China’s disabled exploited as slaves

In an economy where manual labour is in demand, ruthless recruiters often prey on the mentally disabled. One man, held at a brick kiln, is one of countless slaves who endured torture and deplorable living conditions.

China slave labor

Mao Xiulian shows the sores on the legs of her son Liu Xiaoping, 30, who was burned with hot bricks while made to work as a slave at a brick factory. (Robert Gauthier, Los Angeles Times / February 26, 2011)

Reporting from Xian, China —

At 30, Liu Xiaoping is more boy than man, with soft doe eyes that affix visitors with the unabashed stare of the very young and glisten with reluctant tears when his bandages are changed.  It takes effort not to show the pain of the wounds that read up and down his body as a testament to the 10 months he was held captive at brick factories in the Chinese countryside.

His hands are as red as freshly boiled lobster from handling hot bricks from a kiln without proper protective gloves. On the backs of his legs, third-degree burns trace the rectangular shape of bricks, a factory foreman’s punishment for not working fast enough. Around his wrists, ligature marks tell of the chains used to keep him from running away at night.  Liu was found wandering in the small town of Gaoling, north of Xian, on Dec. 22, 10 months after his family reported him missing. He was wearing the same clothing as when he’d disappeared in February, but the trousers were glued to the festering wounds on his legs and the gangrene of his frostbitten feet stank through the gaping holes in his shoes.

Despite his injuries and an intellectual impairment, he was able to tell how he’d been tricked by a woman who bought him a bowl of soup and promised him the equivalent of $10 per day, good wages for manual work in rural China. Instead, he became a slave. "They took advantage of my brother because he has a mental disability," said his 26-year-old brother, Liu Xiaowei. "They forced him to work, beat him, tortured him, and then when he was too weak to take it anymore, they threw him out on the street."

In an adrenaline-paced economy with a chronic shortage of manual labourers, ruthless recruiters often prey on China’s mentally disabled. The worst offenders work with the brick kilns that are feeding a seemingly insatiable appetite for the new apartment complexes and malls cropping up around the countryside.  "The brick factories can never get as many workers as they need. The work is heavy and a lot of people don’t want to do it," said Ren Haibin, the former manager of one of several brick factories where Liu said he had worked. "Possibly the mentally disabled can be intimidated and forced to work…. They are timid and easier to manage."
In the Beijing offices of Enable Disability Studies Institute, a nongovernmental organization, director Zhang Wei reels off a list of more than a dozen cases over the last decade in which people were enslaved in appalling conditions, each more nightmarish than the last.

Young women have been sold by psychiatric hospitals as sexual partners and wives; mentally disabled young men have been imprisoned as forced labourers in coal mines and brick factories. In 2008, a brick factory owner beat a young man to death for an escape attempt. In December, Chinese authorities rescued 11 workers who had been sold by a supposed charitable organization for the disabled to a brick factory more than 1,000 miles away.

Reports on conditions in the factory said the workers hadn’t been allowed to bathe in more than a year and were fed the same food as the boss’ dog.  "Every year there are cases like this," Zhang said. "The worst are when they are violating the rights of the disabled in the name of charity."  Police often won’t exert much effort when a mentally disabled person disappears, he said, and even if they’re rescued, their testimony is not taken seriously because of their impairment.

"This is not like when a child goes missing. Police will just assume they’ve run away," Zhang said. Some families, he says, won’t even bother to report. "They might feel that they’ve been relieved of the burden."  That was not the case with Liu Xiaoping. He comes from a loving family who occupy the ground floor of a shabby apartment in southern Xian, where his father sells remedies to people too poor to afford a doctor. Since Liu escaped from the brick factory, he has shuttled between home and the hospital, while his family tries to raise money for skin grafts. 

Liu doesn’t speak much. When he does, the words come slowly but clearly, as though they’ve required some concentration. He left school in the third grade, when it became clear that he’d never be able to read or write beyond an elementary level.
But he was strong and healthy. Neighbours would always call on him to help harvest wheat and potatoes and he would hang out at the market looking for odd jobs unloading trucks or carrying parcels.  "He wanted to stand on his own feet," said younger brother Xiaowei. "He was kind-hearted and thinks that everybody else is too."

On Feb. 28, 2010, the night of the Lantern Festival that ends the lunar New Year holiday, he and his family were visiting relatives in Shanyang, a town south of Xian. That night, Liu failed to come home, something that had never happened before. His family reported him missing the next day and printed posters that they distributed around the neighbourhood.  Little did they know that he had been transported almost 100 miles away to Gaoling, a rural county where there are dozens of brick factories tucked deep in the countryside. They might never have found him if not for another family who’d also lost a son to the brick factories.


He Wen went missing June 2. The 35-year-old had been psychologically troubled since his late teens, when he’d suffered a breakdown after failing an exam. He was unable to hold a regular job but could unload trucks and was proud that he’d managed to buy his own television set.  The afternoon he disappeared, a nephew overheard him taking a telephone call from a woman who’d offered him a job that would provide more than $10 a day, meals and a free pack of cigarettes. He rode away on a bicycle.

His father, He Zhimin, is a 62-year-old farmer with unruly whiskers and hands that tremble as he fingers photographs of his missing son.  "I was suspicious as soon as I heard about this supposed job offer. I started asking around and people told me stories about the brick factories," He said.  He went to the local police, but they told him to file the report in nearby Gaoling. The police there sent him back.

"They kept kicking me from one place to another," he said.  So he launched his own investigation. Every afternoon, he’d go out in a three-wheel motorized cart, handing out fliers and business cards with images of his son’s square-jawed face. Somebody printed out a map from Google and he marked the locations of all the brick factories he heard about: 58 in Gaoling alone.

