourers in the region continue to work in agriculture, and the majority of them are in unpaid employment.
Child labour and employment The CRPD recognises the equal right to work for people with disabilities. However, in both developed and developing countries, exclusion from community participation and interaction in their formative years means that the experience of employment can be particularly challenging.
• Children with disabilities often begin their working lives young, being kept home to do chores and errands or sent to work at menial jobs, in some of the harshest forms of child labour. For example, children with disabilities are specifically used in begging because they are perceived as being more compliant, and less able to challenge abuse.
• Lack of skills and qualifications limits the employment opportunities for young people with disabilities. Unemployment rates for people with disabilities are higher than for people without disabilities in every nation, often exceeding 80%.
• Negative attitudes and misconception about disability remain significant obstacles to the successful employment of youth with disabilities. For example, it is widely believed that persons with disabilities are less productive than their peers, require expensive adaptations to the workplace such as ramps or accessible IT, and will have higher rates of illness and absenteeism. In fact, most accommodations do not impose significant financial costs to the employer and even people without disabilities use and benefit from the use of supportive workplace policies and practices.
• For young women with disabilities, the prospects for meaningful employment are even lower and even with a good education, young women with disabilities take a longer time to find a job, have fewer job options and less secure job futures.
• These negative perceptions do not correspond with a growing body of research that shows that young people with disabilities are as productive and dependable as their non-disabled peers with lower rates of absenteeism than workers without disabilities. It is speculated that this is because people with disabilities are keenly aware of the limited job options available to them should they lose their current positions.
2.5 Rights and Advocacy
To understand the context of rights and advocacy let us have a look at the disability rights movement in India.
The evolution of the disability rights movement (DRM) in India spans over four decades.
Initial phase of the DRM: The 1970s and 1980s
Until the 1970s, most of the people who suffered from any kind of disability were considered as outcasts from the mainstream society and were looked down upon.
Even the system thought of them as a liability; these people were considered to be of little use to society and hence their concerns were severely disregarded. Many people thought of disability as the result of someone’s previous life’s sins and thus held them responsible for their present condition. This absurdity led to various forms of injustices in India.
In contrast, things were changing rapidly and drastically in the Western countries at this time. In the West, the disability rights movement had gained momentum in the 1950s, and by the 1970s it had begun challenging governments with a much greater force. In India, such demands had only started to emerge.
In the West, things started to change after World War II, when thousands of soldiers returning home were left with several kinds of disabilities. These soldiers became an initial source of the DRM and they even saw some success in getting their rights, mainly because these soldiers were considered heroes of the war and thus their demands garnered immense public support.
No such thing happened in India. Most offers of assistance from Indian society toward its disabled population were viewed as charity rather than providing legitimate rights to PwD. Even the families associated with a disabled person were looked down upon and scrutinized in many ways by their relatives and neighbors. In many cases, this led to families disowning their disabled family members; disabled children were all too often left in orphanages. A severe kind of “shame” was associated with disability.
Throughout the 1970s and 1980s, the DRM remained largely a battle between a few individuals against the system and society. These individuals were very few in number since few families had the capacity and will to support their “differently-abled” children.
For politicians, the rights of disabled persons were a non-issue. Disabled people were not considered as a “vote bank” as they were people with no voice. Unlike the caste movements and women rights movements, the DRM had no leader. This dearth of leadership caused a very long wait for the movement to gain any kind of success.
Also, the society treated those who were born disabled differently from those who became disabled after some injury. Throughout the 1970s, many NGOs across the country were running with the help of foreign aids and charity from the economically well-off sections of the society. The disability sector was ruled and controlled by NGOs with either parents or professionals at the helm of affairs. They worked in isolation, with no interaction or connection with each other. Most of them worked only for a particular disability, for instance, NGOs for the visually impaired, for the hearing impaired, for persons with intellectual disabilities, and so on.
Baba Amte, a renowned social activist, dedicated his whole life for the rehabilitation and empowerment of poor people suffering from leprosy. He was a very prominent figure who inspired many others in sensitizing people toward this cause. This resulted in many people realizing the importance and coming forward to become a part of DRM.
The 1980s saw a shift in the policy frame with the welfare model being transformed into a developmental model. This was a phase where the disabled persons, hitherto treated as recipients of charity, became participants in the developmental process. By the end of the 1980s, people also started focusing on disability on medical grounds, with the objective of trying to reduce suffering via medical treatments, medical equipment, and technical help, to make the lives of disabled people “normal.” But these ideas were practiced only by a limited section of the society, which was literate, sensitized, economically well-off, and modern in a real sense.
