Keen and able

Malay Desai

This World Disability Day, we looked back at five memorable characters in films on disability… and reflect upon what we can seek from them.

‘The International Day of People with Disability’, ever since United Nations put it on the global calendar, falls on December 3 every year, and unlike its predecessor of two days, the World Aids Day, goes largely unnoticed in our part of the world.

Issues related to disability need not make it to mainstream news and discussions only after cases of discrimination or crimes, for we Indians have good reason to talk about and get sensitized to some facts. Facts such as the 70-100 million disabled citizens of our country.

Without any more statistical details to intimidate you, here we present our favourite picks of film characters; those who’re not necessarily disabled themselves, but have given away a crucial lesson or two through their films. Beware, this list is only indicative and post year 2000, for a fresher recall. For best results, call your local DVD parlour and revisit these masterpieces.

1. Jean Dominique – The Diving Bell and the Butterfly

Lauded as one of the greatest films on disability of all time, this Belgian drama is the true story of the extraordinary life of French magazine editor Jean Dominique, who suffers a stroke and finds himself ‘trapped in’ a completely paralysed body – but for his left eye.

Jean’s character, who is grappling through the film to accomplish and publish a book simply by batting his eyelid to communicate with his people, is one of the most inspiring ones you’ll see on screen. His therapist is an epitome of patience too, for reciting the entire alphabet repeatedly to wait for his ‘blink’.

Jean managed to write, edit and published his book.. and in the process also brought together his ex and current lovers, aged father and children. He died days after publishing it. The lesson: impossible is nothing!

2. Joseph Braganza – Khamoshi

Closer home, we dare not leave out one of Bollywood’s most endearing disabled characters – Nana Patekar’s Goan man of the musical Khamoshi. Credit to his incredible acting or to director Bhansali for etching out an in-depth character, but truth is that Mr Braganza taught many of us how to emote, and that there is no such thing as too much emotion.

Braganza, a deaf father and husband amidst tough domestic relationships, introduced the masses to the charms of the Indian Sign Language. That said, he also let his eyes do the talking… and crying too, bucketfuls of it.

Next time you see your child achieve/lose anything, be sure to let them tears flow like nobody’s watching. It’s a therapy that will win you many friends, and bring you closer to yourself!

3. Driss – The Intouchables

Earlier this year, a French film about a quadriplegic man and his relationship with his caretaker fleeted by our urban theatres, and chances are that you might’ve not heard of it at all.

Driss is a broke black man newly hired by an aristocrat for his personal upkeep as he has quadriplegia. The former, simply by being his brash, unapologetic and casual self, wins over the heart of his boss and others; and embarks upon many self-discovering adventures too. Like the Diving Bell, this one’s a true story too!

The lesson – you need not study protocol or think twice before interacting or forming new equations with disabled persons. A healthy dose of humour, friendship – even if insensitive – is preferable over ignorance.

4. Barfi

So much has been written and talked about Ranbir Kapoor’s portrayal of a deaf character that we thought it won’t be worth featuring it here; but  testing your retention capacities is worth it!

It’s a fact that unlike Barfi, most men with verbal or auditory impairments lack the panache and confidence to begin conversations with strangers or make the mischief he does in the film. But the point to be taken here is – they can be as flirtatious, friendly or conniving as any guy next door. Bring them out of their shell, using sign language is a good hook to do so!

Besides, thanks to some responsible film making, we learnt through Barfi that mockery or sympathy have no place in interactions with disabled persons.

5. Nikumbh sir – Taare Zameen Par

Finally, we must invoke our man Aamir’s character in the 2007 film to wind up this list. Firstly, here was a ‘hero’ of Indian cinema who’s not into daredevilry, but is a simple, passionate teacher. Nikumbh sir, through his sensitive attitude and body language in class (we saw much of that in Aamir Khan himself in Satyamev Jayate this year), won over the hearts of many.

Perhaps the most impact this pretty old-fashioned teacher with new values had was in the scenes when he roars at parents of the autistic child for being regressive. His words were lessons in parenting to many – especially to those who see their children as ‘investments’ – ready to push them into the most ‘lucrative’ fields.

Respecting each child’s uniqueness and abilities, whether he/she’s disabled or not, was Nikumbh sir’s biggest lesson, which is worth re-visiting regularly in India!

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

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

Nilesh Singit

A law that enables

The National Advisory Council’s suggestions for strengthening the draft law on the Rights of Persons With Disabilities (PWD) is a potentially far-reaching intervention. The step is in sync with the recent notification of a separate Department for Disabilities in the Union Ministry of Social Justice and Empowerment, which was announced in the President’s 2012 address to Parliament. Ever since India ratified the United Nations Convention on the rights of PWDs in 2007, the formulation of a comprehensive law became imperative and these two developments suggest things are finally moving ahead. Currently, there are four separate pieces of legislation pertaining to India’s disabled population.