Four workers at one factory said He Wen had worked there earlier in the summer and they gave his father directions to other factories nearby. An elderly woman had seen the younger He walking toward downtown Gaoling. Construction workers erecting an apartment complex thought he might have worked there.  "People kept saying they’d seen my son, but by the time I’d get there, he’d have disappeared."
In December, somebody telephoned to say a homeless man who looked like his son was sleeping on the street in Gaoling. He rushed over. He could see that the unshaven, dirt-encrusted man looked like his son: the same height, close in age. But he was not.

Disappointed, he returned home. His wife was furious.  "How could you leave that boy out on the street in winter? Maybe it was our son, after all. Even if he’s not, he’s somebody’s son," she badgered her husband.  After a sleepless night, he drove back to Gaoling. The homeless man was still out in the street, but he was too delirious to give his name. He tried to take him to the police and to a hospital, but nobody wanted to take him in. Finally, he called a journalist, who matched the young man’s description to that of another young man reported missing.

He was Liu Xiaoping.


As Liu recovered in the burn unit, his brother coaxed the story out of him. Liu told of the beatings and burnings, of the food so meagre than he lost 20 pounds, of being chained at night and guarded by vicious dogs, about being shuttled among three brick factories.  He identified a photograph of He Zhimin’s missing son as one of 11 disabled workers imprisoned with him. He also picked out from police photographs the woman who tricked him and a man known as Lao Fang, a nickname meaning "Old Fang," the foreman who beat him and the other workers.

He described in detail the location of the three brick factories where he’d worked, one of them where the workers had recognized the photo of He Zhimin’s son.  That factory lies at the end of a straight dirt road through fallow corn fields 10 miles from Gaoling. There are a few houses out front, and in back a partially underground room lined with chambers containing brick ovens. Although it was closed for the winter, the manager, Wang Youqiang, was on duty.

"Look around if you like. There’s no evidence against me. It’s all just rumour," he told a visitor.  Wang acknowledged that it’s hard to find workers — "Business is great. We sold 27 million bricks last year and would have sold 30 million, if we had the labour" — but denied using the disabled. "If you say otherwise, show me the proof."  But Ren Haibin, who was manager until June, when he says he retired because of ill health, confirmed most of what Liu Xiaoping claimed. He said the factory contracted with a man named Fang who would supply and supervise mentally disabled workers. Fang’s mistress recruited them with the promise of $10 a day in wages.

In fact, the going rate for healthy workers was about $14 a day, whereas the factory paid Fang $4.50 per day for each mentally disabled worker, of which $1.50 was spent on food. The rest went to Fang.  "They made promises they didn’t keep," Ren said. "The money went into Fang’s pocket. The workers never saw it."  Ren said he never saw Fang beating a worker, but added: "He was not a kind person…. Maybe if they didn’t work up to a certain level, there would be no food."  Fang could not be reached for comment. Telephone numbers he had used were disconnected.
In the two months since Liu was found wandering, local authorities have visited many brick factories in the area, requesting lists of workers’ names and where they’ve come from. But no one has been arrested and Liu’s family has yet to receive compensation for his medical bills.

"I thought this should be so simple, an open-and-shut case, but it has proved so complicated," said his brother Liu Xiaowei. "I’m very disappointed that our society hasn’t done more to protect people like my brother."  He Zhimin, meanwhile, is no closer to finding his son. He fears that whoever is holding him may have spirited him far away to avoid detection. It’s not an unreasonable fear; when the disabled workers were rescued in December in Xinjiang, one was found to have been transported 2,000 miles across China. 

He Zhimin continues to go out every afternoon, driving through the countryside near the brick factories, thrusting fliers into the hands of passers-by.  By now, most people recognize him, so they simply shake their heads: No, they haven’t seen his son.

barbara.demick@latimes.com
Copyright © 2011, Los Angeles 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.

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

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

Children need own Bill of Rights

I am a 69-year-old man. During my lifetime I have seen several groups of citizens seek and obtain increased rights. I remember the rights quest like this: civil rights, prisoner rights, voting rights, women’s rights and disability rights. While many citizens were increasing their rights, children have been steadily losing their rights. Consider this: More and more children are being born into single-parent homes. This is bad. Children need the support and guidance of both parents.

More and more children are requiring government assistance for the basic necessities of life. This is bad. Our government cannot provide an adequate living for an ever-increasing number of needy children. Children’s parents must be the primary providers for their children. More and more children have divorced parents. This is bad. The mean spirit that very often develops between divorced parents is not good for children. Children need their own Bill of Rights. This document should give details for a minimum standard of care for a child. Parents who do not provide this minimum standard of care for their children should be treated as lawbreakers. Many of our children have become second-class citizens and this is a crying shame.

David Shaner Wetumpka

Montgomeryadvertiser.com

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

Disability and Census of 2011

Counting the “invisible” children of Mother India.

While the current focus of political debate is on ‘caste and census,’ there is another important aspect that deserves attention. This concerns disability.  For decades after our independence, there was no effort to actually count how many of us have any disability. There were estimates-informed or otherwise- but no factual figures. All our  government’s plans and budgets, rules and regulations, proclamations and posturing were built upon shaky foundations. A new Ministry was created, staffed and has been operating for several decades on that basis. It seemed to suit every one, except the millions who were thus rendered ‘invisible’. This lasted for 54 years. But, despite their  ‘invisibility,’ the disabled and the NGOs dealing with disability made progress on the ground.

