UNICEF'S SOWC 2013 report on children with disability

The 2013 edition of UNICEF’s State of the World’s Children is dedicated to the situation of children with disabilities. The report examines the barriers – from inaccessible buildings to dismissive attitudes, from invisibility in official statistics to vicious discrimination – that deprive children with disabilities of their rights and keep them from participating fully in society. It also lays out some of the key elements of inclusive societies that respect and protect the rights of children with disabilities, adequately support them and their families, and nurture their abilities – so that they may take advantage of opportunities to flourish and make their contribution to the world.

Details in other accessible formats available at:

http://www.unicef.org/sowc2013/report.html

Apollo Hospital vows to be disabled-friendly

Indraprastha Apollo Hospitals, New Delhi is the First Hospital in India to be Internationally Accredited by Joint Commission International (JCI). It is one of the best multi-speciality tertiary acute care hospitals with over 700 beds in India and the most sought after destination in SAARC region for healthcare delivery.

The hospital website says, “Right from the infrastructure to the latest medical technology acquisition Indraprastha Apollo Hospitals has always kept its Patients First and strived to deliver not World Class but World’s Best Care to its Patients since its inception in 1996.” Even the last sentence of Chairman's profile on the site reads, “ have touched the lives of several hundred thousand children, differently-abled people, cancer and brain trauma patients."

Though, they are leaders at various fronts but when it comes to access to persons with disabilities, Apollo at Sarita Vihar, Mathura Road falls short. Recently, I visited the hospital to see a relative.

I had to meet a relative admitted in ICU. There is an ICU lobby with over 50 reclining beds where attendants can relax. The lobby was situated above gate no.4 and had no lifts. There were 22 steps which one has to climb. I asked for the lift but there was none. There was a longer passage to reach the area from different side but even from that side one has to get down 6-7 steps to reach the ICU lobby. A person with mobility impairment (like me) can only reach there with great difficulty. A wheelchair user can however, just not reach there. I lodged a complaint at the corporate desk and the person there said, ‘Sir it’s a matter of 7 steps only” I said , “ It’s not a matter of just seven steps, If you are boasting this of world class standard and international experience than you must provide the services also.”

I came out and went directly to the auditorium of Apollo. The place was still inaccessible. I had come to the same place in 2010 to attend a workshop. This time also, the passages leading to the basement auditorium doesnot have side railings/wall to support. One has to climb down 8-10 steps without support.  

I could not get down without holding someone else’s hand. Imagine Stephen Hawking to give a lecture at Apollo auditorium! Will you lift the wheelchair of the great scientist? Hospitals has the social accountability of providing reasonable accommodation to persons with disabilities and when you can’t provide the basic requirements of mobility and freedom you can not boast of International standards and exceptional health care.

 On the same day I wrote to Apollo officials and I am glad they responded. The Dy. General Manager – Operations, Dr Karan Thakur emailed me today:

We would like to apologise for not providing wheelchair accessible areas in the auditorium and other places mentioned by you. We are beginning the process of conducting a through audit of our public areas and will put in place access ramps and/or other means to ensure that areas not inaccessible for wheelchair bound persons.

It is our endeavour to provide quality healthcare to our valued patients and we take feedback from our patients and their families seriously, you will see a marked change in the area highlighted by you.

It was a reassuring response and I have no reason not to believe the leading hospital. Another point of note is the attitude of persons with disabilities who still shy from raising their voice. I am myself guilty that I didn’t raise the matter that vociferously in 2010. Lot of times, the invisibility of persons with disabilities, their lack of feedback presents a rosy picture which may not be so. We must raise our voice and help the government and private institutions in providing us reasonable accommodation.

World Multiple Sclerosis Day 2013

Multiple Sclerosis (MS) is a chronic demyelinating neuroinflammatory disease of the central nervous system of unknown etiology. Clinical disease usually starts with recurrent and reversible neurological deficits in early adulthood and transforms into a disease course with continuous and progressive neurological decline 20 years later.

