This-Ability Series

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of
Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Trinayani Logo

TRINAYANI is a notprofit NGO working with a vision towards creating mass awareness about Disability Issues, hoping to alter perspectives on the strengths, problems and issues faced by persons with disability. We believe that neglecting the cause of including disabled people in the mainstream of social life, happens more out of ignorance, misinformation and exposure to appropriate visibility of people with disabilities. OUR aim thus is to communicate APPROPRIATE INFORMATION on disability issues, to portray messages which convey the fact that Diversity is Good, Diversity is Needed and Diversity adds Value to our lives.

Our recent Trinayani initiative titled This-Ability are a series of articles which that explores the intriguing lives of persons with disabilities beautifully written. We all need to be saved from having a single story of what persons with disabilities are because the consequence of a single story is that it robs people of their dignity and it makes the recognition of our equal humanity difficult and it also emphasizes how we are different than how we are similar. The single story of disability in our minds is what leads to prejudices and stereotypes. So, through these articles we are trying to weave many stories about persons with disabilities. Hope you will enjoy reading them.

Warm regards

Ritika Sahni
Founder-Trustee

Registered off:
828/1, Block-P, New Alipore, Kolkata-700053 Ph: 033-24007348.
Mumbai Off: 67/666 Gulmohar C.H.S. M.H.B colony, 90 Feet Road, Mahavir Nagar, Kandivali West Mumbai: 400067.
Tel No: 022 65266777, +91 9769357390
Website: http://www.trinayani.org
Email: trinayani.contact@gmail.com

Language that leaves you speechless

by Malay Desai

Sunil Sahasrabudhe is a teacher, living like millions of others in a bourgeois apartment in suburban Mumbai. On routine evenings, his wife Shweta is found chatting away with neighbours while he works on his laptop inside, the sole room lit up by their sprightly daughter Kimaya’s presence. The trio’s tightrope walk in maximum city isn’t any different than that of other one-child families, their disagreements being around preferences, behaviors, inflation… the usual. Why are we talking about them here, then? Here’s why: Sunil is deaf. So is his wife. Their daughter is not.

On a warm evening last week, we visit the trio. We could’ve emailed Sunil our questions – stuff like ‘How has the communication system evolved at home?’ and ‘What challenges did he overcome to complete his MA abroad and resume his career as a special trainer?’ But that would’ve meant not noticing things such as his door-bell connecting to a light bulb; stickers of a recent ‘No TV Day’ campaign on a cupboard, a tiny validation of them not having a TV at all… and most importantly, that Sunil and Shweta can have nearly perfect, smooth conversations with anyone, thanks to their extraordinary lip-reading skills.

Sunil has been deaf from birth, just like his parents and younger brother Sujit. The Indian Sign Language (ISL), a world where there is a gesture for every alphabet and action, is an intrinsic part of him but unlike many other deaf people (around 1 in 12 in India) who use it, he is proficient enough to train its teachers. As Project Coordinator (Technical) @ Indian Sign Language Cell of AYJNIHH Mumbai he ends up not only teaching the language, but also instilling valuable self-worth among students.

It was during his early teaching stints in 2000 that one demure student came by and subsequently fell in love with him. Shweta blushes while reminiscing those days. “I was confused about my identity before that,” she admits, after telling us that nobody in her immediate family is deaf. “But his ways gave me confidence and I began to like him. It wasn’t strange liking my teacher… we connected as he was deaf too!” she smiles.

In under a year-and-a-half came Shweta’s turning point, marriage. “It’s not unusual, deaf people marry only deaf people!” she explains. The most interesting, and without doubt most beautiful chapter of their lives opened in the form of their child. “We weren’t really concerned about her being deaf too, we’d love our child anyway,” Sunil tells us. But the first-time mother was more hurt by the behaviors of those around them. “On the day of her delivery, someone came and clapped near her to check if she was hearing,” she recalls her hurt. These ‘clapping’ types didn’t cease to turn up even later, adding to the parents’ frustrations.

Kimaya, perhaps the brightest six-year-old we’ve ever met, loves her abacus, playing online games and going out. Being a CODA (child of deaf adults), she is sharp with ISL and understanding all the non-verbal cues from her parents. Her childhood does have an unusual number of visits to the ENT specialist though, for regular checks. They might not admit, but the parents seem overtly attentive to this and even a slight niggle in her ear ticks off paranoia.

Our most intriguing element about this family is the most routine one for them. They communicate with others vocally, albeit with an occasional mispronunciation or tremor, but sometimes have to request the speaker to write in case of misleading words (we had to do this just thrice, for our chat which lasted an hour). The couple is better off with sign language among themselves, which means that their fiercest arguments are silent. “I do rant when I’m angry though!” Shweta says, admitting to be the more short-tempered one. “When I was abroad, we would fight in sign language over webcam chats!” Sunil laughs.

Technology has changed Sunil’s and several million deaf people’s lives in astounding ways that we can ever imagine. India’s telecom revolution has made it possible for them to have video calls (on 3G networks) and use signs, a big leap from two years ago when mobile conversations only meant texting. Efficient advocacy has improved Mumbai’s infrastructure for the disabled too. “The bigger handicapped coaches in trains are finally giving us the space we deserve,” Sunil raises his eyebrows for emphasis.

As a man of multi-layered communication, what language does he revel in the most we ask, and pat comes the reply, ISL. “I have a problem with deaf kids being forced to learn speech training. They’re never going to be perfect. Even I’m not! Why should they undergo all the trouble just to communicate with the hearing world?” he argues.

Perfect sign language is any day better than imperfect speech, we learn. But more importantly, as we bid the Sahasrabudhes goodbye, we also learn that language is a luxury some can afford, but some others are rich anyway.

(An initiative of Trinayani, a nonprofit NGO founded by Ritika Sahni, the THIS ABILITY articles celebrates the intriguing lives of persons with disabilities. Trinayani works towards Disability Awareness and Support, communicating through workshops/seminars, print, radio, films and other electronic media.  Visit www.trinayani.org or write to us at trinayani.contact@gmail.com)

The Articles in the Series “This-Ability” are copyrighted material of Trinayani.  This Blog is carrying the series on the request of Ritika Sahni, Founder Trinayani.  Any queries or request to publish these articles please contact Ritika Sahni. The owner of this Blog is not responsible for any copyright infringement

Nilesh Singit

Deafness shaped Beethoven’s music

Progressive deafness influenced Beethoven’s compositions, prompting him to choose lower-frequency notes as his worsened, scientists said.

Beethoven first mentioned his hearing loss in 1801 at the age of 30, he had problems hearing the high notes. By 1812, people had to shout to make themselves understood and in 1818, he started to communicate through notebooks. In his last few years before his death in 1827, his deafness was apparently total.      Writing in the latest issue of the British Medical Journal, scientists in the Netherlands dissected Beethoven’s string quartets.

The experts looked at the first violin part in the first movement of each quartet, counting the number of notes above G6, which corresponds to 1,568 Hertz.      Use of higher notes decreased as the deafness progressed, they found. To compensate, he used more middleand low-frequency notes, which he could hear better when music was performed. But in the late quartets – written by the time he was totally deaf – the higher notes returned.

“When he came to rely completely on his inner ear, he was no longer compelled to produce music he could actually hear when performed, and slowly returned to his inner musical world and early composing experiences,” says the paper.

Mumbai Mirror

5,000 disabled pensions scrapped in RR district

Disability in many of them found to be less than the prescribed upper limit

Nearly 5,000 pensions being drawn by the disabled in Ranga Reddy district have been scrapped as the disability in many of them was found to be less than the prescribed upper limit.  According to the District Rural Development Authority officials, the pension of Rs.500 each disbursed under the social security schemes will be withdrawn for 4,336 disabled candidates who were found with less than 40 per cent disability in the computerised screening camps conducted across the district over the past one year.

