Tuesday, September 25, 2012

DU waives of tuition, hostel fee for disabled students


The Delhi University (DU) has waived off the tuition and hostel fee for students with disabilities. A circular, issued by Deputy Registrar (Academic) Ram Dutt, marked to me, says that the fee paid by such students for the current academic year should be refunded “at the earliest”.


It says, “(Students with physical disabilities) shall be exempted from payment of fees, including examination fee and other university fees, except admission fee, subscription towards Delhi University Students’ Union and identity card fee.”

In another letter to the authorities, Dutt says, “Payment of all fees and charges (except refundable caution fees) and the mess fees” will be exempted for students with physical disabilities living in university hostels.
The circular says the university will pay half of the mess fees for the students.

Colleges have also been told to keep two seats, out of every 100 seats in hostels, for disabled students. This is in addition to the 3-per cent reservation of seats for students with disabilities in hostels, University Registrar Alka Sharma says in a handout.

This year, around 500 students with disabilities have enrolled in various undergraduate courses, the highest so far, although 1,500 undergraduate seats are reserved for them at DU. The decision is likely to benefit around 2,000 students at various undergraduate and postgraduate levels, including MPhil, PhD as well as medical students with disabilities at University College of Medical Sciences (UCMS), Delhi.

Thursday, September 20, 2012

Disability Studies in Medical Education-IJUDH


A paper written by Abha Khetarpal and myself on “Disability Studies in Medical Education” has been published in International Journal of User-Driven Health Care. Read the paper here. Here’s the abstract:

Uncompassionate attitudes of doctors can have adverse impact on the already shattered emotional health of a person with disability. The medical conditions or disabilities are seen in isolation from their daily lives. The quality health care is thus compromised. Disability Studies can increase the understanding of the disabled population. The curriculum offered to medical students has an impact on their learning potential. Medical practice influences social conditions and is also influenced by society. The social background of diseases and their causation must be understood within a holistic framework. Disability studies can bring together various disciplines dealing with human pain, pathology treatment, rehabilitation, and coping skills. Medical students must have comprehensive training about complex human behaviour, ethics, and social justice. They must learn the relationships among disease, distress, and disability. Co-existence of disability studies with medicine can transform medical practice, leading to high quality healthcare. Including Disability Studies in medical curriculum would bring Medical Humanities into classrooms.

Wednesday, September 19, 2012

'Wide Eye Open' exhibition and 'Blind With Camera' workshop


‘Infinite Ability’ is pleased to announce the ‘Wide Eye Open’- an exhibition of photographs by the visually impaired at Alliance Francaise de Delhi. It will be a collection of photographs taken by the visually impaired who were trained in photography since 2006 under the Blind With Camera project of Beyond Sight Foundation, Mumbai. The inaugural special preview will be on Friday 5 October 2012 at 6.30 pm at Galerie Romain Rolland, Alliance Francaise de Delhi, 72 Lodi Estate, New Delhi-110003. Opening of the exhibition will be followed by a brief Choir Concert by the young visually challenged singers trained by the Neemrana music foundation. The exhibition will be open for public viewing from 6th Oct to 18 Oct 2012, 11 am-8 pm (All days including Sunday).

WIDE EYE OPEN occupies the ground “zero” of photography, a subject full of paradox and revelation. It is a collection of photographs taken by the visually impaired who were trained in photography since 2006 under the Blind With Camera project of the Beyond Sight Foundation, Mumbai.

Photographs coming out of the project have been exhibited in several art galleries In India & abroad. This exhibition is not just about the photographs, it offers touch and feel pictures, Braille & large print footnotes and audio descriptions to provide “inclusion” of both visually impaired and sighted visitors.

The Blind With Camera project is the first of its kind in India. It was started by Partho Bhowmick after he came in touch with Evgen Bavcar, one of the world’s most accomplished blind photographers based in Paris.

