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Archives for : Disability

Seat at the Table’ video: Invisible Disability in Spotlight


(WOMENSENEWS)– There are six people in Bryn Healy’s New Jersey town who have suffered through a painful neurological disease called reflex sympathetic dystrophy. She wrote about the misdiagnosis that followed many of these teens in her Girl Fuse article, “Hysteria Diagnosis Still Hounds Some Girls with Invisible Disabilities.” In this video conversation, the second of three for the Seat at the Table series, Healy asks/tells Musimbi Kanyoro, the head of the Global Fund for Women, “There should be more awareness. Doctors still have no ideas what it is.”Musimbi calls Healy a “pioneer” for bringing attention to the issue and says, “When we don’t name the illness we make it look smaller and negligible.”

“Seat At The Table” is made possible through the generous support of The Loreen Arbus Foundation and was produced in partnership with Manhattan Neighborhood Network.

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Disabled left in the lurch at Kolkata book fair #KLF17

 Kolkata book fair map 2017

Battery-operated cars unavailable, no information at entrance, no wheelchairs, no ramps at most of the stalls

: Even as the organisers of the International Kolkata Book Fair (IKBF) claimed that the fair has “done relatively well” despite demonetisation, disability rights activists alleged “scant arrangements” for differently-abled people at the fair. They pointed out that contrary to claims made on the IKBF website by the organisers on the availability of battery-operated cars for the disabled at the fair, none were found at the venue. Speaking to The Hindu, Tridib Kumar Chatterjee, Secretary, Publishers and Booksellers Guild, which hosts the fair, denied the allegations. The IKBF is one of the largest book fairs in the world in with an average footfall of 25 lakh visitors.

When The Hindu visited the Milan Mela Grounds in the Salt Lake area, the venue of the fair, no representatives of the organisers were present at the gate. When asked about the battery-operated cars, the policemen deployed at the venue said they had “no idea” about such arrangements.

The IKBF website states: “There are Battery Operated Cars available to take you through the entire Fair.” The website further states that visitors only have to inform personnel at the IKBF entry gate for hassle-free access to battery-operated cars. Further, it says, “You just need to inform at the Entry Gate of The International Kolkata Book fair and we will get you the Battery Operated Car immediately”.

Mr. Chatterjee, however, said that “no such arrangements” were announced by them this year. As for the availability of wheelchairs at the fair, he said, “It was never the responsibility of the organisers to provide wheelchairs. It is up to those who have organised programmes for the elderly and disabled at the fair to make arrangements for wheelchairs.”

The activists who visited the fair earlier this week further alleged that “most of the stalls” had no ramps for the disabled, even as the organisers claimed they have instructed every stall owner to set up ramps.

According to the organisers, demonetisation has made “some impact” on the book fair.

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India – New rules on #NationalAnthem in cinema halls irk disabled

There have been increasing incidents of violence at film screening since the Supreme Court made it mandatory for spectators in cinema halls to stand at attention during the national anthem. Now, the Centre has issued instructions on how disabled persons must “show respect to the national anthem“ in theatres. Activists said this will incite vigilante groups to enforce their brand of “misplaced patriotism“.Amalraj Dasan (59) was beaten by a drunken spectator for not standing during a national anthem scene in `Dangal‘ last Wednesday in Goregaon.

The December 21, 2016 advisory , released on Wednesday , was issued by the ministry for social justice & empowerment.

Rajiv Mehta is a trustee of Ratna Nidhi Charitable Trust, which provides the Jaipur Foot to handicapped people. He said the order sprinkled salt on the wounds of people distressed by a handicap. “A paraplegic may be unable to rise as his back does not support him. Another may have no legs. Do theatres have ramps or facilities for the disabled? This rule will prompt people driven by false national pride to take the law into their own hands,“ Mehta said. A stunned silence befell Zarina Shroff, the parent of an autistic child, when she heard the news. Shroff volunteers at Om Creations Trust, which rehabilitates mentally challenged people. She said, “Those of us who care must immediately file a petition against this notice. Else, troublemakers will enforce false patriotism. How -and why -should the audience decide whether a handicapped person is able to stand or not?
What is the measure or gauge?“ Shroff’s daughter is borderline autistic and often watches movies with the family .“She does stand for the Jana Gana Mana as we have told her so. But autistic children are unpredictable. When she is angry or having a meltdown, she will not listen. Instead of facilitating sensitivity towards the handicapped, the government has created fresh trouble for them,“ she said.