Let me illustrate with an example. There was no government or non-government organisation looking after the needs of children with cerebral palsy, till a young mother of a child with cerebral palsy set up the very first Spastics Society of India, Mumbai (now known as ADAPT-Able Disabled All People Together)) in 1972. The handful of children included her own daughter. Dr. Mithu Alur, our Chairperson, had thus created a unique institution, offering all facilities under one roof, including diagnosis, physiotherapy, physical aids, schooling, parental counselling, etc. Over time, these services also came to include research, teachers training, admission of older children in “normal” schools and colleges, job-oriented training and placements and so on. This model is now replicated in 18 States. Almost all the organisers have themselves been trained at Mumbai. These NGOs operate independently, while forming a Regional Alliance, constantly coordinating, cooperating and learning from one another.

During preparations for the Census of 2001, several NGOs (including us) approached the Census Commission with the request that they should also count the disabled in our country. Obvious arguments were put forward. Approaches were also made through the concerned departments of the Government. Unfortunately, nothing worked; we were simply told that the disabled could not be included. The NGOs were persistent; the matter was taken to the political level. Eventually, it was decided that the Census would include, for the very first time, a counting of the disabled. However, this historic decision was taken at a very late stage, in the face of consistent opposition by the Census Establishment. Perhaps, their subsequent actions were reluctant and grudging. Perhaps, there was not enough time for the necessary preparations. It is also possible that, despite their best efforts, framing of appropriate questions, their translation into the required languages, training of the enumerators etc. left much to be desired. For all these reasons, the results of the Census 2001 were deeply disappointing for the disability movement.

For example, the Census of 2001 concluded that there were only 2.13 % or 21 million Indians with any kind of disability. This was a fraction of the estimates by most experts. This has since been amply proved by a World Bank report of 2007. This report was “prepared at the request of the Government of India”. In fact, it acknowledges “the guidance of officials of the Ministry of Social Justice and Empowerment, guidance provided by an inter-ministerial Technical Advisory Group set up for the work by MSJE and consisting of representatives from the Ministries of Health, Labour, Human Resource Development and Rural development, as well as an NGO representative.” Similarly, it acknowledges the help of officials in several States including Rajasthan, Karnataka, Orissa, Uttar Pradesh and Tamil Nadu. In short, the World Bank Team had the full backing and support of the Government of India and many State governments. The report is entitled ‘People with Disabilities in India: From Commitments to Outcomes’. It concludes: “While estimates vary, there is growing evidence that people with disabilities comprise between 4 and 8 per cent of the India population (around 40-90 million individuals)”

Obviously, there is a vast difference between 2.13 per cent or 21 million ‘counted’ by the Census of India, and 4-8 per cent or 40-90 million estimated by the World Bank team. Several NGOs, including ADAPT, have been interacting with the Census Commission, individually or in groups. The Commissioner, Dr. C. Chandramauli, has been positive and open-minded. In a recent letter to him, based on our own experience, and consultations with our regional partners and other experts, we have made a number of recommendations. These take into account the Commission’s constraints of space and format, the work already done, and recommendations made by others in the disability movement, like a Delhi-based group which had also held wide consultations. For example, along with the Delhi group, we have endorsed the inclusion of four types of disability in seeing, hearing, speech and movement, repeated from the 2001 census. We have also endorsed the recommended inclusion of Multiple Disability and Mental Retardation. But, since the latter expression is no longer used, we propose “Remembering and Concentration” instead. Thus, there is already an agreement on the types of disability.

Equally important is the framing of questions under each type. Questions must be activity related; these must also be relevant to our circumstances; only then can these elicit accurate responses. For example, the question suggested by us on speech is: “Do you have difficulty in speaking in your usual language?” The latter language is included because, in the course of a research study with UNICEF involving 31,000 children, we had found that children who had migrated out of their home states had a linguistic problem, which may be reflected as a speech problem. We have also submitted Hindi translations of these easy-to- understand questions to demonstrate that similar translations in other languages could be equally easy and understandable. Contrary to speculations, there is thus a growing meeting of minds between the Census Commission, on the one hand, and several sections of the disability movement, on the other. Thus, we can hope that the Census of 2011 will finally be able to give us a correct count of the disabled in our country, making them truly visible.

By Kamal Bakshi
(A former ambassador, and Vice-Chairperson of ADAPT, Mumbai.)

© Copyright 2000 – 2009 The Hindu

Rejected disabled CAT-taker moves court against IIMs : Contends institutes leave disabled category seats vacant

Mayura Janwalkar.

Do the IIMs adequately fill up the disability quota for students?

No, thinks Rahul Girreddy, who took CAT this year and has filed a petition against the IIMs in the Bombay high court.  The commerce graduate contends in his petition that the IIMs are not complying with the provisions of the Persons with Disabilities (PD) Act, 1995.  “Though there are 90 to 100 seats reserved for DAs (differently-abled candidates), only approximately 55 candidates are short-listed collectively by the IIMs for the second phase of the selection process,” the petition states. Under the PD Act, 3% of seats in educational institutions have to be reserved for DA candidates. But the number of seats provided by the IIMs against the quota does not amount to 3%, the petition states.

It states that IIM-A stipulates that SC/ST/DA candidates should score at least 17% in each of the three sections of CAT. Accordingly, 396 DA candidates should have been eligible for interviews this year. But the IIMs put the cut-off for the three categories at 80 percentile — much above what the 17% per subject would yield — and called only 31 candidates for interviews. Girreddy contends that even if all the IIMs were to set their cut-off at say 60 percentile — like  IIM-Indore — only 55 DA candidates would have been selected, leaving many seats vacant, which would then be filled up with candidates from the general category. Girreddy, who secured 46.20 percentile, was certain of getting an interview call.

But the high cut-off dashed his hopes. Terming the conditions laid down by the IIMs “illogical”, Girreddy states in his petition: “Though the IIMs do make a provision for 3% of their seats to be reserved for DAs, the modus operandi adopted by the IIMs defeats the provisions of the PD Act, frustrates the objective set out for the state in the constitution, and causes a colossal waste of public money.”  Girreddy’s father GS Reddy says the case will be mentioned before a division bench of the court on Monday, and a date of hearing sought. If the court gives a judgment favourable to Girreddy, it will affect the percentile scores of all candidates.

