Great things are not done by impulse, but by a series of small things brought together – Vincent Van Gogh

Posts tagged ‘health’

Chikungunya, the ignored pandemic in Bangalore

chikungunyaWhile the rest of the world is focused on Swine flu and India is just recording the first of its confirmed cases, places like Bangalore have another virus that is doing the rounds. Like in pervious years this virus too has the potential to reach pandemic proportions and yet, few, least of all the government are talking about it. Chikungunya is spread through mosquitoes, results in high fever and severe joint pain.

While I hear of more and more cases occurring in my neighborhood, the word is out that the entire locality, which comprises of about 10,000 people, is affected. Yet, I see no spraying, no awareness leaflets, no awareness campaign in the newspapers and the monsoon season in Bangalore has only just begun. Some articles in the media report some 4000 cases but that would be a gross underestimation and statistics of those who report to the local health centre only. But loads of people I know don’t even go to the health centre, many of them take Ayurvedic medicine that can be self prescribed and so an allopathic doctor would not even know of these cases.

the Chikungunya virusSad scenario I should say. Bangalore keeps getting projected as the IT capital of the country, home to all the major IT MNCs in the country and yet the facilities and services are archaic. If the Government cannot guarantee a descent standard of living in its capital city how does it hope to do so for the rest of the State?

Chikungunya is not new, each monsoon season there is an outbreak, should the Government then not have had a well oiled protocol in place, and yet there is no sign of it.

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Are PWDs a Burden to Their Families?

Are PWDs a Burden to Their

Families?

disability In early August 2008 , India witnessed an interesting debate sparked off by a couple in Mumbai who wanted to abort their 6 month old fetus, after doctors reported that the child would be born with a congenital heart condition that would require medical care throughout the child’s life. The parents coming from a middle class family believed they would not be able to afford the constant costs of medical treatment and therefore wanted to terminate the pregnancy.

A prominent news channel then conducted a countrywide online poll to find out how many people though that People with Disabilities (PWDs) are a burden to their families. The ethics of terminating a 6 month pregnancy not withstanding, an astounding 91% of those polled, felt that indeed PWDs were a burden to their families and so obviously, couples should have special rights to abort a fetus with potential disability. A rather strange paradox one should say, for while India is being touted as a ‘developing nation’ with over 8% growth rate and is displaying tremendous potential on all fronts, we seem unconcerned that we lack the infrastructure and the social conscience to allow PWDs to live.

Undoubtedly, in India disability is an expensive affaire. A PWD will require a minimum of twice the amount of income as non disabled person to live a comfortable life, this depending on the type of disability a person has and assuming s/he can earn themselves an income. Probably not a single system in the country, be it health, education, employment, transport or social welfare, is structured to cater to the special needs of PWDs. They thus live on the crumbs, doled out to their miserable lot out of sympathy. Knowing the situation, one can hardly blame unfortunate parents for wanting to spare themselves and their child year upon years of trauma, struggle, anxiety and anguish. Yet, around 2 lakh children are born in India every year with congenital heart diseases and when one thinks of this single incident turning into a trend, one cannot help but dread the consequences in a country the size of India.

Even if we choose not to listen to the pangs of our conscience, we are forced to answers this question. To what extent will we go to sterilize our communities and societies? How many ‘abnormal’, ‘defective’, people are we going to wipe out, wouldn’t those include the people with terminal illnesses, the aged and those with mental illnesses. So the answer for any country obviously does not lie in an abortion.

What we need

All PWDs will tell you that what they need is not sympathy from either the Government or Society, but an opportunity to achieve their true potential. Now this is a rather loaded sentence and means that they should be able to pursue what ever academic option they want, travel around freely, have adequate medical benefits depending on their type of disability, and have adequate social benefits so that their care gives are not left worrying about the future of their ward. What PWDs want is that attitudes towards them not be biased and based on sympathy but one of respect.

