'Inclusion of disabled people should be made non-negotiable'

Prasanna Kumar Pincha, Central government's Chief Commissioner for Persons with Disabilities says hospitals have to be barrier-free for the disabled.

But the concept is relatively new and it might take some time for the idea to sink in with the people who are in charge. Visually challenged since birth, Pincha is the first person with a disability to hold this post. Excerpts from an interview with Shiv Sunny:

Full interview at Deccan Herald's webpage here:
http://www.deccanherald.com/content/340498/039inclusion-disabled-people-should-made.html

Every step is a struggle

Shiv Sunny, Jun 22, 2013, Deccan Herald  

Right from architectural barriers in hospital buildings to inaccessible medical equipment, from insensitive doctors to negligent authorities, access to healthcare facilities for the huge invisible population of disabled people in the capital is abysmally difficult.

Low-rise urinals with grab bars. Doors with lever-action locks. Bright colour-bands on edges of stairs. Ramps with the right slope. This is part of the wish list for making access in hospitals easy for people with disabilities.

But are these things really necessary, and is it even practically and financially possible to provide them in hospitals?

“As per Article 9 of the United Nations Convention on the Rights of People with Disabilities, India is obligated to provide architecturally accessible buildings for the disabled. India should not have signed it if it was not possible,” says Agarwal, a wheelchair user herself.

According to the 2001 Census, 2.1 per cent of Indians are facing some kind of disability. And right from architectural barriers in hospital buildings to inaccessible medical equipment, from insensitive doctors to negligent authorities, access to healthcare facilities for this huge invisible population in the capital is abysmally difficult. 

“It is a myth that design in hospitals costs a lot of money. If planning and strategising is done at the blueprint stage of a construction, the extra cost is 0.1 per cent. Even if modifications are done after construction, the expenditure goes up by just two per cent,” says Agarwal, adding that the suggested incorporations can be made at least in phases. “But over the last six-seven years, despite us providing the access audits, they have done nothing.” 

Agarwal says the government washes off its hands by just providing ramps at the entrance of hospitals and some other areas of the hospital. 

“One of my colleagues was at Deen Dayal Upadhyay hospital a few years ago to conduct an access audit. Even while he was being wheeled inside, his wheelchair tilted and he fell. In the name of ramps, rocket launchers are provided at the hospital,” she says.

An accessible hospital is not just about entering the building. Disabled persons should also be able to exit it with their dignity intact, with the hospital caring about their safety and convenience.

Agarwal says the architectural changes are also necessary because they will benefit the whole population one day or the other. “Everyone is going to age. Everyone is going to be disabled someday,” she says.

While the lack of empathy comes as no surprise in government hospitals, the private hospitals, despite being marginally better, too fall short. 

Dr Satendra Singh, coordinator of the enabling unit at University College of Medical Sciences (UCMS), says a leading private hospital in the city he visited recently appeared to be totally accessible till he went to its ICU lobby and auditorium, which had just stairs and no ramps. 

“I lodged a complaint and the hospital authorities were quick to look into the matter and conduct an access audit there. But such a response is unthinkable from a government hospital,” says Singh, who suffers from a disability.

In fact, not just the multi-speciality hospitals, even basic facilities like pathology labs are inaccessible. 

“Have you ever seen a pathology lab with ramps? Most of them are located in the basement or on an elevated platform. In either case, there are only stairs available,” says Agarwal. This discourages the disabled from approaching such centres – and they shell out extra money to have the tests done at home and the reports delivered.

The medical equipment is not designed keeping the disabled in mind either. No hospital in Delhi, whether public or private, has a mammography machine which can examine a patient sitting on a wheelchair.

“I called a super-speciality hospital in the city and asked them if their mammography machine is designed for women using wheelchairs. They replied in the negative and said that their staff would lift me and get me examined,” says Abha Khetarpal, founder of Cross the Hurdles, an NGO working for the disabled.

“It is embarrassing for us. We have our dignity,” she adds.

Even machines as basic as a weighing machine are not designed for the disabled. 

