Retina India Newsletter, Volume 1(11): December 2012
Knowledge: The Well-spring of Hope
When Pandora opened the forbidden box, she populated our universe with all sorts of negative emotions: fear, suspicion, jealousy, greed and so on. So says Greek mythology. The story, fortunately, didn’t stop there. Pandora opened the box a second time, and out came Hope. Even when everything seems lost, Hope is what helps us to live on to see another day. But in order to sustain Hope we need Knowledge. Indeed, Knowledge may even be considered the tangible avatar of the esoteric Hope. It is in recognition of this potential of Knowledge to empower and make Hope meaningful that Retina India began publishing a monthly newsletter in January this year. As we prepare to step into our second year, we would like to take a minute to pause and look back at how far we have succeeded in our endeavor:
There have been in-depth articles on eye conditions written in an accessible language by doctors and surgeons; pathbreaking research into cures; interviews and first person narratives by persons who have overcome visual challenges (often breaking barriers imposed or imagined by a well-meaning society); inspiring stories of achievers; and guidelines and strategies for dealing with intransigent, acquired attitudes towards blindness. All these have made up the columns of the newsletter, which, by the end of the year had acquired a name: InSight. The content had also diversified.
In the coming year, InSight will strive to expand its scope to include awareness-creation about opportunity, become a tool for advocacy on issues that matter, and bridge the gap between perceptions and reality towards its long term goal of becoming a platform that brings together patients, practitioners and policy-makers. However, one lacuna that we feel greatly is Your participation. We want to request you, to urge you, to send us more feedback so that we can channelize our readers’ knowledge to become a more significant instrument of hope.
In this issue, we carry Subhash Vashishth’s viewpoint on the Draft Rights for Persons With Disabilities Bill, 2012. An overview of the Bill was featured in the November issue of InSight. We would like to carry more perspectives on the Bill in the coming months as its implications for us are enormous, and its impact, long-term. Please do write in with your views. In our Medical Section, Dr. Mallika Goyal writes about Adult Macular Degeneration. Kartik Sawhney, a member of ‘Youth of Retina India’, and Ajay Minocha represented our country in the Global IT Challenge for Youth With Disabilities held in South Korea, and returned with laurels. Kartik spoke to InSight about his competition experience. Read his interview in the Featured News. The Nobel Prize in medicine this year was awarded to work on stem cells. Our research article, therefore, focuses on the implications of stem cell research for various eye conditions, and the cures that are being tested. An interesting feature on whether or not a dog knows its owner is blind winds up this issue.
E-mail your feedback, comments and suggestions to email@example.com.
More than 3500 persons with different disabilities had gathered for a Conference on Disability organized by the Korean Society for the Rehabilitation of Persons with Disabilities at Incheon, near the South Korean capital, Seoul. The Global IT Challenge competition, which was organized as a part of the conference, saw more than 300 participants between 16 and 25 years, from 28 countries. Two Indian youngsters – Kartik Sawhney and Ajay Minocha – won prizes in three of the five competitions.
Kartik, who won the first prize in the e-tools event, was presented a laptop, and Ajay who won the second place in the e-life event got a Samsung Tablet-multimedia player. In the e-tools competition, participants had to solve problems based on an Excel spreadsheet using different functions. The e-life competition tested skills of the visually challenged participants as Internet users, as they had to find the answers to a set of questions by searching the web.
Kartik, who also won the best poem contest, spoke to Retina India’s InSight and also shared his winning poem with us:
Interview with Kartik Sawhney by G. Vamshi
RETINA INDIA (RI): Congratulations on winning, Kartik. Can you tell us what skills helped you win? This will help others to concentrate on developing such skills.
KARTIK SAWHNEY (KS): For me, extensive use of computer for over 12 years, coupled with the comfortable use of screen reader, besides English communication skills helped me to win the competition.
RI: How did you come to know about this competition? And how did you get selected for it?
KS: The Korean Society for the Rehabilitation of Persons with Disabilities sent a letter to Leonard Cheshire Disability (LCD) in India. Ajay and me are members of the LCD Young Voices group (it is a group where youth with disabilities come together to advocate on issues concerning them). LCD selected two of us to represent the country at this event.
RI: Did you get any help from sponsors, mentors, etc.?
KS: We received continued support and guidance from Leonard Cheshire Disability. Moreover, nothing would have been possible without the continued cooperation and guidance received from Prashant Verma Sir. Sonu Golkar Sir (who is the national coordinator for Young Voices) also was a great support.
RI: How was it interacting with youth from other countries? What are your insights about their attitudes?
KS: I met a few contestants from small island countries such as Palao, Nauru etc. They feel that inclusive education is not something that is to be welcomed. They believe that special schools are the right place for blind students (though, I was able to convince them of the necessity for integration). Youth from developed countries, of course, have benefited from outstanding infrastructure, support and policies in place in their nations. And the best thing is that these policies are not only on paper, but are implemented.
RI: Any general experiences that you would like to share with others?
KS: It was a wonderful and enriching experience.
RI: What advice would you give others who want to participate in, and win, such competitions?
KS: Just practice as far as possible. I think it is perhaps the only thing that helped me and Ajay win this competition.
RI: Kartik, can we publish your prize-winning poem in InSight?