The earliest, the 1987 Mental Health Act, predates the discourse on affirmative action for the disabled in India and, to that extent, the status of mental illness as a disability remains ambiguous. Then, there is a separate law that deals with the creation of qualified and trained personnel for the provision of rehabilitation and education services for this segment of the population. The third, the PWD Act of 1995, is underpinned by an emphasis on anti-discrimination and guarantees of equal opportunities. Although the latter was envisaged as a comprehensive law, it did not address fully the conditions of persons with other equally severe disabling conditions. Hence the 1999 Act for people with autism, cerebral palsy, mental retardation and multiple disabilities.

It is hardly surprising that these four laws in themselves have not mitigated the sense of apathy and bureaucratic red tape that hamper the creation of an enabling environment. The mechanisms and procedures involved are riddled with duplication and inconsistencies, as evidenced by the evolving case law over questions of jurisdiction and interpretation of different laws. More than a billion people around the world experience one or another form of disability, according to the World Health Organisation and World Bank 2011 report. On other estimates, about 10 per cent of the population in developing countries is disabled. By any reckoning, India’s numbers would be much larger than what governments are prepared to acknowledge, given the detrimental influences of poverty, illiteracy and poor health on disability. It follows that stepping up investments in health and education is one of the important ways of preventing disabilities and mitigating their impact over the long term.

Requiring service providers to furnish a declaration of conformity with the relevant laws is the other means to ensure accountability and effective enforcement. An umbrella legislation will go a long way in altering the present state of affairs.

The Hindu

Time to inflict pain on the terminally ill

How do YOU suggest we cut the deficit then? You’ll be asked this if you ever oppose a cost-cutting scheme, such as merging the sewer system with the library service or something. So here’s one answer, we could pay a bit less to ATOS, a company that receives £100m a year from the Government for assessing who should be cut off from disability benefit.  The method they choose is to interview each claimant, asking them a series of questions such as, "Do you look after your own pets?" Because clearly if someone can feed a hamster they’re capable of driving a fork-lift truck. Another is "Do you cry?" If you do, you’re probably told it’s all very well being depressed but there’s no reason why you can’t get a job imitating actresses who’ve won an Oscar, or hiring yourself out to appear at funerals to make it seem the deceased knew more people than they did.

During this questioning the interviewer taps the answers into their computer, which makes an automatic calculation as to whether the claimant loses their benefit. This is so much quicker as a method of assessing health than the old-fashioned way of examining someone.  Hospitals should follow this example. Instead of faffing about with X-rays and stethoscopes, the consultant could say, "Which do you prefer, pizza or a curry? Who would you rather have to dinner out of Fearne Cotton and Dermot O’Leary? OK, let’s see what the computer says – aah, you’ve got gallstones."

Maybe the plan is to turn the whole process into a radio panel show called "Fit on the Fiddle", in which claimants answer the questions from a panel including regular captain Gyles Brandreth. One man who might as well have done this was Larry Newman, who attended an ATOS interview with a terminal lung disease, when he could hardly breathe. So he took his medical records and ATOS ignored them, preferring their method of asking questions.  They decided there was nothing wrong with him so his benefit was cut, and a few weeks later, as the hospital attached a ventilator he’d have to wear permanently, with splendid jollity he said to his wife: "Still, at least I’m fit for work." He died a few weeks later, and I expect if his wife took him in again now they’d still say there was nothing wrong with him and send him for an interview to be a town crier.

Still, the cuts have to be made somewhere so I suppose it’s only fair that the brunt of them should fall on the terminally ill. But here’s where it gets complicated. The ATOS system has worked so well that in the past three years 160,000 people have successfully appealed against their decision. So from now on perhaps they’ll use a more reliable method, such as rolling two dice and anyone who gets eight or over loses their money. Or they could still call people in for interviews but do three at a time while the assessor lines them up and goes, "If dip dog shit, you are not it", and the loser has to crawl to the job centre.  The trouble is that these tribunals have cost £30m (and you’ll laugh at this bit), and that money is paid by the Government, out of taxes. So they still get paid the £100m, out of taxes, and all the mistakes are paid for out of more taxes.

It’s like a minicab firm that always takes you in the wrong direction, but you still have to pay them, then they charge you again to bring you back where you started. And to complete the analogy, on the way home they run someone over and shout: "If you can stroke a cat there’s nothing wrong with you", as the victim is carried into the ambulance.  So here’s my suggestion. On live television ATOS are called in for an interview by a panel of disabled people, who ask them to mime looking after their pet, then assess whether they’re entitled to still get £100m or have to go and get a proper job.

