Finding love in an ableist world | Latest News & Updates at Daily News & Analysis

Gargi Gupta

In a society where the dice is heavily loaded against them, the differently-abled find that the insensitivity and ignorance they battle daily get amplified when it comes to romance and marriage. Gargi Gupta gets a sense of the challenges they face and how they cope

Preeti Monga was just six years old when she lost her vision. What followed next is a story more or less common to most differently-abled people in India – or used to be back in the 1960s, when Monga was growing up in Amritsar. She was chucked out of school in class VIII, and married off at 23 – "’Arrey, hamare baad koi toh ho isko dekhne wala (There should at least be someone to look after her after us),’ my parents thought," says Monga.

Except that it didn’t happen that way; her husband turned out to be abusive and a compulsive liar. That would have stumped many a woman, especially a visually-challenged one with two children. Not Monga. She got back to school, sat for the class X board exams via open school, learnt aerobics and started her own classes. Then, after becoming economically self-reliant, she filed for a divorce. "But I didn’t want to spend my life alone. I wanted romance, I wanted a partner," she says with disarming candour. And so, she proposed to a colleague she liked. Monga, at the time, was sales manager with a pickle brand. "He was ten years younger and said no. So I asked him again and again every day for 22 days until he said yes," she laughs. "When you want something, you should be ready to go for it. There’s nothing to feel shy about."

Preeti and Ashwini completed two decades of marriage this September.

It’s a heart-warming story, but Ashwini Monga is an exception in a country where the differently-abled battle staggering degrees of insensitivity and ignorance, attitudes that get amplified manifold when they seek a partner, someone to fall in love with, or marry.

More hurdles for women

Sweta Mantrii, a 29-year old freelance writer, editor and documentary filmmaker in Pune who has spina bifida, a condition where the vertebral column bones do not cover the spinal cord entirely. Mantrii studied in a regular school, has an MBA in communications management from a reputed private institute, worked and lived by herself in Mumbai for a year before coming back and has many friends, male and female. Yet, six years ago, a distant relative, presumably invited by her parents to help in their search for a groom for Mantrii, asked her to "Show me how you walk".

That was about six years ago, and her parents are still at it. Mantrii isn’t against marriage; she would like, like many girls her age, a partner, home, love, companionship. But it’s been a difficult quest marred by rejections and jolts to her self-esteem. Families of prospective grooms, says Mantrii, have "implied" to her parents that they expected a financial incentive in exchange for marriage.

"The problem is our social conditioning. Even men with disabilities expect to marry an able-bodied woman," says Versha Kewalramani, 29, a corporate lawyer in Mumbai who has a rare skin condition called epidermolysis bullosa, characterised by skin blisters. Kewalramani speaks of a gendered bias in marriage prospects of the physically-challenged. "While a man, if educated with a well-paying job, expects to marry an able woman, a woman is expected to only marry someone with a disability," she says. Kewalramani, by her own confession, has a "liberal, well-to-do" background, grew up in cosmopolitan Mumbai, went to a regular school and has a mother who pushed her to go out, travel the world, get a career and be independent. She’s just broken up with an able-bodied man she’d dated for a few months. This was her second boyfriend – her first had been a differently-abled man with whom, too, she broke up after a few months. "We found that we our personalities didn’t match," she says.

Romantic liaisons such as Kewalramani’s, with or without marriage in mind, may be fairly common especially among white-collar professionals in cities, but it is practically unthinkable for the differently-abled. As Mantrii found to her cost, her able-bodied male friends were fine with friendship, but were hesitant when it came to romance.

For those from somewhat conservative backgrounds, it’s often their own inhibitions that get in the way. "Unfortunately, most differently-abled people have a poor sense of dignity and self-worth, which gets in the way of finding happiness with a partner. And it’s the parents themselves who are responsible for not giving them a sense of self-confidence. Disabled members of a family are often not invited to come out and interact with visitors – as if they are a shame on the family," says Monga, who also counsels the differently-abled, including couples. "If their own families don’t give them confidence, then how do you expect them to overcome their inhibitions and take a chance with happiness?"

Neha*, a 29-year-old accountant with a real-estate firm, exemplifies such diffidence. Polio-affected and wheelchair-bound, she is apprehensive about marriage. "At home, I have everything to cater to my needs. My family is sensitive and cares for me. I am independent. I don’t know whether another person or family can be as sensitive to my problems. I’d rather be unmarried than find myself in an unhappy relationship. I am lucky my parents agree with me about this," she says.

Women with disabilities may have the dice loaded heavily against them, but men also face constraints when contemplating marriage or finding a partner. Forty-one-year old Ankur Dhir, who runs a small stationery business in Delhi and suffers from muscular dystrophy, says the thought of marriage has until recently been far from his mind. "It’s not just my disability. I first need to earn enough to support a wife and family before thinking of such things," he says. "It was hard because my parents died when I was young and I had little support. It’s only in the last two years that I feel I have the income and a household to offer a partner."

Blame it on the infrastructure

Others like Jatin Agarwal*, a software consultant in a Gurgaon MNC, want a partner who understands them and share the same values. "I’d like to get married to a differently-abled girl because I feel only someone who is differently-abled herself can understand me. But I also would like someone who is educated and independent and will fit in with my family," says Agarwal, who’s registered on several matrimonial sites in his search for a bride.