Pensions will be stopped temporarily for 500 more candidates who did not attend the screening camps, DRDA Project Director Varaprasad Reddy said. Screening camps are being conducted exclusively for the beneficiaries in various spells to determine the extent of disability, and thereby their pension eligibility.  Medical tests are being conducted with the help of specially designed software SADARAM (Software for Assessment of Disability Access, Rehabilitation and Empowerment) in five hospitals of the district. The software also facilitates identification of requirement for surgery in any beneficiary, so that the same can be communicated to the Department of Health for further assistance, he said.

The hospitals where the screening was conducted include the district hospital at Tandur, area hospitals at Kondapur and Vanasthalipuram and two other private hospitals. Tests were conducted under specially constituted medical boards. So far, 29,000 people have been screened from a total of 31,073, Mr Reddy said. With majority of the beneficiaries screened, the number of medical boards will now be reduced to one or two.

Those who failed to attend the screening may use these camps for resumption of the pension. Reassessment will be conducted by the designated appellate authority for those who are not satisfied with the result, he added.

The Hindu

Doctors must be trained to communicate with the deaf

An advocate for the hearing impaired community is calling for doctors and health workers to be trained in Jamaican sign language so that they can communicate effectively with their deaf patients.

Deaf Community Leader, Rian Gayle, who was participating in a panel discussion organised by the Jamaica Association for the Deaf (JAD) on February 17 at the Alhambra Inn in Kingston, said that communication has proven to be a serious barrier between the deaf patient and the health system. She said that a number of deaf persons are avoiding healthcare because of the fear of embarrassment over not being understood. “Deaf people in our community avoid going to health services. They’re having difficulties when they go in (to the doctor), because they feel that the professional does not understand them when they try to communicate and it is not worth going,” Miss Gayle told the audience.

She said that instead of going to the doctor, unfortunately, many deaf persons resort to taking advice from untrained family members and friends, which often puts them at further risk.

She also recommended that other critical service providers, such as lawyers, court workers, and law enforcement personnel receive similar sign language training.

Miss Gayle, who is also a Research Officer at JAD, said that the deaf community is also being side-lined in the media.  “There is no captioning here on the TVs in Jamaica. It is so crucial, because as vital information is coming in from the government, such as hurricane warnings, without captioning, the deaf people are without that information,” she lamented.

Miss Gayle noted that while newspapers may share some positive incites about the deaf, they also help to perpetuate negative perceptions of the community. Citing the use of the word ‘dummy’ in the headline of an article published in a popular Jamaican newspaper, she stated that this is “a totally inappropriate and offensive term to use in describing members of the deaf community.”  Minister of Religion and talk show host, Rev. Garnett Roper, who also participated in discussion, shared Miss Gayle’s concerns over the absence of television captioning for deaf people.

“As a matter of right, not as a privilege, they need to be spoken to. As a minimum, caption use must govern all television presentations. It takes nothing off us,” he said, noting that sign language interpreters should be a permanent fixture on the news.  Legal Officer in the Ministry of Labour and Social Security, Carla Roper, further spoke of the need for the proper training of persons in the legal system so that they can effectively communicate with persons in the deaf community.

He informed that the Justice Training Institute has implemented such a programme, which he said, was a good start. Other maters coming out of the discussion include: the need for quality trained teachers and interpreters; relevant legislation to protect the rights of deaf people; rights-based approach to educational provisions; and the elimination of negative perceptions about the deaf. Other panellists were: Executive Director, Combined Disabilities Association, Gloria Goffe; Director of Family Health Services in the Ministry of Health, Dr. Karen Lewis-Bell; and Head of the Centre for Disability Studies, University of the West Indies, Mona, Floyd Morris.

Deafway Times

Initial comments and observations on the new draft law

Of late, I have finished taking a quick and cursory look at the new draft law (the working draft as it has been aptly described) which has been updated following conclusion of the last two-day meeting of the new law committee constituted for the purpose of developing a new legislation to replace the existing PWD Act.

I have been receiving any number of telephone calls from friends and activists in the disability sector requesting for my personal and initial views/comments/observations. In view of this, I hereby take this opportunity to share my initial comments/observations/views with three riders: namely, that these views are mine and that they do not necessarily reflect the views of any organization/institution that I may be associated with; That I reserve the right to express further comments/views ETC.; and, that, these views/comments are based, as stated above, on a very quick and cursory reading of the latest working draft and that I need to read the same with greater circumspection, and in greater details.

My immediate and intimate feeling on completing the first quick and cursory reading of the said working draft is that it is not a document speaking for persons with disabilities, it is persons with disabilities speaking for themselves. I wish to whole-heartedly compliment all concerned including my highly esteemed friend Dr. Amita Dhanda under whose active and able guidance her spirited team at Nalsar have put together a brilliant masterpiece of a draft following receipt of inputs from the new law committee. I must also congratulate the Committee chairperson Sudha Kaul and all the members of the committee for the hard work they put in and also for the generosity and cool-headedness demonstrated by them even in the face of all kinds of discombobulations. To my mind, the keenness of the committee and also of the legal consultant in valuing interactive dialogue with the sector is above board.

The depth and intensity of the vision of the working draftcan be better appreciated and felt as one runs through its pages with unqualified openness and unquestionable objectivity.

All this, however, is not at all to suggest that I do not have differences or disagreements at all. Yes, in places, the working draft appears to be overly radical, almost oblivious of ground realities, especially, in respect of  legal capacity to act in relation to persons belonging to certain specific categories of disabilities. Yes, it seems to have become a little too bulky and voluminous, and even unwieldy. Yes, the language and the format perhaps needs fine-tuning in order to ensure that it becomes legally and legalistically more sound.

I would also like to express my satisfaction over the fact that some of my suggestions put forth by me verbally to the person concerned only on the basis of taking a look at  some portions of the first draft brought out on the 20th of the last month have been taken care of in the current draft. These include insertion of a reference to UNCRPD in the Preamble, use of the expression “lifting/eliminating the barriers”,  in place of the expression “lowering the barriers” ETC.

Having said the foregoing, I would like to make the following initial observations/comments in an attempt to facilitate further critical and constructive reflections