Mark Steel, The Independent

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

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.

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

What Women Want: The ability debates

DEEPA ALEXANDER

The triumphs and disasters of the differently-abled in India are two ends of the spectrum. Among the 70 million disabled in our country are those who have conquered peaks, won gold at the Paralympics, and raced in Himalayan and desert car rallies. But, millions more struggle to meet daily challenges in a society that tends to portray the disabled  as either heroes or victims with little or no access to their rightful resources. The proposed amendments to the Copyright Act (1957) are seen as restrictive and discriminatory, as the copyright exception, which aims at allowing persons with disability easy access to copyrighted material, applies only to certain types of disability. We spoke to activists who address these issues, not as charity or welfare but as matters of development and dignity.

Change in attitude

National Trust’s programmes work on building capacity, changing patronising attitudes, building trust in the abilities of people with developmental disability and creating an equal playing field. Unfortunately, deeply entrenched attitudes  continue to exclude people with disabilities. Even if an opportunity is given, it is given only once; if a person with  disability fails, incapacity is assumed. But, in the recent case of a young woman with intellectual disability who had been raped in a women’s home, the Supreme Court upheld her right to ‘choose’ to keep her baby, and she has proved to be a competent mother. However, the disapproval of the intelligentsia in the media is an indicator of the social prejudices people with disabilities have to live with.

Implement their rights

Ability Foundation’s thrust is on creating an equitable society. Through our magazine Success & Ability, we spread this message at a time when service to the disabled was seen only at the physical, and not at the emotional level. Persons with disabilities need access to inclusive education, employment and public places. Being ‘accounted’ in the Census 2011 will open up a plethora of possibilities. Accurate data will enable Government intervention at various levels, leading to proactive action. We need ramps for wheelchair users, audio announcements in bus / train stations for the visually-impaired, and video announcements for the hearing-impaired. Floor numbers in Braille for lifts, sign language interpreters in every hospital, police station and court of law, slip-proof flooring in malls, and large-print books in public libraries for those with low vision are the other needs. The implementation of the rights of persons with disabilities as per the United Nations convention and the Persons with Disabilities Act (PWD), in letter and spirit, is also essential.

A development issue

My daughter Tamana was born with cerebral palsy. It pushed me to found an organisation in 1984 to fulfil the dreams of children with special needs and those of their parents. Therapy and counselling for children and their families is essential for optimum adult rehabilitation. Since Independence, the disabled have been categorised along with sections such as women, Scheduled Castes and Scheduled Tribes. While these have had powerful political lobbies, there has been no spokesperson for the disabled. The dichotomies between the Ministries of Education and Social Justice further worsen the exclusion. Most policy-makers look at disability as a welfare, not a development issue. Disability should be jointly addressed by the Ministries of Health, Women and Child Development, HRD, Social Justice and Empowerment. The definition of disability in the PWD Act does not include autism, which leaves out nearly two million autistic persons in India. Admitting disabled children in normal schools is not enough — you need to have professionally trained staff, who are sensitised. I also hope for a different curriculum for special children, even as they are being integrated in the mainstream. Better pay scales will also bring in more jobs in the disability sector.

Public-private partnership

NGO-run establishments provide free schooling for disabled children. The Government has provided legislative intent  through the Inclusive Education Act, which makes it mandatory to include all kinds of impaired children. However,  Government schools that cater to the poor are generally marked by grossly inadequate infrastructure and teaching  aids, so imagine the predicament of the disabled. I would like a public-private partnership for day-care and residential  institutions which provide educational and recreational service on a long-term basis. This needs to be supported by   research institutions which focus on technology, communication and teaching aids. We need to benefit from global  expertise, and customise them to local needs. As Childline’s primary mandate is child protection, I feel that the  Government must compulsorily provide for a child protection policy in any institution that deals with disabled children, as, such children are more vulnerable to abuse.

The copyright angle

The Centre for Internet and Society is associated with the copyright amendment movement for persons with  disabilities, and is one of the founding organisations for the Indian Right to Read campaign. At present, the proposed copyright amendment is detrimental to the disability sector’s needs. The exception extends only to ‘specially designed’ formats such as Braille and sign language, and does not benefit the millions who have cerebral palsy, dyslexia and low vision, and the visually-impaired persons who do not know Braille. Such persons require audio, reading material with large fonts and electronic texts, which are not ‘specially designed’ formats. For conversion to non-specialised formats, the amendment proposes a licensing system, which will permit only organisations working for the benefit of the disabled to undertake conversion and distribution. This will prevent educational institutions, SHGs, other NGOs and print-disabled individuals from undertaking conversion. The licensing system will also require approaching the Copyright Board for each work, which will be extremely time-consuming. The waiting period for obtaining permissions and subsequent conversion will result in students losing academic years, a violation of their right to education. The  proposed amendment violates the Constitutional guarantee of equality under Article 14 since it discriminates between  those visually-impaired persons who know Braille and those print-disabled persons who do not. It is important for the  nation as a whole to take the concern of persons with disabilities as a mainstream concern.

