A Bold Act An analysis of Rights of Persons with Disabilities Bill 2012
It is only a disabled person who best understands what it is to be disabled and what all sufferings they have to undergo as a disabled person, not only physically but also mentally! What makes matters worse for them is when people mock at them and discriminate against them on even very trivial issues. They too want to be treated like ordinary people and they don’t want too much sympathy nor discrimination which they have to face, most unfortunately, at every single step of their lives. It is the bounden duty of all of us to do our best to help them in all possible manner in all walks of life so that they too can lead a dignified and elegant life without feeling that they are disabled and different from others in an inferior way.
In the wake of strident criticism emanating from various disability groups for utterly failing to draft for such a long time a comprehensive and holistic Bill that will confer full rights to a disabled person, the Ministry of Social Justice and Empowerment has finally come up after much deliberations with a fresh draft legislation that basically seeks to provide them access to properties, including securing the rights of inheritance of people with disabilities. Suitable provisions have been inserted in the Bill providing that if required, legal aid may be provided to persons with disabilities, to protect their rights on property. Legal aid should have been mandatory especially for those who are poor and it should not have been restricted to exceptional cases only.
The existing law, the Persons With Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 has abjectly floundered in equipping disabled people with a decent quality of life which is why the need was felt for a fresh legislation with adequately empowered teeth. The current Rights of Persons with Disabilities Bill 2012 which very recently has been made public by the Ministry of Social Justice and Empowerment is a much needed step by government to place this domestic legislation in complete parity with the standards envisaged by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) which India has already ratified. Without doubt, the morale of the disabled people will get boosted once this new Bill is enacted into a law for which many of their organisations have been vigorously campaigning for last few years. But it is noteworthy that the remaining drawbacks should be again given a hard look and be suitably amended to remove the glaring infirmities which have not been adequately addressed even in this new Bill.
The draft Rights of Persons with Disabilities Bill, 2012 defines a ‘person with disability’ in Section 2 (y) as “a person with long-term physical, mental, intellectual or sensory impairment which, in interaction with various barriers, may hinder his full and effective participation in society on an equal basis with others”. Also, a ‘person with benchmark disability’ is defined in Section 2 (x) as “a person with not less than forty per cent of a specified disability, as certified by a competent authority”. It is also imperative to mention here that ‘specified disability’ has been defined in Section 2 (hh) to mean “autism spectrum disorder, blindness, cerebral palsy, chronic neurological conditions, deafblindness, haemophilia, hearing impairment, intellectual disability, leprosy cured, locomotor disability, low vision, mental illness, muscular dystrophy, multiple sclerosis, specific learning disability, speech and language disability, thalassemia, and multiple disability as defined in the schedule”.
We also cannot afford to leave out here Section 3 of this new Bill which deals with guiding principles. It lays down: “Appropriate governments and local authorities shall, subject to the provisions of this Act and any other laws for the time being in force, take all necessary steps to secure for persons with disabilities the following:
- a) Respect for inherent dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons;
- b) Non-discrimination;
- c) Full and effective participation and inclusion in society;
- d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity;
- e) Equality of opportunity;
- f) Accessibility;
- g) Equality between men and women;
- h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.”
This new Bill seeks to permanently do away with the plenary guardianship system under which a guardian substitutes for the person with disability before the law and takes all legally binding decisions for him/her, and has substituted it with a limited guardianship system as provided in Section 8. Further, “plenary guardianship” is elaborated in the explanation to Section 8 which says: Plenary guardianship is a system whereby subsequent to a finding of incapacity a guardian substitutes for the person with disability as the person before the law and takes all legally binding decisions for him or her. The decisions of the person with disability have no binding force in law during the subsistence of the guardianship. The guardianship is under no obligation to consult with the person with disabilities or determine his will or preference whilst taking decisions for him or her. It also makes it clear that subsequent to the enforcement of this Act all plenary guardians shall operate as limited guardians. It also deserves mention here that under the limited guardianship system, the decisions will be made jointly on mutual understanding and trust between the guardian and the person with disability and after close consultations with each other to arrive at legally binding decisions. One can therefore assume with unbreachable confidence that this new Bill is certainly endeavouring to chalk out a middle path between the current scenario in India and the UNCRPD requirements. Section 9 places an obligation on the appropriate governments to provide support to disabled persons in exercise of legal capacity by establishing or designating one or more authorities to mobilise the community and create social networks.