When the United Nations
announced 1982-1993 as The Decade of Disabled Persons, it marked
another shift in the entire debate on the goals of rehabilitation. The
Rehabilitation Council of India was set up by the Government of India
in 1986 to regulate and standardize training policies and programs for the
rehabilitation of persons with disabilities. The very next year saw the Mental
Health Act (1987) come into existence. The Mental Health Act is a civil
rights legislation that focuses on regulating standards in mental health
institutions. It was enacted to regulate admissions to psychiatric hospitals
psychiatric nursing homes of mentally ill-persons who do not have sufficient
understanding to seek treatment on a voluntary basis and to protect the rights
of such persons while being detained, to protect society from the presence of
mentally ill persons who have become or might become a danger or nuisance to
others, to protect citizens from being detained in psychiatric hospitals or
nursing homes without sufficient cause, to regulate responsibility for
maintenance charges of mentally ill persons who are admitted in psychiatrist
hospitals or nursing homes, to provide facilities for determining guardianship
or custody of mentally ill-persons who are incapable of managing their own
affairs, to provide for the establishment of Central Authority and State
Authorities for mental health services, to regulate the power of the Govt. for
establishing, licensing & controlling psychiatric nursing homes for
mentally persons and to provide for legal aid to mentally ill-persons at state
expense in certain cases.
Despite the existence of this Act for the protection of the person, property, and management of persons covered, until recently, most mentally ill persons were consigned to jails. Those living in mental health institutions were no better off, since the conditions both in prisons and in mental institutions were far below the stipulated standards.
The last decade of the millennium brought drastic changes in the disability sector of India. A distinct self-advocacy movement of people with disabilities, which started during the 1970s, began campaigning for protection and recognition of their human rights. It advocated the enactment of a comprehensive legislation with a rights-based approach, placing special emphasis on social and economic rights.
The government had recognized the need for such legislation in 1980. But since the legislative power regarding disability was kept on the State List, the matter could not be pursued. However, Article 253 of the Constitution of India enables the Parliament to override the federal distribution of powers and to give effect to a treaty entered with a foreign power or an international body, even if the matter of legislation relates to an entry in the State List. With the signing of the Proclamation of Equality and Full Participation of People with Disabilities in the Asian and Pacific Region, the Persons with Disabilities Act was enacted by Parliament in 1995.
The PwD Act was focused more on rights. The substantive provisions of the Act relate to prevention and early detection, education, employment, affirmative action, non-discrimination/barrier free access, research and manpower development, and institutions for persons with severe disabilities. After the PwD ACT, 1995 was enforced, a 3 percent reservation (comprising 1 percent reservation each for those with locomotor disability, hearing disability, and visual disability) was offered to the PwD category in educational institutions and government services.
Different kinds of disability in the Act are classified based on medical grounds and not on social perception of disability. Critics of the PWD Act say that the Act is replete with numerous flaws, as it was passed by Parliament without a full length debate. They say that the Act lacks teeth and provides ample escape routes to the concerned government.
The formal recognition of discrimination on grounds of disability is a recent development. Laws enacted 20 years ago generally did not include disability in the list of prohibited heads of discrimination. For instance, though the Indian Constitution in its Articles 15 and 16 prohibits discrimination in the matter of employment and access to public facilities on grounds of religion, race, caste, sex, and place of birth, it is silent on disability. In fact, until 1995 the Service Rules prevented the entry of persons with disability in higher grades of service.
The New Millennium: The Story After 2000
Disability status was not canvassed in India’s census from 1941 to 1971. Thus, PWD were excluded from the population census until the 1980s. The 1981 census included information on three types of disabilities, an utterly inadequate semblance of inclusion. Again, persons with disabilities were totally left out from the purview of the 1991 census. This resulted in growing demand by PwD for their inclusion in the population census of India.
After a prolonged advocacy, a question on disability was finally included in the 2001 census questionnaire at the last minute. With minimal awareness and training, the enumerators found that 2.1 percent of the total population of the country consists of PwD. India finally accepted that 21 million of its citizens were PwD. However, persons belonging to many more disabilities, including persons with mental and intellectual disabilities, were completely excluded (only five categories of persons with disabilities were included in the census).
Disability rights activists strongly dispute the census 2001 figures on the number of persons with disabilities on various grounds: the non-inclusion of many disabilities, the improper training of enumerators in identifying persons with disabilities, etc.