Six decades after independence and more than a decade since the passing of The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, PWDs are still striving for an inclusive society, battling day in an out with discriminatory attitudes and open hostility. Little seems to have changed and there is much despair, but can PWDs wish away their problems or throw their hands and give up. They are demanding policies, infrastructure and budgetary allocations. That Governments both State and National make good their promises and implement legislation like The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, which although progressive are paper tigers, and while PWDs still have abundant fight in them, they sincerely hope that people like you, the readers, will vigorously support their cause, so that sometime soon, 91% of this country will come to believe that PWDs are no longer a burden to their families but other human being full of tremendous potential and ambition, and with a natural desire to live.

Are People with Disabilities a Burden to Their Families?

Are PWD a Burden to Their Families?

Early this month the country witnessed an interesting debate sparked off by a couple in Mumbai who wanted to abort their 6 month old fetus, after doctors reported that the child would be born with a congenital heart condition that would require medical care throughout the child’s life. The parents coming from a middle class family believed they would not be able to afford the constant costs of medical treatment and therefore wanted to terminate the pregnancy.

A prominent news channel then conducted a countrywide online poll to find out how many people though that People with Disabilities (PWDs) are a burden to their families. The ethics of terminating a 6 month pregnancy not withstanding, an astounding 91% of those polled, felt that indeed PWDs were a burden to their families and so obviously, couples should have special rights to abort a fetus with potential disability. A rather strange paradox one should say, for while India is being touted as a ‘developing nation’ with over 8% growth rate and is displaying tremendous potential on all fronts, we seem unconcerned that we lack the infrastructure and the social conscience to allow PWDs to live.

Undoubtedly, in India disability is an expensive affaire. A PWD will require a minimum of twice the amount of income as non disabled person to live a comfortable life, this depending on the type of disability a person has and assuming s/he can earn themselves an income. Probably not a single system in the country, be it health, education, employment, transport or social welfare, is structured to cater to the special needs of PWDs. They thus live on the crumbs, doled out to their miserable lot out of sympathy. Knowing the situation, one can hardly blame unfortunate parents for wanting to spare themselves and their child year upon years of trauma, struggle, anxiety and anguish. Yet, around 2 lakh children are born in India every year with congenital heart diseases and when one thinks of this single incident turning into a trend, one cannot  help but dread the consequences in a country the size of India.

Even if we choose not to listen to the pangs of our conscience, we are forced to answers this question. To what extent will we go to sterilize our communities and societies? How many ‘abnormal’, ‘defective’, people are we going to wipe out, wouldn’t those include the people with terminal illnesses, the aged and those with mental illnesses. So the answer for any country obviously does not lie in an abortion.

What we need

All PWDs will tell you that what they need is not sympathy from either the Government or Society, but an opportunity to achieve their true potential. Now this is a rather loaded sentence and means that they should be able to pursue what ever academic option they want, travel around freely, have adequate medical benefits depending on their type of disability, and have adequate social benefits so that their care gives are not left worrying about the future of their ward. What PWDs want is that attitudes towards them not be biased and based on sympathy but one of respect.

Six decades after independence and more than a decade since the passing of The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, PWDs are still striving for an inclusive society, battling day in an out with discriminatory attitudes and open hostility. Little seems to have changed and there is much despair, but can PWDs wish away their problems or throw their hands and give up. They are demanding policies, infrastructure and budgetary allocations. That Governments both State and National make good their promises and implement legislation like The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, which although progressive are paper tigers, and while PWDs still have abundant fight in them, they sincerely hope that people like you, the readers, will vigorously support their cause, so that sometime soon, 91% of this country will come to believe that PWDs are no longer a burden to their families but other human being full of tremendous potential and ambition, and with a natural desire to live.

A little known disability

A little known disability

IN PERSPECTIVE


Muscular dystrophy is a largely unknown disability that needs clinical intervention at an early stage.

While travelling in rural Bangalore, I remember meeting a bright little 12-year-old lad. His mother told me that he was the topper in his class but had to abandon school in the 5th standard. He was too weak to walk to school and back as he had a rather rare disability called muscular dystrophy and the poor mother, who was a daily wage earner, could not spare the time to carry him to school every day.

Muscular Dystrophy (MD) is a largely unknown disability. We do not have exact figures for India but extrapolated data shows that we may have about 1,957 cases in the country and for all its rarity MD is still a disability we should know about.