The Hindu

Differences in language circuits in the brain linked to dyslexia

Milan, Italy, May 10: Children with dyslexia often struggle with reading, writing, and spelling, despite getting an appropriate education and demonstrating intellectual ability in other areas.  New neurological research has found that these children’s difficulties with written language may be linked to structural differences within an important information highway in the brain known to play a role in oral language. The findings are published in the June 2010 issue of Elsevier’s Cortex (http://www.elsevier.com/locate/cortex).

Vanderbilt University researchers Sheryl Rimrodt and Laurie Cutting and colleagues at Johns Hopkins University and Kennedy Krieger Institute used an emerging MRI technique, called diffusion tensor imaging (DTI), to discover evidence linking dyslexia to structural differences in an important bundle of white matter in the left-hemisphere language network. White matter is made up of fibers that can be thought of as the wiring that allows communication between brain cells; the left-hemisphere language network is made up of bundles of these fibres and contains branches that extend from the back of the brain (including vision cells) to the front parts that are responsible for articulation and speech. “When you are reading, you are essentially saying things out loud in your head”, said Cutting. “If you have decreased integrity of white matter in this area, the front and back part of your brain are not talking to one another. This would affect reading, because you need both to act as a cohesive unit.”

Rimrodt and Cutting used the DTI technique to map the course of an important white matter bundle in this network and discovered that it ran through a frontal brain region known to be less well organised in the dyslexic brain. They also found that fibers in that frontal part of the tract were oriented differently in dyslexia.  Rimrodt said, “To find a convergence of MRI evidence that goes beyond identifying a region of the brain that differs in dyslexia to linking that to an identifiable structure and beginning to explore physical characteristics of the region is very exciting. It brings us a little bit closer to understanding how dyslexia happens.”  Rimrodt is assistant professor of developmental medicine and Cutting is Patricia and Rodes Hart Chair at Peabody College at Vanderbilt.  The researchers completed the work at the Kennedy Krieger Institute with their colleagues there before moving to Vanderbilt. The research was funded by the Johns Hopkins School of Medicine General Clinical Research Center, the Kennedy Krieger Institute’s Learning Disability Research Center and F.M. Kirby Research Center for Functional Brain Imaging, the National Institute for Neurological Disorders, and the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

DISABILITY NEWS ASIA

Manmohan promises disabled-friendly laws

FIGHTING FOR THEIR RIGHTS: Physically challenged persons, under the banner of the National Platform for the Rights of the Disabled and led by CPI(M) leader Brinda Karat, march on Parliament Street in New Delhi on Tuesday to press their demands. Photo: V. Sudhersan

Prime Minister Manmohan Singh on Tuesday said the government was in favour of amending the laws, if need be, to make them more disabled-friendly. He gave this assurance to a delegation of the differently-abled persons who met him in Parliament. The delegation was led by CPI (M) MP Brinda Karat.  “The Prime Minister was extremely sympathetic towards the demands of the disabled persons and said their demands were genuine,” Ms. Karat said. Dr. Singh assured the delegation of changing the laws to make them disabled-friendly, if necessary. The Prime Minister interacted with the members of the delegations and enquired about their problems. Talking to The Hindu, Ms. Karat said this was the first time that a delegation of differently-abled persons had visited Parliament House. “It was pointed out to the Parliament staff that there was only one gate (Gate no 9) in Parliament House for the physically disabled people and this was far away from the main entrance,” Ms. Karat said. The delegation also met the Union Minister for Social Justice and Empowerment Mukul Wasnik who told them that the government was finalising a new law for the disabled that would replace the existing law.

Earlier, a large number of people with different forms of disabilities marched to Parliament House to demand a better deal. Marching under the banner, ‘National Platform for the Rights of Disabled Persons,’ the people highlighted the plight of the economically and socially disadvantaged among the disabled, the poor, and the Scheduled Castes and the Scheduled Tribes. “The basic issue is that of the approach of the government and we must request you to consider our demands not as an act of charity but as fulfilment of entitlements and rights as equal citizens of India. India is a signatory to the United Nations Convention on the Rights of the persons with Disabilities which enjoins the government to ensure minimum rights and livelihood to disabled citizens,” the marchers said in a memorandum submitted to the Prime Minister. The demands include a comprehensive social security system for all persons with disabilities and their families including the Antyodaya cards, free health care for disabled persons, amendments to the Right to Education Act to make provision for disabled teachers and professional and identification of jobs for the disabled immediately with annual special recruitment drives each year.