KS: I will be more than happy to share it with you. It went like this:
“All in all we had a wonderful experience. Initially, it was difficult to adjust to their food and language, but in the end we enjoyed different dishes and cultural programs, and we managed to get by with English as most were able to understand a little bit of it, and we used sign language when they didn’t,” says Ajay Minocha.
Prashant Ranjan Verma adds, “It was heartening to note that the level of education and I T skills among persons with disabilities in India is much better than in some countries of the Asia-Pacific region. But Korea, being a developed nation, is far ahead of us in terms of accessibility of infrastructure, use of technology, security, productivity, income, human rights, justice, equality and more.”
* With inputs from reports by Prashant Ranjan Verma and Ajay Minocha
LIVEWIRE: CURRENT NEWS, ANNOUNCEMENTS AND EVENTS
Section 32 of India’s Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 mandates that “the government shall identify posts that can be reserved for persons with disability in every establishment under it” and shall review and update the lists within every three years “taking into consideration the developments of [assistive] technology”. However, the law has neither been followed in the letter nor the spirit. The first list, which was put up in 2001 after the passing of the PWD Act, was to be revised and updated in 2004 as per Section 32. However, the same was notified only in 2007. Once again, though the new updated list fell due in 2010, the Social Justice and Welfare ministry has yet to act in this regard. Taking suo motu cognition of this, the Chief Commissioner for persons with disabilities (CCPD), Mr. Prasanna Kumar Pincha, had recently directed the department of disability affairs (DDA) to publish the revised/ updated list latest by October 15, 2012 (Click here to see earlier news report).
Severely castigating the department for failing to abide by the October 15th deadline, the CCPD on November 23, 2012 directed DDA to notify the revised/ updated list within 30 days.
Further, the Court noted “with utter dismay and shock” that things had not moved on another matter that had been “hanging fire” since 2008. This pertained to the petition for a uniform and comprehensive policy to govern written examinations for persons with disabilities.
In May 2007, Mr. Gopal Sisodia, general secretary of the Indian Association of the Blind, had drawn the attention of the court to the need for the issuance of a comprehensive policy to govern written examinations for persons with disabilities. By November 2007, the Ministry of Social Justice and Empowerment (MSJE) had not taken any measures to alleviate the situation despite the court’s intervention, and attributed its failure to comply to the receipt of a large number of recommendations from various organizations, which needed to be collated. The court thereupon advised the ministry to forward to it copies of all the suggestions and itself subsequently held detailed discussions with the stakeholders. Based on these deliberations, recommendations were forwarded to the ministry. That was in March 2008.
However, since no action has still been taken by the MSJE, on November 23,2012 the court directed the department of disability affairs which is under the MSJE “to complete all necessary processes and procedures, finalize and circulate for compliance” within two months the uniform and comprehensive guidelines put together by the Court [in 2008]. “In the absence of such uniform and comprehensive guidelines, persons with disabilities including persons with blindness and low vision continue to be routinely subjected to prolonged and pervasive hardship and disadvantage with the result that more often than not, many candidates with disabilities have to run from pillar to post … to fix various problems,” noted the CCPD.
The Louis Braille Medal – a prestigious international award – was presented to Mr. J. L. Kaul by the World Blind Union (WBU) on November 16th during the organization’s general assembly meeting in Bangkok, Thailand. “Mr. Kaul, who is himself blind, has been working ceaselessly for the empowerment of persons with visual impairment in India and overseas for the last about 40 years”, says the award citation. The award, which is the highest honor conferred by WBU has gone to the citizen of a developing country after several decades.
Mr. Kaul is the secretary general of the All India Confederation of the Blind. The award, which is given once every four years to a person who has rendered outstanding international service in the field of visual impairment, was presented to Mr. Kaul by the president of WBU, Mrs. Maryanne Diamond at the conclusion of the Bangkok event.
(Source of picture: http://www.thehindu.com/life-and-style/society/article3536312.ece)
The Election Commission has made special arrangements to make voting easier for persons with impairments in the Gujarat elections to be held on December 13 and 17. For instance, all electronic voting machines (EVMs) will be equipped with Braille numbers. Braille ballot papers with the names of all the candidates will be available. The voter can identify the number of the candidate they wish to vote for, and press the corresponding Braille number on the EVM. In addition, the Election Commission is taking steps to spread awareness about these facilities, and also about statutes such as Rule 49 (N), prescribed in the Handbook of Presiding Officers, distributed by Election Commission, which states that “…the presiding officer shall permit the elector to take with him a companion of not less than eighteen years of age to the voting compartment for recording the vote on his behalf and in accordance with his wishes …” However, no person shall be permitted to act as the companion of more than one elector at any polling station on the same day. Training is also being given to the polling staff to sensitize them to the needs of people with disabilities.
More than a hundred students with visual impairments, from Gujarat’s Seva Kunj Institute, visited the Mysore Palace in the south Indian state of Karnataka during the festive Dasara celebrations that bring alive this city. Besides literature in Braille (English), which provides an overview of the palace, the Palace Board also has a miniature wooden model of the palace, which blind students can examine with their hands. The students also visited the Mysore Zoo. The zoo has a special provision for visits by people with disabilities on its weekly holiday, Tuesday.
Earlier this year, the country’s first talking ATM (Automated Teller Machine) was set up in Ahmedabad by the Union Bank of India to facilitate banking for people with visual challenges. In October 2012, the State Bank of India opened its first talking ATM at the Jawaharlal Nehru University (JNU) campus in New Delhi. Within the next two years SBI intends to have 4000 such ATMs in operation all over the country.