Sheela Sinha heads the Helen Keller Institute for people with various disabilities.“Handicapped people who are able to stand must do so. But how will family members sensitise the entire audience during a film screening? Who has given anybody the right to beat those who are seated? It seems as if all other problems that beset the nation have been dealt with.“

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India – Mentally ill and tied up, this girl does not exist for the Gujarat state #Vaw


Amrika is a reflection of our society and our present times. A National Mental Health Survey recently patted Gujarat for doing ‘exceptionally well’ when it comes to taking care of its mentally ill. Look at Amrika, look at her picture again. Amrika is mentally ill. And she is tied up 24/7. We do not know how old she is. She does not have an Aadhar card. In fact, she does not have any proof of existence.

At an age, she should be running around and exploring her world, she is imprisoned – tied to a crate of stones on the pavement outside the Shiv temple near Ankur Crossroads that she calls her home. Mirror was not keen on taking Amrika’s photograph. But Savita Patni, her mother, feels that the world should know that it is not easy to be poor, or have a mentally ill child. And it is worse if you are both poor and mentally ill. Savita loves her child, but the family is poor, illiterate and has no means of giving this child a better life.

“If I do not tie Amrika up, she will either run away, get raped or come under a bus,” Savita says. Do we want to still pat our backs that the survey, conducted by NIMHANS Bangalore and supported by the Centre, ranks Gujarat after Assam and Uttar Pradesh in taking care of its mentally ill? Savita sells vegetables for a living. The 48-year-old works 10 hours but does not make more than Rs 150 a day. She has seven mouths to feed.

“Two of my kids are married. One of my sons is an alcoholic who does not contribute anything to the family,” she says. Life has lost all hope for her. But this was not always the case. In fact, Savita tells Mirror that she and her husband were very excited about the pregnancy. The parents had heard of America – the land from which NRIs come and spend lots of money. So they named the baby America. She later became Amrika to her illiterate family. Seven years ago, her husband – a vegetable vendor who used to drink quite heavily – suddenly vomited blood and collapsed on the pavement.

He died on the way to the hospital. To feed her kids, she took over selling vegetables on the opposite side of the road from where Amrika is tied. “It breaks my heart to keep her tied. What option do I have? Amrika needs constant supervision. I tie her up for her safety,” she says. Shabbily dressed, Amrika drags around the crate of stones – the cord chaffing her tender skin. There are rope burns on her wrists, some of which still bleed. Teary-eyed at the condition of her thirdborn, the 48-year-old recollects a time when Amrika was born a healthy child. “She was bright and would even help me with housework.

 One day, soon after turning seven, she suffered an epileptic fit. We rushed her to the hospital but she continued getting fits. I sold the little gold I had to fund her treatment but her condition deteriorated. Now, she cannot even perform basic tasks like going to the toilet or dressing herself.” Three years ago, Savita took Amrika to the Government Mental Health Hospital in Shahibaug. “The doctors on duty told me I had to stay with her for 24 hours in the hospital. I had other kids too. Since there was no one to take care of them I had to make the tough choice of depriving Amrika of treatment,” she said, ruefully.
 Savita leaves Amrika in the care of her younger siblings when she goes to the wholesale market in Jamalpur at 5 in the morning to purchase vegetables. She says, “I came here with my husband Mangesh about 30 years ago. The locals know me. Some of them stop to give money or food. Till some years ago, an old lady who used to visit the temple regularly would check on Amrika every day. She was very kind and would often give us grains and groceries. After she died, we fell on dire straits again.” Right from travel concession to the family’s health insurance, the state and the central government jointly has 11 different schemes for special needs people. Amrika’s mother has no idea about even one of these benefits.
The state government has five schemes, while central government has at least six schemes exclusively for the mentally ill. The Niramaya scheme under The National Trust formed by the Ministry of Social Justice gives medical insurance to the mentally ill up to Rs1 lakh against a premium of Rs 250. Similarly the ‘Swavlamban Yojana’ by the Ministry of Social Justice covers the mentally ill as well as their family for health insurance up to Rs 2 lakh. Mukesh Patel, who works at a jewellery showroom nearby, says, “I sometimes stop by to check on the child. It is painful to see her plight. We give them money from time to time, but I am surprised that in all these year, no government agency or police or NGO has ever come forward to help this family.”