It is imperative here to narrate that the UNCRPD specifically mandates that the Indian law should be suitably modified to recognise the legal capacity of all persons with disabilities and the concept of guardianship is abolished. Disconcertingly enough, the guardianship concept is still in operation and even in the new Bill, this has been retained. Also, the UNCRPD also enjoins that India must initiate suitable steps to provide access by persons with disabilities to the support they may need in exercising their legal capacity.
As of now, the two legislations that are concerned with the vital issue of appointments of guardians for persons with disabilities—the Mental Health Act, 1987, which had been enacted for those suffering from mental illness, and the National Trust Act, 1999, which was enacted primarily for the welfare of persons afflicted with mental retardation, autism, cerebral palsy and multiple disabilities—envisage that those persons with disabilities cannot exercise legal capacity on a permanent basis and this makes it all the more necessary to appoint the guardians for the vital purpose of furthering the exercise of legal capacity in relation to contractual obligations. So, as soon as a guardian is appointed, he or she wields unrestricted discretionary power to take all major decisions affecting the disabled persons on their behalf and are not bound on any count to consult them. It goes without saying that these unrestricted discretionary powers which the guardian wields has more often than not been grossly abused and in this whole racket, the unscrupulous close greedy relatives have been equal conduits in grabbing the legitimate share of the disabled persons.
This is exactly what the present Bill proposes to address by not only putting a full stop on the unrestricted discretionary power wielded by guardian but also giving an equal say to the disabled persons in all such matters, which affects them the most. The draft of the present Rights of the Persons with Disabilities Bill, 2012 has also been displayed on the website of the Ministry of Social Justice and Empowerment valiantly, which seeks to ensure that all necessary steps are taken by the government to secure for persons with disabilities individual autonomy, which also include the freedom to make one’s own choices, and independence of persons, non-discrimination, full and effective participation and inclusion in society, equality of opportunity and equality between men and women, among many other things. Section 4 which deals with equality and non-discrimination runs as follows:-
(1) The appropriate government shall take all necessary steps to ensure that persons with disabilities enjoy the right of equality guaranteed by Article 15 of the Constitution of India, on an equal basis with others.
(2) No person with disability shall be discriminated, unless it can be shown that the impugned act, provision, criterion, practice, treatment or omission is a proportionate means of achieving a legitimate aim.
(3) The appropriate government shall take all necessary steps to ensure reasonable accommodation.
(4) A person with disability shall not be forced or compelled to partly or fully pay any of the costs incurred to provide reasonable accommodation.
(5) Any affirmative action or measure aimed to accelerate or achieve de facto equality of persons with disabilities shall not constitute discrimination.
Also Section 5 enjoins upon the appropriate government and local authorities to take measures to ensure the full and equal enjoyment of all rights by women and girls with disabilities and also to ensure the full development, advancement and empowerment of women and girls with disabilities, for the purpose of guaranteeing them the exercise and enjoyment of the human rights on an equal basis with others. Similarly, Section 6 makes it mandatory for the appropriate government and local authorities to take all necessary measures to ensure that children with disabilities enjoy human rights on an equal basis with other children and also equally have the right to freely express their views on all matters affecting them.
Section 7 stipulates that persons with disabilities would enjoy legal capacity on an equal basis with others in all aspects of life and have the right to equal recognition everywhere as persons before the law. It also seeks to ensure that any disqualification on the grounds of disability prescribed in any legislation, rule, notification, order, bye-law, regulation, custom or practice that has the effect of depriving any person with disability of legal capacity shall not be legally enforceable from the date of enforcement of the proposed Act. It is also made abundantly clear that all persons with disabilities have the right, on an equal basis with others, to own or inherit property, control their financial affairs, obtain access to bank loans, mortgages and other forms of financial credit, and not to be arbitrarily deprived of their property. They also have the right to access all arrangements and support necessary for exercising legal capacity in accordance with their will and preferences. It also provides that the legal capacity of a person with disability shall not be questioned or denied, irrespective of the degree and extent of support, by reason of accessing support to exercise legal capacity. Further, it also stipulates that when a conflict of interest arises between a person providing support and a person with disability in a particular financial, property or other economic transaction, then such supporting person shall abstain from providing support to the person with disability in that transaction. It also imposes an obligation on the person providing support either individually or as part of a network not to exercise undue influence on a person with disability and shall respect the autonomy, dignity and privacy of persons with disabilities. It also arms the person with disability to alter, modify or dismantle any support arrangement and substitute it with another but a proviso is added that such alteration, modification or dismantling shall be prospective in nature and shall not nullify any third party transactions entered into by the person with disability with the aforesaid support arrangement.