On the first three days, Infinite Ability, the disability subgroup of Medical Humanities Group of University College of Medical Sciences (UCMS), Delhi will organize a workshop entitled ‘Blind With Camera’. This is an attempt to empower the visually impaired and blind student’s from Delhi University and Saksham NGO from NOIDA. The mission is to create a community where people with visual impairment can learn, participate, enjoy and practice the art of photography.

The vision of ‘Infinite Ability’ is to explore disability through creativity and with Blind With Camera we believe that art by persons with disability is an invaluable form of expressions. We can prove that they have interesting way to perceive and lead life and art “by” all and “for” all can lead to an equitable society. The workshop will be conducted from 10-1 pm on 5-7 Oct 2012 at Alliance fran├žaise de Delhi.

Proceeds from the sale of photographs goes to the visually impaired photographers and for the education of the visually impaired children. Join us to experience the illuminated world of the visually impaired photographers and support them to lead a life of dignity.

Joint Partners: Beyond Sight Foundation, Alliance Francaise de Delhi, Infinite Ability UCMS, EOC Delhi University, Neemrana Music Foundation, Saksham Trust

Related Posts:

They capture the world in their mind’s eye

Tuesday, September 18, 2012

International Conference on Disability, Equality and Accessibility in Bangalore


INDIACSR, India’s largest CSR Network in partnership with Choice International (UK), is organizing an international conference themed “Disability Equality and Accessibility – India in Bangalore on December 2012.

The conference aims to recognize the achievements in Disability Equality in India, whilst analyzing the challenges our country now face. The prime aim is to help incorporating effective Disability Equality practices and barrier free design in all infrastructure developed within corporate, public and voluntary sectors.

The conference will address and analyse disability inequality and barriers to access in India, barrier free infrastructure and designs for inclusive accessibility, disability rights and resources for promoting disability equality, voluntary sector’s contribution to disability equality, Corporate Social Responsibility and its role in achieving disability equality in India etc.

“INDIACSR and Choice International (UK) are bringing together national and international resources to provide an environment for innovation and creativity, through which we aim to initiate change in Disability Equality and Accessibility in India,” said Rusen Kumar, Director, INDIACSR, India’s Largest CSR Network.

“India is growing in many aspects, fast becoming a global player with great potential to develop and influence other countries. There are many changes taking place in relation to Disability Equality in India and around the world; anti-discriminative legislations, ratification of the UN Convention on the Rights of Disabled people (UNCRPD), CSR initiatives, Disability Equality Practices and many more. “ added Rusen Kumar.

 “Imagine a world where people with disabilities and people without disabilities have equal life opportunities; access to mainstream education, employment and career development opportunities, a world where people with disabilities are able to freely access buildings, transport and other services.  This is what we aim for!” said Manoj Soma Sundaram, CEO at Choice International (UK).

“India is making rapid progress in addressing disability equality, over 50% of people with disabilities remain illiterate compared to 35% of the general population. The deep inequalities experienced by disabled people are further exacerbated when combined with existing axes of social difference, such as gender and social status. This shows the greater need for change in attitudes towards, and awareness of disability equality and accessibility.” added “Manoj Soma Sundaram.

Disability Conference-2012 will explore disability equality within Indian businesses and services to gain an understanding of disability equality relating to accessibility, perception of disability and disability legislation in India.

This forum will also create an opportunity for participants to meet and network, share skills, knowledge and experience in Disability Equality and promote the concept of a barrier-free environment in their respective fields. This conference is aimed at people with disabilities and people without disabilities including people from Corporate, SME and othe organizations, government officials, representatives within education, health, transport and other relevant departments; architects, engineers, equality activists, DPOs and NGOs, and anyone else with an interest in disability equality and barrier free designs in India.

Apple iOS 6 offers more access for PwD's

Apple announced at press event yesterday that the newest version of the company’s mobile operating system, iOS 6, will be available for users to download on September 19.

 The new iOS 6 looks to have gotten tons of new integrated features. One new feature that might be overlooked, but certainly deserves some attention, is the new Guided Access mode for iOS devices.