  • Legal capacity:  I favour the adoption of the minimalist model of legal capacity which, among other things, must recognize all persons with disabilities as persons before the law on an equal basis with others and also recognize legal capacity of persons with disabilities together with provision for support for whosoever needs that support. Such support should only be for the period, and, to the extent needed by the person concerned. Provisions for safeguards against any possible abuse of support and other relevant matters must be duly incorporated. To my mind, complete and explicit elimination of substitutive support in respect of legal capacity to act in relation to persons belonging to certain specific categories of disabilities  may not be fair and proper. Certain specific condition of certain persons may warrant substitutive support. Experience tells us that some persons in some situations or condition may not even be able to nseek support all by themselves. They b need support even to seek support. Provision only for non-substitutive support for all situations and conditions is replete with danger. Imagine a situation assuming that there is absolutely no provision for substitutive support — What happens if a supporting person/network commits a serious lapse resulting in irreparable and substantial loss to the concerned person with disability, and then takes the plea that the decision was his (concerned disabled person’s), and that the supporting person/network was only supporting that concerned disabled person in taking the decision but the ultimate decision was his. Thus, the supporting person/network may get away with impunity.  To my way of thinking, legal capacity has two components, namely, that one is recognized as a person before the law, and that one is presumed to have the ability and the maturity to comprehend the nature and possible consequences of a given action. In a situation of this ilk, one just can’t have the cake and eat it too. Besides, despite absence of criminal intent, how does a person with very profound intellectual/developmental/psychosocial disability accused of an offence  take recourse to the plea of Mens Rea when the full legal capacity to act of such a person is recognized necessarily though unjustly and erroneously implying that he had the ability and maturity to comprehend the nature and possible consequences of the action she/he might be accused of? I feel that each one of us, regardless of ability or disability may need substitutive support as well. Assuming, (not admitting), that I am in a state of coma and the surgeon concerned has to perform on me a critical surgical operation which may prove fatal. Someone close to me has to decide for me. Is this not substitution? If not, what else is? For such and other like reasons, I feel that while there should be explicit provision for making all-out efforts to promote non-substitutive support, substitutive support need not and should not be altogether done away with.
    The UNCRPD also talks about support wherever such support is needed; and support can be both substitutive and non-substitutive; Otherwise, what prevented the framers of the UNCRPD to impose an explicit and  blanket ban on substitutive support? While it is all right to be surcharged with idealism, it would be prudent if the working draft reflects a more judicious combination of idealism and pragmatism.
  • Disability Rights Authority (DRA):  The DRA is a very well-conceived concept albeit it needs modifications so as to be in harmony with the contents/views expressed in 1 above. The reason is not far to seek and hence, is not elaborated. After going through the powers, functions and the structure of the proposed DRA with meticulous care, I strongly feel that the proposed DRA must be set up under a separate/exlusive/dedicated statute which may be called “The Disability Rights Authority Act —“. This suggestion is being put forth given the comprehensive nature of DRA’s mandate, its powers and functions, and also its elaborate structure. Please allow me to disabuse the minds of those who feel that the DRA is intended only as a recommendatory bodywith no teeth. My reading of the proposed DRA concept leaves me convinced that it wil have ample powers ample participation of experiential and subject experts, and a number of bodies functioning under its direct supervision, control and guidance.
  • Chief Commissioner and state and district Commissions: Please exercise caution and guard against the interchangeable use of the expressions “Commission” and “Commissioner” in relation to the states and districts. Even the corrected/updated draft in one or two places uses these expressions interchangeably. The proposal for a Chief Commissioner at the national level, and Commission at the state and district levels is innovative, imaginative, and it would be interesting to see how it works.
  • Education: The chapter on education has been very comprehensively drafted and rightly so. While it justly and emphatically provides for inclusive education at all levels, it also mentions/recognizes the so-called special schools. However the mention/recognition of the so-called special schools has happened only in whispers and not with the kind of emphasis it merits. Therefore, there is a definite and distinct need for explicit provision, among other things, for concurrently creating and promoting more disability specific schools and strengthening the existing ones on modern and scientific lines. Such explicit provision is  necessary despite an already incorporated provision in the working draft in respect of providing education in environments that maximize academic and social development.
    Anyways, we already have exclusive schools in relation to some other non-disability areas which is fair enough as long as one gets quality education; and, assuming for a moment, that we don’t have such exclusive schools for others, nothing should stop us from incorporating what is needed. I feel that since persons with disabilities are recognized as a part of human diversity and humanity, there is little justification for encouraging the use of the expression”special schools”. Instead, we should use the expression “disability specific school”.
  • Employment:  I immediately find little scope for commenting on provisions relating to employment as reflected in the working draft. However, I emphatically feel that the justification which merit reservation in promotion for SC and ST communities also applies at least, in equal measure, if not more to persons with disabilities. Hence, it is important to underscore the need for bringing about necessary amendment in the Indian Constitution as was done in the case of SC and ST communities. In some place which I am immediately unable to locate, the working draft while providing for safeguards  states that no person shall be discriminated “merely” on ground of disability implying thereby that disability could be one of the grounds, though not the sole ground of discrimination.  Therefore, Please delete the word “merely” if it still exists in the updated draft. In order to address the concerns of persons who happen to be totally blind, a portion of the reserved quota of jobs should be earmarked for them out of the reserved quota for the blind and the low vision.
  • Accessing justice:  Relevant provisions are very well conceived. Just incorporate a strong provision for fast-tracking of all cases at all levels involving persons with disabilities.
  • Definitions: Just one thought: This is in relation to the generic definition of persons with disabilities which is almost the same as given in Article 1 of the UNCRPD with the lone exception that the expression “long_term” has not been retained. Will this be prejudicial to the interests of the genuinely disabled?

This definition, and also the defition of “reasonable accommodation” and a number of other provisions leave me convinced that the working draft, in a certain sense, is

way more radical/progressive than even the UNCRPD.

My views in respect of the need for having a more progressive and forward looking common law compared to the current PWD Act and also the need for having additional and specific legislations to address highly specific issues of the more marginalized groups within the larger group of persons with disabilities are so well-known that they perhaps do not merit at least immediate reiteration. Common law to addres commonalities, and specific laws, to address specificities depending on need and necessity is my view. I do not favour the idea of clubbing/merging the existing laws into one Act. To my humble way of thinking, it is so utterly wrong to allege, as some seems to have alleged that the new law committee has violated its mandate. In fact, the new law committee was neither mandated to suggest repral of any laws nor to club and merge all disability specific legislations into only one legislation.

Be that as it may, it would also be in the fitness of things to suggest some amendments in the Indian Constitution to strengther the rights regime for persons with disabilities. Suggestions for such amendments must include amending of Articles 15 and 16 so that disability gets included as one of the prohibited grounds of discrimination. I am aware that suggesting constitutional amendments, strictly speaking, is not within the ambit of the new law committee’s mandate; yet, one perhaps can take this reasonable freedom.

Some more random thoughts: I am not too sure whether insertion of a definition of “barrier” will necessarily work to our advantage. Sometimes, leaving some grey areas is perhaps more advantageous. Some other times, however, it is necessary to define and demystify some expressions. For example, in my view, if any model other than the minimalist model of legal capacity is insisted, then, in my considered view, legal capacity will necessarily have to be defined and demystified.

The working draft is unique in more ways than one. I am particularly impressed by the insertion of principles of implementation and interpretation. The author has made an ingenious attempt to retain the positive jurisprudence which has been built over the years.

To allay the fears expressed by some of our friends, let me state in no uncertain terms that the current workin draft does also adequately address the concerns and aspirations of those persons with disabilities who live in the rural and remote areas. The fact of the matter is that the working draft is so all-encompassingly inclusive.

To be fair to the author of the working draft, we must not fail to appreciate the highly challenging nature and also the enormity and stupendity of the task considering that intricate diversities and diverse intricacies do exist within the larger group of persons with disabilities. It was no mean task; and, yet executed with remarkable sensitivity and alacrity.

I am afraid the Govt. may not accept this kind of a draft in toto; it nevertheless, will continue to have an immensely educative value.

I feel that we need to critique this brilliantly conceived working draft with the objectivity and openness that it merits keeping in mind our  best interests as persons with disabilities, and  putting aside our egos to the extent possible. Such critique should invariably be constructive and in good taste. If some people still choose not to eschew condemnatory language, all I wish to say is this: Just come up with an alternative and matching draft so that one is able to compare and contrast and come to a certain view in respect of the matter.

Well done, amita, well done Nalsar team, well done Sudhaji and the new law committee!

Best regards, 

Prasanna Kumar Pincha



New Global Rights-Monitoring Network for Persons with Disabilities

Image Credit: Disability Rights Promotion International

Disability Rights Promotion International (DRPI) has introduced a new global monitoring system to address disability discrimination. This comes off the ba ck of the UN Convention on the Rights of Persons with Disabilities, which reports how well all governments that have ratified the agreement are managing.

At the moment, countries are often limited by funding depending on how they report on their implementation of this agreement. The minimum requirements are simply catalogue laws, policies, and programs; which, as you can imagine, doesn’t always have a huge affect on real life accessibility issues.

The new monitoring system from DRPI aims to help countries place that cataloguing alongside evidence-based data. This is achieved by getting people with disabilities involved in the process; there will be training on “what disability means as a human right, how to collect data and conduct evidence-based research, and how to write and file human rights reports” (source). For example, insight into whether the laws about accessible offices or public spaces are implemented will much more effective when the targeted end users can influence the project.

The partners behind this new program are Bengt Lindqvist and Marcia Rioux. Lindqvist, as well as holding a position as Cabinet Minister in Sweden and as the UN Special Rapporteur on Disability, is well known for his years of disability rights activism.

Riox has this to say of the new monitoring scheme: “Our project allows evaluation to happen within the context of the experiences of people with disabilities to objectively measure where discrimination is now, while developing and tracking solid trend data to determine if and how things are getting better.”