"The problem, even in cities, is that there are so few places where the physically-disabled can meet and interact," says Kalyani Khona, co-founder of Inclov, a matchmaking app for the differently-abled and people with long-term illnesses. Inclov launched early this year and runs an off-line initiative, Social Spaces, where the differently-abled who’ve registered on Inclov can meet. Khona, just 23 years old, points to her own difficulties in finding a public space with requisite accessibility facilities for the event: "How many restaurants in the city have ramps and toilet facilities for the disabled, or passageways wide enough for wheelchairs? In a place like Delhi, there are just one or two like that."

The discourse on the differently-abled, says Preeti Monga, has until now been largely limited to inclusive schools and colleges and making sure they find employment. "These are important, but more important, I feel, are avenues for social networking. After all, what’s the point if you don’t have friends or a family to come home to?" she asks.

It is needs like these that Inclov are helping to meet. In just nine months, the app has notched up 4,000 registered members and brought about one marriage. Monga herself runs a similar initiative called Fusion, which brings together the differently-abled and able-bodied so they can network for jobs or romance.

These are, as yet, isolated and periodic efforts. Inclov has had six such meet-ups in Delhi, Mumbai, Chennai and Bangalore, while Fusion meets have been held only in Delhi until now. But both Khona and Preeti Monga recognise the initiative needs to reach into small town India to be really effective. Inclov, for one, instituted an "ambassador" programme under which it will support anyone who volunteers to organise a Social Spaces meet-up. Monga, meanwhile, is trying to get the Rotary Club, with its wide network, to support Fusion so the differently-abled can take part in their meetings.

The idea is to get the differently-abled out and about, interacting with those like themselves and others, gaining in confidence. Marriage or romance can follow.

(*Names changed on request)

| Sun, 4 Sep 2016-06:35am , Mumbai , dna

ENIL Griefs with Sagamihara’s Community

 

ENIL Griefs with Sagamihara’s Community

Today, 26th August, Peter Lambreghts (ENIL Senior Officer to whom we said last goodbye yesterday) was going to pay his respect to the victims in Japan, one month after the attack of a man who killed 19 disabled people living in a care centre in Sagamihara – a small town near Tokyo. At least 25 more disabled residents of the care centre were injured. This attack once again brought forward the violations of human rights on disabled people, many of whom live with the threat of abuse and even murder.

ENIL with Peter Lambreghts as one of our lead activists has been continuously promoting the closure of all institutions – now and not later! Disabled people placed in institutions are often deprived of their legal capacity and of their right of choice and control over their own lives. Cases of abuse and neglect happen now and again in institutions in Europe and worldwide. The majority of these cases are not reported, since disabled people are often not aware of their rights and have no access to justice. Usually these cases become forgotten… too quickly. But not by us!

Disabled people have the right to receive support to be able to fully participate in and contribute to society. That can only happen if governments develop and invest in community-based services and promote independent living. An inclusive society is a better society not only for disabled persons but for everyone.

ENIL, in the memory of the Japanese victims and the memory of Peter, reminds once again governments in Europe and world-wide that institutions and care centres where disabled people are placed – often against their will – are in violation of human rights and the UN Convention on the Rights of Persons with Disabilities (CRPD). Article 19 of the UN CRPD recognizes the equal right of all disabled people to live independently and be included in the community.

Our thoughts are still with the victims of the attack, the ones injured and traumatised, and their families. May all rest in peace and may the governments react faster and stronger showing their commitment to making this world a place where human rights are guaranteed.

European Network on Independent Living – ENIL

An India Where the Disabled have a Choice

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Dr. Nirmala Narsimhan

The Roundtable on Digital Access to the Disabled held in Bangalore brought forward many issues related to the topic. Dr. Nirmita Narasimhan, Policy Director, Centre for Internet and Society speaks to Dr. Archana Verma about the problems faced by the disabled while using technology. Being herself partially visually impaired, this is an interview from an expert as well as the personal experiences of a person from the disabled group.

Q-Please throw some light on the issue of the inaccessibility of mobile apps to the disabled, since these have become essential for independent living today.

While mobile apps are fast becoming the preferred and often the only way to access services, these remain unavailable to a large section of the Indian population living with disabilities. This is because they are not designed in a way which conforms to standards of accessibility and cannot be used by persons using assistive technologies such as screen readers. Apps such as Ola, Uber, Big Basket, Make my trip, Flipkart, Myntra and most others are not completely accessible. The inaccessibility varies from total inaccessibility, where the screen reader remains absolutely silent and is unable to give any information to the user opening the app, to partially inaccessible, disallowing persons using screen readers from accessing complete information or from completing transactions. For instance, if one opens Flipkart, one hears a button labelled home page banner and then the screen reader just keeps saying button for whatever is pressed, without being able to give any information on what the buttons are for or what is written there. Similarly, if one opens Myntra, one doesn’t hear any information at all, just a series of clicks, at one point one hears buttons labelled for man, for women, for kids and then when one presses any of those, one is again greeted by complete silence. The Big Basket app also has problems such as unlabelled buttons and fields and makes it difficult to carry out transactions such as changing the quantity, changing the address etc.

It is rather sad that the IT industry fails to realise that persons with disabilities, a group which is the world’s largest minority and account for a very large percentage of our population can potentially be amongst the biggest consumers of these ICT products and services. Consider before the advent of technology, a blind person could not read mainstream books and newspapers, work in routine office environments, shop alone or pay bills, file returns etc. on his/her own. Now, when everything can be done on line and there is technology which can read out and assist blind persons to use computers/ phones themselves, they offer the opportunity to negate the limitations of disability. However, this is not happening because products and services are not designed and developed in compliance with standards of accessibility and universal design, resulting in them being ineffectual or useless for persons using assistive technology. If the apps and websites conform to accessibility standards, Developers need not test their software against each and every disability, which can get understandably complicated, they are automatically accessible to persons with different disabilities in one way or another.