Section 10 directs the appropriate government to take necessary steps to ensure that persons with disabilities enjoy the right to life with dignity and to personal liberty guaranteed by Article 21 of the Constitution on an equal basis with others. It makes it crystal clear: “No person shall be deprived of his personal liberty only on the ground of disability.” Section 11 makes it clear: “All persons with disabilities shall have the right to live in the community with choices equal to others.” Not stopping here, it further makes it mandatory for the appropriate government and local authorities to ensure full enjoyment of the right by: –
- Not obliging persons with disabilities to live in any particular living arrangement;
- According due recognition to the age and gender needs of persons with disabilities;
- Ensuring that persons with disabilities have access to a range of in-house, residential and other community support services, including personal assistance necessary to support living and inclusion with community;
- Making community services and facilities for the general population available on an equal basis to persons with disabilities.
Section 12 vests every person with disability to have a right to respect for his or her physical and mental integrity on an equal basis with others. Section 13 casts responsibility on the appropriate government and local authorities shall take all appropriate administrative and other measures to protect persons with disabilities from being subjected to torture, cruel, inhuman or degrading treatment or punishment. It also directs that no person with disability shall be a subject of any research without: –
- His or her free and informed consent, obtained through accessible modes, means and formats of communication; and
- Prior permission of an Ethics Committee for the purpose by the appropriate government as may be prescribed which not less than half the members shall themselves be either persons with disabilities or members of registered organisations.
Now coming to Section 14, in summary, it can be said that it directs the appropriate government and local authorities to protect persons with disabilities from all forms of abuse, violence and discrimination. It also advises people and registered organisation to give information about an act of abuse, violence or exploitation that has been or is being or is likely to be committed against disabled person to the Executive Magistrate concerned who shall then pass appropriate orders and take immediate steps for the protection of disabled person. Those who furnish information in good faith shall be exempted from civil or criminal liability. It also casts responsibility on the police officer who receives a complaint or otherwise comes to know of any wrong doing against disabled person to inform him/her of the right to apply for protection, the particulars of the nearest organisation or institution working for their rehabilitation, the particulars of the Executive Magistrate having jurisdiction to provide them aid, of their right to free legal services and any other service offered by the National or State Legal Services Authority for their benefit and of their right to file complaint under relevant provisions of the IPC or any other law dealing with such crimes. But all this does not free such police officer of his obligation to proceed in accordance with law upon receipt of information as to the commission of a cognizable offence. The Executive Magistrate is also empowered to forward a complaint in all such cases where the alleged act or behaviour would also be an offence under the IPC or under any other law to the judicial or metropolitan magistrate having jurisdiction in the matter who shall act forthwith in accordance with law.
While Section 15 deals with various provisions pertaining to protection and safety of persons with disabilities in situations of risk, on the other hand, Section 16 deals with right to home and family. It is also pertinent to mention here that this new Bill simply prohibits any person ailing under any disability from being subject to any medical procedure that leads to or could lead to infertility without their free and informed consent as provided in Section 17, which deals with reproductive rights of persons with disabilities. Section 18 guarantees disabled persons the freedom of speech etc as enshrined in Article 19 of Constitution. Section 19 confers on them the right to political participation and Section 20 confers on them the right to access to justice.
Section 21 enumerates various duties of educational institutions to provide inclusive education to students with disabilities. Section 22 lists various measures, which it is the duty of appropriate governments and local authorities to take to promote and facilitate inclusive education and Section 23 provides for adult education for disabled. Section 24 talks about vocational training and self-employment, which the appropriate government shall impart. Section 25 makes suitable provisions for ensuring the disabled non-discrimination in employment.
Section 26 stipulates that within one year of the commencement of this legislation, every establishment shall notify an “Equal Opportunity Policy” (EOP) detailing measures proposed to be taken by it and among other things also provide that a copy of the EOP of every establishment shall be deposited and registered with the State Commission for Persons with Disabilities. Section 27 makes it mandatory for every establishment to maintain records and vests power on them to inspect such records. Section 28 deals with redressal of grievances relating to Section 25 and the Grievance Redressal Officer is bound to maintain a register of complaints and has to look into every complaint within two weeks of its registration.