DNA Bombay

Depression industry in a slump

By Clive Cookson and Andrew Jack, FT.com June 15, 2010


A drawing by a patient suffering from depression. Several large drugmakers are scaling back research into antidepression medication.

A drawing by a patient suffering from depression. Several large drugmakers are scaling back research into antidepression medication.

STORY HIGHLIGHTS
  • WHO: Depression causes more disability than any other disease
  • Several drugmakers are ending research in depression
  • there are few new scientific leads in the laboratory
  • The industry is being flooded by cheap generic drugs
  • Clinical trials are particularly hard to organise for antidepressants

Caroline “came out” last month. After 30 years fighting clinical depression, she told friends and colleagues at KPMG, the accountancy firm where she works, that she wanted “to battle this illness openly and help others fight it too”.  “People at work were absolutely amazed — and totally supportive,” says the 47-year-old tax manager. “They couldn’t believe I was suffering from depression. But I had devoted a lot of energy to hiding it, and I decided I didn’t have energy to waste.”

Caroline has joined the small band of people willing to risk what is widely seen as the stigma attached to depression and similar mood disorders. Another recent example is the writer Allison Pearson. They are the visible tip of a growing pandemic of what the biologist Lewis Wolpert memorably called “malignant sadness”. According to the World Health Organisation, depression causes more disability than any other disease, affecting more than 120m worldwide. The cost of all this is thought to exceed $100bn (£68bn, €82bn) a year. On the face of it, then, depression presents a classic “unmet medical need” with a vast potential market that should be a priority for increased pharmaceutica research and development. In reality, quite the opposite is happening. Several of the largest drugmakers have recently decided to curb or cease research in the field, reducing the funding and expertise available to find better treatments.

The withdrawal reflects growing financial pressures on the industry to cut spending on high-risk low-profit areas such as mental health, where there are few new scientific leads in the laboratory and many cheap generic drugs are coming on to the market. Yet neuroscientists say research into the biology of depression, funded by public agencies and smaller biotechnology companies, is on the brink of breakthroughs. In February Andrew Witty, chief executive of  GlaxoSmithKline, said his company would stop work on antidepressants, bringing an end to research by the developer of drugs such as Wellbutrin and Seroxat. GSK denied that its decision was related to the public criticism, regulatory scrutiny and litigation over suicidal feelings and other alleged side-effects generated by Seroxat in recent years.

Rather, Mr Witty said there were more promising and productive areas of research in its portfolio, while  antidepressants were “among the most expensive, high-risk” drugs to develop, with weak “endpoints” that made it difficult to measure likely success until late in the development process. AstraZeneca took a similar view a few weeks later, winding down its discovery work on depression and other mental disorders as it pared back in-house research spending. At the heart of the problem is the difficulty in first identifying appropriate patients to take part in clinical trials and then proving that they do better on the new drug candidate than on placebo (dummy pills). “That is the number one reason why we as an industry are moving away from an area that has an incredible burden of disease,” says Frank Yocca, AstraZeneca’s head of discovery for central nervous system drugs.

Clinical trials are particularly hard to organise for antidepressants because, for a start, medical definitions of  depression and its severity are not as clear-cut as for most other diseases. In addition, reliable “bio­markers”, objective measurements of disease progress such as brain scans or blood tests, are unavailable.  I saw depression was a real hell, with people waking up at 3 or 4am in atrocious discomfort

Then there is the large — and mysteriously growing — placebo effect, which makes it hard to demonstrate statistically that patients taking the active drug are doing better than those on dummy pills. Psychiatrists have long recognised that patients with depression and other mood disorders are susceptible to the suggestion that they will get better. But it is not clear why placebo power should have increased, as analysis of clinical trials over the past 30 years shows  it has. “It would be like invoking magic to suggest that people are becoming more suggestible,” says John Geddes, professor of psychiatry at Oxford University. “The change is more likely to be an artefact of the way patients are recruited to clinical trials.”

Supplements for depression: What works, what doesn’t

Finding trial volunteers — who are depressed, not taking an existing drug and willing to try an experimental one — has become harder over the years, says Chris Thompson, chief medical officer for the UK’s Priory hospital group. In response, investigators have been (unconsciously) upgrading the level of depression of potential subjects, so that they meet the criteria for inclusion. But once the trial is under way, researchers no longer have a motive to exaggerate the volunteers’ symptoms. Everyone, whether on drug or placebo, seems to get better — “which is catastrophic if you are trying to discover how effective the drug is”, says Prof Geddes, who chaired the depression and anxiety part of the UK Medical Research Council’s recent mental health research review. “Everyone in the field knows that this happens.” So researchers are discussing ways to reduce the problem — for example, dropping placebo-controlled trials and comparing new drugs with the best existing treatments.  Yet even if clinical trials were easy to organise, drug companies might not have a great incentive to innovate, given the downward trend in the antidepressant market. Although prescriptions are rising, their value is falling as the new generation of antidepressants introduced during the 1980s and 1990s, such as Eli Lilly’s Prozac and Wyeth’s Effexor, lose their patent protection and cheaper generic versions appear.