While accessing necessary services and information itself is challenging and often impossible for the disabled, the ability to access and enjoy games like other people is completely beyond imagination, not even something one could dream of said a friend of mine. I asked my friend Dinesh Kaushal, an accessibility expert who heads development of NVDA, an open source screen reader for the blind in India what his experience with the new gaming app Pokemon Go was, which is all the rage nowadays and he said that it was completely inaccessible. There is absolutely no information on the game screen and the Android screen reader Talk Back is absolutely silent. And this according to him this is not uncommon in many gaming apps.

Q- Highlight some of the problems related to the inaccessibility of websites and content to the disabled.

Web site inaccessibility very often hinders a person using assistive technology from accessing information on the internet. A web site can be inaccessible for different persons because of different reasons, depending upon the disability. However, this can be solved by compliance with standards. Inaccessibility of websites also hinders accessing content on mobile phones or affects persons with limited bandwidth or elderly persons.

While progress is being made to make government web sites accessible, this has not yet been completely achieved. In addition, web sites of important services and organisations such as banks, health care, education etc. are often inaccessible. Often a person using a screen reader may come across an important document which is an image file and cannot be read by the screen reader or a deaf person cannot enjoy an audio visual clip because there are no sub titles. Web sites with frequent flashing and flickering, constantly changing pages, images without descriptions and unlabelled form fields and headings, audio visual media content without subtitles, image files of documents without alternate accessible format options continue to populate the Internet. Unless web site accessibility is taken seriously and is treated as a non-negotiable ingredient of a contract for web site development and maintenance, the Internet will continue to be inaccessible.

Q- Can you enumerate the policy and guidelines requiring web site accessibility and the large spread of non-compliance with them?

Although most transactions happen online today, the fact that websites do not conform to universal standards of accessibility render them unusable by persons with disabilities.
The World Wide Web consortium has had accessibility standards for web site accessibility for over a decade now and these have been adopted by many countries around the world. This standard is known as the Web Content Accessibility Guidelines (WCAG) 2.0. India also notified the Guidelines for Indian Government Websites (GIGW) which borrows from the WCAG 2.0 to ensure that government websites are accessible. The National policy on universal electronic accessibility was notified in October 2013 and requires conformance to standards of accessibility. It mentions W3C standards such as WCAG 2.0, ARIA and ATAG and identifies procurement as a route to make electronic infrastructure accessible. It also identifies strategies such as awareness raising, training, research and development of assistive technology as vital to implementation of the policy and allocates different roles to different stake holders, including to ministries, departments, private organisations, etc. Other commitments are to be found in the accessible India and digital India campaigns, commitments under the UN Convention on the Rights of Persons with Disabilities (UNCRPD) which requires government to make all ICT and Internet available and accessible to persons with disabilities and encourage private service providers to make their services accessible, Access to ICTs are also covered under the goals of the Incheon Strategy to make the rights real for persons with disabilities.

Q- Give us some information about the work of the Centre for Internet and Society (CIS) in the realm of the digital and technological accessibility for the disabled.

We are an eight year old organisation. Our accessibility programme works in multiple ways, which include the following –

(A) Policy research and advocacy (initiating and contributing to new and existing policy discussions to bring digital accessibility on the agenda: We started our work on 3 issues:

(a)Website and electronic accessibility – We produced research on what different countries have in terms of policies, guidelines and measures to promote website and electronic accessibility and worked with the Department of Electronics and information technology (DEITy) to formulate the National Policy on Universal Electronics accessibility which was notified in 2013. We also serve on the Implementation committee.

(b) Getting an exception into the Indian Copyright Act to allow conversion of books and other copyrighted works into accessible formats without the need to get permission from copyright holders. We provided research to MHRD on what other countries have in terms of copyright exceptions to promote access to published works for persons who are blind, have low vision or other print disabilities, we carried out a right to read campaign around India, provided submissions to the standing committee and finally were able to positively influence, along with other NGOs, the amendment to the Copyright Act in 2012.

(c) Aiding the negotiation of a Treaty at the World Intellectual Property Organisation which would facilitate international sharing of books for persons with print disabilities. We attended the negotiations at Geneva from 2010 and are a permanent observer there now, intervening and providing research advice on various issues. The Marrakesh Treaty to Facilitate Access to Published Works for persons who are blind, visually impaired or otherwise print-disabled was concluded in 2014 and India was the first country to ratify it. The 20 ratifications required to bring the treaty into force just got concluded on June 30th 2016 and the treaty will come into force from 1st September 2016.

(d) We also worked with the Universal Service Obligation Fund of India to launch a pilot scheme to fund projects for persons with disabilities in rural areas.

(e) Apart from the above, we have produced global reports with international partners like the International Telecommunication Union and G3ict on topics such as mobile accessibility and produced research which we sent to relevant government agencies on topics such as banking and financial inclusion, emergency and disaster management for persons with disabilities, accessible broadcasting and so on.