Section 29 deals with social security and various causes for which the scheme shall provide and Section 30 deals with health provisions which is the job of appropriate government and local authorities to provide. Section 31 makes it obligatory for all establishments to provide medical and life insurance to their employees with disabilities and either its denial or disproportionate premium or iniquitous conditions would constitute discrimination against such employees. Section 32 enjoins upon the appropriate governments and local authorities to take rehabilitation programmes for the disabled and outline various provisions dealing with the same.
Section 33 provides for research and development to be initiated by the appropriate governments while Section 34 makes various measures for leisure, culture and recreation. Section 35 enacts various steps and measures to be taken by appropriate governments and national and state sports bodies to guarantee effective participation in sporting activities for all persons with disabilities.
It also makes specific provisions to provide that all establishments will also provide medical and life insurance to their employees with disabilities on an equal basis with others. Section 64 states specifically that this Act not to apply to institutions established or maintained by the central or state governments. Section 105 empowers the state government after obtaining the concurrence of the Chief Justice of the High Court to specify for each sub-division, a court to be a “Special Disability Court” for hearing and speedy disposal of suits of a civil nature which may be filed by or on behalf of persons with disabilities regarding infringement of their rights as a person with disability under this or any other law for the time being in force. Similarly, Section 106 provides for establishing “Exclusive Disability Rights Courts” for each district and each city with a population of 10 lakh or more as per the last census by the state governments with concurrence of Chief Justice of the High Court by notification in the official gazette. Section 107 stipulates that where a district has one or more Exclusive Disability Courts established under Section 106, their jurisdiction vis-a-vis that of Special Disability Courts specified under Section 105, shall be such as the state governments may, by notification in the official gazette, specify.
Now coming to offences and penalties, Section 126 provides that any establishment which contravenes the provisions of sub-Section (1) of Section 55, Section 56, 60 or sub-Sections (2), (3) and (4) of Section 62, shall be punishable with fine which may extend to Rs 50,000/- and with additional fine of up to Rs 1,000/- per day for each day of continued contravention after the date of the original order imposing punishment of fine. Section 127 dealing with offences by establishments entails that: –
- Where any offence under this act has been committed by an establishment, every person who, at the time the offence was committed, was the appointed head or was directly in charge of, and was responsible to the establishment for the conduct of its business, as well as the establishment, shall be deemed to be guilty of the offence, and shall be liable to be proceeded against and punished accordingly;
Provided that nothing contained in this sub-Section shall render any such person liable to any punishment provided in this Act, if he proved that the offence was committed without his knowledge or that all due diligence was exercised to prevent the commission of such offence.
- Notwithstanding anything contained in sub-Section (1), where an offence under this act has been committed by an establishment and it is proved that the offence has been committed with the consent or connivance of, or is attributable to any neglect on the part of any other officer of the establishment, such person shall also be deemed to be guilty of that offence and shall be liable to be proceeded against and punished accordingly.
Section 128 imposes a jail term of one year and with fine for indulging in hate speech which may be by words, either spoken or written, or by signs or by visible representation or otherwise. Section 129 provides: “Whoever assaults or uses force to any child or woman, intending thereby to dishonour or outrage modesty of that person, otherwise than on grave and sudden provocation given by that person, shall be punished with imprisonment for a term which may extend to two years and with fine.” Section 130 stipulates: “Whoever voluntarily or knowingly denies foods or fluids to any persons with disability or aids or abets in such denial shall be punishable with imprisonment for a term which shall not be less than six months but which may extend to three years, and with fine.”
Section 131 comes down heavily on sexual exploiters by providing that, “Whoever, being in a position to dominate the will of a child or woman with disability, and uses that position to exploit sexually to which the child or woman would not have otherwise agreed, shall be punished with imprisonment for a term which may extend to six years and with fine.” Section 132 provides:
- “Whoever performs, conducts or directs any medical procedure to be performed on a person with disability which leads to or is likely to lead to infertility shall be punishable with imprisonment for a period not exceeding seven years and with fine;
- Any person acting as a care giver of the person with disability, whether as parent or guardian or in any other capacity, lawful or unlawful, who does any act to facilitate, or negligently fails to prevent such medical procedure from being performed, shall be punishable with imprisonment which may extend to five years and with fine.”