Besides setting up a separate Ministry for disability affairs, the memorandum also sought issuance of a universally valid identity card and replacing the current Persons with Disabilities Act (1995) in consonance with the provisions of the U.N. Convention and harmonising other laws, the disabled persons also wanted proper enumeration of the persons with disabilities. The organisations that participated in the march included the Paschimbanga Rajya Pratibandhi Samaiilani, the Differently Abled Persons Welfare Federation of Thiruvananthapuram, the Karnataka Rajya Angavikalara Mattu Palakara Okkota, the Jharkhand Vikalanga Morcha, the Tamil Nadu Association for the Rights of all types of Disabled and Caregivers and the Vibhinna Prathiba Vanthula Jakkula Vedika of Andhra Pradesh.

The Hindu

The Disability Pact in the EU 2020 Strategy

Written by Inclusion Europe

12 April 2010

The Disability Intergroup is a group of persons who want to improve rights for people with disabilities. They met at the European Parliament.  They tell policy makers of the European Union what measures they should take and how they should use money. On 23 March a meeting hosted by Adám Kosá, president of the Disability Intergroup, and the European Disability Forum (EDF) took place at the European Parliament. Experts on disability policies discussed how the Disability Pact can be integrated into the EU 2020 Strategy. The disability movement’s objective is to direct EU 2020 toward equal opportunities, social protection and inclusion of people with disabilities. The long term goal is to improve the lives of about 65 million of European citizens with a disability. Adám Kosá, who is the first deaf Member of the European Parliament, urged EU leaders at the meeting to adopt the Disability Pact. He also called on organizations and NGOs to maintain the pressure on policymakers to include the Disability Pact into the EU 2020 strategy. The Disability Intergroup wants to ensure that the European Union budget is used to benefit the rights of disabled people and not for building up or maintaining barriers. Their main objective is to direct funding to programs that promote accessibility and non-discrimination, increase the employment rate of disabled people and advance the ratification and implementation process of the UN Convention on the Rights of Persons with Disabilities (UNCRPD). Ádám Kósa said that the four-year program for the Intergroup has been adopted. The issue of the deposition of the UN CRPD will be discussed at the next Intergroup meeting in Strasbourg on the 20 May. Delmira Seara, Counselor for Social Affairs at the Permanent Representation of Spain, and Gábor Iván, Hungary’s Ambassador to the EU, committed themselves to mainstream disability in all relevant flagship initiatives of the Europe 2020 strategy. But despite modern legislation and policy proposals at European level, people with disabilities and their families still face social exclusion and discrimination in their every day lives. Wasilios Katsioulis, who has a disability himself and is a Member of the Parliament’s Disability Support group talked at the meeting about the exclusion of his son from the European school in Brussels. According to Wasilios Katsioulis his son who is autistic was expelled from the European school in Brussels which made no effort to meet his son’s needs. The child speaks only German and does not understand other languages because of his disability. Consequently, he spent 8 months at home without schooling. The family had to arrange that the son lives in a German speaking community in Belgium with his mother during the week in order to go to school and the family can only unite over weekends. Article 24 of the UNCRPD on education states that States Parties should “ensure an inclusive education system at all levels” and that “persons with disabilities are not excluded from the general education system”. The Disability Pact wants to provide a framework for inclusion and promotion of disability rights and policies in EU Member States and at European level. The Disability Pact is based on the principles of improving the living conditions of disabled people and their equal rights. The framework of the Pact relies on existing policies at international, European and national level. A successful inclusion of the Disability Pact into the European 2020 strategy would direct the strategy’s goals toward issues such as equal employment opportunities for people with disabilities, social protection and inclusive education. To find out more about the disability intergroup, please click here To read more about the Europe 2020 Strategy, please click here

Profile: Bethany Stevens, Disability rights activist

April 5, 2010 at 5:00 pm by Bobby Feingold in Profile

Bethany Stevens, who holds both a law and sexuality studies degree and works at Georgia State University’s Center for Leadership in Disability, recently helped organize the Reel to Real Disability Film Fest to better portray the realities of disabled people.

When did you first become involved in disability rights activism?

I lost somebody that I loved to suicide. Before he committed suicide, he told me that the reason he was feeling so tired was that he couldn’t achieve erections because he had a spinal cord injury. I also hosted a conference about disability and sexuality while I was in law
school, and that [experience] really shifted my focus to disability and sexuality.

Tell us about the film festival.

I’ve selected films that focus on people with disabilities played by actual people with disabilities. We’re moving away from things like My
Left Foot with Daniel Day-Lewis, when people get Oscars when they play people who are disabled. Similarly, if they act like they’re gay —
like with Milk. That’s just annoying. There are actors who are disabled and gay Why can’t they be playing those parts? Shouldn’t they have visibility? Shouldn’t they have a presence in media?