(f) We are implementing a project to develop text to speech for several Indian languages using an open source speak synthesiser called e-Speak and enhanced working of NVDA an open source screen reader which works with English and other Indian languages. We have also carried out several trainings on this software around the country.
We also provide advice to governments and organisations in other countries on ICT accessibility related issues. We have also organised trainings on web accessibility and other topics as may be required.

Q- What kinds of challenges are faced by the CIS in its work?

Limited resources – very few donors fund the kind of work we do although no one denies the criticality and usefulness of it. Neither do we fall within the bracket of a traditional organisation serving persons with disabilities, nor is accessibility as marketable a topic as say something like privacy and cyber security, hence to have a team which can actively carry on this work of research and advocacy, constantly responding to policy developments, attending meetings is very difficult and we are not able to do the kind of work we want.

Q- What kind of vision of empowerment would you propose for the disabled through digital accessibility? How can this vision be achieved?

My Vision- Every person with a disability in India is able to access the Internet, content and facilities through an ICT enabled device, be it computers or phones; where this access is unhindered by barriers and is instantaneous, not retrospective. Further, I speak for an India which is inclusive in the complete sense, i.e. accessibility standards are part of mainstream standards and Universal Design is the standard approach to creations and developments of all kind and not where separate considerations need to be made for the disabled on specific products and services. Where a person with a disability has a choice, as do the other citizens and not where they are given an option; they have access to the world at the same time on the same terms; where there is true equality and we live a life with dignity and pride.

How Can We Achieve It?

India has already taken certain steps to show her commitment to accessibility –

We have ratified the UNCRPD, are part of the Incheon Strategy to make the rights real for persons with disabilities and are in the process of passing a new Rights of Persons with disabilities legislation. We also have a National Policy on Universal Electronics Accessibility, Guidelines on Government Websites, the Accessible India and Digital India campaigns and the Smart Cities Mission. There is ample opportunity and scope for ensuring accessibility is implemented to give complete effect to these. Some of the areas where action can be taken include:

1. Web site accessibility should be taken up immediately since it affects access for all on using different platforms. The plan can identify number of web sites and different stakeholders and the time lines by which they are required to make their web sites compliant. Both self-certification as well as regular audits should be carried out to check for compliance.

2. Public Procurement is another critical tool in the hands of the government to ensure that all public infrastructure and all facilities/ resources/ products/ services procured out of public money or for the consumption/ use of the public should be made accessible. This is increasingly being adopted in countries around the world. India has a draft procurement bill, several organisations serving the disabled have given a request for the inclusion of accessibility considerations within the procurement bill, we hope they will be taken seriously. By including compliance with accessibility standards as part of performance criteria in all government contracts and calls for proposals and contracts for development and maintenance of products and services, we can ensure not only that web sites etc. become accessible, but that competence is generated in the market to create and market accessible products and increase choice in the market for persons with disabilities.

3. Government ensuring that accessibility requirements are integrated in all government schemes and programmes and accessibility should be considered no longer a matter of choice, but of necessity. There are budgets for different ministries and agencies, there should be a mechanism to evaluate that all the budget set aside for meeting the needs of persons with disabilities are expended meaningfully and not accumulated or go back to the main kitty unspent. There should be proactive disclosure on the part of all government agencies on their spending on accessibility/ disability and they should solicit advice from persons with disabilities and accessibility experts who are part of the committee to review budget spending.

4. Development of appropriate technologies- we need to ensure that enough resources are pumped towards creating our own research and development community to support development and maintenance of assistive technology that caters to needs of specific groups. Open source solutions are desirable for a country like India because of the opportunity they offer for deployment, customisation and improvements.

5. Accessible Smart Cities- The Smart Cities Mission should immediately ensure that their advisory panel includes accessibility experts and that the smart cities which emerge as part of this initiative are inclusive- this is the ideal opportunity to build an accessible city, universal design should be the basic principle on which these smart cities are developed; if this is not done, then there will always remain two worlds- one for the world at large and one for persons with disabilities, and the disparity between the two will always continue.

6. Finally the most important advice I would reiterate is the inclusion of persons with disabilities across all work of the government – only then will the accessibility perspective be represented and taken into account everywhere. Otherwise we may have a situation where accessibility is either missing, or where projects are being implemented to aid the disabled, which are totally meaningless or inappropriate and only serve to waste precious resources, time and effort.

Q- What measures do you suggest for making digital accessibility available to the disabled people across the divides of class, gender and more developed and less developed regions?

Digital accessibility should be implemented at the levels of content, user interface and end user device. Hence accessibility of documents and information on the Internet should conform to standards of accessibility, such as EPUB 3.0, html etc.

User interface-WCAG 2.0 for websites is a must for any device to function effectively. Assistive software must be completely accessible. For instance, it is not uncommon to find that an ATm which is termed ‘accessible’ actually needs the input of a sighted person at some stages of the transaction while some other points are completely prompted through audio.   In such a case, the blind still cannot use this.
Schemes under the USOF and others may be used to provide devices and connectivity to persons with disabilities in rural and far flung areas and also targeting specific user groups such as women. For instance a project under the USOF to promote women entrepreneurship in rural areas by providing them with a mobile phone can easily be replicated for disabled women. They could be funded for initiatives such as operating public internet kiosks or public phone booths etc. Schools in villages could be provided with computers fitted with assistive technology (hardware and software as may be required) s that disabled children and teachers have access and exposure to technology.

Providing mobile phones to all persons with disabilities will go a long way to open up the world of books, information, communication and access to emergency services to persons with disabilities.