Guided Access is a form of accessibility software for operating system  and its make it easier for people with vision, hearing, learning and mobility disabilities to get the most from their iOS devices. Guided Access helps students with disabilities such as autism remain on task and focused on content. It allows a parent or teacher the ability to have full control of how an iOS device can be used. For example, the home button and all other hardware buttons can be locked, motion sensitivity can be disabled, or a certain portion of the screen can be made inactive toward touch.

VoiceOver, the screen reader for users who are blind and low-vision, is now integrated with Maps, AssistiveTouch, and Zoom.

“And we have some great enhancements for accessibility” said Scott Forstall at Apple press event. The update will be free and available for iOS devices 3GS, iPhone 4, and iPhone 4S; the 4th generation iPod touch; and the 2nd and 3rd generation iPads.


By Aqeel Qureshi GAATES news

Monday, September 17, 2012

Infertility: Why can’t we classify this inability as disability?

Here’s a paper jointly written by Abha Khetarpal (Non-institutional expert, Enabling Unit) and myself (Founder, InfiniteAbility; Coordinator, Enabling Unit) on infertility as disability.

Khetarpal A, Singh S. Infertility: Why can’t we classify this inability as disability? Australas Med J. 2012;5(6):316-321

Disability is a complex phenomenon. It reflects an interaction between features of a persons body and features of the society in which he or she lives. International Classification of Functioning, Disability and Health (ICF), lays stress on the functional as well as the structural problem of a person. All the definitions of disability also include the disorders of the reproductive and endocrine system. So infertility and impotency should also be included in the category of disability. It affects the participation in areas of life and can have a disabling affect on an individual. Like any other disability the couple has to adapt and integrate infertility in their sense of self thus infertility comes as a major life crisis. Medically, infertility, in most cases, is considered to be the result of a physical impairment or a genetic abnormality. Socially, couples are incapable of their reproductive or parental roles. On social level, infertility in most cultures remains associated with social stigma and taboo just like the social model of disability. Couples who are unable to reproduce may be looked down upon due to social stigmatisation. Infertility can lead to divorces and separation leading to a broken family life. Without labelling infertility as a disability, it is difficult for the people to access services and welfare benefits offered by the government. Infertility treatments are highly sophisticated so they are very expensive and are even not covered by insurance and government aid. In the light of all this it becomes imperative to categorise infertility as disability.     

Read the full article here on PubMed Central.

Sunday, September 16, 2012

A Patient’s Journey. Duchenne muscular dystrophy (BMJ)


On occasion of Muscular Dystrophy Day, I am sharing an article published in British Medical Journal.
                                  Photo Credit: Hans-Peter Maser (M.Sc.), Basel, Switzerland

A Patient’s Journey. Duchenne muscular dystrophy.
Spies S, Schipper K, Nollet F, Abma TA.           
BMJ 2010;341:c4364  (Published 7 September 2010)
I was diagnosed with Duchenne muscular dystrophy at the age of 3. My parents were always honest about my disease, but I didn’t really care much about it. As the progression was slow, I gradually began to understand its impact, including the physical restrictions. I’m now severely disabled and have lived much longer than the doctors expected. The loss of opportunities open to me, combined with the fact that I’m still alive, evokes many mixed feelings.

Moving to a residential home

I moved into a residential home when I was about 20 years old. This wasn’t easy. I had to get used to being helped by a succession of professionals. Until then, my mother had been my only carer. The move was also difficult for my mum. She had to trust new, unknown, professional caregivers. It was hard for me, too, since I love my mum and I want her to be happy.

Constant adjustments

I have to adjust repeatedly to changing reality. I used to play wheelchair hockey, but I’m not able to do that any more. I cannot go out without help. My ideas and preferences have also changed. Initially, for example, I resisted when the doctors said I needed artificial respiration during the night. I accepted this for night time, but didn’t want a cannula 24 hours a day. With a cannula I would be totally dependent on others. But when eventually I actually needed respiration 24 hours a day, I agreed. It scared me and at that moment I wished I was dead. It was an enormous step, but my feelings changed over the time. Still, it is hard, every time a new problem occurs.
I need some time to get adjusted to the changes, and medical specialists sometimes go too fast. The operation of the cannula was planned three weeks after the decision, which gave me some time to adjust—but then I was asked to undergo it earlier. Medically that was probably a good decision, but for me it was too sudden. I was upset and thought about cancelling the operation. Afterwards I was happy with the change, but not knowing what’s going to happen is scary.