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Disability activists question the new guidelines on National Anthem

The guidelines prescribed by the Home Ministry in compliance with the Supreme Court order of December 9, 2016 on the national anthem will lead to unnecessary harassment for persons with disabilities,  acocording to statement released by National Platform for the Rights of the Disabled


The guidelines specify that those whose lower limbs are affected and are wheelchairs users will position themselves to the “extent of maximum attentiveness and alertness”. While conceding that persons with intellectual disabilities will have difficulty in understanding and comprehending and showing respect to the National Anthem, it prescribes that those with mild intellectual disability can be trained to understand and respect the National Anthem. For those who are not considered as mild, the guidelines say that relaxation may be considered. What would constitute these relaxations however have not been specified.


NPRD  further elaborates that Apart from the fact that patriotism and nationalism and respect for national anthem and national symbols cannot be imposed and has to be generated by inculcating democratic and secular values, the apprehension is that these provisions can be easily misused to the disadvantage of the disabled. In the case of many disabilities maintaining a steady body posture is a big challenge. Who will determine what constitutes “maximum attentiveness and alertness”, when it comes to a person standing with the support of crutches, or a wheelchair user with cerebral palsy — the other cinema goers, the management or staff of the cinema hall or the police?


Even before these guidelines were issued a disabled activist and writer Salil Chaturvedi was thrashed in a cinema hall in Goa last October for not standing up when the National Anthem was being played. Chaturvedi who has a spinal injury is a wheelchair user.


Ironically, the guideline itself admits that “unwarranted incidents against persons with intellectual disabilities” may occur, and asks for wide publicity to generate public awareness. Sensitisation on disability issues, needless to say, must first start from government department, police, judiciary etc.


NPRD  hopes that when the Supreme Court hears the matter further on February 14, 2017 these issues will also be considered.

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I’m A Disabled Woman Who’s NOT Celebrating Meryl Streep’s Golden Globes Speech

flickr/Movies in LA

We must move beyond surface-level speeches, and engage in the very real fight ahead.

The Internet is in a tizzy over Meryl Streep’s Golden Globes speech, hailing her as a hero for taking on President-elect Donald Trump. Her words renewed the fury over Trump’s mocking of disabled reporter Serge Kovaleski — a fury that’s become an old, tired tale.

Well over a year after the mocking incident occurred, mainstream media and people around the globe continue to point to it as the number-one demonstration of Trump’s egregious character flaws. In fact, in August 2016, just a few months prior to the election, a Bloomberg poll indicated that out of all the appalling things Trump had said and done up to that point, his worst offense was imitating Kovaleski.

And now, here we are, just days away from inauguration, still fixating on this one instance of Trump’s behavior amid a laundry list of other abhorrent actions and statements, including lies, deception, threats to national security, racism, homophobia, xenophobia, misogyny…the list goes on. In no way does this detract from the fact that mocking someone with a disability is a clear moral failing, but why is it the one that so many people consider the worst?

The outrage over the mocking stems from a perception of disability that is stigmatizing in and of itself.