Common Services Centres throughout the country are an excellent way of reaching persons with disabilities and providing them access to technology. By providing assistive technology on computers there, which is not at all inexpensive if one were to use free and open source software such as the NVDA screen reader and one trained person to impart training to the disabled, who can also be a person with a disability, we can make a lot of progress in terms of both building trained capacity and providing access to technology for persons with disabilities. Private employers and organisations also have a critical role to play in promoting accessibility for the disabled.

DQINDIA Online

Disability and life: can you be friends with your PA?

Rupy Kaur is a young, British Asian, disabled woman, who is very independent and can be feisty when needed (so she says!). She is writing for DH on some of the experiences that happen to her on a day-to-day basis, focussing on relationships with PAs.
#DHgurus
My last blog concentrated on what can go wrong with the PA relationship but this blog concentrates on whether it’s a good idea to be friends with your PA.
When I first became a user of direct payments, the council initially provided me with ‘carers’. It was a really odd relationship. Different people used to come in and out and there was something not right about it. I remember it being very clinical. I felt like I was this dirty thing that just needed getting out of bed. They were coming to my house in what looked like a nurse’s outfit, they had to wear gloves and an apron with all the tasks that they did. Making conversation was really hard and they never really spoke about themselves. The relationship was very clear; they were the professionals helping yet another disabled person get out of bed. You knew that they had been told not to form any relationships with any of the clients and it was all very PC. From this I learnt that things needed to be a bit more personal (and drew my own conspiracy theory that these ‘carers’ were actually robots).
Fast forward a few years later where I became the employer of my own PAs. At the time, I thought it would be a very good idea to employ one of my friends to be my PA. What could go wrong? We had been friends for several years and she knew – well I thought she did – exactly what I needed. After the first month I realised that it was not going to work out. She would decide to take days off without telling me and I felt bad for asking her to complete tasks as I felt that I was abusing our friendship. From this I learnt never to mix business and pleasure.
Through trial and error, I think I have found a good mix in terms of how to be friends with your PA whilst keeping it professional. Although I understand that the care industry is taught to not become too close to the service users, I personally believe that when it comes to assisting people in the community full time, not getting close can actually be a dangerous trait. PAs and people who use PAs see each other nearly every day and therefore spend a lot of time together. It’s only natural for a bond to form and if a bond does not form then I think that’s a bit odd. At the end of the day, you are involved in each other’s lives. You will know when your PA is feeling a bit down and vice versa. It’s healthy to form an open relationship where you can be friendly whist acknowledging that each of you have your own lives.
I personally prefer to recruit PAs who have had no experience of support before. That way you can mould them to how you prefer them to work, as you’re an individual with your own individual needs and they don’t come with any preconceived ideas of what assisting is about. I also employ PAs who have similar interests to me and have maybe been to university as they tend to understand my life a bit better, as they have had similar experiences. At first I am very strict and repetitive in terms of how I like things to be done. However, once my PAs have grasped my routine, I tend to let my guard down a little. This is where the friendship begins as my PAs understand what needs doing and what the boundaries are, but also know that we need a good relationship.
Some of my best PAs have become lifelong friends. I therefore think it is possible to be friends with your PAs as long as you both know what the boundaries are.
Until next time,
Rx
By Rupy Kaur
Disability Horizons

Honor promise to disabled

VG
The Brownback administration promised that privatizing the long-term care of Kansans with disabilities would improve service. But parents who spoke at a forum last week say care is worse.  State lawmakers and federal officials need to follow up on these reports and, if they are accurate, demand immediate changes.
Parents of Kansans with severe disabilities begged the Brownback administration not to privatize long-term care. They wanted to keep the previous partnership between state and local governments and service providers, and they didn’t trust for-profit insurance companies to look out for the best interests of their sons and daughters.  But the administration insisted that it knew best, and promised that care and outcomes would improve.
At a forum in Topeka Tuesday hosted by the National Council on Disability, parents described having to fight to prevent significant reductions in care and being bullied by care coordinators.  Johne Green, whose daughter has a brain injury, said she had to hire an attorney and threaten lawsuits to prevent service cuts.
Rocky Nichols, executive director of the Disability Rights Center of Kansas, has a son who has a traumatic brain injury. Their care coordinator has a caseload of more than 100 people.  “It’s not the same level of care,” he said. “The services just are not the same and those services are desperately needed.”
Rosie Cooper, executive director of the Kansas Association of Centers for Independent Living, said parents who have objected to service reductions have been told their service hours would be cut more if they appealed. She said one family was warned not to testify at the forum.  “Their care coordinator said, ‘If you testify, I will cut all of your hours,’” Cooper said. “And it scared them to death.”
Kari Bruffett, secretary of the Kansas Department for Aging and Disability Services, spoke in support of privatization. She cited a 27 percent drop in emergency room visits for people with disabilities who receive home- and community-based services.  Bruffett also pointed to a reduction in the number of disabled Kansans on the waiting list for services. But Nichols countered that the number of people receiving services has plummeted, which he blamed in part on all the bureaucratic hurdles.
“It just seems to be this constant battle to get what you’re entitled to,” Nichols said. “There is a lot of battle fatigue.”  Rep. Jim Ward, D-Wichita, who led an unsuccessful legislative fight to prevent the privatization of long-term care, said the complaints voiced at the forum are not isolated incidents. He has heard similar concerns from area parents and service providers.
KDADS officials say they are looking into the complaints, including the claims of being threatened. But state lawmakers and federal Medicaid officials also need to investigate and make sure the state is honoring its promises.