Talking ATMs have special features like audio guidance and text-to-speech conversion. ATM machines designed as per Access for All (AFA) standards are expected to have accessible key pads, voice-guidance technology, Braille stickers and multi-lingual capability.
The banks’ initiatives follow a Reserve Bank of India (RBI) Circular on customer service, clause 5 of which states:
- All the banking facilities such as cheque book facility including third party cheques, ATM facility, Net banking facility, locker facility, retail loans, credit cards etc. are required to be invariably offered to the visually challenged without any discrimination. Banks may also advise their branches to render all possible assistance to the visually challenged for availing the various banking facilities.
- Banks should make at least one third of new ATMs installed as talking ATMs with Braille keypads and place them strategically in consultation with other banks to ensure that at least one talking ATM with Braille keypad is generally available in each locality for catering to the needs of visually impaired persons. Banks may also bring the location of such talking ATMs to the notice of their visually impaired customers.
For more than a decade, the United Nations Organization (UN) has been observing December 3rd as the international day of persons with disabilities. The theme for this year is ‘Removing barriers to create an inclusive and accessible society for all’. Each year’s theme is designed to sensitize States and societies to the various inequalities that the majority imposes, unthinkingly, on the world’s largest minority: persons with disabilities. Thus, ‘Arts, Culture and Independent Living’, the theme of 1998, sought to create awareness about the more enriched world we could live in if greater opportunities were created for the full flowering of the creative and intellectual talents of people with disabilities. ‘Nothing about us without us’, the theme of 2004, sought to highlight the imperative of involving people with disabilities at all stages of planning and policy-making that impact their lives.
This year’s theme seeks to focus on the fact that inclusion and accessibility are fundamental rights as per the Convention on Rights of People With Disabilities and that nations of the world must make this part of their development agenda in order to ensure progress for all.
[Note: Beginning with the New Year issue, InSight will bring out a series of special issues on inclusion and accessibility with in-depth views on different sectors: infrastructure, information and communication technology, education and employment.]
by Dr Mallika Goyal
What is AMD?
AMD is an irreversible ageing disease that results in loss of central vision because of damage to the macula, an area in the centre of the retina. Age-related macular degeneration (AMD) is a major cause of blindness in those over 50 years old.
The retina is the light-detecting film at the back of the eye on which all images are formed. The macula contains the highest density of light receptors, especially cones (the cells that enable daytime vision and identify color) and so the macula is crucial for seeing fine detail. It enables one to read, write, drive, to recognize faces and see color.
There are two types of AMD:
Dry AMD is the most common form of the condition. Light receptor cells in the macula don’t take in enough nutrients and become less efficient at clearing by-products of cell functioning. This causes abnormal deposits, called drusen, to collect under the retina, making it uneven.
With time, retinal cells degenerate and die. This occurs very gradually over many years.
Wet AMD or neovascular AMD affects 10-20% per cent of cases. In this form there is the growth of abnormal blood vessels under the macula. These blood vessels are very fragile and so leak fluid or blood, lifting up and distorting the macula. This results in distortion of images. The vessels heal with scarring so that the specialized macula is replaced by dead scar tissue, causing severe and rapid visual loss. Wet AMD can develop and progress very quickly and unpredictably.
Figures 4 & 5: New vessels with bleeding under macula
What Causes of AMD ?
No definite cause is identified, but it’s probably a combination of genetic and environmental factors. Those with a family history of the condition are at increased risk. AMD becomes more likely as a person ages.
What are the Symptoms of AMD?
Loss of central vision and sharpness of vision is the only symptom. However, this is very silent, and when one eye is good, a person may not recognize that they have lost significant amount of vision in the other eye.
Both eyes are usually affected, though one eye may be affected several years before the other. There’s no pain or redness of the eyes.
As the macula is in the centre of the retina only central vision is lost; peripheral vision is preserved allowing visualization of large objects. A patient can see only the edges of what they are trying to look at, and the focus (and color strength) in this area is poor. Any activity that requires detailed, clear vision, such as reading, writing, watching television, driving, working on computer etc. is affected.
How does one know if they have Age-Related Macular Degeneration?
One may have one of these symptoms:
- Blurred central vision
- Distorted images, e.g. straight lines appear wavy and parts of the line appear blank
- Problems differentiating colors, specifically dark colors from other dark colors and light colors from other light colors
What puts one at risk of Age-Related Macular Degeneration?
One’s risk increases with:
- Age: one in four people aged over 60 have this disease
- Family history: Risk increases 4-5 fold for people who have a close relative with AMD; 50% for these people versus 12% for people without affected relatives.
- Gender: Women are more likely to develop AMD
- Smoking/ tobacco consumption increases risk 2-3 fold
- Cardiovascular diseases
- Diet deficient in fruits and vegetables, rich in fats. Deficiencies in antioxidants (vitamins A, C, and E, zinc, zeaxanthin) have been noted in some people with AMD. Antioxidants prevent free radicals or unstable oxygen from damaging the retina.
- High lipids/ blood cholesterol
- Excessive unprotected exposure to sunlight (ultraviolet rays or high-energy visible light)
- Blue Iris (light color eyes)
There is no treatment available at this time to reverse or even reliably prevent the progression of Dry AMD. Not smoking and eating a healthy diet may help to slow the rate of deterioration. A regular supplement of vitamins A, C and E, zinc, lutein and zeaxanthin may help to slow down the progression to severe disease. [Note: The research article on stem cell therapy in this issue, 'Stem Cell Research: What is there in it for the eye?’ talks of a treatment for Dry AMD that is still in the clinical trial stage.]