Why do you think so few people, both disabled and non-disabled, have neglected to have meaningful conversations about disability?

I think part of it is that people don’t want to be disabled. I think that my visual presence — disabled people’s visual presence — frightens
nondisabled people because it’s a slippery category. People can slide into it with that freak accident. I also think that historically we’ve
been excluded, and we’ve been institutionalized. We’ve just now been coming out. We’re just now being able to physically access places.

What do you see for yourself in the future?

I want to be a scholar-activist forever. I want to get into media production. I want to start making films and short documentaries. I want people to pay me to speak all over the world. I have a book that I need to publish. I’m definitely going to be a die-hard disability
activist until I die.

(Photo by Joeff Davis)

EU Accession to the UN Convention: A great advanced stopped in its tracks

EDF participates in the public hearing organised in Brussels by the European Parliament on 22 February to discuss the EU accession to the UN Convention on the Rights of Persons with Disabilities. European Voice publishes today an article signed by EDF President Yannis Vardakastanis and Chairperson of the European Parliament Subcommittee on Human Rights Heidi Hautala to expressing a concern that millions of Europeans may have to wait years before they benefit from the EU’s ratification of the UN Convention on the Rights of persons with disabilities. In November, for the first time in its history, the EU as a body gave a formal accord to accession to an international human-rights treaty – a convention that affects around 65 million people in Europe and 650 million worldwide. So the signature that the EU attached to the United Nations Convention on the Rights of Persons with Disabilities was both historic and of huge practical importance.

Indeed, for the disability community in Europe, its significance is hard to overestimate: never before has the EU made such a public, long-term commitment to issues such as equality and non-discrimination of disabled people in all areas of life, recognised their right to live independently in the community and accepted an obligation to take disability into account in all international co-operation work. But whether this commitment has a real impact depends on the EU’s member states. The Council of the European Union adopted the decision to ratify the Convention on 26 November but the Convention – already in force in almost eighty states worldwide – will become binding on the EU only when the ratification instrument is formally deposited with the United Nations. The Council says it can deposit it only when each member state has ratified the treaty. This is a political decision, rather than a legal requirement: the European Community has previously ratified international agreements without waiting for all of its member states to do so.

It is a decision that is proving far-reaching. Of the 79 countries that have ratified the Convention to date, only 13 are EU states (Austria, Belgium, Czech Republic, Denmark, France, Germany, Hungary, Italy, Portugal, Slovenia, Spain, Sweden and the UK). The talk among officials is that it could take years for the other 15 to put their stamp on the treaty. This effectively means that disabled people in the 13 member states that have already completed ratification can enjoy only some of the rights granted them under the Convention: a disabled Italian woman can complain about violation of her rights if the law or policy in question is based on national law (which must be in accordance with the Convention), but not if it is based on EU law (which does not yet have to respect it). This leaves disabled people across the EU without the full benefits of the Convention. To date, persons with disabilities have systematically faced barriers, exclusion and discrimination in their daily lives. With the Convention in force, EU member states would be obliged to remove barriers, to stamp out discrimination and to adopt inclusive policies in areas such as transport, cohesion funds and the free movement of goods, persons and services, to name just a few. States Parties, including the EU, would be obliged to actively involve organisations representing disabled people in the development and implementation of legislation and policies, and the EU would submit regular progress reports to the UN Committee on the Rights of Persons with Disabilities.

As these examples suggest, the Convention marks a radical change in thinking about disabilities. In the 2000s, there was a realisation – within the EU, and around the world –that the only sustainable approach to disability was one based on human rights. The old approach – to rely on charity – had limited disabled people’s access to ordinary life and  limited perceptions of them. The political reluctance to proceed with the EU ratification without waiting for the remaining 14 member states – to be done with national ratifications – keeps persons with disabilities in their old position, as recipients of charity. It places traditional champions of human rights – EU states – behind many other states. It leaves 65 million Europeans without the respect, defence and promotion of their rights that the EU has a whole says they are entitled to. And, it makes the millions of disabled Europeans who already know about the Convention doubtful about their government’s  good will and commitment to them.