Research for this project has been taking place in Canada over the last five years with excellent results. The monitoring scheme is now being rolled out across the world with training kicking off in Africa, Asia Pacific, Eastern Europe and Latin America. In fact, a new monitoring centre, the Africa Regional Monitoring Centre, opened its doors in Kigali, Rwanda in early September.

Reform long overdue in state-run disability care facilities

Sunday’s article by Sam Roe and Jared Hopkins about the deaths at a Chicago nursing facility for children and adults with severe developmental disabilities ("Children with disabilities die on care facility’s watch," Oct. 11) is shocking but all too familiar in the disability rights community. The individuals who have died at this facility–13 during the past decade–are the most vulnerable in society. They are individuals with significant, multiple impairments who depend fully on the skill, attention and goodwill of their caretakers. Look at the photos of the dead children printed alongside the article. Read their names. Notice that their parents are described as indigent, in prison, unable or unavailable to advocate for their children. Then read that the Illinois legislature recently exempted facilities like this one from recent nursing home reforms and, according to the article, there was no lobbying to include these facilities in the reforms.

Unfortunately, Illinois has a long history of institutionalization, exclusion and neglect of people with severe developmental disabilities. Placement of children with significant disabilities in separate facilities and segregated schools occurs in Illinois at a rate greater than the national average. Families with the fewest resources see their children living in facilities like this one, where staff members assume equipment alarms aren’t working without bothering to check them, where working alarms are turned down so low they can’t be heard and where staff are overworked and forced to take shortcuts that compromise safety.

Even children who are not medically fragile face the likelihood that they will be hidden away from other children during much of their school day. Nationally, Illinois consistently ranks near the bottom of all states when it comes to educating students with intellectual disabilities in the same schools and classrooms with other students. When compared to the national average, more special education students in Illinois ages 6 to 21 receive over 60 percent of their services outside the general education classroom.

Roe and Hopkins’ reporting illustrates the complex network of factors contributing to the deaths of these 13 individuals, such as state politics, economic interests, histories of exclusion and the invisibility of poor people of color with significant medical and educational needs.

– Susan L. Gabel, Chicago

Copyright © 2010, Chicago Tribune

Recognizing Abilities, Not Disabilities

Friday, October 15, 2010, 7:35am EDT

It is a unique place where people with disabilities can show their abilities. A grand opening is being held today for the Museum of disABILITY History and the Training Center for Human Service Excellence.

Organizers say with People, Inc. say the Museum of disABILITY History is the only free standing museum dedicated to the history of people with disabilities. It features exhibits on the Kennedy family and their advocacy for disability rights along with people with disabilities in movies and TV. A sports section highlights Buffalo Sled Hockey. The museum also recognizes state and national advancements.

The goal of the museum is to expand community awareness by collecting, preserving and displaying artefacts pertaining to the history of people with disabilities. It is located at 3826 Main Street near Eggert Road on the Amherst/Buffalo border and is open to the public.

Public figures will be on hand to mark the occasion with a ribbon cutting this afternoon. The third week in October is known as Disability History Week in New York State. Today marks recognition of the state’s first ever Disability History Day.

Will the museum be a success in reaching out to the community and changing their perceptions of people with disabilities? Stay tuned. But it is one positive way to put Buffalo on the map for a very good cause. The museum’s slogan is "Unique to WNY… Unique to the World!"

Business First

50K TO MARRY in sickness and; in health

Money Won’t Guarantee Love, Say Couples

The state government may have the best of intentions by providing a monetary incentive of Rdisabled grooms 50,000 to anyone marrying a physically challenged person, but how far will it go in changing mindsets and breaking prejudices? Will such a scheme help integrate the disabled into mainstream society? Chandrakant Kalvint and his wife Swati, who have been married for 31 years, are sceptical, as such a move—they say—is not a long-term solution.   “Besides, the amount offered is too little, and will not address a lifetime’s need, especially if the spouse is suffering from a chronic problem. The money will run out,” says 68-year-old Chandrakant, who has made the best of the cards life dealt him. When he was only a year old, he was crippled by polio, and crutches became a way of life. While he got a job in Mantralaya, the impact of his disability was the felt the most when he began his search for a suitable wife. After many rejections, he found Swati, now 60 years, and today the couple has married off three daughters and are planning their son’s nuptials. “Fourteen years ago, I sustained an injury on my left leg after an accident. To make matters worse, two years ago my right hand stopped functioning because of hypertension, but my wife has stood by me,” says Chandrakant, who now runs a Thane-based NGO, Apang Maitri, for the physically challenged.

“We have been married for so long. We face each problem as it comes. I am proud to be his wife,” says Swati. A sum of Rs 50,000 would neither cover a quarter of the Kalvint’s medical expenses, nor would it be an incentive for Swati to remain in the marriage.    There’s no denying that in mainstream Indian society at least, there is a stigma associated with being differentlyabled. The Kalvints are an exception that tests the norm; unions between the physically challenged and the general population are rare. And it’s always harder on women who are differently abled. “There are plenty of opportunities for men who are physically challenged. But what are we doing for disabled women?” asks Dr Ravi Subbaiah, president of the Handicap Welfare Association. In his opinion, cracks in the marriage usually arise when the wife is physically challenged, but not the husband. “The sexual relationship the couple shares has to be taken into account. On one side there will may be frustration and on the other, there is guild,” headds.

“Money cannot buy or guarantee love and commitment,” say Kirti and Naresh Patange. Around 18 months ago, Naresh, a software engineer, suffered a near-fatal accident. He was attacked by a gang of robbers one night and was beaten with heavy iron rods. So brutal was the attack, that his skull cracked. “There was a lot of clotting in his brain, and recovery took months. He has lost his ability to speak,” says his wife, 33-year-old Kirti. The mental and financial toll strained family ties. “There were family problems because of the money we had to spend on the expensive treatment. It was only after we moved to Pune, away from my in-laws that Naresh’s stress levels dropped, and he began showing signs of improvement.”

Today, the couple has a baby girl and moved past a nightmarish year. “Though doctors say his nerves are damaged, and he will never recover his speech, I cannot help but hope it will return some day,” says Kirti. “Where there is love, money is useless. Instead, the government should provide employment opportunities to the differently-abled.”

Pratibha Masand Times of India, 9th October 2010

Wed a disabled person, get 50,000 from state govt

It’s a bitter pill to swallow, but in India, the physically challenged have not been integrated into mainstream society. And marriage is the one institution where the stigma of being differently-abled is starkly highlighted. Now, the state government has decided to rectify this and is planning to launch a scheme where anyone marrying a disabled person will be awarded Rs 50,000. Social justice minister Shivajirao Moghe said the idea was to encourage marriages between the “disabled and the able-bodied’’.  Any person who marries a person with 40% or above disability—one who is certified as disabled—will be eligible. The government is of the opinion that the reward scheme will promote greater integration of physically challenged people into mainstream society, and will be implemented across Maharashtra. According to the 2001 census, there were 15.69 lakh persons with disabilities (PWDs) in the state. No data was available on unmarried PWDs.

While the plan has been welcomed in some quarters, many NGOs and activists have expressed their doubts over whether a monetary incentive is the way to go. Naysayers include Raju Waghmare, who is employed as a programme officer for handicap rights with the Human Right Law Network. “The scheme will encourage an able-bodied person to marry a financially independent disabled person for monetary gain,’’ he said. ‘We must go out to find partners’ Mrs. Varsha Hooja, trustee, ADAPT, an action group that promotes the cause of the disabled and others working and living together, felt that first priority should be given to creating awareness, promoting a disabled-friendly environment, and sensitizing society towards the abilities of the physically challenged. “Marriage will follow,’’ she said. On the other hand, the Handicap Welfare Association—a non-profit organization for the disabled by the disabled-—has welcomed the move. “If implemented in letter and spirit, the scheme could be a step towards the empowerment of the differently abled,’’ said Ravi Subbaiah, president of the association. To increase the reach of the welfare scheme, he cited the need to set up a disabled-friendly public infrastructure. “The disabled need to go out and interact with people in order to find a partner,’’ he said. Unfortunately, most cities in India do not have this infrastructure.