Additional lighting and magnifiers can help those with dry AMD to make better use of their vision.
Treatment for this is urgent because the disease progresses rapidly and irreversibly. Treatment aims to control the formation of new blood vessels. Current treatment includes:
- Photodynamic Therapy (PDT) uses a LASER (light-based treatment) to seal abnormal blood vessels. A drug called verteporfin is injected intravenously which circulates in the blood and coats the inside of the abnormal blood vessels. The drug is then activated by shining a light at the coated blood vessels, triggering it to destroy them. This isn’t destructive to the normal retina. However, repeated treatments may be needed every few months because closed blood vessels can reopen. Because Verteporfin is activated by light, exposure to sunlight must be avoided for two days after treatment to avoid photosensitivity reactions of the skin.
- Anti-VEGF Drugs injected into the eye: These are drugs which interfere with the process of new blood vessel formation. They target a protein involved in this process, called vascular endothelial growth factor or VEGF. High levels of VEGF cause formation of abnormal blood vessels and these drugs can block its action. These drugs need to be injected into the eye through a fine needle, usually every 4-6 weeks as long as required. The most effective and widely used anti-VEGF drugs currently are Lucentis and Avastin. These can improve or stabilize vision in a vast majority of wet AMD patients. Most recently, another drug VEGF-Trap or Eylea or has shown promising results.
While age and genetic predisposition cannot be modified, some risk factors can be.
Smoking - people who smoke triple their risk of developing AMD. For people with a family history of AMD, this risk may be 34 times that of a non-smoker. When people stop smoking the risk decreases, but this can take up to 20 years.
Ultraviolet (UV) light - Wearing high-quality sunglasses or head gear with brims in bright sunlight is recommended.
Nutrition - Diet rich in antioxidant vitamins and minerals, including lutein and zeaxanthin, may help reduce the risk of a person developing AMD. This means plenty of fruits and vegetables, particularly leafy green vegetables, sprouts and nuts.
Eye Checks: Early diagnosis improves the chances of successful treatment. People over 50 years age should have a complete eye examination and then follow-up examinations every 2-4 years.
People with AMD should check each eye vision separately (by closing the other eye) at home every week and promptly notify their doctor of any changes in their vision. This can be done best using an Amsler grid. The Amsler grid consists of a square grid with a dark dot in the middle. Broken or distorted lines or a blurred or missing area of vision could be one of the first signs of AMD. The grid also helps to monitor changes in vision once changes have been detected.
Screening and Diagnosis
Eye examination. This includes a simple test of central vision and testing with an Amsler grid. Also, evaluating the macula for any changes from normal appearance.
Angiography. In this procedure, fluorescein dye or indocyanine green dye is injected into a vein in the arm and photographs of the macula are taken as the dye passes through blood vessels in the retina. This shows up the abnormal blood vessels in the macula that may not be otherwise visible.
Fig 7 & 8: Fluorescein angiography shows the abnormal blood vessels (central white patches) in macula
Optical coherence tomography (OCT). This quick, noninvasive test gives a cut-section view of the retina showing all layers, their thickness, any disturbance, fluid collection, new vessels etc, and helps monitor the response of the retina to treatment.
Making the best use of the reduced vision
- A Low-vision Center or Rehabilitation Center may be able to assess one’s visual status and offer certain devices that can be helpful, for example, handheld magnifiers for reading, telescopes for distance, talking watches, computers that talk or that use large type faces. Some clocks, radios, telephones and other appliances have specially large numbers.
- Large-print books and magazines.
- View with large font size on the Computer/ Internet.
- Extra lighting in your home or work place.
- Online networks or support groups.
* Dr. Mallika Goyal, MD, is a specialist in the Retina-Vitreous Service, Ophthalmology Department of Apollo Hospitals, Hyderabad.
Note for patients: Queries pertaining to retinal disorders (along with scanned copies of the medical reports) can be e-mailed to firstname.lastname@example.org. Retina India’s medical team will try to answer the queries as soon as possible.
By Revathi Sampath Kumaran
Stem Cells have been in the news recently because of the Nobel Prize being awarded this year to two researchers who have been working in this area.
Stem cells are cells that have yet to be allotted a function. That is, they are ‘undifferentiated’. When an organism is in the embryonic stage, it is made up of stem cells that can go into the making of any tissue or organ in the body. This ability to become any type of cell is called pluripotency. As the embryo grows, cells stop being pluripotent. They take on specialized functions and become blood cells or brain cells or muscle cells and so on or remain unspecialized stem cells that can replenish or regenerate cells in the tissue or organ to which they belong. John Gurdon and Shinya Yamanaka share the Physiology/ Medicine Nobel for demonstrating that even non-embryonic stem cells can be re-programmed to make them pluripotent again, and they can be ‘directed’ to take on roles that they had not been intended for. As the Nobel citation states, their discoveries caused a fundamental change to the “understanding of how cells and organisms develop and opened the door for research on regenerative therapies”. Since stem cells have the intrinsic ability to divide and proliferate almost indefinitely, scientists can culture them in a lab and grow stem cell lines for therapeutic and research purposes.