Section 133 explicitly lays down: “Whoever voluntarily injures, damages or interferes with the use of any limb or sense or faculty of a person with disability, permanently or temporarily shall be punishable with imprisonment for a term which shall not be less than six months but which may extend to eight years, and with fine, or with both.” Further, Section 134 lays down very stern punishment for those indulging in forceful termination of pregnancy by providing that:
- “Whoever performs, conducts or directs any medical procedure to be performed on a woman with disability which leads to or is likely to lead to termination of pregnancy without her express consent shall be punishable with imprisonment for a period not exceeding ten years and with fine;
- Any person acting as a care giver of the woman with disability, whether as parent or guardian or in any other capacity, lawful, who does any act to facilitate, or negligently fails to prevent such medical procedure from being performed, shall be punishable with imprisonment which may extend to seven years and with fine.”
Section 135 which imposes a very heavy fine lays down: “Whoever fraudulently avails or attempts to avail or confer or attempt to confer any benefit meant for persons with benchmark disabilities on a person not entitled to such benefit shall be punishable with imprisonment for a term which may extend to two years or with fine which may extend to one lakh rupees or both.” The last section dealing with penal provisions that is Section 136 provides: “Whoever fails to produce any book, account or other document or to furnish any statement, information or particulars which, under this act or any order, regulation or direction made or given thereunder, he is duty bound to produce or furnish or to answer any question put in pursuance of the provisions of this Act or of any order, regulation or direction made or given thereunder, shall be punishable with fine which may extend to twenty-five thousand rupees in respect of each offence, and in case of continued failure or refusal, with further fine which may extend to one thousand rupees for each day, of continued failure or refusal after the date of original order imposing punishment of fine.”
The Bill is also very categorical in providing in Section 36: “Every child with benchmark disability, of the age of 6 to 18, shall have the right to free education.” Section 37 provides that all government institutions of higher education and all higher education institutions receiving aid from the government shall reserve up to 5 per cent of the total seats in each course for persons with benchmark disabilities, which include physical, and mental disabilities and leprosy cure. What laudable in this new Bill is that it recommends in Section 84 the setting-up of a National Commission for Persons with Disabilities to formulate regulations that lays down the standards of accessibility for the physical environment, transportation, information and communications, including appropriate technologies and systems. It also provides that similar bodies will be set up at the state and district levels. Also among other things, the Commission will take up issues that violate the provisions of the Act.
Most of these provisions were in the Bill drafted by a Committee chaired by Sudha Kaul but it came under scathing criticism for its infirmities. It is noteworthy that the Committee was constituted in April 2010 and it later came up with a draft Bill on June 2011. It is heartening to note that the disabled rights groups have also come up with their own draft of a law that seeks to repeal all existing four laws while the official draft substitutes only the Persons with Disabilities (Equal Opportunities Protection of Rights and Full Participation) Act of 1995.
Javed Abidi of the Disabled Rights Group pointed out recently: “Based on ‘all rights of all persons with disabilities with a framework for accountability’, the proposed draft, Rights of Persons with Disabilities Act, 2012 seeks to repeal the existing four laws on disabilities, to avoid multiplicity of authority and duplicity of institutions.” It is noteworthy that the Persons with Disabilities Act, 1995, the Rehabilitation Council of India Act, 1992, the National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999 and the Mental Health Act, 1987, are the four existing laws. Disabled Rights Group conveyed in no uncertain terms to the Union Social Justice and Empowerment Minister, Mukul Wasnik: “There is no synchrony between the various legislations that will impact the lives of persons with disability, and complete dissonance between the proposed Rights of Persons with Disabilities Bill and the proposed Mental Health Care Bill brought out by the Ministry of Health and Family Welfare.”
The draft vests the government with the responsibility of developing strategies and schemes to help persons with disabilities attain and maintain maximum independence, full physical, social and vocational ability, and full inclusion and participation in all aspects of life. The comprehensive rehabilitation services and programmes, particularly in the areas of health, employment, education and social services, will be available to persons with disabilities in the communities they live, and will extend to the rural areas as well. It is also made clear that products and technology to guarantee participation will comply with the standards and norms, as outlined in the accessibility strategy.
No ambiguity of any kind has been left to demonstrate that the government will make sure that persons with disability can, and will, effectively participate in political and public affairs on an equal basis with people, including the right and opportunity for persons with disability to vote and be elected, form and join organisations of persons with disability to represent people with disability at international, national, regional and local levels. Reasonable accommodation shall be provided in all cases where persons with disabilities exercise their right to franchise, the draft suggests.