Maharashtra is not the first Indian state to award reward schemes. Goa and Karnataka governments have already taken steps by providing tax rebates and perks to corporates employing PWDs, a move that Waghmare believes is more effective towards integrating the physically challenged in society. Goa also has a similar marriage reward scheme. To prevent misuse of funds, social welfare officers will be in charge of implementation. The social justice and special assistance departments have a prepared a detailed proposal, which has been forwarded to the planning department for fund allocation.

Pratibha Masand Times of India, 9th October 2010

Killing of Unborn Children with Downs – Genocide

It is the opinion of this Society that the government is guilty of genocide, a crime against humanity which is a violation of the United Nations Convention on the Prevention and Punishment of the Crime of Genocide. New Zealand is a signatory to the Convention that was passed by the General Assembly on 9 December 1948.

Relevant section of the Convention on the Prevention and Punishment of the Crime of Genocide

Article II: In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:

  • Killing members of the group;
  • Causing serious bodily or mental harm to members of the group;
  • Deliberately inflicting on the group conditions of life calculated to bring about its physical destruction in whole or in part;
  • Imposing measures intended to prevent births within the group;
  • Forcibly transferring children of the group to another group.

Our complaint is that in February 2010 the government of New Zealand instituted the “Antenatal Screening for Down Syndrome and other conditions – Quality Improvements” programme. This programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU] without public consultation. Cabinet papers obtained under the Official Information Act state that the outcomes of the programme will be a reduction in the number of births of people with Down syndrome, with around 90% of unborn children diagnosed with the condition being aborted.  The programme is funded by the state and targets all pregnant women in New Zealand in their first trimester on the basis of providing information to women to make decisions about their pregnancies, including abortion.  People with disabilities are the only group of people in New Zealand targeted for selective abortion. Down syndrome, and other conditions that are targeted, are genetic conditions that have no cure. The basis of first trimester screening is to enable woman to have an abortion within the 20 week timeframe if an abnormality is detected. Other reasons for prenatal diagnosis, such as parent education, hospital selection and delivery management, do not require testing during the first trimester and can be safely left until the later stages of pregnancy.  The preventing of birth of a group of people falls within the definition of genocide under international law.

This Programme was introduced by the Ministry of Health following advice from the Ministry’s National Screening Unit [NSU]. Documentation obtained under the Official Information Act from the Ministry of Health included the document Summary of Key Informant Interviews Antenatal Down Syndrome Screening Final Report which states that, “The programme will be cost beneficial for the population and the health system. The scan highlighted literature that supported the premise that the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”

This is eugenics which proclaims that only the perfect have a right to be born. The screening programme is a search and destroy mission and is a further major step on the slippery slope. The government seeks to conceal the true purpose of the programme by calling it a “quality improvement” rather than national screening programme. The government states that it is providing a service to families by giving them a choice whether to terminate the life of the child with Down syndrome or to allow the child to be born. We should be aware that this is part of a strategy of social conditioning. Right to Life contends that the government has decided that children with Down syndrome are not valued or wanted in our community. Its intention then is to encourage families to abort children with Down syndrome. The insidious option to terminate the life of the child will ultimately become a duty to kill the child before birth. With the acceptance of eugenics ultimately it may be expected that with the rationing of diminishing health resources the health care for the disabled will be restricted.

It is the opinion of this Society that the screening programme is in violation of Article II [d] of the Convention, Imposing measures intended to prevent births within the group. People with Down syndrome fall within the definition of “disabled persons” and are recognized under the UN Declaration on the Rights of Disabled Persons as a group which forms part of a nation. Under that Declaration disabled persons “have the same civil and political rights as other human beings” and must be protected, against all exploitation, all regulations and all treatment of a discriminatory, abusive or degrading nature.” These rights are further reinforced under Article 10 of the Convention on the Rights of Disabled, which states “State Parties reaffirm that every human being has the inherent right to life and shall take all necessary measures to ensure its effective enjoyment by persons with disabilities on an equal basis with others.”

We request that the government cease this screening programme. In the event that the screening programme is not terminated Right to Life New Zealand will lay a formal complaint with the United Nations [The Office of the Special Adviser on the Prevention of Genocide] against the government of New Zealand for genocide by imposing measures to prevent births of children with Down syndrome. The World Health Organisation [WHO], states that the classification for Down syndrome is a “mild to moderate disability.” Most children with Down syndrome participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome. Today people with Down syndrome live at home with their families and are active participants in the educational, social and recreational activities of their community. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways. Women who have an unborn child diagnosed with Down syndrome or any other disability need and deserve the support and compassion of the community to accept their child as a valued and loved member of the family and community.

The government should promote a culture of life by ensuring that families who have unborn children with Down syndrome receive compassion and are given all the encouragement and support needed to bring their child to birth. After the birth of their child they should be provided with the services necessary to assist them in providing for the special needs of their child.

Scoop Politics Independent News

A New Financial Access Frontier: Persons With Disabilities

Can a person with a disability living in a developing country become the valued client of a financial institution?  According to Harvard Law professor Michael Stein, 650 million people around the world, nearly 10 percent of humanity, have a disability, and over 80 percent of these people live in developing countries. Yet, in research studies, fewer than 1 percent of the clients of microfinance institutions, dedicated to serving the world’s financially excluded people, were found to be persons with disabilities. One of the last great human rights struggles is only now starting to penetrate the world of low-income finance.

But how best to make progress in disability inclusion?

In June, the Center for Financial Inclusion at ACCION, in conjunction with the Disability and Development team of the World Bank, brought disability activists together with leaders from microfinance in a roundtable entitled, “A New Financial Access Frontier: People with Disabilities” to begin a dialogue. Disability activists and microfinance professionals are two tightly knit communities with their own vocabularies and their own ways of seeing the world so it is not surprising that at times heated debate preceded agreement on clear objectives.

In 2006, the passage of the U.N. Convention on the Rights of Persons with Disabilities gave the disabilities community a major boost. This Convention requires all ratifying governments to “promote, protect and ensure” the rights of persons with disabilities. 2010 also marks the twentieth anniversary of the Americans with Disability Act, and implementers of that landmark legislation testified to the remarkable changes it has brought about. Unyielding commitment to the human and economic rights of persons with disabilities is the lifeblood of many people in the disability community. The activists carry this message to financial service providers: Financial service providers wake up and act! It’s a matter of human rights, and it’s the law (in 85 countries).

The microfinance professionals, for their part, were happy to acknowledge the justice of the cause, and admitted to being somewhat abashed at their own ignorance. But, they approach the topic with a certain “Show Me” wariness. Their dedication to reducing financial exclusion notwithstanding, they want to be convinced of a business case for inclusion of persons with disabilities that is realistic and sustainable. Moreover, the U.N. Convention, though perhaps an interesting sign of the times, is certainly not a mandate they feel direct pressure to fulfill.

Once the two sides got past their introductory positioning, they began a fruitful search for strategies that might work. Listening, it struck me that the biggest barriers are less practical than about attitudes. Yes, physical accessibility matters, but in the context of developing countries, accessible design in a bank branch means little if the road to the bank is unpaved and pot-holed. Technologies like mobile phone banking and voice-enabled ATMs could overcome physical barriers at a stroke. They generated much hopeful enthusiasm, even though they have yet to be used widely to reach low income or disabled clients.

But negative attitudes are the real tough nut to crack, for both prospective clients with disabilities and for microfinance providers. Many person with disabilities have experienced so much societal exclusion and marginalization during their lifetimes that they often lack the confidence to approach financial institutions or to even conceive of themselves as microentrepreneurs. Disabled persons organizations (DPOs) and other disability rights organizations work on overcoming such barriers, both societal and self imposed, and help prepare their clients to connect with mainstream institutions, among them financial.

On the provider side, staff are often the perpetrators of exclusion, simply because they have absorbed the culturally prevailing images of people with disabilities as not competent or unable to handle financial responsibilities. In some cases, laws still create roadblocks, for example, if blind people are prevented from signing contracts they cannot see. Cultural attitudes may be starting to shift, thanks to the Convention.