Significantly for us, doctors in the US and UK have started clinical trials to determine whether stem cells can help treat certain eye conditions that were hitherto considered irreversible. In the next few months doctors in Japan are also expected to begin clinical trials. Clinical trials are typically done on human volunteers to measure the effect and efficacy of medical interventions that have already been tested for safety on animals in research labs.
Pre-clinical trials on animals have reported that injecting fresh retinal cells derived from stem cells into the eye resulted in substantial improvement in eyesight, with reports of near-normal vision recovery in some of the mice. The retinal cells (RPE cells) have been derived from three different types of stem cells: human embryonic stem cells, human neural stem cells, and induced pluripotent stem cells. [See Box 1 for notes on these cells]. The long term goal of the research underway is to discover therapies that will be able to restore damaged vision in a variety of retinal disorders, though the present trials are all on patients with some form of macular degeneration.
The rest of this article will give a brief overview of some of the groundbreaking clinical trials underway, with a view to understanding the role and scope of stem cell research for patients with eye conditions.
Trials using embryonic stem cells (hESC)
In mid-2011, doctors at the Jules Stein Eye Institute, University of California, Los Angeles (UCLA) began clinical trials of a treatment for two diseases of the outer retina, namely dry Adult Macular Degeneration (AMD) and Stargardt’s Dystrophy [See Box 2 for notes on the diseases]. Six patients have been treated so far at UCLA. The patients are adults, and their diseases were at an advanced stage. RPE cells generated from hESCs were transplanted into one eye of each of the patients in an out-patient procedure. In December 2011, parallel clinical trials were begun on a patient with Stargardt’s by Moorfields Eye Hospital, London. The therapy has been developed by Advanced Cell Technology, a company based in Massachusetts, USA.
A study published in January this year in the medical journal, Lancet, describes the treatment of two patients who had hESC-derived cells transplanted into their eyes. One of the patients had dry AMD and the other had Stargardt’s dystrophy. The report published in the journal had been prepared four months after the procedure, and findings hold out a lot of potential: the transplant was not rejected by the body’s immune system, neither was there any inflammation, abnormal growth or hyper-proliferation of the cells resulting in tumours. In addition, the patients did not lose vision, and in fact reported small improvements in visual acuity. However, the doctors caution that more long term studies are needed to rule out the possibility of the visual gains being merely a placebo effect, or resulting from immunosuppressive drugs the patients were prescribed. The UCLA team was led by Steven Schwartz, M.D. who is Ahmanson Professor of Ophthalmology at the David Geffen School of Medicine at UCLA and retina division chief at UCLA’s Jules Stein Eye Institute.
The full version of the Lancet article may be downloaded HERE .
Trials using purified adult human neural stem cells (HuCNS-SC)
On October 12th this year, Retina Southwest, based in Texas, USA, began clinical trials for testing a new therapy for dry AMD. Instead of embryonic stem cells used in the trials underway at UCLA, discussed above, purified neural stem cells were injected into the more affected eye of a patient with dry AMD. Over the next one year, a cohort of about 16 patients will be observed at fixed intervals for assessing the safety of the therapy and for signs of visual benefit. Since this is the first time that HuCNS-SC cells are being used for treating dry AMD in humans, the efficacy of these cells will also be a major consideration.
Dr. Rand Spencer was the retinal surgeon, and David Birch, Ph. D., is the principal investigator of the study. Dr. Birch is Research Director, Retina Foundation for the Southwest and director, Rose Silverthorne Retinal Degenerations Laboratory. He also teaches at the University of Texas Southwestern Medical Center, Dallas.
Trials using induced pluripotent stem cells (iPS)
In early 2013, clinical trials on patients with AMD are set to begin in the Riken Center for Developmental Biology in Kobe, Japan. Scientists here will cultivate RPE tissue for the treatment, using iPS cells generated from the patient’s own skin cells. Pre-clinical trials on mice, using RPE made from iPS cells have indicated that the procedure is safe for replication in the human eye.
Speaking about these experiments in June this year, Dr. Masayo Takahashi, leader of the research team at Riken said that the treatment on human patients will begin soon after the clinical trials are approved by the ethics board of the Foundation for Biomedical Research and Innovation, and the government.
Discovery of cell-based therapies is probably the most important application of the study of human stem cells. However, besides issues of cost and scalability, several concerns continue to engage the attention of doctors and scientists: Are the visual gains long-lasting? Will the transplanted cells integrate thoroughly with the patient’s eye, or will it be rejected in due course of time? Do the treatments post any threat in the long-term? As Steven Schwartz told Time magazine in January this year, “We have to be careful that we do not raise expectations … We do not know if it will help or hurt. That’s what we are trying to find out.” This is a caution we will do well to bear in mind.
Glossary. In Stem Cell Information [World Wide Web site]., 2011 [cited Monday, October 22, 2012] Available at: http://stemcells.nih.gov/info/glossary (Accessed on October 22, 2012)
Schwartz, Steven D et al. (2012).Embryonic stem cell trials for macular degeneration: a preliminary report. The Lancet [Internet]. January 23, 2012. DOI:10.1016/S0140-6736(12)60028-2 . Available at: http://download.thelancet.com/flatcontentassets/pdfs/S0140673612600282.pdf (Accessed on October 22, 2012).
Stem Cell Basics (2009). In Stem Cell Information[Internet]. National Institutes of Health, U.S. Department of Health and Human Services. Available at: http://stemcells.nih.gov/info/basics/defaultpage.asp (Accessed on October 22, 2012).