Fear and dependency

For me, the fear and dependency is the worst. I am totally dependent on others and can’t do anything at all. Were something to go wrong with the cannula, I would be able to survive for only three minutes without artificial respiration, then I would die.
An automatic alarm is set to go off in case of an emergency, or I can use the alarm system myself. It frightens me—does it work? Will the caregivers be in time? Sometimes, the plug for the alarm bell comes out for a little during the night. I can’t use it if this happens, since I’m not able to put it back, so I have to scream. I’m afraid there may come a time when they don’t hear me.
Artificial respiration restricts me. I can’t go out alone, I need somebody to help me in an emergency and to drain off the mucus in my trachea.
Some people with artificial respiration go outside without other people. They ask a passer-by in case of an emergency or if they need help. I don’t do that since I don’t want to be troublesome and I don’t want to take risks. I want somebody to go with me who knows how to respond properly if necessary.
I do not want to be troublesome in my home. I try to remember the answers to my questions and ask for help if I have more questions. Sometimes I lie uncomfortable in bed for hours, because I don’t want to call for help. This is not satisfactory either.

Religion

My religion really helps me. I’m not angry because of my disease but I’m disappointed if things go wrong. I realise that the Lord will support me always. Maybe not immediately, but later on. I realise that He was with me in these difficult moments.
Of course, I wish I could recover, but that does not appear to be a possibility. People in church pray for me and for my recovery. I think it’s really sweet, but for me my disease also has a meaning. It’s not senseless, since I’m now able to show people how privileged they are. My body tells them that being healthy isn’t something to be taken for granted.
I think we should realise that we are all vulnerable. People have to know that they could be disabled the next day without warning. My disease can motivate people to create a good life, to make them realise that life isn’t always easy.

Together but lonely

I have many friends, and they and my family are important to me. Other people sometimes have problems with handling my disability. Because of this, they avoid talking with me and find it difficult to gauge my mood and situation.
Often I don’t want to talk about my disease or express my feelings. I keep my fears, doubts, and questions to myself as I don’t want to make people feel sad. I want it to be cosy. Sometimes this sense of responsibility is tiresome. Then I can’t let it go, which leads to lying awake, thinking about it, at night, and makes me feel sad and angry.

Relations and sexuality

I would like to have a wife, but then I also would long for children, and having children is impossible. I wouldn’t be able to handle situations like being unable to hold my child or for us to play together.
I think my wife shouldn’t have to be responsible for the children and me, and to know that she would end her life alone, without me. That makes me sad. And because of this, I don’t want to marry. But I do have some sexual needs and I don’t know what my religion allows. If I watch a movie, I feel guilty and sad afterwards. My religion supports me, but during these moments it’s difficult. Also, it’s hard seeing friends and family getting married and having children, and realising that I will die without such things.

Empty days and dreams for the future

My days are long and I’m at home most of the time. It’s boring. I watch some DVDs and I surf the internet. I read in the Bible and think about my life and what’s going on in the world. I would like to go to a day activity centre again. This is only possible with a wheelchair taxi and in company with a skilled person. Unfortunately that’s expensive. We’ve had some activities in the living room of our home, which was great. At the moment, the ground floor is being rebuilt to create a real day activity centre. I’m looking forward to visiting it and meeting other people.

The end of my life

I try to enjoy life as much as possible, but for the last few years I have been thinking more and more about the fact that I’ll die early. It makes me sad. I have already lived longer than everybody expected when I was born.
I’m scared about the future and about dying, so I try to focus on the nice things in the future. And even if it’s hard, you have to go on. Sometimes I wish it could be all over, but at such times I can always find a bright spot again.