Both sides agreed that persons with disabilities do not need special financial products to succeed, even though they may need flexible accommodation to help them access mainstream products.

A number of microfinance specialists reminisced about specific clients with disabilities. They reported that these were solid clients: resourceful people who knew how to overcome challenges and who were happy to receive a chance from a bank. When they talked about these clients, they sounded a lot like the early advocates of microfinance two decades ago, countering the objections of mainstream banks to serving the poor. In those days, the microfinance activists insisted that the poor and excluded were capable of being responsible clients. One hundred and fifty million microfinance clients later, the bet on the poor has proved sound. Round-table participants are preparing now to make similar bets on people with disabilities.

Elisabeth Rhyne, Managing Director, Center for Financial Inclusion

The Huffington Post

Mental health: are we all sick now?

Diagnosing psychiatric illness has always been controversial, mental health experts say. Now some are worried that a
new draft of the diagnostic ‘bible’ for mental health medicine could result in almost everyone being diagnosed with a mental condition.

Sad child The diagnostic ‘bible’ in question is the Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association.  The US manual is used worldwide as a basis for diagnosis, research and medical education. Its  forthcoming fifth edition – known in the profession as as DSM-5 – is set to contain a range of new diagnoses, including conditions  such as “mixed anxiety depression, psychosis risk syndrome and temper dysregulation disorder”, as well as the more mundane binge eating. The danger, say experts writing in a special issue of the Journal of Mental Health, is that there has not been enough research to back up these changes.

Even the smallest shift in how to define something like depression could have huge implications.

Self-fulfilling

Dr Felicity Callard, senior research fellow at the Institute of Psychiatry, King’s College London, says it is crucial to understand what happens when people are over-diagnosed. “There are very big potential implications on how people, particularly adolescents, respond to being told they have a mental illness. It’s likely there will be harmful consequences,” she said. She cites the “at risk psychosis syndrome” diagnosis as an example of a label which is given to young people who ‘might’ have psychosis – characterised by abrupt changes in personality. It is a diagnosis of something which could result in a disorder, but only potentially. That can have complicated effects, she says.   “Imagine a young person being told that they are “at risk” of developing a mental illness. How would that affect that individual’s behaviour? Could it lead to increased stigma or even discrimination? And how might it affect the parents and family of that person too?”

Jerome Wakefield of New York University’s Department of Psychiatry writes: “One of the most frightening scenarios is the potential for medicating people – particularly children – who haven’t yet shown any signs of illness in a bid to ‘treat’ them.” These concerns are shared by a number of clinical experts in the Journal of Mental Health. The journal’s editor, Professor Til Wykes of King’s College London, fears that, “most of these changes {to the manual} imply a more inclusive system of diagnoses where the pool of normality shrinks to a mere puddle.”If normal behaviour is increasingly being categorised as mental illness then that creates a burden on individuals, families and on society as a whole. As well as an emotional and social toll, there are financial implications. It follows that money has to be set aside to care for the mentally ill and clinicians and carers have to be trained to deal with their ‘illness’.

Making sense

Yet some effective system of diagnosis is still needed. Nick Craddock, professor of psychiatry at Cardiff University, feels it is important to make sense of a person’s experience using a classification system like the DSM. “Diagnosing Bipolar disorder, for example, can be very helpful. It can transform people’s lives, make them feel accepted and can give their symptoms meaning,” he said. Previous research has shown that many people enjoy having a label or a name to describe their symptoms. With diagnosis comes relief and it can also be a form of therapy in itself. Following changes to the previous version of the DSM, there was a rise in rates of attention deficit hyperactivity disorder, autistic disorder and childhood polar disorders. The Journal calls them “false positive epidemics”.

BBC

Can and Able : Disability Sports

Wheelchair Race

REMA NAGARAJAN TIMES INSIGHT GROUP

The 2010 Commonwealth Games in Delhi will be an inclusive event, with para sports held along with able-bodied events. But a global debate still rages on whether the lines between abled and disabled should be erased

South African Natalie Du Toit, whose left leg is amputated below the knee, qualified in 2008 for the Beijing Olympics. She became the first athlete with a disability to qualify for the final of an event in the largest ablebodied sporting meet, the Olympics.   Natalie has won over 15 gold medals at various international events for disabled sportspersons and, in the Beijing Olympics, finished in 16th place in the 10,000 metre swim, just over 1.22 minutes behind the winner.   While a few disabled athletes do qualify to compete against the able-bodied in certain sports, the movement globally is not so much for the disabled to compete against the able-bodied as for a merging of para games with able-bodied events.

Recently, Dr Robert Steadward, one of the founders of the International Paralympic Committee (IPC), created a stir when he called for the Paralympic Games to be combined with the Winter Olympics.  Such a merger would mean not only that para games are held along with ablebodied sports, but also that medals won in para games would count in the final tally of a country. Only then, believe the proponents of this move, will disability sports be taken as seriously and disabled sportspeople get as much recognition and funding as able-bodied sportspeople. The Commonwealth Games created history in 2002 by becoming the first fully inclusive international multi-sport games. This meant sporting events for people with disabilities would be held along with able-bodied sports events and have a common medal tally.

But not all persons associated with disability sports are enthusiastic about integrating disability sports with sports for the able-bodied. The debate on whether integration is desirable rages on internationally.  Dr Steadward suggested that the two games could remain separate in terms of athletes and events, but could share resources like housing and transportation. He felt such a move would reflect a new level of acceptance of people with disabilities and bring more visibility to the Paralympics, which generally garner far less media coverage than the Olympics. Dr Steadward and the present-day IPC are in agreement that the Paralympic Games being the second largest sporting event in the world with nearly 4,000 participants makes it logistically impossible for any one city to host them simultaneously with the summer Olympics. That’s why Dr Steadward suggests clubbing them with the winter Games.

However, the IPC does not agree with Dr Steadward’s case for integration. Steffi Klein, who handles media and communications for IPC, explains that the committee believes that “the Paralympic Games and the Paralympics Movement with its mission, vision and values can and should stand on its own, staging a great sport event for elite athletes with a disability”.   Combining medal tallies would not make sense in this case, she added. While admitting there’s much less public interest in the Paralympics than in the Olympics, Klein pointed out that awareness, acceptance of and public interest in the Paralympics Games had grown significantly over the last decade.

The International Olympic Committee too cites “institutional, technical and organisational difficulties” for not merging the two events. “The leaders of sports for those with a disability themselves do not want this integration. They have received the names Olympic and Paralympic — this proves that the IOC considers them as athletes in their own right,” says Emmanuelle Moreau, Head of Media Relations IOC. Moreau adds that IOC does not keep medal tallies and that the practice of media outlets providing medal tallies was independent of the IOC.

It’s been a long journey for the Paralympics from being separate events to ones held in the same city and the same venue as the main Games, though not fully merged. While the two were always held in the same year, since Paralympics 1988 and Winter Paralympics 1992 they have also  taken place at the same venue. And in June 2001, the IOC and IPC signed an agreement securing this practice for the future, which meant that from the 2012 bid process onwards, the host city chosen to host the Olympic Games would be obliged to also host the Paralympics.   Even for the CWG, becoming fully integrated was a huge progress from 1994 when athletes were first included just in exhibition events. And now, integrated games have become the accepted and established policy for the CWG.

The number of disability sport demonstration events at major sporting events is increasing as integration makes inroads on a sport-by-sport basis. While full integration of the Olympics and Paralympics might seem a long way off, more communication and integration between disabled and able-bodied sporting organisations across the world is leading to a steady breaking down of barriers. For instance, in countries like the UK the same bodies now handle able-bodied and disabled sportspersons for their disciplines. This is a big step from the earlier practice of keeping   the two separate.