The appropriate government shall make sure that every person with disability shall be entitled to support in decision making which would help the person exercise legal capacity with safeguards to implement his/her will, the draft says, while adding that the mechanisms for providing support in decision making shall be developed by the Disability Equality Commission. It is also made explicitly clear that a person with disability, who is denied the services, or faces discrimination in accessing any services and the facilities, shall be at liberty to make a complaint before the Grievance Redressal Committee. Also, in cases where a person with disabilities is of the opinion that he/she unable to comprehend and/or retain the information that is required to make a decision, support may be sought by that person in arriving at that decision. That person with disabilities may contact the Disability Support Officer, to seek such support, which will make sure that the person gets support to help him/her arrive at a decision according to his/her will. Suitable provisions have also been inserted to provide that in extreme situations, where it is felt that a person with disabilities is unable to comprehend and/or retain information to make a specific decision, despite all support options being provided, total support for the said decision for a fixed period of time may be provided by the Committee. It also must be reiterated here that there is a provision for the constitution of the ‘Disability Equality Commission’ to develop mechanisms to provide support to persons with disabilities, to live within their own families or independently. It has also been provided that if required, legal aid may be provided to persons with disabilities, to protect their rights on property.
Rahul Cherian who is with the Inclusive Planet Centre for Disability Law and Policy and has expertise in disability law, intellectual property law and technology law in his well-researched article published in The Hindu dated September 23, 2012 with the heading “The Disabilities Bill is a mixed bag” very elegantly writes: “The light at the end of the tunnel for India’s 100 million people with disabilities appears to be getting closer as the Ministry of Social Justice and Empowerment made public the latest version of the Rights of Persons with Disabilities Bill. This Bill which seeks to replace the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, attempts to bring India in line with the 21st century understanding of the rights of persons with disabilities as captured in the UN Convention on the Rights of Persons with Disabilities (UNCRPD) ratified by India. This version of the Bill is the last in a series of versions that were made public by the Ministry over the last two years.”
Amba Salelkar who is an advocate and fellow of Inclusive Planet Centre for Disability Law and Policy, Chennai in her enlightening article titled “Who needs a guardian” published in The Indian Express dated September 27, 2012 lays bare the glaring infirmities in this new Bill and also suggests the right remedy while questioning the need for a guardian in these words: “The formulation under the bill is confusing and fraught with danger. On the one hand, it recognises full legal capacity while on the other it states that all decisions must be made jointly between the person with disability and the limited guardian. It appears that unless the limited guardian also agrees with a decision, no decision can be made by the person with disability. This surely is not recognising full legal capacity. The bill also does not put in place the necessary safeguards to prevent abuse by the person providing support since there is no requirement that the arrangement be subject to regular review by a competent, independent and impartial authority or judicial body, as mandated by the UNCRPD. Perhaps the correct formulation of a solution on the question of “legal capacity” can come by tweaking the relevant provision in the Indian Contract Act, 1872. Under this Act, a contract is void if a party to the contract is, at the time when she enters the contract, incapable of understanding it and of forming a rational judgment about its effect upon her interests. This bar is not in any way related to persons with disabilities, since it applies even to a sane man, who is delirious from fever, or who is very drunk. Yes, some people with disabilities may require some support to make decisions, and provided this support is given, albeit with the proper checks and balances as prescribed by the UNCRPD, is there really a requirement for a guardian, limited or not?”