The outrage over the mocking stems from a perception of disability that is stigmatizing in and of itself: We’re a defenseless group, already leading pitiable lives. Never mind that Kovaleski is a successful, established reporter. Because of his disability, he’s viewed as an underdog. Streep’s speech directly played into this stigma, referring to Kovaleski as “someone [Trump] out-ranked in privilege, power, and the capacity to fight back.” Though that’s true in that Kovaleski is just a journalist while Trump is a wealthy President-elect with a major following and constant media coverage, it’s evident that Streep meant what she said in reference to Kovaleski’s disability. Kovaleski has now become a shallow symbol of disability, a poor guy being bullied, while the rest of his humanity is ignored.

People are praising Streep for her activism and her allyship in bringing up disability during her speech, and yet all she did was exactly the same thing the media has been doing for months: touching on disability at a surface level without ever moving beyond discussion of mocking Kovaleski to discussions of major disability rights issues.

This superficial discussion is completely unproductive, and it isn’t leading to meaningful progress in the fight against the discrimination and human rights violations that the disability community experiences every single day.

In the end, all Streep accomplished was eliciting a few defensive, insulting tweets from Trump that once again denied that he mocked the reporter. We’ve been here before. Anger over mocking Kovaleski, much like a lot of the anger directed at Trump, has become part of a cyclical argument that’s going nowhere.

This presidency is real. It’s happening. No amount of outrage over Trump’s mocking of disability prevented it from happening, and no amount of outrage is going to undo his election. And now, while non-disabled celebrities like Meryl Streep are getting kudos for trying to be the voice of the people by touching on an incident that has zero impact on policy, no real change is being made. It’s troubling, because the disability community is in need of major change. While most people are stuck on this one ableist incident of bullying, disabled people are out there advocating for issues that are literally a matter of life and death.

No amount of outrage over Trump’s mocking of disability prevented his presidency from happening, and no amount of outrage is going to undo his election.

As Trump’s presidency quickly approaches, disabled people are fearful that GOP efforts to repeal the Affordable Care Act will eliminate access to life-sustaining comprehensive health care and medications. We’re also worried about the Trump administration’s proposed changes to how Medicaid is financed, which will inevitably lead to cuts in services that disabled people rely on daily. Not to mention, we’re concerned about equal employment opportunities, accessibility, poverty, and incarceration, to name just a few critical issues.

We’re also advocating for inclusion in all areas of life, including the arts. Think about it: How incredibly sad that the only mention of disability at a Hollywood event was in reference to something Donald Trump did back in 2015. This lack of disability representation in mainstream media is a constant problem; it’s both a cause and effect of societal prejudices surrounding disability.

Why were there no visibly disabled people strolling down the red carpet or being awarded for their acting talents? When will the day after the Golden Globes become a time to celebrate someone with a disability winning an award for best actor or actress?

How incredibly sad that the only mention of disability at a Hollywood event was in reference to something Donald Trump did back in 2015.

Disability is still such a rarity in Hollywood, and in most cases, it comes up only when non-disabled actors portray the disability experience in overly-inspirational or pitiful ways (in movies like Me Before You or Million Dollar Baby). And so, here we are, celebrating Meryl Streep as progressive for putting old news about disability back into the spotlight for a fleeting moment, while in reality, we’ve still got so far to go.

I understand Streep was giving a speech at an awards show, not a policy forum, and that she was modeling how celebrities can use their platforms to spread important social justice messages. But it’s up to all of us — especially people like Streep, who are in positions of privilege and power — to move beyond the redundant discussion of Trump mocking a disabled reporter and dig deeper into disability issues.

It’s time to recognize that the Trump administration is imminent, sound the alarm, and fight harder than ever to protect and defend the rights of the disability community.

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Chhattisgarh – Darkness falls: thousands go blind, no relief in sight #WTFnew

Darkness falls: thousands go blind in Chhattisgarh

Malik/Catch News

Chhattisgarh‘s region of Janjgir-Champa has long been famous for paddy cultivation. It is now also emerging as state’s power hub with several power plants coming up in the area during the recent years.

While fuelling economic growth of the resource-rich state and giving employment to hundreds of impoverished Adivasis, these electricity projects are also turning many local residents blind. Thousands of people are suffering from cataract due to dust and ash emitted from the power plants.