IMS, a provider of healthcare data, says global antidepressant sales peaked in 2006 at $20.2bn. Last year the market was worth $19.2bn and Datamonitor projections show a 4 per cent annual fall until 2014, when slow growth may resume. With the overall pharmaceutical market growing more than 5 per cent a year, the share taken by  antidepressants is shrinking. Existing classes of antidepressant — known as “selective serotonin reuptake inhibitors” (SSRIs) and “serotonin norepinephrine reuptake inhibitors” (SNRIs) because of the way they function in the brain — work reasonably well for 60-70 per cent of people. Their side-effects are less serious than the previous generation.  It would be like invoking magic to suggest that people are  becoming more suggestible

Caroline says Prozac helps to keep her depression under control, though occasionally she has to take spells off work — most recently three days in January when “I just couldn’t answer my phone, or have someone ask ‘how are you?’ without my bursting into tears”. She adds that cognitive behavioural therapy, a form of counselling, has helped her avoid incipient bouts.  Ms Pearson meanwhile took sertraline (Zoloft) for a few months. “It seemed to help control the anxiety but it also appeared to muffle my mind — everything felt as though it was on the other side of a piece of Perspex,” the British author says. “I was trying to finish a novel, which requires maximum clarity, so I stopped taking  the medication. I got the novel finished but the anxiety returned.”  Some smaller pharmaceutical and biotech companies are still looking for better antidepressants. “I’m almost encouraged by big competitors pulling out,” says Jacques Servier, founder of France’s privately owned Servier Laboratories. “They are often dominated by financial pressures. We are independent, have more liberty and can afford to be more daring.”

Mr Servier’s commitment to antidepressants was inspired by his background in psychiatry: “I saw depression was a real hell, with people waking up at 3 or 4am in atrocious discomfort, feeling a loss of activity and sometimes suicide.” Mr Servier’s research led to the launch of Valdoxan (agomelatine), a new class of antidepressant that claims improved sleep and fewer side-effects. Though the drug has been used by about 100,000 patients, he concedes it is not easy to compete with low-cost generic alternatives: “Generics are very good for those who respond to them but the price is very low and the companies don’t contribute to research.”

Another company committed to depression research — and shielded by a non-profit foundation from short-term  financial pressures — is Lundbeck of Denmark. Lundbeck sells Cipralex, which it also argues has fewer side-effects than generic alternatives. Two other compounds in late-stage trials have a new mechanism of action. Ulf Wiinberg, chief executive, hopes that within a decade, more targeted therapies for different subgroups of patients, “just like we have for cancers”, will emerge. “The first time patients present with depression, they will definitely receive a generic,” he says. “But after the first or second failure, they need new drugs. We should be treating with the best available therapy.”  Two US companies with promising candidates are Clinical Data Inc (CDI) and Targacept. CDI has applied for Food and Drug Administration approval of vilazodone, which could reach the market next year.  Targacept is about to start the final trial of TC-5214 in collaboration with AstraZeneca, which agreed in December to pay $200m up front for rights to the drug — demonstrating that, while big pharma companies are winding down their research into antidepressants, they are prepared to pay for promising candidates developed elsewhere.  Many mental health experts are less concerned with the pharmaceutical industry than with what Dr Thompson calls the “scandal of how little public money there is for research into the biology of depression”. A better understanding of what happens in the brain when people feel seriously depressed would give researchers a lead to develop better drugs. One promising avenue, says Prof Geddes, is to use powerful new brain imaging techniques to probe the neural processing of emotion.

Like all complex disorders, depression results from many genes and environmental factors working together. The genes remain largely unknown and so do the environmental triggers that might explain the rise. “There is evidence that the incidence of depression is increasing and that this is over and above better recognition,” says Prof Geddes.  Its onset may on average be earlier in life than it used to be, adds Dr Thompson. Possible causes range from the stresses of modern life — if anything exacerbated by recession — to excessive eating.  Psychiatrists say the worst thing people can do is to suffer in silence. Even if they cannot bring themselves to be as open as Caroline, they should approach a self-help charity, such as the UK Depression Alliance where she has begun to work as a volunteer.  “Depression has often wreaked complete havoc with my very existence,” she says. “With no cure on the horizon, you cannot battle this disease on your own.”

Hope lies in cells that spring eternal in the neurone zone

The bleakest dogma of 20th-century neuroscience held that the adult brain never grows: we can only lose neurones (brain cells) as we get older.  But research led from the Salk Institute in California and Columbia University in New York has overthrown the dogma. New neurones do form in parts of the brain — and the process, known as neurogenesis, offers a promising way of fighting depression.  Scientists showed in 2003 that existing antidepressants achieve some of their effect by stimulating growth in the hippocampus, a brain area involved in learning and memory. The discovery seems to solve a pharmacological puzzle.  Antidepressants such as Prozac are supposed to work by increasing the level of certain brain chemicals (such as serotonin) that transmit signals between neurones. But the drugs raise  neurotransmitter levels very quickly, so why do they take several weeks to lift the sufferer’s mood?  The explanation for the delay — that it reflects the time taken for new cells to grow in the hippocampus — has been confirmed by brain imaging, animal studies and post-mortem examinations of human brains. It is now possible to track neurogenesis through scans that show increased blood flow in the living human brain.

So the hunt is on for new antidepressants designed specifically to maximise neurogenesis. Leader of the pack is a San Diego company, Brain Cells Inc , founded by academics from Salk and Columbia. After screening more than 1,000 chemicals for their neurogenic effect on brain cell cultures, BCI has discovered two drug candidates that are giving encouraging results in early clinical trials. One of them is a combination of two chemicals, melatonin and buspirone, which have little effect individually on depression or neurogenesis but work well together.  Although the first application of neurogenesis will be depression, it may be useful for treating other brain conditions.  NeuroNova, a Swedish company, is testing two protein drugs that stimulate neural growth in patients with Parkinson’s and motor neurone  disease. Syngis Pharma of Germany has started a trial of a growth-stimulating factor that is injected into the brain following a stroke. Animal experiments show that it might both reduce cell death immediately after the stroke and then help blood vessels and neurones to grow, reducing the patients’ long-term disability.