Runner

SPORT ISN’T DISABLED. ATHLETES ARE ATHLETES FIRST

Richard M Hansen, Canada’s globe-girding wheelchair athlete and Paralympian is one of ccthe strongest advocates for integration. He tells TOI-Crest why segregration has to end

Why do you advocate merging disabled sports with able bodied sports?

Sometimes it is the right thing to do, to create sport opportunities for people with disabilities in segregated games. But it creates a perception that people with disabilities are less than equal. It’s contrary to the universal values of accessibility and inclusiveness. By creating sporting events where all athletes can compete together, we help break down barriers of segregation. I see sport as a mirror of how society views itself, its social values and behaviours. At the heart of an athlete is the desire is to be included and feel part of a sporting environment. We need better opportunities to better serve the athletes. The question we need to ask is — are we encouraging existing attitudes instead of breaking down barriers?

Why do international sports organisations like the IOC and others continue to insist on segregating games?

The IPC and other organisers should be commended for providing a vehicle for athletes with disabilities to express themselves and strive for their hopes and dreams. As an athlete who has benefited from these games, I feel so fortunate that these organisations have been there and that they provided me with the opportunity to be a gold medalist. I think segregation comes from a perspective of convenience and the desire to help people with disabilities participate in all aspects  of life. A separate set of games accomplishes that objective.

What is the biggest hurdle to merging disability sports with able-bodied sports? How can they be overcome?

I think the biggest hurdle is communication between the organisers of the sports for people with disabilities and the mainstream games organisers. Dialogue would lead to a more similar vision and a common bond. Basically, a collaboration as opposed to a segregation or competition.

What is your opinion about the Commonwealth Games where the integration has happened? Are there other major sporting events where successful merging has already happened?

The Commonwealth Games are a wonderful model of integration, the beginning of a merging journey that has taken many decades. It went from a culture of indifference in 1994 to formal acceptance in 2002. I’ve heard from a number of athletes who characterise the Commonwealth Games as the greatest experience in their athletic life. Being able to participate with full medal status and feel fully included is a huge breakthrough. The Commonwealth Games are a democratic organisation and the member nations voted to provide full medal status for all athletes.  It was a grassroots movement that came from all over the world. The Canada Summer and Winter Games are fully inclusive along with various European and World Championships. I think the more opportunities available to the athletes, the better.

Is it logistically possible to merge disability sports with able-bodied sports? Can a regular sporting event successfully handle the various categories that exist in disabled sports?

I think this has been answered in the past. A question for organisers is — can they afford to logistically stage two separate games? Is that the most ideal model? Ask the athletes and answers will emerge. There is no right or wrong model, just a reflection on where we are on our journey.

What do you see as the future of disabled sports? How do you plan to work towards making it happen?

Sports aren’t disabled. The athletes who participate in them are extremely bright, driven, and have exceptional talent and spirit along with a disability. Like a powerful force of water towards the ocean, it makes many pathways until it reaches its goal. Athletes are athletes first and just want true acceptance, to be honoured and appreciated like their peers.

In The Running

  • 1924 The International Silent Games held in Paris for the hearing impaired were the first recorded games for any group of people with disabilities. The Deaflympics are held every four years like the Olympic Games 1948 Dr Ludwig Guttmann founded the Stoke Mandeville Games in England. It was a sports competition for British World War II veterans with spinal cord injuries. From then on, the Stoke Mandeville Games became an annual event
  • 1952 Competitors from the Netherlands joined the competition. It gave birth to the idea of Parallel Olympics (or Paralympics) 1955 The International Olympic Committee (IOC) recognised the International Committee of Sports for the Deaf (ICSD) and the Deaflympics
  • 1960 The International Stoke Mandeville Games were held for the first time in the same country and city as the Summer Olympics (in Rome). For the first time, they were open to all athletes with disabilities from all over the world, not just veterans. This is described as the First Paralympic Games. The International Paralympic Committee (IPC), the governing body of the global Paralympic movement, started organising both Summer and Winter Paralympics every four years like the Olympic Games
  • 1968 The idea of sports for athletes with intellectual disabilities was conceived by the Special Olympics Movement

How families and coteries are ruining disabled sports in India

The disability sports sector in India seems to be in gross disarray with the administration of the sector in the stranglehold of a coterie of people who seem to have no interest in either the disabled or in sports. National disabled sporting federations seem to be run like mom-and-pop outfits with hardly any national character.Yet, not only does the sports ministry seem blind to such obvious  mismanagement, it  seems to be actively funding and perpetuating these outfits shelling out public money in crores every year to these organisations in the name of promoting sports for the disabled.

The rot seems to start right from the apex body of disability sports, the Paralympic Committee of India (PCI). The PCI is headed by the president Ratan Singh whose son Amar Singh is the vice-president.  Amar Singh’s son, Raghavendra Singh is an escort or so-called professional masseuse for disabled sports teams. He is too young with no professional qualification to be a sports masseur. Yet, he gets selected, despite qualified persons in sports medicine with  professional training in sports massage being  available, says a disabled sportsperson on conditions of anonymity. Sportspersons are scared of speaking out against the office bearers who have a vice-like grip over their sporting  careers, a threat they seem to use to good  effect in keeping them from protesting.

When contacted, Ratan Singh admitted to the problem of office bearers signing up as escorts and managers.  “Office bearers accompany teams as they can sort out any problem easily. I can do little about this. But as you can see, my son and I are not signed up for any team. My grandson is there for being a qualified masseuse. I did not make the selection,” said Singh.

Every single office bearer of PCI has listed himself as manager or escort with various teams accompanying them to countries   like the US, Germany, Malaysia, Taiwan, Australia, Spain and so on. KR Shankar Iyer, the treasurer of PCI, is listed as an escort for the athletics and volleyball teams and manager for the wheelchair fencing team. CV Raghunath,
administrator of PCI, is listed as an escort for athletics, volleyball and the powerlifting teams. M Mahadev, the secretary of the PCI, is listed to accompany the athletics and volleyball teams.

The office bearers of national federations for each sport do what is done in PCI, which is to list themselves as escorts and managers or appoint themselves as the coach and take their wives along as escorts. Quite understandably, these so-called coaches, managers and escorts are of little help to the disabled sportspeople when they go abroad as they are allegedly too busy on jaunts and sightseeing with their wives and  friends who accompany them as team escorts.  Each so-called national federation is single-city based, filled with people from the same city and no national representation. For instance, powerlifting is run from Nagpur, swimming from Gwalior and athletics from Bangalore. The PCI, the overarching national body for all disability sports is controlled by a bunch of people in Bangalore.

The selection of sportspersons from all over the country for different sports is decided by small coteries of people of one city and allegations of irregularities in selection are common. It is the sportspersons who suffer the consequences of such mismanagement. Last month, the athletics team that was supposed to be in Germany for an international meet could not go as those responsible did not apply for the visa in time.

Most teams don’t even have basic sports equipment such as the swimming team not have approved swimming costumes or the table tennis team does not have wheelchairs.

Despite these malpractices being pretty obvious in the team lists for each sport submitted by PCI to the ministry as Long Term Development Plan 2010, the sports ministry seems oblivious to it and the allocation to these federations has been rising steadily every year going from about Rs 10 lakh in 2005 to over Rs 5 crore in 2010.