Yet the district hospital does not have even a single eye surgeon for the past 14 months. Dr A L Korram was the last eye specialist to serve at this hospital.

It is common knowledge that 90% of cataract patients can be treated if provided right treatment on time.

A survey conducted by the state health department reveal only a few cataract operations have been carried out in Janjgir-Champa region during the past four years. Meanwhile, the disease has reached its last stage in over 5,000 patients for the want of treatment. The only way to prevent their eyes from going dark is to ensure that an operation is done as soon as possible.

“90% of cataract patients can be treated if provided right treatment on time “

Kunwar Bai (65) is one such patient. She has spent her life living below the poverty line. At the dusk of her life, she desperately needs a cataract operation. However, the government hospital does not have a doctor that could cure her and going to a private hospital is beyond her means.

This leaves Kunwar Bai with only one option; to wait for her eyes to completely turn blind. Many young people working in power plants are facing the same predicament.

“The number of eye patients is increasing due to ash and dust emitted from chimneys of power plants. Every year, around 1.6% people of Janjgir-Champa district are turning blind. People living near industrial areas are the worst sufferers. Areas like Malkharauda, Dabhra, Pamgarh, Bamhanidih are most affected by this pollution, says Dr Prabir Chatterjee, who works with the Chhattisgarh State Health Resource Centre.


According to district’s Chief Medical Officer (CMO) Dr V Jaiprakash, five letters have been sent to the administration during the past 14 months asking for the appointment of an eye surgeon at the district hospital. But, there has been no action so far.

The ongoing ban over government eye camps is only aggravating the situation. These camps were discontinued after several cases of negligence came to light during 2012 to 2015. Around 60 patients completely lost their eyesight during this period due to mistreatment in these camps. The official blames lack of facilities and dereliction of duty on the part of the doctors for these figures.

“Eye camps were banned in the state after 60 people lost their eyesight due to mistreatment”

Most numbers of such cases were recorded in Durg district‘s Balod and Dhamtari region’s Bagbahra. The state government had to face the ire of the people due to these eye camps. It responded by scrapping these camps altogether. There is no doubt that eye camps could have saved many patients from blindness in Janjgir-Champa.

“Any eye patient will now only be treated at a regular hospital equipped with proper facilities for eye operations,” claims Dr Subhash Mishra, the state in charge of the National Programme for Control of Blindness.

“We have received instructions from the central government for qualitative eye surgeries,” Dr Mishra adds. Interestingly, the government never shies away from issuing such guidelines. Yet, it takes no measures for the appointment of doctors for the same purpose.


Chhattisgarh is already at the bottom of the list of states with the most number of eye diseases. The state fares at a poor 20th spot in terms of eye donation. The data released by the state health department reveals only 83 people have donated their eyes during the past one year. Chhattisgarh is also lagging in the target of providing free spectacles for the school children.

The government had aimed to distribute free spectacles to 21,070 children in 2016. However, only 7,202 could get this benefit during this period. Similarly, there are no special units for eye operations in the government hospitals of Bijapur, Sukma, Surajpur, Balrampur, Baloda Bazar and Mungeli.

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Disability activists submit Memorandum demanding amendments in Draft Bill





Representational Pic

Representational Pic

A delegation of representatives of disability rights organisations that held a meeting at Jantar Mantar today met the Union Minister for Social Justice & Empowerment, Shri Thawar Chand Gehlot and submitted the following memorandum, highlighting certain concerns that are yet to be addressed or have not been addressed properly by the official amendments proposed to be moved on the Rights of Persons with Disabilities Bill, 2014.


The Minister assured to look into the specific suggestions that had been made.


Those who went to meet the minister are Shri S K Rungta, Secretary of the National Federation of the Blind, Shri Kanti Ganguly, General Secretary of the National Platform for the Rights of the Disabled and Ms. Seema Baquer from The Leprosy Mission Trust of India.