It is worth mentioning what The Hindu newspaper dated October 13, 2012 with the heading “Lower the barriers” writes: “The draft bill on the rights of persons with disabilities intended to replace the 1995 law is a daring attempt to combat historically rooted discrimination based on a person’s disability through legal guarantees of equality of opportunity. The wide ranging commitments in the area of employment are but one instance of an attempt at inclusion and empowerment. Foremost is the increase, up to five per cent, in the proportion of reservation in recruitment to all government employment. The two percentage point increase is perhaps appropriate, considering the greater number of disabilities that are to be accorded protection under the new law. There is also a private sector corollary to quotas in the form of incentives and disincentives for firms that hire disabled employees and those that do not. Establishments that comprise more than five per cent of the workforce from this category would be allowed to deduct the salaries of every additional employee from their taxable earnings. Conversely, those that fall below the prescribed minimum would be required to add to their taxable income an amount equivalent to the shortfall. The draft bill makes provision for the identification of posts suitable for disabled candidates and also for periodic review. While the identification of positions may raise awareness among employers on suitable avenues to create openings, this could also prove potentially restrictive, say, when applicants have the prerequisites for positions that are not listed. The new law should instead reflect current policy, wherein government departments are free to make additions, but not deletions, from a pre-determined catalogue of jobs appropriate for disabled aspirants. Such freedom and flexibility would be necessary to overcome procedural shortcomings that may hamper the disabled from taking advantage of new openings. Similarly, the current rotation system should be modified in a manner that vacancies do not lapse just because a candidate with a particular disability was not available. All such self-defeating procedures should give way to more proactive policy adjustments. The underlying objective of the proposed change is to harmonise current law with the letter and spirit of the 2007 United Nations Convention on the Right of Persons with Disabilities one which India was among the earliest to ratify. While initiatives in the arena of employment can critically alter the lives of the disabled, the extent of their realisation would depend on the provision of quality education and universal access. It is time the Centre moved towards expeditious enactment of the new legislation.”
Abhishek please make this article in the Box.
‘How do you do it ?’
THE POLITICS OF DISABLED SEX
A more inclusive and diverse understanding of sex is bringing queer theory together with a disability-rights discourse to legitimise what was previously considered ‘deviant’ or ‘incorrect’
If I could go back and counter the dialogue my mother and all the fiction I consumed taught me, I would tell myself a few sexual truths. The truths that media conceals with its over-sexualisation of everything and its overemphasis on a body beautiful standard that most people cannot live up to. I would explain that sexuality is not just sexual activity, and it certainly is not just heterosexual penetrative sex. Sexuality is intertwined in our whole personhood, it is an experience we have for a lifetime (or as sexologists often like to say, ‘sexuality is a womb to tomb experience’) and something that can be celebrated. To feel sexual urges and want to explore your body at a young or old age is typical. Sexual expression is a spectrum: we all ¬do not express it the same…Another big lesson I would tell myself is that sexuality is a human right that everyone is worthy of and everyone can find someone to be interested in them. This may sound like a lie, I would have thought it was a lie, but it is really not.
—‘What I Would Tell My Teenage Self About Sexuality’, Crip Confessions
As parts one and two of this series attempted to highlight, the presumed asexuality of women with disabilities is the result of a combination of factors and influences. From the pervasiveness of beauty ideals propagated by the advertising industry to a hierarchy of needs that places sexuality and sexual needs far below access or health concerns, there is an overwhelming unspoken consensus that women with disabilities simply do not want sex. Or in the event that they do want it, they’re just too ugly to get it. The consequences of these harmful assumptions are widespread, and begin to take root at a very early age in the life of a girl living with disabilities—right from her classroom.
Sex education is a much-wrangled-over debate in the Indian subcontinent, in which women’s bodies serve as the political and religious battleground for an issue that is supposedly against Indian Culture. As those on the broader left including women’s movements, HIV prevention programmes and educationalists continue to fight for the right to sex education—and subsequently against a monolithic notion of culture manufactured by those on the right who claim to be its gatekeepers—small gains have indeed been made. However, with teachers unwilling to go beyond the basics of menstrual management and reproduction—and managements that most often penalise them if they do — the levels and quality of sex-ed remain incredibly limited—or non-existent –in most educational institutions. And within this context of poor, badly managed programmes, there is one group of students that remains systematically excluded even from these meagre teachings—girls with disabilities. Based on the premise that they cannot—or should not—have children (there is still much to be done towards breaking the myth that ‘disability breeds disability’), that they are not sexually desirable, or that due to their impairment they cannot engage in ‘real’ sex, little has been done to include disabled girls within wider sex-ed programmes. Apart from preventing access to essential information on sexual health, hygiene and abuse, this exclusion sends a clear message to these young women right from the start of adolescence: you cannot experience life like other girls, and you will not grow up to be a ‘real’ woman.
These messages are institutionally reinforced throughout the life of a disabled woman. One major player in perpetuating these harmful myths is the healthcare system. Doctors, gynaecologists and nurses often operate under the assumption that a disabled woman is not sexually active—this leads to either misdiagnosis of conditions that could be linked to sex, or a closing of a potential space where women with disabilities could ask healthcare professionals questions related to their sexuality. Women are slowly coming forward with their experiences of being talked down to, having their aide or caregiver addressed rather than being directly spoken to, and feeling ashamed or embarrassed to ask questions about parts of their bodies that have been relegated as shameful.