Another intriguing possibility, says Carrolee Barlow, chief scientist at BCI, is that stimulated growth of the hippocampus will improve memory and cognition in diseases such as Alzheimer’s.

© The Financial Times Limited 2010

Disability law: Hunger strike called off

After the Centre partially conceded their demands, a group of disabled people on Wednesday called off their hunger strike held to protest against their poor representation on a committee which is drafting a new law to protect their rights.  Javed Abidi, convenor of the Disabled Rights Group, said the strike had been called off after the Centre’s positive response.

A S Narayanan, secretary of the National Association of the Deaf, told The Indian Express through a translator that Gopal Reddy, personal secretary to Social Justice and Empowerment Minister Mukul Wasnik, had confirmed that six more people would be added to the committee, of whom three were disabled. This would bring the total number of disabled people on the committee to six.  Following pressure from various disabled groups, the Social Justice And Empowerment Ministry had formed a committee in April to draft a new legislation, reflecting the UN Convention on the Rights of Persons with Disabilities, to replace the Disability Act, 1995. The first meeting of the committee will be held on Thursday.

Disability activists are looking for three main changes to the Act.

VINAY SITAPATI
Indian Express

Disabled people plan hunger strike in Delhi for rights law

A group of disabled people will begin an indefinite hunger strike from Wednesday outside the Shastri Bhawan, which houses many central government ministries, to protest their poor representation on a committee drafting a new law protecting their rights.

Following pressure from various disabled groups, the social justice and empowerment ministry in April ormed a committee to draft new legislation, reflecting the UN Convention on the Rights of Persons with Disabilities, to replace the Disability Act, 1995.

The first meeting of the committee will be held June 10.

“The government has overlooked the basic tenet of the convention and the bedrock of the disability rights movement – ‘Nothing about us, Without us’. The 27-member committee appointed by the government has only three people with disabilities,” said Javed Abidi, convener of Disabled Rights Group.

A group of disabled people also met Social Justice and Empowerment Minister Mukul Wasnik May 26, demanding an increase in the number of disabled people in the committee, he said.

“We will sit on indefinite hunger strike till our demands are accepted,” Abidi added.

World Wide Web Consortium for all

Mumbai: Mobility can also mean being able to seamlessly steer through and negotiate one’s way in a jungle of online information to get work done. Any good website should enable that.Yet, not many Indian ones do. At least not for those who can’t see or hear or operate the mouse with ease.

For them, e-mobility or e-access remains as ignored an aspect as mobility in the physical space.

And to think that all it takes to fix this is to conform to the accessibility standards laid down by the World Wide Web  Consortium (W3C) at minimal extra cost. Any good web designer should follow that. And any good government must put a policy in place to ensure that it happens, especially when it is signatory to the United Nations Convention on the Rights of People with Disability, which warrants such action.

Intent, however, isn’t the problem. But limited awareness about how information and services can be best delivered to persons with disabilities is. And for a country with close to 70 million people with disabilities, awareness can mean the difference between booking an e-ticket and buying one from the railways counter, between living independently and relying on others for things they can easily do for themselves.

Addressing this is the recently launched 125-article-rich wiki, being executed by the Centre of Internet and Society (CIS) Bangalore and funded by the National Internet Exchange of India, New Delhi. The wiki intends to be a  comprehensive resource for users, caretakers, web developers, NGOs, teachers, and members of legal communities for
information on what technology — hardware and software — and related legislations offer persons with disabilities.

Web standards prescribe that a description of a graphic or a visual be added for the benefit of visually impaired persons so that any screen-reader can read it. For someone with hearing disability, sound alerts should be accompanied by visual cues, and audios tagged. For those who cannot operate the mouse and hence rely on desk keyboards or
onscreen keyboards, developers should incorporate built-in shortcut keys for efficient access.

“But the W3C standards are not binding; it is something countries adopt. In India, these guidelines have been made advisory for Government websites, not mandatory,” says Nirmita Narasimhan, programme manager, CIS, who is also working on drafting the accessibility policy for the Ministry of Communications and Information Technology. Mumbai-based disability activist Nilesh Singit, who has been working on access audits, accessibility and inclusive design, training and research for the past 12 years, says that the standards are simple enough to be used by anyone with basic grasp of HTML. “But some specialised website designers charge high amounts to make websites disabled-friendly. Yes, there are issues of extensive testing of websites to adhere to the standards required. However, there is no relation between the cost and the end product. More awareness needs to be created to break the myth that accessible websites are expensive,” he says.

The Government of India has made accessibility of its websites advisory. But as Nilesh Singit says, if they’re anything like the current railways website — which does little for persons with disability — then it remains to be seen how effective the implementation will be.

Furthermore, the government does not proactively share information with outsiders. “How is one to approach the government unless one knows about the incentives on procurement of assistive technologies, training and awareness camps and educational awareness. Unless this research is made available, you don’t have the base to build on,” says a researcher from the field.