Text of Memorandum


Shri Thawar Chand Gehlot

Minister for Social Justice & Empowerment

Government of India


Dear Shri Gehlot ji,


At the outset we would like to express our thanks to you for ensuring that many of the concerns expressed by the disability sector with regard to the inadequacies in the Rights of Persons have been addressed in the official amendments proposed to be moved in the Rajya Sabha.


However, there are certain concerns which have not been addressed or have been addressed inadequately to which we would like to draw your attention.

1.    One of the major concerns that disability rights organisations had was with regard to the Section 3(3) of the 2014 Bill which states that “No person with disability shall be discriminated on the ground of disability, unless it is shown that the impugned act or omission is appropriate to achieve a legitimate aim.” This clause we had opined gives unfettered power to the implementing authorities to discriminate against persons with disabilities, on the pretext of serving a “legitimate aim”. The amendment proposed to this section, which replaces “appropriate to achieve a legitimate aim” with “a proportionate means of achieving” does not alter the provision in any manner.


We would strongly recommend that the proviso to section 3(3) be deleted.


2.    We would request you to restore the provision of 5 per cent reservation in higher educational institutions and employment as provided for in the Bill. With the ambit of the categories covered having increased, if atleast a percentage that looks proportionate is not provided for, the number of actual beneficiaries will get limited. Moreover, as you will appreciate, for the disabled the major avenue of employment is the government sector.


We would therefore recommend that the provision of 5 per cent reservation as given in the Bill be restored.


3.    There is some ambiguity with regard to the amendment suggested to Section 33 (1). It is stated that “Every appropriate government shall appoint in every Government establishment, not less than four per cent of the total number of vacancies in the cadre strength in each group of posts meant to be filled with persons with benchmark disabilities of which, one percent each shall be reserved for persons with benchmark disabilities under ……….”


You will appreciate that the provision in the 1995 Act of reservation against identified posts were misinterpreted to read as though reservations were applicable only to identified posts. We apprehend the same fate if the provisio that “total number of vacancies in the cadre strength in each group of posts meant to be filled with persons with benchmark disabilities” is kept.



4.    We also find that an amendment proposes that in Section 33 (1) (b) instead of “hearing impairment and speech impairment”, “deaf and hard of hearing” is being introduced.


We feel that the original proposal should be maintained.


5.    We are also not in agreement with the proposed amendment to do away with the provision of a National Commission for Persons with Disabilities as well as State Commissions.


We recommend that these provisions should continue to be in the Bill.


6.    Also with regard to reservation in promotions, the proposed amendment restricts reservations in promotions to “instructions issued by the appropriate government from time to time.”


The amendment should be in tune with the Supreme Court judgement on the issue.


7.    About grant of full legal capacity to persons with disabilities the amendments talk of granting total support and limited guardianship in the same breadth. This is in contravention of the provisions of UNCRPD. Schemes and policies for providing support should be ensured.


We therefore request you to seriously consider these concerns raised by us and move necessary official amendments to strengthen the Bill further.


With regards,


Signatory Organisations:


1.                National Platform for the Rights of the Disabled

2.                National Federation of the Blind

3.                All India Federation of Deaf

4.                National Association of the Blind

5.                Rashtriya Viklang Manch

6.                Federation of Disability Rights

7.                Parivar- National Confederation of Parents Organisations of PwIDDs

8.                Human Rights Law Network

9.                Disabled Employees Association of Railways

10.          Northern Railway Physically Handicapped Employees Association

11.          Sense International

12.          CREA

13.          Families Alliance on Mental Illness, National Network 

14.          The Leprosy Mission Trust of India

15. Disabled Helpline



Contact address: 36, Pt. Ravishankar Shukla Lane, New Delhi

Tel. 9868768543 (Muralidharan); 9312607540 (SK Rungta)

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Burden of birth: Where a pregnancy costs a mother her life #Vaw

  • Sanchita Sharma, Shivpuri & Sheopur, Madhya Pradesh
  • |

Banbari Adivasi’s unnamed granddaughter died of severe malnutrition after mother Jasoda, 19, died at childbirth. “When her mother died, there was no one to feed her,” says Adivasi, 42. (Virendra Singh Gosain/Hindustan Times)

Earlier this month, Banbari Adivasi’s unnamed granddaughter died of severe malnutrition, starving for days after her 19-year-old mother, Jasoda, died at childbirth.