DEBATE: AN OPEN FORUM FOR A SPECTRUM OF PERSPECTIVES
By Subhash Vashishth*
The recent draft put up by the Ministry of Social Justice & Empowerment, Government of India on its website seeking comments from the states appears to be old wine bottled in a new case with a new name. To me, it is more philosophical and less implementable in the courts of law since it doesn’t give a time frame to many of the provisions. It even takes away many of the positive provisions of the existing statute, Persons with Disabilities (Equal Opportunities, Protection of Rights & Full Participation Act 1995 (hereafter referred to as existing Act).
We need to understand that the whole process of ministerial consultations on amendment to the PWD Act 1995 was over when the UNCRPD came into force in 2007, and the whole process got stalled since the disability sector wanted more time to understand the UNCRPD and then suggest changes in the law.
The UNCRPD introduces a paradigm shift in the discourse relating to persons with disabilities which is based on three pillars – the presumption of legal capacity, equality, and dignity for persons with disabilities.
We as lawyers have tried and tested the existing Act in the court of law and have found it extremely helpful in restoring some of the rights of the disabled. We also found many gaps and brought them to the fore during consultations and at various other forums.
The draft RPDB 2012 is significant for having come post-CRPD and post-consultations with the stakeholders; it must, therefore, pass the test of the simple questions below:
- Does the new draft fill up the gaps found in the existing Act and match the aspirations of the stakeholders?
- Does the new Bill, in the light of UNCRPD, recognize that the persons with disabilities are an integral part of human diversity, who enrich it with their vision, experience and creativity and therefore, does it ensure participation of persons with disabilities in society on an equal basis with others?
My observations are:
(a) The existing Act looks at the disabled people as a special vulnerable group for which special protective measures are required, whereas the new draft advocates all human rights to persons with disabilities so that they can live in community on an equal basis with non-disabled members of community which is a welcome move.
(b) Words like “within the economic capacity & development” have been removed which previously allowed the state to be selective.
(c) Sections of persons who got left out, such as people cured of leprosy, persons with mental Illness, intellectual disablement, multiple disabilities, muscular dystrophy, etc. who always got left out have been included in the definitions and in the entitlements of reservation in jobs which is a positive step.
(d) However, it is unreasonable to add persons with autism and intellectual disabilities with persons with mental Illness in one common category, since mental illness (recovered) is a distinct disability from the other two. The act is silent on how it would compensate those who have lived with mental illness for a considerable period. There is a long way ahead since the process of identification of jobs will only happen once the draft takes the shape of a law.
(e) The draft also talks about equal opportunity polices to be adopted by every establishment, however in the age of information technology it would be advisable to also mandatorily have these documents available on the specific website of the establishment; and to have a website must be made mandatory.
(f) It has many positive provisions such as definitions of barrier, widened interpretation of the term ‘establishment’ to include even societies and trusts in its fold; prohibited grounds; public buildings, universal design and discrimination on the basis of disability – all of which were earlier subject to interpretation of courts and authorities.
(g) Guiding principles are the hallmark of the new draft which can come to the rescue of courts, policy makers and implementing authorities in case of doubt.
(h) Legal capacity and equal recognition before the law, introduction of limited guardianship, reproductive rights, access to justice, education, work & employment, creation of grievance redressal mechanisms in establishments, health and insurance, leisure & sporting activities, provisions for high support are welcome provisions.
(i) The duties of the state on accessibility, mobility, ICT, service animals, HRD, certification of disability and registration of institutions have been succinctly included.
(j) Review & revision in identification of posts: Similarly, Section 38 of the draft talks about identification of posts and to review and revise the list of identified posts taking into consideration developments in technology. However, it doesn’t include a condition that specifically makes it possible for the review process to only add further posts and not reduce the posts already identified.
(k) Insurance: Insurance has been an area where the actuaries rule. All their books and views seem to underwrite the life of persons with disabilities as highly risky, vulnerable to accidents and death, though there has never been an empirical study to suggest this thought or belief. The draft talks of comprehensive insurance benefits for the disabled, but it is feared that they may be exposed to higher premiums with less maturity benefits. Actuaries have also traditionally completely denied insurance covers to those with neurological disabilities and underwritten the lives of disabled discriminating even on the basis of whether the disability was from birth or acquired after birth! We had a long battle in the Delhi high court after which the court allowed equal insurance at no extra premium for the PLI [postal life insurance policies run by the Department of Posts]. We hope this discrimination stops with the new provisions of the draft.
(l) Reservation in jobs for persons with disabilities: Prior to the existing Act, almost from 1985, the reservations in jobs – both in recruitment as well as in promotion were allowed to Group C & D. After the existing Act, it stood extended to Group A & B as well, in light of Department of Personnel & Training’s (DoPT) memorandums dated 04 July ’97 & 16 Jan ’98. However, over the years, the government took a stand that it was only meant to clarify for Group C&D and not for Group A & B and put this exclusion in black and white vide a consolidating DoPT’s memo dated 29 Dec 2005, completely going against the mandate of the existing Act. The matter is sub-judice, and it challenges this interpretation of the government.
(m) Reservation in promotion: After the Sixth Pay Commission the Group D posts have been dissolved and Group C are being merged with Group B. In such scenario, the restrictive provision that reservation is only allowed from Group D to C has actually become redundant to persons with disability unless it is extended to all the groups i.e. A & B too.