Malvika Tegta / DNA
Saturday, May 15, 2010 1:00 IST

SUPERFEST 2010: International Disability Film Festival

May 10: From Profound to Profane: Superfest Shines a Spotlight on 13 Remarkable Films in 2-Day Festival Celebrating Disability Culture June 4 & 5 in Berkeley  Superfest International Disability Film Festival When a boy’s fluttering eyelashes are finally recognized as communication, 16 years of silent isolation end and a soulful poet’s life takes flight in Like A Butterfly (Poland, Best of Festival), a lyrical, intimate portrait that’s a testament to the profound resilience of the human spirit; the adrenalin rush as the athlete pushes the limits, the awesome beauty of the snowy landscapes, the thrill as the snowboarder soars higher, the tricks, defying gravity, and then, Wipe Out (Canada, Merit) — three compelling stories about life after your head hits the icy hard-pack; unflinching and raw, at times unhinged, The Last American Freak Show (UK, Merit) turns a voyeuristic lens on a low-rent troupe of self-defined freaks and outsiders as they hit the road in a revival of a marginalized “art form” that many believe should have been “bagged and tagged” long ago.  These are just three of thirteen remarkable award winning-films, a taste of what’s in store at the 30th Superfest International Disability Film Festival, a community event celebrating disability culture June 4 & 5 in downtown Berkeley at the Gaia Art Center, 2120 Allston Way. The accessible and affordable event includes Friday and Saturday afternoon screenings of the 13 award-winning films, a lively “Q & A” with attending filmmakers, a meet and greet the film-makers reception and an award ceremony with live entertainment. The festival is presented by Culture!Disability!Talent! (CDT), a grass-roots non-profit dedicated to promoting quality, authentic films that represent the rich diversity of the world’s disability community.

Top Honors

The Best of Festival and Excellence Awards go to three films representing the power, passion, craft and art of the documentary. Taking us to cultures as disparate as Poland, China, and California, these superb films remind us that there are no language barriers or national boundaries in our universal need to be heard, recognized, understood, accepted, and yes, loved and embraced as a valued member of the human family.

Best of Festival Award

Without gimmicks or artifice, Polish filmmaker Ewa Pieta delivers an intricate portrait, charged with brilliant moments of emotional intensity. Like a Butterfly tells the story of Przemek, a 23 year-old poet who spent his first 16 years of life trying frantically to communicate, get someone, anyone, to notice him. When an institution worker finally recognizes his persistent tapping and blinking as dammed up intelligence, his desperate isolation comes to an end. With training on a communication system, Przemek dives passionately into his longed for world of words, eventually earning national recognition for his poetry.

Excellence & Spirit Awards

Rhianon Guiterrez’s When I’m Not Alone is as direct and down to earth as Sam Durbin, the extraordinary ordinary man at its center. Sam’s life, like this story, is all about possibilities. He heads the consumer advisory committee for California’s Department of Developmental Services and is a published author, achievements he never imagined while institutionalized or homeless. This powerful gem, which chronicles Sam’s efforts to reclaim his life with the help of Integrity House, a clubhouse to help people with disabilities become self-advocates, also earned the Spirit Award, given to an outstanding work by a filmmaker with a disability.  In China, families with autistic children face hostility, discrimination, and financial ruin. Services don’t exist. One small school, Stars and Rain, on the outskirts of Beijing, offers a ray of hope. Parents travel thousands of miles with their 5 year-olds to join this intensive 11-week residential course in skills and behavior, aimed at acceptance of the child by public schools. British director, Rob Aspey, skillfully draws us into how hard it is for the Children of the Stars to communicate their needs or show affection. We experience frustration, glimmers of hope, the joy of a father hearing “I love you” for the first time from his son, and our hearts travel with them as they leave and head home to an uncertain future.

The P.K. Walker Award

Named for experimental artist, Pamela Walker, a pioneer in the Berkeley disability arts scene, this award is given to a film that pushes artistic boundaries, that surprises us, that demonstrates innovation in expressing disability experience. With White Sound, Australian filmmaker Sarah Tracton, gives us a totally fresh take on what it means to hear, to listen, when she uses her own hearing loss as catalyst to visually explore the texture of sound.

Awards for Achievement and Merit

Two of the three Achievement Award winners provide windows into the experiences of people restarting their lives somewhere new. Miya of the Quiet Strength was life long activist Miya Rodolfo-Sioson, who first drew national attention as the sole survivor of a campus mass shooting before moving from Iowa to Berkeley to continue her fight for human and civil rights out of the spotlight glare. Filmmaker Daniel Julien’s loving tribute captures the essence of this beloved and respected community worker and the family who supported her efforts. In Beyond Borders, children and adults from Iraq, Uzbekistan and Morocco immigrate to Belgium seeking much needed services or to escape oppression and war in their homelands. Director Brecht Vanmeirhaeghe introduces us to a boy with Down syndrome and his family, a mother who is developing multiple sclerosis and a young blind man determined to run a marathon.

The third Achievement winner and two of the five Merit Award winners are films that focus on the power of art to represent, challenge, and transform ideas about disability, films that call into question the nature of artistic expression. Achievement winner, The Portrait of a Disabled Man, is a documentary about the discovery of an unusual 400 year-old Austrian painting. The man’s body is laid out, as if for a medical examination, but his head is turned to eye the viewer and challenge our gaze. Filmmakers Volker Schoenwiese and Bernd Thomas explore views by disability scholars, activists, and artists on the history and significance of the painting.

Two Merit Award winners also delve into the significance of the gaze that people with visible disabilities are subjected to in public, and how disabled artists can choose to refashion it into performance. Richard Butchkins takes us on a long and winding road trip with The Last American Freak Show, a rough, sometimes messy look at a troupe of unapologetic “freaks” who flaunt their differences and charge you to gaze. David Levitt Waxman takes us inside The Art of Movement with the Bay Area’s world renowned AXIS Dance Company. These dancers, with and without disabilities, know full well that the audience is at first absorbed by what they perceive as different and resist seeing their performance as art, so they raise the artistic bar and push the creative envelope until they astonish audiences with their innovative moves.

Challenging Assumptions

The three remaining Merit winners and the special award for outstanding emerging artist go to filmmakers for films that demonstrate a strong creative vision and powerful point of view. They are:

  • My Friend Claude driven by a bluesy sound track that serves as narrative, is Canadian Yves Langlois‘s unsentimental tribute to his close friend that captures his joie de vivre as he fulfils his bucket list;
  • Wipe Out is Lionel Goddard’s compelling, close-up of three young Canadians who were head injured through extreme snowboarding and are now involved in public education about safety measures;
  • Far From Home is Elissa Moon’s incisive look at life in Laguna Honda, and how a lawsuit against the country’s largest nursing home enabled some disabled residents to escape institutionalization into independent living in the community; and
  • Winner of Emerging Artist award Laurence Parent for Je me Souviens: Excluded from the Montreal Subway Since 1966, her passionate and poetic expose of a long, so far futile battle for accessibility of the Montreal subway.