“Barring the Indian Spinal Injuries Centre, no other hospital in Delhi has a weighing machine that can be used by a person on wheelchair. This means a disabled person can never check their weight,” says Agarwal. 

Even the dentist's chairs are not designed to suit people with disabilities, she says. Khetarpal says it takes very little effort to install hydraulic chairs which can be adjusted. 

“A little bit of empathy could make life so much easier for us and make us feel normal.” 
Further highlighting the attitudinal barriers, she says doctors in the city do not even recommend the papanicolaou test for cervical cancer for women with disabilities. “Disabled females are seen as asexual creatures.”

Even education institutes are not barrier-free for the disabled. Dr Satendra Singh says inaccessible libraries, lecture halls and hospital campuses dissuade people with disabilities from taking admission in medical colleges despite the three per cent reservations for them. 

Singh was relentless in his pursuit for accessible facilities for the disabled in medical institutions and hospitals. He advocated this to the Central government's Chief Commissioner for Persons with Disabilities. 

The chief commissioner in turn sent reminders to the Medical Council of India (MCI) which dashed off letters to all medical colleges to submit compliance reports on this.

“It came as little success because though the MCI found the issue important, it did not make it mandatory for the institutes to provide accessible facilities for the disabled. Unless it is made compulsory, we are not going to see much change,” says Singh. 

Since the government provides financial assistance under Scheme for Implementation of Persons with Disabilities Act, there should be no excuse for government medical colleges not to make their campus barrier-free, he adds.

Despite the scheme offering up to Rs 50,000 to every institute for accessible buildings and up to Rs 15 lakh for making their websites accessible for the visually challenged and the hearing-impaired, not too many medical institutes have applied for it for over a year. 

“This has also happened because people with disabilities themselves have not raised their voice and do not know about the prevailing schemes which they can benefit from,” says Singh.

The absence of many people with disabilities in access audit teams too is hampering the creation of an accessible environment. Agarwal says only a person with disability will know what is lacking in hospital buildings. Nothing less than proper representation on them of the disabled people will help improve the situation.

http://www.deccanherald.com/content/340499/every-step-struggle.html

Hospitals waking up to the disabled's needs, but slowly

Deccan Herald, 23 Jun 2013

People with disabilities have won some battles, but are yet to win the apathy war

Hospitals in the city generally lack infrastructure that caters to the needs of disabled people. Though a few of them have woken up to the fact that the disabled should not be made to face problems, there is still a long way to go.

Very few positive changes have taken place despite efforts by activists, disabled doctors and organisations. But they are continuing with their efforts to get barrier-free access to hospitals and medical institutes.

Dr Satendra Singh, a disabled professor and the coordinator of the enabling unit at the University College of Medical Sciences (UCMS) has been campaigning hard. Because of his efforts, the hostels of UCMS are now disabled-friendly to some degree.

Read full story at Deccan Herald's website here:
http://www.deccanherald.com/content/340497/hospitals-waking-up-disabled039s-needs.html

Disabled medicos face hurdles

Shiv Sunny, New Delhi, June 10, 2013, DECCAN HERALD NEWS SERVICE:

Infra facilities not available at medical colleges

“Is any medical institution in the country capable of inviting the famous theoretical physicist Stephen Hawking to deliver a lecture,” asks Dr Satendra Singh, coordinator of enabling unit of UCMS.

This one question highlights the condition of medical institutions and hospitals when it comes to providing barrier-free access to the disabled.

Singh says physical barriers such as inaccessible libraries, lecture halls and hospital campus dissuade people with disabilities from taking admission in colleges despite reservations for them.

He had petitioned the office of the Chief Commissioner for Persons with Disabilities (CCPD) to provide accessible environment to the disabled in medical institutions. The CCPD had to forward it twice to the Medical Council of India before it asked the colleges to submit a compliance report in this regard.

But Singh wants the MCI to make it mandatory for colleges to provide accessible institutions. “The action taken by them is mere eyewash,” says Singh. But it has done enough to encourage him to continue petitioning the authorities to make it mandatory.