World MS Day (WMSD) is the only global awareness raising campaign for MS by Multiple Sclerosis International Federation (MSIF). Every year, the MS movement comes together to provide the public with information about MS and how it affects the lives of more than two million people around the world. This year, they have started  a movement ‘What’s your motto?’

They want to reach people who may have never heard of MS or who know little about it. We can help them spread the word by sharing our motto on Facebook, Twitter or Pinterest. You don’t have to be living with MS to take part. The initiative is to hear everyone’s mottos for overcoming challenges and making the most of whatever life brings us.

Here’s my motto.

Share yours on the website URL below and spread awareness

http://mymotto.worldmsday.org/en

Suggested resource: Multiple Sclerosis Society of India

                               World MS Day 2012

Symposium on “Integrating the Medical and Social Models of Disability: Time for a New Paradigm

Symposium on “Integrating the Medical and Social Models of Disability: Time for a New Paradigm 15th June, 2013

Indian Spinal Injury Centre (ISIC) and Cross the Hurdles (CTH) are jointly hosting a one-day symposium on Integrating the Medical and Social Models of Disability: Time for a New Paradigm” on Saturday, 15th June, 2013 at ISIC, New Delhi.

Following is the list of speakers and their topics:

1.      Dr A K Mukherjee, ISIC- Defining Disability in 21st Century

2.      Dr. Poonam K Singh, Advisor (International Health) MOHFW, GOI- Keynote address
3.   Dr S Y Kothari, ISIC- Current approach towards disability

4.      Shivani Gupta, AccessAbility- Barriers accentuating disabling conditions
5.   Dr Satendra Singh, UCMS - Embracing the Social Model: The UCMS experience
6.   Dr. Uma Tuli, Amar Jyoti - Successful model of social & medical inclusion: a case study
7.      Maj. DP Singh - Advocacy efforts in rehabilitation

8.      Abha Khetarpal, CTH - Promoting Disability Studies in Healthcare

9.   Dr. H. S. Chhabra, ISIC - Integrating the Medical and Social Models of Disability: Time for a New Paradigm

10. Panel discussion: Consumer perspective

Concept Note of the Symposium

Disability studies provide nuanced ways of thinking about disease, medical ethics, and social justice in health care. It plays the role of a cultural studies field that bridges interdisciplinary academic scholarship, medicine, and patient activism along with fostering collaboration among disciplines and between the common man and the professionals.

Medical models of health care often overlook the social dimensions of health and health care. Disability studies, on the other hand, contrasts the biological model with a social model. It lays stress on finding how much can the suffering of different bodies be relieved through the adjustment, not of biological variables, but of social variables. It unpacks the role of ableism, pathologization, individualization, isolation, confinement, and lack of access in producing human suffering.

The Medical Model of disability perceives disability as a functional impairment. An integrative, biopsychosocial approach towards disability by collaborating health care and Disability Studies is required for mainstreaming of disability in an inclusive developmental agenda. Disability Studies encourages perspectives that place disability in social, cultural, and political contexts.

Available opportunities to learn about disability and rehabilitation must therefore be strengthened by ensuring that the society acquires not only the specific knowledge and skills, but also the attitudes required to provide effective service to persons with disability. Collaboration between health care professionals, university academics, persons with disability, and disability interest groups may help in ensuring that everyone is adequately sensitised to issues about disability. Disability studies, if introduced in various fields of education, especially medical education can offer an explicit commitment to assist disabled people in their fight for full equality and social inclusion. Thus a successful integration between Medical and Social Models of disability would be brought about.

Access Icon Project: Humanizing International Symbol of Access

The now familiar International Symbol of Access (ISA) was designed by Susanne Koefoed and is a copyrighted image of ICTA, Rehabilitation International. The symbol which is a milestone in disability advocacy is often criticized for being passive. The first modification came in 1994 when Brendan Murphy from Ireland updated the image by pushing the figure’s posture forward and putting the arm behind the body. Still, the symbol was not adopted as many feared that it will violate the American Disability Act.

Sara Hendren is an artist and researcher based in Cambridge, Mass. She runs the Abler web site and writes on adaptive technology. Sara began focusing her attention on issues of accessibility after giving birth to a son with Down syndrome. She started collaborating with Brian Glenney, a philosophy professor at Gordon College on the original wheelchair icon project in early 2009. Their joint effort lead to the Access Icon Project.