Hereditary disorder

MD is a hereditary genetic disorder that gradually weakens the muscles of the body. It is caused by the genetic mutation of the X chromosome that leads to an insufficient production of dystrophin, a protein needed to build and maintain healthy muscles. More common in males than females, two thirds of the MD cases inherited the mutation from their mother, while the other one third resulted from a new mutation in the gene.

Once MD sets in, a person will experience progressive muscular wasting, poor balance, frequent falls, calf pain, will walk with a waddling gait, have limited range of movement, experience muscle contractures, difficulty in breathing, curvature of the spine etc. Since MD is a multi system disorder it also affects other parts of the body like the heart, gastrointestinal and nervous systems, endocrine glands, skin, eyes and other organs.
MD can set in at varying times in a person’s life, for some it will begin to manifest itself in infancy, for others in childhood and for still others, symptoms may not appear until their teens or adulthood.

A diagnosis of MD would require a blood test to ascertain the level of creatine kinase in the blood, a genetic test and a muscle biopsy besides others. The prognosis for people with MD varies according to the type and progression of the disability. Some cases may be mild and progress very slowly over a normal lifespan, while for others it may cause severe muscle weakness and functional disability. Some children with MD die in infancy while others live into adulthood with only moderate disability. The muscles affected vary, but can be around the pelvis, shoulder, face or elsewhere.

Since MD has no cure, doctors and physiotherapist will first work to improve muscle and joint function and to slow down muscle deterioration. This will be done through daily physiotherapy. Since MD is degenerative, the person will have to move on to using assistive devices like a wheelchair and other specialised care.

Only few are aware

Because of the low incidence of MD, few people are aware of this disability, which makes many unable to accurately identify early symptoms and begin immediate intervention. This can be detrimental, shortening the life span of the person. While the government invests crores in creating awareness about all types of disabilities, MD must also find a place in these awareness campaigns.

Rehabilitations in the form of constant physiotherapy and assistive devices like a wheelchair is a must for people with MD, besides of course specialised care as the disability progresses. It is a long pending demand of disability rights groups that staff in village level primary health centres be equipped to provide at least basic physiotherapy as private services are available only in urban areas and that too at a considerable cost.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 is due to come up for amendment. The seven disabilities currently listed must be expanded to include disabilities like MD. The Sarva Shiksha Abhayan (SSA) which talks about 100 per cent enrollment and “home based education” must have a constructive plan for children with MD as they should not be left out of the educational system.

(The writer is a member of DisAbilityFirst, an advocacy group working on issues of disability.)

The above article was published in the Bangalore edition of Deccan Herald on 25th June 2008 and is available at the following link http://www.deccanherald.com/Content/Jun252008/editpage2008062475140.asp

Spinal Cord Injury

Spinal Cord Injury

Besides physical and psychological rehabilitation, persons with SCI also need economic independence to lead a dignified life.

It is difficult to hazard a guess on the number of people that exist in India with Spinal Cord Injuries (SCI). However, it could well be somewhere between the Chinese figures of 65 cases per million and the US figures of 35 cases per million. Even if one takes a conservative figure of 40 cases per million, it would still leave us with a sizable 40,000 cases of SCI in India. Yet, SCI is a little acknowledged disability. While it may draw some medical attention; there is scarcely anything offered in terms of comprehensive physio-socio-economic rehabilitation from the government.

SCI is defined as damage or trauma to the spinal cord. This results in a loss or impairment of mobility and sensation. Common causes of damage to the spinal cord are trauma, brought on by accidents — vehicular or alcohol/drug induced, fall from heights, sports related, etc. It can also be caused by diseases such as polio, spina bifida, transverse myelitis and others. A larger number of men suffer from SCI, as they are more exposed to hazardous occupations at construction sites, painting buildings, etc.

Damage to the spinal cord is known as a lesion, and the paralysis is known as quadriplegia or tetraplegia if the injury is in the cervical region or as paraplegia if the injury is in the thoracic, lumbar or sacral region. There are two types of lesions associated with a spinal cord injury; these are known as complete and incomplete injuries. A complete injury means the person is completely paralysed below their lesion. Whereas an incomplete injury, means only part of the spinal cord is damaged.