Check  program of the public hearing organised by the European Parliament 22 February

FIMITIC

International Federation of Persons with Physical
Disability

M.S.J.E. considering a new law over amendments, Wasnik tells D.R.G.

p>D.N.I.S. News Network, India: In what can be termed as a big step forward for the Indian disability sector, Ministry of Social Justice and Empowerment (M.S.J.E.) is finally considering the option of going in for a brand new law based on U.N.C.R.P.D. as opposed to their earlier stand on going in for amendments to the archaic Disability Act of 1995. This was disclosed by Minister M.S.J.E., Mukul Wasnik in a meeting with a delegation of Disabled Rights Group (D.R.G.) led by Convenor Javed Abidi on February 9.  Although it was clear that Wasnik was still mulling the option, he said that he was “open to the idea” of going in for a new law. He had maintained a similar position in August when the D.R.G. delegation met him. However, this is the first time Wasnik has publicly spoken about a new law. He also talked about the possibility of going in for a new law in a meeting with the Parliamentary Committee on Social Justice on February 8.

Wasnik refuted the rumour that M.S.J.E. is going to place the Amendments Bill in the coming Budget Session. He hinted that the Ministry may consider going in for more consultations on the issue of a new law.  Abidi once again reiterated the unanimous demand of the disability sector for a new law that was observed in the National Consultation held by National Centre for Promotion of Employment for Disabled People (N.C.P.E.D.P.) and the North Zone Consultation thereafter.  The D.R.G. delegation consisted of Arun Rao, Executive Director, The Deaf Way Foundation; A. S. Narayanan, Secretary, N.A.D.; Dr. Achal Bhagat, Director, Sarthak; G. Syamala, Executive Director, A.A.D.I.; J. P. Gadkari, President, Parivaar; Radhika Alkazi, Managing Trustee, A.A.S.T.H.A.; Dr. Shanti Auluck, Director, Muskaan; and Vandana Bedi, Consultant, Disability and Development.

It may be mentioned that N.C.P.E.D.P. and D.R.G. are going ahead with their Zonal Consultations, as well as the drafting of the new law by the D.R.G. Core Group as planned.

DNIS, 15th Feb 2010

Nasscom to start job portal for aspirants with disabilities

Deepa Kurup

It will issue advisories on working towards accessibility

BANGALORE: Soon, the IT sector’s commitment to inclusiveness towards the disability sector will be etched in cyberspace. Industry trade body Nasscom (National Association of Software and Services Companies) will launch a dedicated portal that will facilitate recruitment for persons with disability by creating a repository of applicants, available skill-sets and potential recruiters.  This was one of the key agendas at the first-ever meeting of the newly constituted Nasscom disability advisory group. Disability rights activists, who celebrated the creation of this 12-member group last week, are now ecstatic to see that the group — comprising Nasscom, industry members and civil society groups — means business.

Info kits

Speaking to The Hindu, the group’s chairperson Pradeep Gupta said that the measures would work towards increasing employability for persons with disabilities. Further, the group decided that informative kits, prepared by the National Centre for Promotion of Employment for Disabled People (NCPEDP), would be circulated among Nasscom members to create awareness on existing initiatives. “ICT firms have their heart in the right place. Now, we will work towards getting the brain part right. There is no lack of will, but issues like accessibility (technical and physical) may not have been thought about. Our aim will be to build that awareness,” Mr. Gupta said. The group, with a tenure of two years, decided that Nasscom would issue advisories to its member companies. These advisories would be on physical accessibility (in accordance with guidelines submitted by NCPEDP on facilities such as ramps or lifts) and software or technical accessibility.  It would focus on compliance of websites and electronic products with international standards.  Javed Abidi, director of NCPEDP, believes that the creation of an industry forum can make an impact. Internationally, it is mandated that websites be WCAG. 2.0 Compliant (an international standard that ensures websites are disabled-friendly) and electronic goods are disability-friendly. “What has held us behind?” he asked.

Double standards

Today, a year after the Union Government issued guidelines that all websites be disabled-friendly, only one of the 5,000 sites has complied, he said. “Even private Indian firms that ensure disability-friendliness while creating or servicing goods for the international market have for long practised double standards when it comes to domestic products such as mobile phones, microwaves or even ATMs. If this group can achieve that transition it will be worthwhile.” While this is not a diktat to companies, it will at least create awareness and sensitivity in the private sector. Nasscom president Som Mittal said that the group would work towards leveraging technologies to skill people who are differently-abled, so they could find jobs and employability in various sectors. “Accessibility can be built into the design. But the real challenge will be to work towards building technology that can facilitate better access and inclusivity. Also, several companies already have inclusive programmes, for employment and training, and we hope other companies will benefit from their learning through this forum,” Mr. Mittal said.

The Hindu

Ad Campaign Gives Disabilities Workplace Cool-Factor

By Michelle Diament

January 29, 2010

There’s no sob story in a new national push to promote hiring of people with disabilities. In fact, the advertising campaign launching this week hardly even mentions the word “disability.” Instead, the focus is on the many quirks found in the workplace — everything from the co-worker who talks too loud to the one who can’t put together a decent outfit.