Their modified ISA is available on the website www.accessibleicon.org. The Access Icon Project website states:

“Accessible Icon Project provides supplies and services to transform the old International Symbol of Access into an active, engaged image. We think visual representation matters. People with disabilities have a long history of being spoken for, of being rendered passive in decisions about their lives. The old icon, while a milestone in ADA history, displays that passivity: its arms and legs are drawn like mechanical parts, its posture is unnaturally erect, and its entire look is one that make the chair, not the person, important and visible. As people with disabilities of all kinds—not just chair users—create greater rights and opportunities for social, political, and cultural participation, we think cities should evolve their images of accessibility too.”

The symbol is gradually finding acceptance. Recently, the Enabling Unit for persons with disabilities at University College of Medical Sciences (UCMS), Delhi adopted the new symbol and using it in the accessible parking. The Coordinator of Enabling Unit has also written to Chief Commissioner for persons with disabilities in India to replace the static ISA with the new dynamic ISA. The letter is here. He has also requested to Vice Chancellor of University of Delhi to use the new icon if appropriate.

Based on the above little initiatives, the Accessible Icon Project included Enabling Unit, UCMS as medical partner in this great cause of humanizing ISA. We thank Dr Hendren and Dr Glenney for humanizing the symbol and the entire unit of Access Icon Project in their great effort.

Scribe Guidelines from CCPD

F.No. 16-110/2003-DD.III

Government of India

Ministry of Social Justice & Empowerment

Department of Disability Affairs

***

Shastri Bhawan, New Delhi

Dated:  26^th February, 2013

To

Principal Secretary/ Secretary, Social Welfare of States/UTs.

Subject:       Guidelines for conducting written examination for Persons with Disabilities.

Sir,

          I am directed to say that Chief Commissioner of Persons with Disabilities (CCPD) in its order dated 23.11.2012 in case No. 3929/2007 ( in the matter of Shri Gopal Sisodia, Indian Association of the Blind Vs. State Bank of India & Others) and in case No.65/1041/12-13 ( in the matter of Score Foundation Vs. Department of Disability Affairs) had directed this Ministry to  circulate guidelines for the purpose of conducting written examination for persons with disabilities for compliance by all concerned. In compliance of the above order, this Ministry hereby lays down the following uniform and comprehensive guidelines for conducting examination for the persons with disabilities as recommended by CCPD:-

           i.      There should be a uniform and comprehensive policy across the country for persons with disabilities for written examination taking into account improvement in technology and new avenues opened to the persons with disabilities providing a level playing field.  Policy should also have flexibility to accommodate the specific needs on case-to-case basis.

       ii.        There is no need for fixing separate criteria for regular and competitive examinations.

      iii.        The facility of Scribe/Reader/Lab Assistant should be allowed to any person who has disability of 40% or more if so desired by the person.

      iv.        The candidate should have the discretion of opting for his own scribe/reader/lab assistant or request the Examination Body for the same.  The examining body may also identify the scribe/ reader/lab assistant to make panels at the District/Division/ State level as per the requirements of the examination.  In such instances the candidates should be allowed to meet the scribe a day before the examination so that the candidates get a chance to check and verify whether the scribe is suitable or not.

        v.        Criteria like educational qualification, marks scored, age or other such restrictions for the scribe/reader/lab assistant should not be fixed.  Instead, the invigilation system should be strengthened, so that the candidates using scribe/reader/lab assistant do not indulge in mal-practices like copying and cheating during the examination.

      vi.        There should also be flexibility in accommodating any change in scribe/reader/lab assistant in case of emergency.  The candidates should also be allowed to take more than one scribe/reader for writing different papers especially for languages.

     vii.        Persons with disabilities should be given the option of choosing the mode for taking the examinations i.e. in Braille or in the computer or in large print or even by recording the answers as the examining bodies can easily make use of technology to convert question paper in large prints, e-text, or Braille and can also convert Braille text in English or regional languages.