Will the new Bill benefit the freshly included disabilities?

Amita Dhanda[1]

The Rights of Persons with Disabilities Bill 2014 has got caught in the crossfire of different disability groups. Whilst one body of opinion holds that the Bill is regressive, incoherent and needs to be heavily reworked before it can be enacted; the other perspective is that the Bill may not be perfect but at least it provides something to those who are not included in the 1995 Act. People propounding the something is better than nothing logic, also pertinently point out, that while persons with disabilities who are included in the 1995 Act can afford to wait, that luxury is not available to them.

Thus, the strongest case for passing a less than perfect legislation comes from persons with impairments which are not covered by the 1995 Act. Significantly, the Bill of 2014 has changed the definition but other provisions, which need to be incorporated in theBill, to ensure that the freshly inducted persons with disabilities obtain all the entitlements (including job reservations) have not been included. It is submitted that without those provisions being included the expanded definition is going to be of little benefit to the freshly included disabilities.

To explain: the contract, employment and service laws question the legal capacity of persons with psychosocial , intellectual and developmental disabilities. These laws in both rule and practice hold that persons with the aforementioned disabilities do not possess the cognitive capacities to enter into contracts, or sign employment agreements or be recruited into service. The new Bill does not unequivocally recognize that all persons with disabilities have the capacity to act on an equal basis with others in all areas of life. The original Bill accords no recognition to legal capacity and the proposed amendment requires the “appropriate Governments to ensure that the persons with disabilities enjoy legal capacity on an equal basis with others, in all aspects of life to have equal rights as any other person before law”. This formulation makes legal capacity not a right of persons with disabilities but a duty of the appropriate government. Thus the legal capacity has been made dependent on how effectively the government ensures it; whereas what was required was for the statute to state that notwithstanding anything stated in any other law all persons with disabilities have legal capacity on an equal basis with others in all aspects of life. Without an unqualified recognition of legal capacity, all the freshly included disabilities will not be able to obtain the benefit of job reservation. This vulnerability is further enhanced by the fact that the legislation permits departments to seek exemption for particular posts from the purview of reservation. In the face of the social stigma faced by psychosocial, intellectual, developmental and multiple disabilities, it is not great leap of imagination to deduce which are the disabilities that would most face the axe of exemption.

Keeping in view the large scale diversity which exists within the freshly included disabilities be it autism or multiple disabilities, it was necessary that the denial of reasonable accommodation should have been recognized as discrimination. This was needed because unlike accessibility which speaks about how the built and virtual architecture, goods and services, transport and communication become disabled friendly; reasonable accommodation addresses the needs of individual persons with disabilities be it a particular kind of work furniture or flexibility of time and workplace. The Bill of 2014 only places an obligation on the appropriate government to ensure reasonable accommodation. It confers no right on the person with disability. The question of reasonable accommodation has been a hugely disputed question even in developed countries. The American disability jurisprudence is full of cases on the meaning of ‘undue burden’ and a ‘disproportionate cost’. This was in the context of an Act where the applicability of the concept was clearly provided. In the Bill of 2014 on the other hand the applicability of the principle itself has been rendered disputable. Reasonable accommodation has been defined but very sparingly used in the legislation. The right to education chapter is the only place where the legislation speaks of reasonable accommodation (and there too, as something the state shall ‘endeavour’ to provide, not a right); otherwise it only mandates appropriate environment. There is no mention of reasonable accommodation in the employment chapter. Without recognition of the rights of legal capacity and reasonable accommodation reservation one of the strongest rights created for the freshly included disabilities has been placed on shaky foundations

The non recognition of the right to legal capacity and reasonable accommodation in the Bill of 2014 is further endangered by the fact that the new law does not override existing disqualifications in other laws. Instead it states that the provision of the law will be in addition and not in supersession of existing laws. This means that all the existing laws by which persons with disabilities are disqualified from exercising their rights to contract would survive, and in the face of those provisions, the freshly included persons with disabilities would be hard put to avail their new work and livelihood entitlements.

The above analysis shows that the rights of the freshly included disabilities would be disputed and not self executing. With such a large number of unclear provisions, persons with the freshly included disabilities would need to continually activate the courts to obtain their entitlements. Since the equality and non discrimination provisions of the legislation are most meagre, what interpretations the courts will make, could be anybody’s guess. . It is important to appreciate that the task of creating positive jurisprudence under the persons with disabilities Act 1995 was an uphill task. Before the good judgements started to be pronounced a large number of regressive ones were also made. The Courts have helped save a weak 1995 Act but the process of strengthening the law with the aid of the courts was not an overnight affair. In the face of this reality it is pertinent to ask whether it is desirable to go ahead with an evidently flawed law and then take the next 20 years to strengthen it by using the courts; or bring out a sound law and then use courts wherever required to ensure that it is duly enforced.

It could be contended that even if the rights parts of the 2014 Bill is weak, inclusion would assist the freshly included disabilities to obtain benefit of the programmatic part of the legislation. With the number of chronic conditions that have been included a strong scheme of medical insurance was required. However there is no such mention in the Bill. The jurisprudence built under the 1995 Act has not restricted the benefits of reservation in higher education institutions to the specified disabilities alone and same holds for disabilities acquired at place of work. Thus the social security schemes are the only possible benefit which the freshly included disabilities may obtain; but the question is whether the possible benefit could offset the costs that the community would incur with an incoherent law? If the people for whom the case for accepting a weak law is being made, would make no real gain, then is it fair to ask them to accept a deficient law even when models for self enforcing strong laws exist.