The 2011 census revealed that over 26.8 million people in India suffer from some kind of disability. This is equivalent to 2.21 percent of the population. Among the total disabled in the country, 14.9 million are males and 11.8 million are females; 18.6 million PwD reside in rural areas while 8.2 million reside in urban areas. People who advocate against the likely increase in reservation for PwD from three percent to five percent point out that people born with disabilities are growing fewer in number, particularly after advancements in the field of medicine, when compared to those who become disabled after their birth. To cite one gruesome example, human traffickers force able-bodied people (mostly children) into the business of begging by kidnapping and then cutting off their limbs, making them disabled for life.
Looking at this situation and the demands from civil society, the Union Government came up with a National Policy on Disability in the year 2006. This was a comprehensive national policy on disability covering critical areas like education, employment, support services, access, social security, etc. However, this policy also needed to be comprehensively modified in the light of the UN Convention. Somehow, the national policy is nearly silent on the civil and political rights of persons with disabilities. Unfortunately, most of the states of India do not have a state-level disability policy in place yet, though a few states are in the process of evolving such a policy.
The Current Decade and the new Disability Bill
The Rights of Persons with Disabilities Bill (RPWD Bill), drafted in 2011, was meant to be an enactment to codify India’s obligations under the UN Convention on the Rights of Persons with Disabilities (UNCRPD), which it ratified without reservations. There was a committee set up in 2009 by the Ministry of Social Justice and Empowerment to draft a bill to this effect. In accordance with the UNCRPD, the committee included different people with different disabilities to draft this bill.
Based on vital amendments, the bill, for the first time, represented rights-based disability legislation. Its focus was on transforming the meaning of disability, expanding its definition from the existing medical framework to a social one. The amendments included hiking the quota of government jobs from three to five percent and underlining the need to make private companies responsible for creating a friendly workplace environment for employees with disabilities.
The Lok Sabha tpassed "The Rights of Persons with Disabilities Bill - 2016" on 16.12.2016. The Bill replaced the existing PwD Act, 1995, which was enacted 21 years back.
The salient features of the proposed Bill with incorporation of the amendments are:
a) Responsibility has been cast upon the appropriate governments to take effective measures to ensure that the persons with disabilities enjoy their rights equally with others
b) Disability has been defined based on an evolving and dynamic concept.
c) The types of disabilities have been increased from existing 7 to 21 and the Central Government will have the power to add more types of disabilities. The 21 disabilities are given below:-
3. Leprosy Cured persons
4. Hearing Impairment (deaf and hard of hearing)
5. Locomotor Disability
7. Intellectual Disability
8. Mental Illness
9. Autism Spectrum Disorder
10. Cerebral Palsy
11. Muscular Dystrophy
12. Chronic Neurological conditions
13. Specific Learning Disabilities
14. Multiple Sclerosis
15. Speech and Language disability
18. Sickle Cell disease
19. Multiple Disabilities including deafblindness
20. Acid Attack victim
21. Parkinson's disease
d) Speech and Language Disability and Specific Learning Disability have been added for the first time. Acid Attack Victims have been included. Dwarfism, muscular dystrophy have has been indicated as separate class of specified disability. The New categories of disabilities also included three blood disorders, Thalassemia, Hemophilia and Sickle Cell disease.
e) Additional benefits have been provided for persons with benchmark disabilities and those with high support needs.
f) Every child with benchmark disability between the age group of 6 and 18 years shall have the right to free education.
g) For strengthening the Prime Minister's Accessible India Campaign, stress has been given to ensure accessibility in public buildings (both Government and private) in a prescribed time-frame.
h) It has been proposed to increase reservation from 3% to 4% in Government jobs for certain persons or class of persons with benchmark disability.
i) The Bill provides for grant of guardianship by District Court under which there will be joint decision – making between the guardian and the persons with disabilities.
j) Broad based Central & State Advisory Boards on Disability have been proposed to be set up as policy making bodies.
k) Strengthening of the Office of Chief Commissioner of Persons with Disabilities and State Commissioners of Disabilities has been proposed, which will act as regulatory bodies and Grievance Redressal agencies and also monitor implementation of the Act. These Offices will be assisted by an Advisory Committee comprising of experts in various disabilities.
l) Creation of National and State Fund has been proposed to provide financial support to the persons with disabilities.
m) The Bill provides for penalties for offences committed against persons with disabilities.
n) Designated special Courts have been proposed to handle cases concerning violation of rights of PwDs.
It is expected that the proposed rights based legislation with more Rights and Entitlements and strong monitoring agencies at the National and State Levels will achieve empowerment and inclusion of Persons with Disabilities in the society in a satisfactory manner.