   viii.        The candidates should be allowed to check the computer system one day in advance so that the problems, if any in the software/system could be rectified.

      ix.        The procedure of availing the facility of scribe should be simplified and the necessary details should be recorded at the time of filling up of the forms.  Thereafter, the examining body should ensure availability of question papers in the format opted by the candidate as well as suitable seating arrangement for giving examination.

        x.        The disability certificate issued by the competent medical authority at any place should be accepted across the country.

      xi.        The word “extra time or additional time” that is being currently used should be changed to “compensatory time” and the same should not be less than 20 minutes per hour of examination for persons who are making use of scribe/reader/lab assistant.  All the candidates with disability not availing the facility of scribe may be allowed additional time of minimum of one hour for examination of 3 hours duration which could further be increased on case to case basis.

     xii.        The candidates should be allowed to use assistive devices like talking calculator (in cases where calculators are allowed for giving exams), tailor frame, Braille slate, abacus, geometry kit, Braille measuring tape and augmentative communication devices like communication chart and electronic devices.

   xiii.        Proper seating arrangement (preferably on the ground floor) should be made prior to the commencement of examination to avoid confusion or distraction during the day of the exam.  The time of giving the question papers should be marked accurately and timely supply of supplementary papers should be ensured.

    xiv.        The examining body should also provide reading material in Braille or E-Text or on computers having suitable screen reading softwares for open book examination.  Similarly online examination should be in accessible format i.e. websites, question papers and all other study material should be accessible as per the international standards laid down in this regard.

     xv.        Alternative objective questions in lieu of descriptive questions should be provided for Hearing-Impaired persons, in addition to the existing policy of giving alternative questions in lieu of questions requiring visual inputs, for persons with Visual Impairment.

2.       You are requested to ensure that the above guidelines are scrupulously followed while conducting examination for persons with disabilities.  All the recruitment agencies, Academics/Examination Bodies etc. under your administrative control may be advised appropriately to ensure compliance of implementing these guidelines.  Action taken in this regard may be intimated to this office.

3.       The above guidelines are issued with the approval of Hon’ble Minister (Social Justice & Empowerment). 

Yours faithfully,

(Jagdish Kumar)

Deputy Secretary to the Govt. of India

Copy to: CCPD, Sarojini Bhawan, Bhagwan Dass Road, New Delhi with reference to order dated 23.11.2012 in case No. 3929/2007 and in case No.65/1041/12-13.

Maulana Azad Medical College wakes up finally, starts constructing ramps

It was a typical hot June afternoon and I was standing outside the administrative block of Maulana Azad Medical College (MAMC), New Delhi. I had gone there to renew my Delhi Medical Council (DMC) registration number. The DMC  is also in the administrative block of MAMC. My problem was two innocuously looking steps at the entrance. These two steps without side support or railing may be a nightmare for persons with disabilities. Please find below the photograph clicked on the same day. Climbing can become a herculean task if a person is wearing assistive device since he cannot flex the leg (like myself). I tried to maneuver to take support from the adjacent wall but the distance was more. Sweating out for 10 minutes, I was looking out for help but the guard was not there. Finally, he came and I asked for support of his hand. Rome was won!

Entrance of MAMC as on 13 June 2012

In 2008, University of Delhi in association with SAMARTHYAM launched a project "Accessible University of Delhi" to make all colleges disabled friendly. The audit of MAMC took place on March 2008 and detailed report is available here. The report also mentions about the changes to the entrance as shown below:

However, nothing happened on this front. This building is important one with Dean's office, departments, medical education department, Delhi Medical Council and many other important offices. After coming back, I wrote an email to Dean MAMC, Registrar MAMC, NTTC, and DMC. There was no reply, and I got failure notice from Dean MAMC ID. I called the Dean office and took the personal email of Dean, Dr AK Aggarwal. The similar mail was sent and there was no response either.

Later on, on the eve of World Disability Day, I sent a hard copy to Secretary, DMC to look into the grievance of inaccessible DMC and MAMC entrance. Again there was no response. The problem of inaccessible medical institutions to persons with disabilities including students, faculty, nonteaching staff, patients, and attendants is not only the hall mark of Delhi but all over India. I then wrote to Chief Commissioner of Persons with Disabilities to include mandatory ‘access audits’ in all the medical inspections of Medical Council of India (MCI).