(n) The current draft thus is a huge disappointment on this front. By making changes in the language it has taken away what was available to the stakeholders in the existing Act. It says “every appropriate government shall reserve, in every establishment under them, not less than 5% of the vacancies meant to be filled by direct recruitment”. Whereas the existing Act says “Every appropriate Government shall appoint in every establishment such percentage of vacancies not less than three per cent for persons or class of persons with disability of which one per cent each shall be reserved for persons suffering from….”
(o) All forms of appointments should be included in the purview of reservation viz. direct and indirect appointments, promotion, vacancies filled by deputation, contractual appointments etc.
(p) Similarly the reservation in all categories i.e. A, B, C & D has not been based on total existing cadre strength and merely on the number of vacancies being filled at a particular point of time. This is very restrictive and they may not bring forth proper representation of PWDs in the government services in next several decades.
(q) The vacancies continue to lapse in favor of non-disabled in the new draft also. This has to be stopped completely. We have seen in our practice that often posts are kept vacant in the garb of not finding a suitable candidate. The employer seems to have no responsibility to fill up the post and no duty is cast on him to fill up the post in the draft. The employer’s role to fill up the post must be widened by arranging Pre-recruitment training/coaching in all forms of employment and then fill up the posts positively.
(r) The draft seems to pardon the defaulting establishments from the purview of the existing Act by not addressing the issue of backlog vacancies. Filling the backlog vacancies in a given timeframe for the period effective from year 1996 for the three disabilities, and for five disabilities from the day of promulgation of the new draft should be specified to form part of draft. [The three categories mentioned in the existing Act are blindness and low vision; hearing impairment; locomotor disability and cerebral palsy. The new Draft Bill proposes, in addition, the categories of autism, intellectual disability and mental illness; and multiple disabilities including deafblindness]
(s) There is no timeframe in the affirmative clauses in the draft. We have seen with our experience that to get a scheme under a section of the existing Act, we had to seek intervention of the court and then only several schemes were notified. Scheme for education in Section 30 is just one example. And we continue to see that despite the Census 2010-11 completed a long time ago, the data related to disability has not yet been released. The draft retains the Special employment exchanges which have been so far dysfunctional. These are simply a drain on the disability budget. It would be advisable to have these included in the general employment exchanges with special facility for the persons with disabilities in areas near their residences. Often special employment exchanges are just one or two in the entire state which put undue burden on the persons with disability to travel far distances to just get registered.
If the draft addresses the above concerns, it can, in my view reflect the aspiration of several disabled people. Otherwise, this would be termed as same old wine in a new bottle and with a new label!
* Subhash Vashishth is a lawyer and a developmental therapist. Currently he consults with Svayam – a Delhi based advocacy organization that works for promoting accessibility in public infrastructure including transportation systems. He is a founder member of the Advocacy Cell of the All India Confederation of the Blind, and co-founder of Dooars Institute for the Disabled in Jalpaiguri, West Bengal.
[Editor’s note: The views expressed in the article are the author’s, and do not necessarily reflect the views of Retina India or its publication, Insight. In this forum, all shades of opinion are carried in the interest of generating an open-minded discussion.]
By Revathi Sampath Kumaran
Across cultures and nations, dogs have long been considered ‘man’s best friend’ and over centuries of domestication they have learnt to understand and respond to human gestures and commands. But I recently came across an intriguing question on Maureen Duffy’s blog: “Does a dog know its owner is blind?” Ms. Duffy, a certified vision rehabilitation therapist and associate editor of the Journal of Visual Impairment and Blindness, herself attributes the question to Dr. Hal Herzog, professor of Psychology at the Western Carolina University. In an interactive radio programme, Dr. Herzog, who has been studying real-world ethical issues and human interactions with other species, was suddenly confronted with this question: “Professor, do you think my dog knows I’m blind?” asked one of the listeners who phoned in. The question stumped Dr. Herzog, who realized that his work over decades had still not prepared him for this question. “First, I fumbled around a little, but then I confessed to the show’s 4.5 million listeners that I didn’t really have clue about what Leo’s dog thought about his owner’s limited visual abilities,” confesses Dr. Herzog in his blog, Animals and Us.
Herzog leads us to the work of Florence Gaunet, a scientist in the University of Provence, France, Cognitive Psychology lab. Dr. Gaunet has been studying canine cognition for many years in order to advance research in the area of neuroscience. In one of her papers, How do guide dogs of blind owners and pet dogs of sighted owners ask their owners for food? based on the findings of a simple experiment designed to compare the behaviour of guide dogs vis-a-vis pet dogs, she concludes that “there is no overall distinction between guide and pet dogs … in their understanding of their owner’s attentional state, i.e. guide dogs do not understand that their owner cannot see (them)”. However, the results of her study also showed that there was a certain amount of “incidental learning” in the case of guide dogs. Over a period of time they made audible licking sounds with their tongues to get their owners’ attention, in addition to gazing at them. This appeared to show that the dogs had learnt, from experience that they could trigger their owners’ response by using the additional audio cue. However, for dogs in general, gazing is the most common social cognition tool in their interaction with humans, and the guide dogs of blind owners gazed at their owners with the same intensity as did the pet dogs of sighted owners; the guide dogs also did not resort to any mouth-licking of their owners or any other device which might lead us to believe that they did indeed understand that their owners could not see.