Outside of institutional influences, however, there is still a deep discomfort around the idea of disabled people having sex, much of which comes down to what we ‘know’ to be the mechanics of sex. How does it work when your spinal cord injury means that there’s no sensation below your legs? What do you do when you can’t see your partner? How can a double amputee move their body in a way that could possibly please me? Sure, they can do ‘stuff’, but it’s not going to be ‘real’ sex, is it?
An anonymous interviewee in The Ultimate Guide to Sex and Disability (1) says, ‘In most movies they make sex look so clean and controlled, it makes me realise how much I’m not represented in what I see in the world.’ Our understanding of what sex is (and is not) is incredibly limited and limiting. Taught from an early age by families or sex educators that the sole purpose of sex is procreation (and everything outside that leads to AIDS, unwanted pregnancies or evil curses), penetrative sex is the singular lens through which a lot of sex (and definitely most sex in the Indian subcontinent) is viewed. This is then further combined with the sex we actually get to see: both mainstream films and pornography portray sex as happening between those with beautiful bodies, in a series of scripted heterosexual positions, and in incredibly clean way. And if anything is unclean or unstraight, it’s a fetish; a deviance. It is through these influential frameworks that our idea of ‘real’ sex is artificially constructed; however, artificial as it may be, it has very real consequences for those who cannot—or choose not to—participate in it.
‘So what is it exactly that you do?’ This ubiquitous question hasn’t only been aimed at people with disabilities. Homosexuality has been under the same interrogation for centuries. ‘What is this thing that you are? How can you do it that way and still call it sex? Sex is for us, not for you’ McRuer discusses the ways in which disability and homosexuality clearly share a pathologised past, where heterosexuality and able-bodiedness have both passed as universal frameworks for sex. Therefore, the bringing together of queer theory with a disability-rights discourse can be particularly useful in combating these ideas. Many queer women (and men, and trans people) have been fighting throughout the Global North to reshape and broaden discourses around sex to, very literally, include what they do. With the decriminalisation of homosexuality in India, these conversations are starting to take place at home too. Therefore, a queering of the definition of sex—where things that were previously considered ‘deviant’ or ‘incorrect’ are legitimised — can help shape an understanding of disabled sex that is inclusive and diverse. Disability and queer rights activist Eli Clare calls for not a definition of ‘real’ sex, but for real conversations around the sex that disabled people and queer people are having every day, in every part of the world. She says, ‘I mean the steamy, complex, erotic, sometimes pleasurable, sometimes mundane, sometimes mystical, sometimes painful, sometimes confusing behaviour, activities, and fantasies we call sex.’ Developing broader, more encompassing conversations around and attitudes towards what sex can be—and what it is—is empowering for all of us who experience our sexualities, sexual lives, and sexual desires as unsanctioned by the textbook/pornographic definition and limits of Sex.
As the conversation around sex and disability begins to take root in more spaces, we can observe its slowly manifesting effects on policies and approaches within society. Disability rights organisations that had never previously approached the subject of sexuality are now beginning work in the area. In a first of its kind workshop, Mumbai-based Voice Vision conducted a day-long series of sessions on sexuality and intimacy for the visually impaired community. From using anatomical models to demonstrate condom use to talking about issues of sexual violence, this seminar was revolutionary for both the participants and the professionals leading the session. Visually impaired activist Nidhi Garima Goyal blogs about the experience of organising the workshop: ‘At the end of the day…the participants were not only armed with information, but felt comfortable speaking about sexuality and abuse…The speakers…maintained that questions were not less or more than any session they had conducted for the sighted community. The only difference was the requirement of giving [visually impaired people] a platform and space in which to gain such understanding in an accessible format, and to constantly reaffirm the fact that [they] are sexual beings who are entitled to their own pleasures—just like anyone else’.
Initiatives like these are few and far between. But they are the beginnings of a movement towards ending the devaluation of the sexual experiences, desires, and abuse of women with disabilities. Whether in the classroom, in a hospital, or in a conversation, girls and women with disabilities must be recognised as having the same sexual rights as all of us. Eli Clare declares, ‘It’s time for us to talk sex, be sex, wear sex, relish our sex, both the sex we do have and the sex we want to be having.’ And for the rest of us, it’s time to start listening. (Infochange)