This new legislation defines 21 categories of disabilities where the old one only defined seven. This increases the responsibility of agencies working in the disability sector. Now, the real task starts—to bring together issues that affect lives of very diverse people, and work towards the common goal of overseeing uniform implementation of this law. Disability is not a homogenous issue and does not affect everyone in the same way. There are more than 100 clauses in the RPwD Bill, and it is obvious that all of them will not be applicable to all people under the disability category equally.
The Indian Penal Code on violence against women already includes disability-specific clauses. But, for the very first time in India, we have gender-specific clauses as part of a disability legislation. One needs to highlight here that the provisions for women are not restricted to one particular chapter, but are integrated in many important chapters like Health, Social Security, and others.
This Bill says that “appropriate Governments shall, within the limit of their economic capacity and development, formulate necessary schemes and programmes to safeguard and promote the rights of persons with disabilities for adequate standard of living, to enable them to live independently or in the community.” This is a marked improvement as the old law only talked about affirmative action’s like reservation in jobs and employment.
However, some of us are worried about the words “within the limit of its economic capacity”, and activists are already working to see that the rules under this new law are framed in such a manner that the stipulation that “the quantum of assistance to the persons with disabilities under such schemes and programmes shall be at least 25 % higher than the similar schemes applicable to others” is applied to all poverty alleviation schemes as mentioned in this law henceforth.
Unfortunately, some in the disability sector don’t see this law as a reason for celebration. There are some who feel that the law should have been closer to the UNCRPD’s spirit. There are even certain conflicting clauses in this law. For example, it says, “The appropriate Government shall ensure that the persons with disabilities enjoy legal capacity on an equal basis with others in all aspects of life and have the right to equal recognition everywhere as any other person before the law,” and yet it also talks about the provision of guardianship for certain kinds of disabled people, baffling lots of activists. However, perhaps it is important to read this law in conjunction with another law – namely the National Trust Act – under which guardianship has been mandated till date.
In our country, the disabled have to procure a certificate to get any kind of entitlement from the state. The process to procure certification is extremely difficult and time-consuming. Moreover, authorities do not accept the certificate from one state in another. For example, the blind cricket team from West Bengal realised they would not get concessional bus fares in Karnataka. However, this law is bringing in much-needed change. The RPwD Bill provides that henceforth such certificates “will be valid across the country”.
Activists are also happy that this law includes penal provisions. The old disability law never realised its full potential because of the lack of penalty provisions, among other things. Though the provisions could have more teeth, their inclusion is definitely progress from the existing law. The legal procedure of our country is expensive, and poor people have little access to courts.
As poverty and disability go hand in hand, the provision of “the right to free legal aid” also brings cheer.
Finally, a major gain from the law is the Accessibility chapter. This law mandates accessibility for even private establishments, and gives a specific timeframe to implement the changes. From transportation to internet access to electronic goods, the law makes accessibility mandatory across the board.
This would have a huge impact on India, which according to some sources has the largest disabled population in the world. The World Bank suggests that there are around 80 million disabled people in India. The actual numbers are contested but it is true that India has a fairly large share of the global disabled population. The disability law will bring long-awaited hope and change to the lives of persons with disabilities in India.
It might be too ambitious to hope that the government will implement all the aspects of this law soon. The responsibility of activists who work at the grass-root level, has increased manifold. Now, we must be watchful to ensure that the gains from years of struggle do not slip by.
In our country the idea of active involvement by disabled people in advocating their rights is just catching on. The disability movement in our country is very weak and scattered. Nevertheless, in a few areas there have been instances of affirmative actions for disabled people. There is still a lot of ignorance on ways of including disabled people in the developmental programme and in education.
Unlike western societies, the disability movement in India is still dominated by non- disabled or professionals in the field of rehabilitation. There is more emphasis on health services. However, there are some positive beginnings, some organized movements, by disabled people. These groups tend to focus on welfare issues such as enhancing the disability pension or providing free bus passes for disabled people. More recently, we are seeing a slow shift where groups are moving towards rights issues with a social perspective.
The recent controversy over the use of the term divyang is also a reflection of the struggle for self-determination for people with disabilities in India. Yes, it is true that there may not be a rights-based equivalent in Hindi for the term ‘persons with disabilities’. But the choice to identify with any terminology is the prerogative of the people and should not be defined by societal constructs that patronize them. Unfortunately, these issues hardly ever find space in our mainstream public discourse.
There is a long way to go in improving the status of disabled people in India. There is a need to popularize issues affecting disabled people and to strengthen/support the initiatives of disabled people's movement.