Those fighting alongside Singh, or for this cause, say their suggestions are often shelved for long and when they are implemented, there is much lacking.

“We conducted accessibility audits for all Delhi University colleges in 2007-08. We had given our reports and suggestions with drawings and illustrations to make campuses disabled-friendly. But the managements neither take a look at the audits nor do they consider them,” says Anjlee Agarwal, executive director of NGO Samarthyam.

The NGO evaluates, develops, and promotes accessible and universal design in buildings and outdoor environments.

“Just having a ramp, but no access to toilets or libraries, will still continue to dissuade people from taking admissions. Every service that others have access to must be made available for the disabled,” adds Anjlee.

Few little successes keep Singh petitioning still. His efforts have seen the installation of two disabled-friendly ATMs in Guru Teg Bahadur Hospital. Differently-abled students at UCMS now get a leniency time of 15 minutes to reach.

Source: Deccan Herald, Delhi, 11 June 2013, page 4.

Hope in India as Mandatory Access For People with Disability Takes Shape 

Source: India America Today dated June 8, 2013

ARTICLE | JUNE 8, 2013 - 6:43PM | BY INDIA AMERICA TODAY NEWS SERVICE

New Delhi - In the developed countries, it is taken for granted that there is universal access for the disabled and physically challenged person, but not so in developing countries, so it was hailed as historic when the Medical Council of India (MCI) recently asked all medical institutions in India to be disabled-friendly and submit a compliance report as soon as possible.

Accessibility of health care facilities to persons with disabilities is abysmally low in India because of architectural barriers, lack of ICT facilities and attitudinal barriers. Even medical students, paramedics, non-teaching employees and faculty with disabilities face numerous barriers in medical institutions. This should change if there is early and proper implementation of the MCI-issued directive to the deans and principals of all the medical colleges and institutions in India to promptly submit a compliance report on accessible institutions to the Ministry of Social Justice and Empowerment.

Welcoming the directive, disability activist Satendra Singh, a medical specialist at University College of Medical Sciences (UCMS) in Delhi who is himself disabled, said, “This is a significant move, as medical institutions are made more accountable, which is in line with Sec 46 of PWD Act 1995 and article 9 of the International law UNCRPD, which makes it obligatory for India to implement reasonable accommodation. This is not something only for disabled because a universally designed ramp or toilet will help all, be it disabled, elderly person, or pregnant female."

Singh had relentlessly advocated to the chief commissioner for persons with disabilities (CCPD) to pass directions to MCI to make access audits mandatory in all medical inspections; to include persons with disabilities in all disability matters; and to de-recognize all such colleges which fail accessibility standards. The CCPD, under the Ministry of Social Justice and Empowerment, is the highest apex body in India, with the power of a civil court and pan-India jurisdiction.

"To me this should have been done long ago and without anybody fighting for it. What Dr. Satendra Singh is doing is not only praiseworthy and commendable but also a path-breaking move in the establishment of universal design," said Abha Khetrapal, counselor for the students with disabilities at the University College of Medical Sciences, (UCMS) and GTB Hospital in Delhi.

Singh is the coordinator of the Enabling Unit, which he created under the UGC (University Grants Commission) guidelines for ensuring affirmative actions concerning persons with disabilities. This is the only such body in any medical school in India. Singh also formed an Equality and Diversity Committee, which has student, non-teaching staff and faculty members and all are persons with disabilities, in line with the mantra "Nothing for us, without us."

Khetrapal, who is a non-institutional expert on the committee, said, "The formation of Equality and Diversity Committee needs to be used as a model not only by the medical colleges, but by all the institutions providing higher education, as separate counselors for students with disabilities may not be found even in many renowned universities of the country. Moreover, all the members of this committee are persons with disabilities and they can represent themselves better than the non-disabled people."

Khetrapal urged MCI to take urgent action for the speedy implementation of the directive, saying, "I now hope that the new chairman of MCI, Dr. R.K. Srivastava, brings the required and desired changes. Another move that has to be done is to include disability studies as a subject in medical education."