The idea is that disability presents just one more element to workplace diversity and that hiring people with disabilities can be cool. In one ad, for example, a man who is dubbed “rhythm impaired” is shown clumsily dancing alongside the tag line: “Just because someone moves a little differently doesn’t mean they can’t help move your business forward. The same goes for people with disabilities.” Unlike most previous national efforts to encourage disability employment which relied on donated ad space, this one is funded by disability employment agencies in 30 states and has a $4 million budget for the first half of 2010 alone. The ads targeted at managers, executives and human resources professionals at companies of all sizes are slated to appear on television stations like CNN, ESPN and NBC, in print publications like Fortune and The Wall Street Journal and online, reports The New York Times. To read more click here.

The campaign dubbed “Think beyond the label,” comes as the unemployment rate among people with disabilities was at 13.8 percent in December compared to 9.5 percent for the rest of the population, not seasonally adjusted.

Copyright © 2010 Disability Scoop, LLC. All Rights Reserved. For reprints and permissions click here

Education is Challenger’s challenge

L.A. County’s largest detention center is failing at its basic job: rehabilitating the youths confined there.

By Mark Rosenbaum, Laura Faer and Shawna L. Parks

January 25, 2010

Challenger Memorial Youth Center in Lancaster is both Los Angeles County’s largest juvenile detention camp and its greatest failure.  It costs as much as $50,000 a year to house a youth at Challenger — about the same amount as tuition and room and board at an Ivy League university. But that’s where the comparison ends. The facility’s school is appalling, with 95% of its students scoring below proficiency on state exams.  Challenger is the target of a U.S. Department of Justice investigation into mistreatment and poor supervision of the 650 students housed at the facility’s six juvenile camps. It was cited in a 2009 county Probation Commission report as operating a “broken” school system. And this month, our coalition of nonprofit organizations filed a lawsuit asking that the county be ordered to meet at least minimum standards in educating our community’s most at-risk youth.

A young man we identify in court papers as Casey A. was kept in custody at Challenger during his high school years and given a high school diploma late last year, despite being unable to read or write. Rather than coming up with a strategy that would teach him to read, a teacher at Challenger appointed a “para-educator” to read assignments out loud to him. Knowing that Casey was illiterate, the staff fed him answers so that he could pass the required state exams.  Miguel B., another student who was at Challenger for much of the last year, was confined for more than two months in a solitary cell containing only a cot. During this time, the school provided him with two hours or less of educational instruction per day. He was also denied access to textbooks, physical education and time outdoors — all in violation of the law. On some days, he received no educational instruction at all. On other days, his instruction consisted of nothing more than copies of school materials shoved under his cell door. On those days, he never saw a teacher or had any interaction with other students.

These stories are not isolated examples. Students at the facility are routinely excluded from class without cause or proper procedure. Teachers miss class without explanation or show up late without consequences. Students have been punished simply for asking for basic educational services. Despite the high incidence of reading deficits among students housed at Challenger, the school fails to systematically screen students for reading problems, and the staff is not trained to intervene effectively when problems are identified. Those who can read often do not have access to textbooks. Students are sometimes punished by having to stand outside for hours in 100-degree heat during the school day. They are shown movies in lieu of instruction. It is commonplace at Challenger that students do not receive even the state-required minimum amount of instructional time.  Many of the kids held at the facility already face incredible challenges. Although they often have the tough demeanor that comes from growing up in tough circumstances, many of them do want to learn.  But they are at severe risk, and research has shown again and again that those who leave high school without having mastered basic reading and math skills are far more likely to commit crimes and be incarcerated as adults. More than 80% of prison inmates are high school dropouts, and a high percentage are unable to read. In California, we spend billions each year on adult prisons and incarcerate about 150,000 people.

Studies have also shown, though, that when juvenile facilities focus on rehabilitation and literacy, they can dramatically reduce recidivism. Moreover, there are proven and well-known educational strategies and methods to address the learning needs of even the most challenged youth.  Giving these kids a good education is not just good policy: It’s the law. State law mandates that juvenile detention facilities in California, including county probation camps like Challenger, exist solely to rehabilitate, not to punish. Our theory of juvenile justice is predicated on facilitating a second chance. At Challenger, by denying kids the most important tool they need to succeed, the county of Los Angeles makes virtually certain kids don’t get that chance.  It is time for the county to swiftly and comprehensively address these violations. It needs to bring in personnel and experts who can turn a dysfunctional system around and start actually educating kids in desperate need. With every day that passes, more children are needlessly lost.

Mark Rosenbaum is chief counsel at the ACLU Foundation of Southern California. Laura Faer is the directing attorney of the Children’s Rights Project at Public Counsel. Shawna L. Parks is the legal director at the Disability Rights Legal Center.

Copyright © 2010, The Los Angeles Times