(Source: Long  Term Development Plan 2010 submitted by PCI to sports  ministry)

List of office bearers of various sports

ATHLETICS

  • Raghavendra Singh, escort: Grandson of PCI president, Ratan Singh and son of Amar Singh, PCI vice-president
  • M Mahadev, team manager: Secretary of PCI
  • David Premnath, coach: General secretary of Wheelchair Basketball Federation of India
  • CV Raghunath, escort: Administrator of PCI
  • Diana Joyline D’Souza, escort: Was personal secretary to PCI president
  • KR Shankar, escort: Treasurer of PCI

SWIMMING

  • VK Dabas, coach: Secretary of Paralympic Swimming Federation of India, also runs Paralympic Committee of Madhya Pradesh
  • Saroj Dabas, escort: Wife of VK Dabas
  • Suresh Kalra, escort: President of PSFI
  • Lalit Gupta, escort: Vice-president of PSFI

VOLLEYBALL

  • H Chandrashekar, cpach: Secretary of Volleyball Federation
  • M Mahadev, escort: Secretary of PCI
  • Chandrashekar, escort: Joint secretary of PCI

WHEELCHAIR FENCING

KR Shankar Iyer, manager: Treasurer of PCI

POWERLIFTING

  • Vijay B Munishwar, coach: President of Paralympic Powerlifting Federation and also runs Maharashtra State Paralympic Association
  • Deepali Munishwar, escort: Wife of Munishwar
  • CV Raghunath, escort: Administrator of PCI

TABLE TENNIS

  • R Murali, coach: Secretary of Paralympic TT Federation
  • Gopal Babu, escort: Member of executive committee, PTTFI
  • Shashikala Babu, escort: Wife of Gopal Babu
  • Satyanarayana, manager: President of PTTFI

EU development cooperation; does disability count?

Europe has declared 2010 to be the year against poverty and social exclusion. It is a good occasion to look at the European policy towards a group that knows only too well what poverty and social exclusion mean: people in developing countries living with a disability. Does European development aid reach people like Lila Maya in Nepal, who became blind as a baby and was isolated and mistreated until a local NGO helped her set up her business? Or Ricardo in Mozambique, who never went to school because of his paralyzed legs?

A vicious cycle
Poverty, exclusion and disability are interrelated. Poverty causes disability, because it means that people do not have access to health facilities, information and adequate food that could prevent a simple disease to develop into a disability. With proper treatment, Lila Maya might have not become blind. Disability in its turn causes poverty, because practical problems and social stigma exclude people with a disability from education and work to earn their own living. Ricardo makes a little money by repairing the clothes of his neighbours, but what would his life have looked like, if he had had access to school and a wheel chair?  According to the United Nations 650 million people live with a disability and 80% of those live in developing countries[1]. The European Union is a major player in development cooperation; it provides over half of all official development assistance worldwide[2]. An inclusive development policy of the EU can therefore really make a difference for people with a disability.
Beyond good intentions
In 2009 the EU ratified the United Nations Convention on the Rights of Persons with Disabilities. It is a legally binding convention which stresses the importance of international cooperation and states that countries should ensure that: ‘that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities’[3]. This means that, besides and above the good intentions which the EU expresses by announcing a Year against poverty and social exclusion, it has is a legal obligation to ensure that development cooperation reaches people with a disability. The Convention is an important landmark signalling a change in attitude.  In stead of talking about the handicapped who need to be cared for, people with a disability are now recognized as persons who have the right to participate in all aspects of society. Only countries that have ratified the Convention are bound to it. The EU already took this important step, but a number of European countries such as Norway, the Netherlands, Poland and Italy are still missing on the list.
Towards an inclusive European development policy
Europe has shown its commitment to the rights of the Lila Maya’s and Ricardo’s in the world. But to make sure they can
really benefit from European aid, more steps need to be taken.
  • Ratify: More countries should ratify the UN Convention on the Rights of Persons with Disabilities. This will show their real commitment and helps to make sure that we will come from good intentions to realization of rights. The EU should urge those member states that have not done so yet, to ratify the Convention as soon as possible. Together, the European countries can encourage other countries to ratify and of course to implement the  Convention.
  • Plan: The start of implementation is developing a good plan. A quick scan of relevant EU policy documents on disability and development does not give much hope. The Commission Work Programme 2010 refers to disability only once, in an annex and not in relation to development. The General development framework, makes no mention of disability at all. The Guidance Note on Disability and Development, published in 2004 by the European Commission[4] provides a number of useful principles, but apparently these are not put into practice. A good sign is that the Directorate General Development is considering to add disability to the list of ‘cross cutting’ issues. Recognizing disability as a cross cutting theme will help to ensure that attention will be paid to disability in all development activities: ‘mainstreaming’ disability. Already, the EU requires applicants of development grants to explain how the grant will benefit people with a disability. Besides mainstreaming disability in development activities, the EU will need to facilitate disability-specific services and support for disabled persons to empower themselves and to get access to mainstream services.
  • Learn: Developing such a plan is not easy. Implementing it will be even more challenging. Mainstreaming disability is a new concept and there are no studies yet that prove which strategies are successful. A lot can be learned from the experiences regarding gender and development. It is also important to do research regarding disability and development. Lessons should be drawn from good and bad experiences, to improve future  policies.
  • Measure. To know if efforts are effectively reaching people with a disability, it is important to collect data before, during and after interventions. How many people with a disability are living in the project area? Which disabilities do they have and how does this affect their ability to benefit from development efforts? Targets will need to be set on how many people with a disability will be reached by a certain effort. In most cases, the required data will be unavailable. People with a disability are not counted and therefore cannot be accounted for. Starting to collect these data will make them visible. This will require ‘disaggregation’ of data: asking projects to report on how many of the people they are people with a disability, just as they are often required to do regarding women and youth.
  • Involve. Last but certainly not least,  people with a disability should be involved in all the above. ‘Nothing about us without us’ is the adagio of the disability movement.
[1] UN 2006, Some facts about persons with disabilities, http://www.un.org/disabilities/convention/facts.shtml

Published by: Dutch Coalition on Disability and Development (DCDD) -Saskia Bakker

Advocates laud parking bill

NEAL P. GOSWAMI
Thursday June 24, 2010

BENNINGTON — Illegally parking in spots reserved for people with disabilities will soon cost offenders a lot more.  Lawmakers joined law enforcement officials and advocates Thursday in hailing passage of Act 82, recently signed into law, which doubles the fine for illegally parking in a disabled spot from $100 to $200. The law and the increase takes effect on July 1.  The Vermont Center for Independent Living, a statewide disability rights organization, advocated for the legislation. Bennington County Sen. Dick Sears, a Democrat, sponsored the bill and helped shepherd it through the  House and Senate. VCIL Vice President Sam Liss credited Sears as the driving force behind the bill’s passage.

‘Constituent-driven’

The “constituent-driven” legislation was “lost with all of the discussion about texting and cell phones” during the legislative session, but an important bill for lawmakers, Sears said.  “I hope that this law will help the situation and I’m really appreciative that both our local, county and state police departments are behind this bill,” Sears said.  Liss said the bill will increase awareness because of the increased fine.  “Most of us never have to think about going shopping, going to a park or going out for entertainment other than the thoughts about having to circle the parking lot hoping for a closer space. But for many of our friends parking is an issue of greater importance,” Liss said. “Act 82 appears to be  about money… but it is about much more. This act is about awareness, about inclusion, about making sure that all  Vermonters can get to where they want and need to go. This fine is like all others, a consequence for ignoring the law.”  The legislation had received widespread support in Bennington County and throughout Vermont from law enforcement.

Vermont State Police Lt. Reginald Trayah, commander of the Shaftsbury barracks, was assigned by the state police to look into the bill. “As soon as it came across my desk, immediately I had a great deal of support for this. This will give us the opportunity to provide more access to individuals who need it, not only in Bennington County but the entire state.”  Meanwhile, Bennington County Sheriff Chad Schmidt said enforcement of parking violations will increase.  “In the past, we haven’t been as vigilant in enforcing these types of offenses,” he said. “I am pledging to you today that the sheriff’s
department will be more vigilant in our efforts and we will enforce these types of offenses.”

Bennington Police Chief Richard Gauthier said his department would enhance enforcement, too. “We will renew our efforts,” he said.  Vermont law requires that parking lots on the premises of public buildings must include at least the same number of parking spaces required by the Americans with Disabilities Act. The new state law clarifies that the parking spaces must be marked clearly by visible signs.  Sears said the sign requirements will help clarify which spots are intended for people with disabilities. Sears said he nearly violated the law recently because there was no indication the spot was intended to be for someone with a disability.  “With Senate plates … and after sponsoring this bill, the last thing you want to do is get a ticket for parking in a handicapped spot,” Sears said.

Contact Neal P. Goswami at ngoswami@benningtonbanner.com