Mincing no words, Khetrapal who is the founder and president of Cross the Hurdles (www.crossthehurdles.org/ngo), an organization fighting on behalf of the disabled, said, "It is an irony that those who are getting trained to be the health providers of the community have to suffer due to such an inaccessibility. I wonder why does MCI have to be directed by the CCPD office? Why couldn't Medical Council of India issue such a directive itself? Why do we have to wake up the authorities from such a deep slumber to at least give us what our rights are?"

Source: India America Today dated June 8, 2013

Break barriers, open doors: for an inclusive society for all [IDPWD 2013]

International Day of Persons with Disabilities, 3 December 2013

Theme: “Break barriers, open doors: for an inclusive society for all”

More than 1 billion people or 15% of the world population are living with disabilities - the world’s largest and most disadvantaged group - most of which, are in developing countries!

Around the world, persons with disabilities face physical, social, economic and attitudinal barriers that exclude them from participating fully and effectively as equal members of society. They are disproportionately represented among the world’s poorest, and lack equal access to basic resources, such as education, employment, healthcare and social and legal support systems, as well as have a higher rate of mortality. In spite of this situation, disability has remained largely invisible in the mainstream development agenda and its processes.

Earlier, the international disability movement achieved an extraordinary advance in 2006, with the adoption of the Convention on the Rights of Persons with Disabilities. The Convention follows decades of work by the United Nations to change attitudes and approaches to disability that would ensure the full equality and participaton of persons with disabilities in society. The Convention is intended as a human rights instrument with an explicit, development dimension. However, to realize equality and participation for persons with disabilities, they must be included in all development processes and, now more importantly, in the new emerging post-2015 development framework.

The UN General Assembly emphasizes that the genuine achievement of the Millennium Development Goals (MDGs) and other internationally agreed development goals, requires the inclusion and integration of the rights, and well-being, as well as the perspective of persons with disabilities in development efforts at national, regional and international levels.

Toward this end, in 2011, the Assembly decided to convene a one-day high-level meeting on disability and development (HLMDD) at the level of Heads of State and Government, under the theme: “The way forward: a disability inclusive development agenda towards 2015 and beyond”. The HLMDD will present a historical opportunity to mainstream disability in the global agenda towards a post -2015 development framework that would translate the international commitment for a disability-inclusive society into concrete action and real changes on the ground in the lives of persons with disabilities.

The timing of the HLMDD to be held on 23 September 2013 is strategic; taking place five years after the UN Convention on the Rights of Persons with Disabilities entered into force, two years after release of the World Report on Disability and two years away from 2015 -- the target date for the achievement of the Millennium Development Goals (MDGs) -- and thereafter, the commencement of the post-2015 agenda and new development priorities.

This outcome of the HLMDD will take shape in a concise, action-oriented outcome document  that will provide policy guidance and help strengthen global efforts to ensure accessibility for and inclusion of persons with disabilities in all aspects of society and  development.

It’s time to break barriers and open doors: to realize an inclusive society for all!

By 3 December 2013, the International Day of Persons with Disabilities, we will have the outcome document of the HLMDD, which would provide an blueprint for action and ideal platform to launch global efforts to help realize the full and equal participation of persons with disabilities in society and shape the future of development for all!

What you can do to observe IDPWD2013

Include: Observance of the Day provides opportunities for participation by all stakeholders – Governments, the UN system, civil society and organizations of persons with disabilities – to focus on issues related to the inclusion of persons with disabilities in development, both as beneficiaries and agents.

Organize: Hold forums, public discussions and information campaigns to help find innovative ways and means by which persons with disabilities and their families can be further integrated into their societies and development plans.

Celebrate: Plan and organize performances everywhere to showcase - and celebrate - the contributions made by persons with disabilities as agents of change and development in the communities in which they live.

Take Action: A major focus of the Day is practical and concrete action to include disability in all aspects of development, as well as to further the participation of persons with disabilities in social life and development on the basis of equality. Highlight progress and obstacles in implementing disability-sensitive policies, as well as promote public awareness to break barriers and open doors: for an inclusive society for all.

Source: UN Enable, Image: Dr Satendra Singh