Public Screening Schedule and Reception/Awards Event

Public screenings of the award-winning films will take place on Friday, June 4, 11 a.m.-5 p.m., and Saturday, June 5, 12-5 p.m., at the Gaia Arts Center, 2120 Allston (one block from the downtown Berkeley BART station) in Berkeley, California. Tickets are $5-$20/day sliding scale and will be sold only at the door. Please refrain from wearing perfume and other scented products. A “Meet the Makers” reception will take place on Saturday, June 5, 6-7 p.m., followed by an awards ceremony with live entertainment from 7-9 p.m. The reception and awards ceremony are free and open to the public.

Access Accommodations Available

The venue is wheelchair accessible. Braille and large print screening schedules are available. All films will be audio described and most are captioned; check screening schedule. Film introductions, as well as the reception and awards event will be ASL interpreted.

For additional access information, or to get a copy of the SUPERFEST 2010 screening schedule, visit http://www.culturedisabilitytalent.org/superfest/index.html, e-mail: info@culturedisabilitytalent.org or call the CDT voice mailbox at 510-845-5576.

Sponsors

Superfest 2010 is made possible in part by the generosity of: AAA Northern California, Nevada & Utah, the California Arts Council, Gabriel Ledger, M.D., the National Arts and Disability Center at UCLA, and the True North Foundation. CDT is also currently funded by the City of Berkeley Civic Arts Program.

DISABILITY NEWS ASIA

Rejig of discrimination laws should enshrine equality for all

DOMINIQUE ALLEN
May 3, 2010

The government needs to back its words on human rights with action.

THE Rudd government recently said it would review the four federal anti-discrimination laws with a view to merging  them into a single act.  The review could be the most significant aspect of the government’s new  human rights  framework – but only if the outcome is a law that will effectively tackle inequality. Australian law has prohibited discrimination for more than 30 years. These laws have eradicated the most overt forms of discrimination. Women can’t be prevented from applying for jobs based on gender. People can’t be removed from a pub because of their race. We cannot afford to be complacent; by no means do we live in an equal society.  Women’s participation in the workforce is 58.7 per cent, compared with 72.1 per cent for men, most women work part-time and many industries remain highly segregated. Race discrimination persists. We only have to think of the recent attacks on Indian students in Melbourne or the fact that indigenous people experience a standard of living well below that of the non-indigenous population. A recent ANU study found that a job applicant with a non-Anglo-Saxon sounding name will find it much more difficult to  get a job interview than an applicant with one. People with a disability face many obstacles in accessing buildings,  services and public transport.

The reason for this discrimination is dealt with case by case. There is no institution, like the ACCC or the Ombudsman, that can make sure that people are given a ”fair go” at work or school, or in the services they receive. It is up to victims to do something about discrimination.  If I am discriminated against by a potential employer because I am female and likely to have children soon, my only option, apart from trying to sort the matter out with the employer, is to lodge a complaint with the Australian Human Rights Commission. The commission will arrange a conciliation conference for the parties and we’ll try to resolve the issue. The chances are we will. We’ll spend a few hours discussing what happened and I’ll walk away with a small financial settlement in return for not going to court and keeping the matter confidential. That will resolve the issue for me, but what if there are other women in the workplace who have had a similar experience? What about other employers who are considering doing the same thing? Will my complaint deter them?

The answer is that the system can do little to help people in a similar situation to mine, or to discourage potential discriminators. If the Rudd government simply decides to combine the race, sex, disability and age discrimination acts under one umbrella act, nothing will change; Australia will continue to tackle discrimination in a piecemeal fashion. There is another option. The government could commit to actively tackling inequality and introduce the legal tools to achieve it. This is not a novel idea. Other countries have been doing it for decades. In the US, at least since the Kennedy administration, government contractors have been required to take action to ensure their workforces are  representative, or they risk being ineligible for government contracts. In Northern Ireland, specific employers have been required to achieve fair participation of the Catholic and Protestant communities in the workforce since 1989. South Africa introduced similar requirements to remedy decades of apartheid. In Britain, equality is promoted beyond employment. Public authorities have to consider the need to promote equality of opportunity based on race, gender and disability when carrying out their functions. This meant that when the Department of Health became aware that diabetes was prevalent among Britain’s Afro-Caribbean community, it made sure that its national framework for  tackling diabetes took the needs of that community into consideration. The Rudd government could also follow Victoria’s lead. Just last month, the Victorian government introduced laws that will enable the Equal Opportunity and Human Rights Commission to launch investigations into persistent or entrenched discrimination, rather than relying solely on victims to do something about it. Following an investigation, the commission will work with the organisation to resolve the issue.

The organisation may only need to change its behaviour or it may agree to something more comprehensive, such as developing an action plan to eliminate discrimination. Australian governments were once leaders in promoting equality and protecting human rights on the international stage. Let’s not forget that South Australian women were the first women worldwide to be extended the franchise as well as being allowed to stand for election. The Rudd  government recently reasserted Australia’s commitment to protecting human rights by becoming one of the first countries to sign the Convention on the Rights of Persons with Disabilities. It’s time for this government to bring that commitment to equality home by introducing laws that actively promote equality and give substance to the catch cry, a ”fair go” for all.

Dr Dominique Allen is a research fellow at the Institute of Legal Studies, Australian Catholic University.