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Tackling disability

Tuesday, December 04, 2018

India should empower persons with disabilities and ensure inclusiveness and equality, says Ronita Torcato

When we think of persons with disabilities, we generally think of the physically handicapped. Why,  Heaven knows. Perhaps, it has something to do with being in denial or being impervious to  disability, both physical and cognitive, which affects larger numbers of people than we imagine. This includes babies unborn, or during or shortly after birth. Carelessness during forceps deliveries are known to hurt babies grievously resulting in cerebral palsy.

Negative attitudes towards disability can assume a number of different forms. Some  regard disability as an abnormality. Others go to the extent of inflicting violence, prejudice, harassment and abuse, physical and verbal.   All of which results in  low self-esteem, reduced participation and, sometimes, untimely death of the differently abled. Mortality for children with disabilities is as high as 80% in some countries. 

Accepting  karma is one thing but it is a particular hard-heartedness to believe that  disability is punishment for misspent past lives. Which is why this correspondent has the greatest respect for countries like Israel whose homes for the disabled are shining exemplars (I should know, I was a volunteer there) and organisations like ADAPT, the Fellowship of the Physically Handicapped,  the National Society For Equal Opportunities For the Handicapped, and the Cheshire Homes serving  the disabled, the terminally ill and the elderly worldwide.  Bethlehem House at Andheri is the Mumbai branch of the global organisation started by  Leonard Cheshire, a highly decorated Royal Air Force pilot and group captain during the Second World War. The Andheri Cheshire, visited by volunteers from the St Xavier’s College Social Service League for five decades, is  financially strapped and one only has to imagine the condition of those outside the safety nets of such institutions.

The World Health Organisation’s Commission on Social Determinants of Health has suggested that inequality is a major cause of poor health, and hence of disability. As of now, 20% of the world’s poor are disabled. The first ever global report on disability, produced jointly by WHO and the World Bank in 2011, stated that at least 10% of the world's population is living with disabilities worldwide. In many low-income and middle-income countries, only 5-15% of disabled people have access to assistive devices and technology.  So, one may attribute their sad status to paucity of services, apart from the very many obstacles they encounter daily. Only think of natural disasters  and conflict situations  when the disabled are left behind and are first  to die.  Mercifully, responses to the disabled are changing thanks to NGOS  which advocate disability as a human rights issue.

For this year’s International Day of Persons with Disabilities, the UN focused on: Empowering persons with disabilities and ensuring inclusiveness and equality as part of the 2030 Agenda for Sustainable Development which pledges to “leave no one behind”.

Paritosh Pant, an alumnus of the  Institute of Hotel Management at Dadar, employs three persons with disabilities at his self-service eateries at  Kharghar and Vashi, where  “customers are encouraged to use sign language via notice boards”. Both outlets, known as ‘Too Much Drama’ have live barbecue kitchens and Pant offers a 10% discount if patrons are successful in communicating with the employees. He says he was motivated to start the venture after he  realised that “memory and observation skills of the deaf-mute are far superior to ‘normal’ people”.

All things considered, WHO’s disability-inclusive  Millennium Development Goals will serve to implement a number of the substantive Articles of the Convention on the Rights of Persons with Disabilities which reaffirms the need to promote and protect the human rights of the differently abled in all spheres.

Short Takes

  • In this year’s International Day of Persons with Disabilities, the UN focused on empowering them and ensuring inclusiveness.
  • Negative attitudes towards disability can assume a number of different forms.

‘It is important to stop treating them differently’

Dr Sanjith Saseedharan, Head of Intensive Care Unit, S L Raheja Hospital - a Fortis Associate Hospital, Dr Fabian Almeida Consultant Psychiatrist at Fortis Hospital, Kalyan  and Dr Pradeep Mahajan, Regenerative Medicine Researcher respond to some FAQs

How are disabled patients similar to or different from non-disabled patients?

Dr Saseedharan The physical, cognitive and communicative aspects of disability warrants doctors to give more time and support; these patients also seem to be physiologically old for their age, with more vulnerability, complex health and psychosocial problems with inability to cope.

Dr Mahajan Such individuals are not different. Society makes them feel different.They are not intellectually challenged. It is therefore important to stop treating them differently. Instead, ensure that they are given the necessary support, in order to enable them perform their daily activities comfortably. For example, ramps in public transport.

How do their health issues compare with non-disabled patients of the same age?

Dr Saseedharan Differently abled patients have more problems related to mobility, chronic pain, reduced sensation; hence ensuing wounds, cuts, falls and so on., bowel and  bladder problems, skin problems, and complex problems like muscle spasm that do not have easy and quick solutions.

Dr Mahajan As these patients may have limitations in physical activity, they may not be able to exercise regularly to stay healthy. Consequently, in case they acquire any disease, even if it is the common cold, they may have a weakened immune system. Secondly, a balanced diet is an important aspect to stay healthy. However, diet should always be combined with exercises in order to ensure proper distribution of nutrients/fat to the body.

How is the physician different in his/ her approach to disabled patients? What are the special considerations they require?

Dr Almeida Doctors prefer to address such patients as 'differently abled', rather than disabled. A doctor in such situations understands that a more empathetic listening and a more comprehensive history taking, along with the help of care-givers is essential. Giving such a patient hope, inspiration and motivation to tide over their illness and their limitation, is a step in the right direction.

Dr Mahajan Minimally invasive therapies will be more beneficial. These therapies involve lesser extent of surgical incisions, therefore minimal damage to tissues; therefore, faster healing time and recovery. Anesthetic conditions may differ, especially in cases of associated heart or neurological disturbances. These individuals may not be able to take care of themselves following treatment; therefore, additional care must be taken to limit the extent of post-operative complications.

What is the importance of relationships and living conditions for disabled patients? What are the psychosocial problems they may experience?

Dr Almeida Our differently abled patients have their own set of strengths and weaknesses, hence, they do well when they have a good matrix of relationships that fortify them physically and mentally. When their caregivers help them on the road to recovery, with unconditional love and support, the speed and success of the ongoing treatment programme is longer lasting. One of the biggest challenges the differently abled patients face is the difficulty towards an inclusive approach by those around them. The psychosocial dynamics from within the environment have the power to make or break the circle of confidence, courage and positive outcomes for the patient. Criticism, failure, marriage and career are the major areas of concern for the differently abled people.  

Dr Mahajan Disabled individuals do not require sympathy. What is important is to treat them as any normal individual. While they may require help to perform certain daily activities, making them feel crippled or compromised would be unfair. The same holds true for relationships as well.

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