[1] Professor of Law and Head Centre for Disability Studies, NALSAR , University of Law, Hyderabad.

Denying the disabled

Indian courts have shown that they are ready for progressive interpretations of the law on the rights of persons with disabilities. Therefore, any new law that aims to replace the Persons with Disabilities Act, 1995, needs to be a significant improvement on it. By JAYNA KOTHARI

FRONTLINE EMPLYMENTSINCE 1996, when the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (PWD Act), came into force, by far the majority of cases taken to court have been about equal opportunity in public employment, that is, reservation of jobs for persons with disabilities and related matters such as promotions, identification of posts and eligibility. This struggle is in many ways not that different from the caste and gender battles for affirmative action in government employment. For any marginalised group, including persons with disabilities, equality in employment is a benchmark for full participation in society.

In Union of India vs National Federation for the Blind and Others, the Supreme Court passed on October 8 a landmark judgment in this battle on reservation of jobs for persons with disabilities. The PWD Act, though a restricted statute mainly concerned with providing reservation in jobs and seats in public employment and education, has slowly been nudged by courts, lawyers and disability rights activists to become far more progressive than was ever imagined. Section 33 of the Act states that “every appropriate government shall appoint in every establishment such percentage of vacancies not less than 3 per cent for persons or class of persons with disability…”. Section 32 requires the appropriate government to identify jobs for persons with disability and review the list of identified jobs every three years.

In spite of Section 32, the reality on the ground since 1996 has been that hardly any jobs were identified by the governments as suitable for persons with disabilities. A 2009 World Bank report, titled “People with Disabilities in India: From Commitment to Outcomes”, found that only 10.2 per cent of the posts in all Ministries/departments and public establishments had been identified as suitable for persons with disabilities. The situation in 2013 is not very different. In a 2010 judgment, in Govt. of India through Secretary and Anr vs Ravi Prakash Gupta & Anr, the Supreme Court held that non-identification of posts could not be a reason for the government to evade its obligation to reserve 3 per cent of posts for persons with disabilities.

In the National Federation for the Blind case, the core question was whether the 3 per cent reservation should be calculated on the basis of the cadre strength or the number of vacancies in the identified posts. Cadre strength refers to the total number of posts in the cadre. At present, if at all reservation for and appointment of persons with disabilities are made, it is only on the basis of the vacancies that arise in “identified” jobs, which are far fewer than the total number of posts in the cadre. The Supreme Court held that from a bare reading of Section 33 it was clear that the intention of the legislature was that the 3 per cent reservation was computed on the basis of total vacancies in the cadre strength. This interpretation is significant as it will lead to an unprecedented increase in the number of appointments in State and Central government jobs for persons with disabilities.

One of the most interesting observations of the court in this judgment pertains to reservation in the private sector. Section 41 of the Act states that incentives should be given to public and private establishments so that they provide 5 per cent reservation for persons with disabilities. The Supreme Court held that “on a conjoint reading of Sections 33 and 41, it is clear that while Section 33 provides for a minimum level of representation of 3 per cent in the establishments of appropriate government, the legislature intended to ensure 5 per cent of representation in the entire workforce both in public as well as private sector”.

This expansive observation of the court has gone unnoticed amid the excitement over its statement on reservation based on the cadre strength. This opens up new avenues for implementing reservation for persons with disabilities in the private sector as well. This opportunity was passed up by Justice Ravindran in the judgment in Dalco Engineering Pvt. Ltd vs Satish Prabhakar Padhye & Ors, which stated that the definition of “establishments” under the PWD Act did not include private companies. Now, however, the full Bench of Justice P. Sathasivam, J. Desai and J. Gogoi has clearly moved ahead by observing that the intention of the legislature was to ensure reservation of posts for persons with disabilities not only in the public sector but in the private sector as well.

Draft Bill, 2012
This judgment comes at the right time as the Draft Rights of Persons with Disabilities Bill, 2012, is pending consideration. The Supreme Court even relied on the Bill for its reasoning. However, with regard to equality in employment rights for persons with disabilities, the Bill does little to improve upon the provisions of the PWD Act and does not include the exciting new possibilities that the Supreme Court judgment promises. It does not mandate reservation of jobs in the private sector at all for persons with disabilities although this was clearly included in the draft of 2011. Unless the private sector is mandated to reserve jobs for persons with disabilities, it is unlikely that their conditions of employment in the country will change significantly. If one were to review any significant disability rights legislation in other jurisdictions, one would notice that all of them contain employment obligations for the private sector as well.

This has become even more urgent now as India has ratified the United Nations Convention on the Rights of Persons with Disabilities. Perhaps, the Supreme Court decision will prompt a revision of the relevant provisions in the Draft Bill. The Draft Bill also needs to address the problematic requirement of “identification of jobs”, which has been reproduced from the PWD Act. Identification of jobs is a concept that is considered outdated by disability rights activists the world over because it has a history of segregating persons with disabilities into the most menial jobs available, making it difficult for them to apply for other jobs. In the last century, the strategy of identifying particular professions for persons with disabilities was practised in the United Kingdom. But, as Anna Lawson, professor at Leeds University and author of Disability and Equality Law in Britain: The Role of Reasonable Adjustment (Hart Publishing, 2008), points out, the occupations that were selected were of low status such as car park attendants and lift operators. In associating disabled people with such jobs, there is the danger of creating or reinforcing negative stereotypes about them and their abilities.