May 2013: Construction of ramp at MAMC

O/o CCPD wrote to MCI to submit an action taken report in a month. MCI did not respond and CCPD then wrote a strong letter as reminder. Finally, MCI vide No.MCI-34(1)(UG)(Gen.)/2012-Med./167890 dated 29^th March 2013 wrote to Principals/Deans of all the medical institutions in India, citing my letter (which included example of MAMC as inaccessible) to comply and submit action taken report directly to Ministry of Social Justice and Empowerment. The whole story is covered here.

Within weeks after this letter, MAMC woke up and as shown below in the pictures, have started constructing ramp at the administrative block and other places. 

The section 46 of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 mandates barrier-free access to all public places. Also, Article 9 of the Convention (UNCRPD) enables persons with disabilities to live independently and participate fully in all aspects of life. 

The law mentions clearly to provide reasonable accommodation to persons with disabilities but as common in India, we need to keep reminding peoples what our rights are.

The hindi daily 'Hindustan' covering the news

Suggested Reading: MCI asks all medical institutions to be 'accessible'

Representation to include ‘active’ International Symbol of Access

University College of Medical Sciences (University of Delhi) & Guru Teg Bahadur Hospital DElhi – 110 095

   

ENABLING UNIT, EQUAL OPPORTUNITY CELL

http://EnablingUnit.yolasite.com/

EU/EOC/UCMS/101                                                                                  Dated: Mar 19, 2013

                                                                                                                           

Chief Commissioner for PwD

Sarojini House, 6 Bhagwan Dass Road

New Delhi-01

Sub:    Representation to include ‘active’ International Symbol of Access

Dear Sir,

            The International Symbol of Accessibility (ISA) have become among the most widely recognised representations of disability. However visual representation matters. People with disabilities have a long history of being spoken for, of being rendered passive in decisions about their lives. The current ISA displays passivity: its arms and legs are drawn like mechanical parts, its posture is unnaturally erect, and its entire look is one that make the chair, not the person, important and visible. As people with disabilities of all kinds—not just chair users—create greater rights and opportunities for social, political, and cultural participation, we think DPO’s should evolve their images of accessibility too. 

The revised ISA by Harvard design researcher Sara Hendren focuses more on ‘person with disability’ and is an active image.  The graphic elements have following active features:

1.      Head is forward to indicate the forward motion of the person through space. Here the person is the "driver" or decision maker about her mobility.

2.      Arm is pointing backward to suggest the dynamic mobility of a chair user, regardless of whether or not she uses her arms. Depicting the body in motion represents the symbolically active status of navigating the world.

3.      By including white angled knockouts the symbol presents the wheel as being in motion.

4.      The human depiction in this icon is consistent with other body representations found in the ISO 7001 - DOT Pictograms.

5.      The leg has been moved forward to allow for more space between it and the wheel which allows for better readability and cleaner application of icon as a stencil. 

Please find below the pictorial representation of the revised ISA used by Enabling Unit at UCMS:

Sir, you have earlier taken steps to ban the expression ‘handicapped’ and avoiding the use of word ‘differently-abled’. These small steps are highly significant as how PwD’s are represented in society. The above revised ISA not only focuses on ‘activity’ but also stressed on the person involved. We should encourage ‘People First Language’ and steps taken by your office to use ‘Persons with Disabilities’ over ‘Disabled Persons’ are noteworthy.

In this connection, I represent before this office to consider revising the current ISA with the one depicted above. I would like to declare that I have no conflict of interest here. If your office considers the image appropriate, it may be directed to replace the static ISA with the one which portrays dynamism and focuses on person rather disability.

With regards

Yours sincerely
(Signed)

Dr Satendra Singh

Coordinator, Enabling Unit

Equal Opportunity Cell

University College of Medical Sciences

& GTB Hospital, Delhi

Founder ‘Infinite Ability’

Suggested reading:
Access Icon Project: Humanizing International Symbol of Access