“My son Sajjan works as a labourer in Rajasthan and after his wife’s death, went back and left the baby girl with us,” said Banbari, a 42-year-old resident of Shivpuri in northern Madhya Pradesh’s rural hinterlands. He has tuberculosis and is too ill to continue working as a labourer.

As his wife Ramkumari, 35, now supports the family by going to the forest to forage for fruits, roots and honey to sell, Banbari’s job is to stay home with his five other children and newborn grandchild. “When her mother died, there was no one to feed her.”

In desperation, Banbari even considered giving away the little baby to another family, but then she fell ill. “I tried, but I did not know how to look after the baby,” he says. Admitting the baby to the SNCU (special new born care unit) at the district hospital in Shivpuri could not save her life.

Jasoda and her daughter aren’t the only ones. Each year, 55,000 women die in India from preventable pregnancy-related causes. In most cases, infections and disease are compounded by chronic hunger and malnutrition – and a lack of access to affordable pre-birth healthcare services because of corruption or caste bias.


The maternal mortality rate (MMR) — deaths per 100,000 live births — fell from 212 in 2007 to 167 in 2013 but too many women are dying still.

And as the maternal death rates remain the highest in the populous states of Assam, Bihar, Madhya Pradesh, Odisha, Rajasthan and Uttar Pradesh, the total number of women dying is also high.

To tackle this, Prime Minister Narendra Modi launched the Pradhan Mantri Surakshit Matritva Abhiyan two weeks ago to provide free antenatal – before childbirth – care to pregnant women on the 9th of every month at government health centres and hospitals across India’s 687 districts.

Building on the National Health Mission’s flagship Janani Suraksha Yojana (JSY), all pregnant women must be given a physical and abdominal examination, a tetanus shot and 100 iron-folic acid tablets.

They must also be tested for anaemia, high blood pressure, high blood sugar (gestational diabetes) and other problems linked with pregnancy to lower India’s MMR and infant mortality rate (deaths of children under five years of age per 1,000 live births).

Motherless child

Women in the lowest socio-economic sections in India are two-and-a-half times more likely to die of childbirth, largely because they don’t get the medical support they need to deliver a healthy baby. Jasoda’s death is a case in point.

“Maternal deaths are not just about a woman dying, it also adversely affects the health of newborn and surviving children, who get trapped in a vicious cycle of malnutrition, stunting and wasting,” says Ajay Yadav, founder of the NGO Badlav (Change), who has been working on health and nutrition in Madhya Pradesh.

Incomplete antental care also lowers the chances of the mother’s and child’s survival. Malti Adivasi, 19, wife of Ram Lakhan, 25, lost her nine-month-old daughter Lakshmi to malnutrition earlier this year. She had delivered in a hospital but was not given iron-and-folic acid tablets or advice on feeding her baby after delivery. Lakshmi was given the BCG vaccine against tuberculosis and polio vaccine at birth, after which she got no vaccinations.

“Malnutrition begins after six months when the baby needs additional nutrition, which the mother is not able to provide. That’s when weight drops and wasting sets in, making the baby susceptible to infections such as pneumonia and diarrhoea,” said Pramod Tiwari from the Manav Foundation, Sheopur.

State of care

Frequent infections aggravate chronic hunger with most severe acute malnutrition deaths taking place between nine months and five years.

Apart from saving mothers, antenatal care and institutional deliveries boost chances of newborn survival. The mother gets a tetanus toxoid shot to lower risk of infection during delivery, iron and folic acid to boost blood haemoglobin levels, and nutritional advice on feeding the newborn within the first hour of birth.

Breast milk contains all the nutrients a baby needs in the first six months of life and nursing a newborn within one hour of birth delivers highly nutritious colostrum (first milk) that protects against common childhood infections such as diarrhoea and pneumonia and boosts mental and physical development.