For example, in India, the stereotypical jobs reserved for the blind and persons with low vision are those of music teacher and telephone operator. These difficulties were recognised in the U.K. as early as 1956 by the Piercy Committee in its report of the Committee on the Rehabilitation, Training and Resettlement of Disabled Persons, and although initially the disabled community supported the strategy of identifying certain jobs for its members, such schemes were finally abolished.

In India, the battle for reservation of jobs has often been stalled by the government’s not identifying posts as suitable for persons with disabilities. Such identification is often restrictive and arbitrary; for example, in Group A, the job of an agricultural scientist specialised in econometric analysis is identified as being suitable for an individual who is blind or has an orthopaedic disability but not for someone with a hearing disability. There is also a great variance between the Central government and different State governments on what posts are suitable for persons with disabilities, and this has led to intense litigation.

As the World Bank report says, the list of identified jobs is based on the assumption that the characteristics of impairment are the exclusive determinants of an individual’s ability to hold a position at a particular skill level and such identification ignores the potential influences of individual characteristics (motivation, age at disability onset), the person’s access to employment services, and the characteristics of the workplace and labour market. Even though there is a statutory obligation to identify posts, what posts are identified is left to the discretion of the government, which decides on the basis of the nature of the posts and its requirement. The government often conveniently denies people with disabilities jobs by not identifying enough posts in each department for them. Thus, the whole concept of identification of posts is problematic. The Supreme Court recognised this in its recent judgment, saying: “[E]xperience has shown that identification has never been uniform between the Centre and States and even between the departments of any government. For example, while a post of middle schoolteacher has been notified as identified as suitable for the blind and low vision by the Central government, it has not been identified as suitable for the blind and low vision in some States such as Gujarat and J&K, etc.”

Reasonable accommodation
Unfortunately, the requirement of identification of jobs is retained in the Draft Bill, and Sections 32 and 33 of the PWD Act are reproduced, with the only difference being an increase in the reservation from 3 per cent to 5 per cent. If this requirement is removed from the Bill, this, coupled with the obligation the Bill places on the employer to provide “reasonable accommodation”, every job could potentially be suitable for persons with disabilities. The concept of reasonable accommodation, or adjustment, lies at the heart of civil rights advancement in the context of disability. Its significance is that it is a way of accommodating difference. A 2004 baseline study by the European Union Network of Independent Experts of Disability Discrimination, titled “Disability Discrimination Law in the E.U. Member States”, noted: “The notion of ‘reasonable accommodation’ is individualised and involves the person with a disability in an interactive dialogue with the employer to discover the right kind of accommodation needed in the overall circumstances of the case.”

Essentially, the concept stems from a realisation that the achievement of equal treatment can only become a reality when some reasonable allowance is made for disability in order to enable the abilities of the individual concerned to be put to work. In employment, it is the duty of the employer to make reasonable accommodations to any physical features of the premises or to the duties of the job which would place disabled persons at a substantial disadvantage in comparison with those who are not disabled. As stated in the E.U. report, reasonable accommodation as provided in other legislations could include adjustments to premises; reallocation of duties; redeployment to an existing vacancy; alteration of working hours; reassignment to a different place of work; allowing absence for rehabilitation; assessment or treatment; training; acquisition of equipment; modification of equipment, instructions, reference manuals and testing or assessment procedures; and provision of a reader, interpreter or supervision. Thus, the need to identify jobs would not arise at all as every job could be done by a person with a disability. With India ratifying the U.N. Disabilities Convention, the concept of reasonable accommodation has not only been brought under the Draft Bill, but also recognised by the Bombay High Court in Ranjit Kumar Rajak vs State Bank of India.

Finally, only token improvements to the PWD Act have been made in the Bill. Instead of the seven disabilities stated in the PWD Act, the Bill provides for 5 per cent reservation of jobs for persons with “benchmark disabilities”, which means those found with 40 per cent or more of the specified 18 disabilities. However, the provisions for reservation of jobs only mentions that out of the 5 per cent of jobs, with 1 per cent each being reserved for persons with blindness and low vision, hearing impairment, locomotor disability, autism and intellectual disability, and mental illness. These provisions do not adhere to the progressive social model of disability, which does not view disability as a medical impairment (with 40 per cent or more of a certain characteristics) but as a form of discrimination due to social and environmental barriers. If these medical models of understanding disability are reproduced in the new law, one can hardly say that the Bill is in conformity with the U.N. convention, which was supposed to be the basis for the whole drafting exercise.

The Supreme Court decision signals that Indian courts are ready for progressive interpretations of the law on the rights of persons with disabilities. These interpretations have breathed life into the PWD Act and transformed it from a limiting statute into a legislation that has been successful in changing the lives of persons with disabilities, at least in the field of public employment. This judgment bears in it the seeds for further reform. This requires a serious reconsideration of the Draft Bill, which needs to take all these concerns into account. The disability rights movement has worked hard for the last 17 years to make the PWD Act what it is today, and any new legislation that replaces it needs to make a significant improvement to it.

Jayna Kothari is an advocate practising in the Karnataka High Court and a director of the Centre for Law and Policy Research. She is the author of The Future of Disability Law in India and can be contacted at jayna.kothari@clpr.org.in

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