Helping hands along the way

·         People who support me by asking how they can help me and by asking if I need or want help. Sometimes people have good intentions, but are clumsy in their actions
·         The support of my parents, family, and friends, and of my religion
·         My willpower and persistence and my ability to see the bright side of things again and again
·         Taking responsibility for my own behaviour and my relations with others. We have to care for each other
·         My wish to motivate other people and my drive to teach them something about life. This is the power of giving. By doing this, I can make sense of my illness

A doctor’s perspective

Duchenne muscular dystrophy is a progressive muscle disease affecting boys. The muscles degenerate as a result of defective dystrophin caused by mutations on the X chromosome. The typical course of the disease is delayed motor development that increases. Diagnosis is usually made at around preschool age. As muscle weakness progresses, walking becomes more difficult. Around the age of 12, the boys become wheelchair dependent. Later on, arm and hand functions decrease, and problems with swallowing and speech arise. Respiratory insufficiency in the late teens causes death unless mechanical ventilation is applied. Mechanical ventilation has become a routine part of treatment over recent decades.
Boys with Duchenne muscular dystrophy are confronted with many medical issues as they grow up, such as possible cardiac involvement, the need for scoliosis surgery, side effects of corticosteroids like osteoporosis, and growth retardation. They become increasingly dependent on orthoses and wheelchairs, and on personal help. In childhood the parents are the most important caregivers.
Stefan, a 27 year old man with the disease, has many worries and fears—about his end of life, about the possibility that his ventilator may become defective, and many other issues. He finds it difficult to adjust to changes. Not wanting to be a burden is a common attitude among young people who have always been dependent on others. This hinders the sharing of concerns with caregivers and intimates. They already have to help so much, so Stefan thinks he should not bother them with his troubles. Knowing that feelings are not easily voiced, explicit attention should be given so that people like Stefan have a trusted person they can talk with, preferably someone they are not dependent on.
With prolonged life expectancy, children with Duchenne muscular dystrophy nowadays make the transition into adulthood and often move to specific housing where help is given by professional caregivers. Stefan makes clear that this is not an easy change. Although help is provided, professional caregivers have different routines and opinions, and are not as trusted as the mother. This complaint of differences in behaviour between caregivers is common. Caregivers should act more consistently to accord with the individual’s needs. This should be taught, learnt, and discussed openly with the patient.
Stefan has said that he has a lot of pain; whether this is dealt with adequately is not clear. The problem of pain in Duchenne muscular dystrophy is underestimated by health professionals, and it is conceivable that Stefan will not raise the issue easily.
The risk of treating children and young adults with Duchenne muscular dystrophy is that, with so many medical and rehabilitation issues to deal with in an ongoing chain of events, the person involved may easily be overlooked. Measures are applied by many health professionals, all intended to help (see box). Deciding what needs to be done should be based on guidelines. As the child changes into a young adult with his own opinions, needs, and concerns, health professionals need to change their attitude accordingly, from deciding for the child to listening to the patient and responding to his needs.

What can medical professionals do?

·         Give patients and their relatives enough time to adjust and to get used to the idea of impending changes
·         Give emotional and mental support. Doctors are often too busy with the medical aspects of the disease; they should pay more attention to the whole patient and his emotional wellbeing. Patients need somebody who really listens to them. Living with Duchenne means continuous adaptation and continuous regression—because of this, continuous emotional support is needed
·         Professionals try to find solutions for problems. The solution to a practical problem, like a new alarm system, is not the same as the solution for the underlying emotional difficulties. These emotions cannot be solved with technical or practical solutions, but they also need attention
·         Living with Duchenne evokes many existential questions. Those questions can’t be solved alone or with the help of daily caregivers. Psychosocial support is needed to deal with clients’ questions and emotions
·         Practical support should be attuned to individual needs and wishes
·         The whole family should have support, since Duchenne is difficult for all family members
·         Some patients and family members wrestle with feelings of responsibility. Professionals should be aware of this and should support patients and family members who express responsibilities felt for others