Under the JSY, all services for the mother and her newborn are free and incentives are given to families to opt for institutional deliveries, yet corruption and apathy in the public health system make the poor hesitant in accepting services.

“Hospital staff sometimes demand a bribe up to Rs 500 for a delivery because they know mothers get Rs 1,400 for an institutional delivery. But since that money is transferred directly to the parents’ bank account, villagers have no money to give hospital and clinic and so they opt for home deliveries,” says Yadav.

“Caste plays a role in the exclusion from health services, with marginalised tribes like the Saharias losing out both nutritionally, socially and economically,” says Yadav. “Unless delivery becomes inclusive, children will continue to be orphaned.”

Case study: Halki Adivasi, 25

Halki Adivasi delivered a baby boy last month and grieved for her 18-month-old baby girl Parvati three weeks later.

Three of her six children died between the ages of six months and one year over the past five years and now she lives in her one-room mud and thatch hut with her newborn, her husband Vishnu, 30, and two surviving children, son Radhay Shyam,8, and daughter Anjani, 7.

Halki’s baby boy Anand was born at home at 2 am but the umbilical cord was cut eight hours later because her husband Vishnu Adivasi, 30, could not get a midwife. She has three babies and has lost another three to malnutrition in Bhairopura village in Madhya Pradesh’s Shivpuri district. (Virendra Singh Gosain/Hindustan Times)

The family is clueless about what killed their children. “They fell ill and died,” is all he knows.

None of the children have ever been vaccinated, including her month-old son Anand.

Since no government health worker has ever visited their home, Halki missed all three of the antenatal screening benefits she is supposed to get free under the Janani Suraksha Yojana (JSY) for mother and newborn health.

Halki delivered at home at 2am “the day before dushherra” and lay with her baby with the umbilical cord attached all night till a birthing assistant reached her the next morning at 11 am and cut the cord.

“I went looking for a midwife at night but she couldn’t come till the next morning, so we had to wait,” said her husband Vishnu Adivasi, 30, who works as a daily labourer.

Like it happened to many other women living in Bhairopura village in Madhya Pradesh’s Shivpuri district, Halki’s pregnancy slipped between the cracks and she did not get iron and folic acid supplementation and tetanus toxoid vaccination. The family will also not get the Rs 1,400 given to every mother who delivers in a government institution.

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Disability activists demand Govt’s Clear Stand on RPD Bill


The Rights of Persons with Disabilities Bill – RPD Bill  was disabilityintroduced in the Rajya Sabha in February 2014 was sent to the Department Related Standing Committee, which submitted its report and recommendations in May 2015.


It is regrettable that even after the passage of eighteen months the government is still to spell out its stand with regard to various concerns about the Bill that disability rights organisations have raised; the recommendations of the Standing Committee and the action that it proposes to take. This is inexplicable. In its absence, disability rights organisations are unable to frame their response.


A countrywide campaign has been launched by national level disability organisations centering around the demand that the government should make public its stand with regard to the Bill and the amendments it proposes to make through an Action Taken Report. It should be taken up in the forthcoming Winter Session of Parliament for discussion.


  • As part of this campaign, representatives of these organisations would be meeting Members of Parliament urging them to raise the issue in parliament and exert pressure on the government.
  • Demonstrations will be held in all state capitals on November 21.
  • Coinciding with World Disability Day, on December 3, 2016, thousands of disabled persons will rally in Delhi for a huge demonstration before parliament.



  1. National Platform for the Rights of the Disabled
  2. National Federation of the Blind
  3. All India Federation of Deaf



  1. National Association of the Blind
  2. Rashtriya Viklang Manch
  3. Parivar- National Confederation of Parents Organisations of PwIDDs
  4. Human Rights Law Network
  5. Federation of Disability Rights
  6. Disabled Employees Association of Railways
  7. Sense International
  8. The Leprosy Mission Trust of India
  9. CREA
  10. JNU Visually Challenged Students Forum
  11. Yes We Can
  12. Delhi Viklang Adhikar Manch


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