Gaunet’s findings are in tune with what many scientists have to say, and also with what guide dog users and pet dog owners themselves feel, based on their experience: the dogs may recognize the difference in the responses of non-sighted and sighted persons and appropriately fine-tune their behavior. But it is difficult to say with certainty, at this point of time, whether the dog really ‘knows’ its owner is blind and, further, whether a dog can actually know what blindness in another entails.
RETINA INDIA NEWS:
At its biennial event, InSight 2012, meant for thought leaders & opinion makers in the country, held in Mumbai on November 17, Retina India felicitated five persons from diverse spheres for their exemplary achievements: Dr Milind Vaidya, Dr Sam Taraporewala, Ms Nafisa Buhariwala, Ms Sushmeeta Bubna and Mr Charudatta Jadhav. The many awards they have received reiterate that they are role models not just for people with visual challenges, but for all people. Each of them has drawn on their own personal experiences to make the world a more inclusive place for people with visual challenges.
Dr. Milind Vaidya is a scientist and researcher at the Advanced Centre for Treatment, Research and Education in Cancer, Mumbai. His demanding work schedule as a scientist on the cutting edge of research finds him writing and talking about his work at national and international fora besides guiding doctoral students and taking academic courses for them. In an interview with InSight earlier this year, he had urged visually challenged students to not be afraid of society but to have strong will and let their performance speak (To read the full interview click here).
Dr. Sam Taraporewala is the founder-director of St. Xavier’s Resource Center for the Visually Challenged and is also Associate Professor and Head of the Department of Sociology at the St. Xavier’s College, Mumbai. This center, plays a pivotal role in the lives of visually challenged persons across the country. He has been instrumental in helping a lot of visually challenged students and professionals seeking opportunities, many of whom have gone on and are leading independent, successful & fruitful lives.
Ms Nafisa Buhariwala, Chief Manager of the Foreign Exchange Dept of Central Bank of India in Mumbai, is the only visually challenged foreign exchange person at this senior level in the country, and probably one of the very few globally. Graduating from St Xavier’s College in Mumbai in Economics in 1977, her ambition to study MBA took a back seat due to her deteriorating vision. Starting off as a telephone operator with the Central Bank of India, she cleared the Bankers Exam and was promoted to the Assistant Manager grade, and later to become the Senior Manager and now Chief Manager.
Ms Sushmeeta Bubna is the Founder-Director of Voice Vision, a Computer Training Institute for the blind and low vision people since April 2000. This organization is focused on empowering and educating the visually challenge, as well as acting as a provider of information and facilitator for those who need help. The organization also provides support groups and matrimonial help.
Mr. Charudatta Jadhav is head of innovation strategy in Tata Consultancy Services, Mumbai and the founder and general secretary of All India Chess Federation for The Blind (AICFB). He is also Vice President of International Braille Chess Association, which earlier this year commended AICFB for the “brilliant organization” of its international chess Olympiad, the world’s biggest chess event. (To read the full report of the event in our September 2012 issue, click here.)
Dr. Milind Vaidya said in his interview with InSight, “The major hurdle according to me is lack of confidence in yourself, because of the fear about how others will react to your handicap…It took me a number of years before I could prove myself by giving presentations and publishing papers in international journals … [so] do not be afraid of society. Have a strong will to perform,” This is the spirit that each of the achievers would urge in each of us. Retina India salutes each and every one of them.
During the InSight 2012 event, Retina India also felicitated the top three eye institutions in the country for their exemplary role in working towards reducing blindness in the country.
On behalf of L V Prasad Eye Institutes & Dr GN Rao, Chairman, Prof Balasubramanium & Dr T P Das accept the honor from Mr Ranjit Shahani, Managing Director, Novartis.
Felicitating Araving Eye Care System & Dr Namperumalaswamy, Dr T P Das accepts the honor from Mr Anil Jain, Managing Director, Jain Irrigation.
Sankara Nethralaya & Dr S S Badrinath were felicitated by Dr Indu Shahani, Sheriff of Mumbai. Dr Deepak Garg accepted the honor on his behalf.
Nuance Communications Inc., USA, has released its newest version of ‘TALKS’, a software application for mobile handsets. According to the company’s product literature, ‘TALKS’ converts text displayed on the screen “into highly intelligible speech”. And ‘ZOOMS’ is a “screen magnifier application that runs on phones with the Symbian™ S60 3rd/5th Edition and with the Symbian^3 platform”. Nuance ‘TALKS&ZOOMS’ is intended to make mobile phones more accessible for blind people and for people with low vision by enabling them to navigate through various features such as text messages, e-mails received on phone, contact directories, calendar, caller ID, etc. The latest version of the software, ‘TALKS 5.3’ provides access to e-mail links and attachments, and the ability to explore the “inbox view” with touch, says the company.
COMING UP: FORTHCOMING ARTICLES:
Special Series on Accessibility
- January 2013: Infrastructure & Technology
- February 2013: Education & Employment
- March 2013: Devices, R&D, and more for persons with visual challenges
This publication is brought out by an editorial collective with the help of inputs from several volunteers – from professionals and practitioners to patients and the general public. We would like to acknowledge their support and also that of the several resources available in the public domain that we have drawn upon. In-text attributions have been included wherever appropriate. Ms. Revathi Sampath Kumaran is the current editor of this publication.
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