There are five degrees of disability for those with an incomplete spinal injury, A: complete paralysis, B: sensory function only below the injury level, C: incomplete motor function below injury level, D: fair to good motor function below injury level, E: normal function.

The effects of a SCI manifest themselves in different ways, like reduced ability to regulate heart rate, blood pressure and sweating, loss of upper and lower limb functioning, loss of ability to feel pain and thermal sensation, loss of sexual functioning, loss of bowel and bladder control, spasticity, neuropathic pain, atrophy of muscles, osteoporosis and bone degeneration, gallbladder and renal stones besides others.

Rehabilitation after spinal injury requires a great deal of support and patience, and involves a sizable team of professionals like a neurologist, rehabilitation specialist, physical therapist, occupational therapist, respiratory therapist, social worker, speech therapist, nutritionist, special education teacher, recreation therapist and clinical psychologist.

Post injury, persons with SCI need an extremely supportive and positive environment, besides immediate counseling to come to terms with their injury and to begin the process of recouping. Depending on the severity of the injury, they will also need months of intensive and expensive medical attention. Unfortunately, there is no welfare scheme, that allows people with a SCI to meet the cost of months of hospitalization and specialized care. A person with a SCI will need to re-learn the functioning of his body and be sensitive to signs of urinary infection and pressure sores. A person with SCI will also need immediate physiotherapy to prevent contractures and gain as much mobility as possible. Importantly, they require economic rehabilitation to allow them to live an independent life.

The above article was published in the Bangalore edition of Deccan Herald on the 13th of March 2008 – http://www.deccanherald.com/Content/Mar132008/panorama2008031257023.asp

Let us talk Autism

Let us talk Autism

IN PERSPECTIVE

Part of the answer lies in the educational system adopting a more flexible approach.

These days, children with autism and their parents are an excited lot. Finally through a two hour commercial film they can expect a little more understanding, from their relatives, friends, teachers, peers and associates. A nuanced and compassionate film Taare Zameen Par is already receiving awards for its cinematography. By making this film Aamir Khan has placed in the centre stage yet again the plight of over 70 million people with disabilities in this country and especially the 1.7 million children with autism.

One in approximately 500 children is born autistic in India. Autism impacts the normal development of the brain in the areas of social interaction and communication skills. Children and adults with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. The disorder makes it hard for them to communicate with others and relate to the outside world.

They can also do it

In some cases, aggressive and self-injurious behaviour may be present. Persons with autism may exhibit repeated body movements (hand flapping, rocking), unusual responses to people or attachments to objects and resistance to changes in routines. Individuals may also experience sensitivities in the five senses of sight, hearing, touch, smell and taste. Autism is four times more prevalent in boys than girls and usually occurs during the first three years of life.

However, it is important to remember that through early intervention and productive support from their family, friends and professionals autistic children can live productive lives. Research also indicates that if autistic children are given early intervention in the form of specific and appropriate training methods that are tailored to a child’s needs and learning style, they can reach their maximum potential.

While the disorder is not rare, the majority of autistic children in India do not get diagnosed early or correctly. Infact a search for a diagnosis can send the parents of autistic children onto a road of anguish and waste of scarce economic resources.

The next big challenge faced by parents of autistic children is to find a school that accepts the child and is willing to and knowledgeable enough to cater to the child’s special needs. While the Sarva Shiksha Abhayan launched in 2002 calls for “Inclusive Education” and makes it mandatory for all children between 6 and 14 years of age to be in school, the reality is that children with disabilities (CWDs) are largely ignored in the classroom.

While this may be the situation in government schools, private schools may simply refuse to accept the child. Parents of children with autism are finding that while searching high and low for a school that will meet their child’s educational needs; the teaching fraternity is all but ignorant about autism and the pedagogical requirements for these children.

Role of educators

Thus it is not uncommon to hear of autistic children being frequently punished and labeled as “problem” children. Since autistic children have developmental delay and may be older for the class, they are often rejected during admission into school, as being “not up to the standard of non disabled children and not appropriate for their age”.

Part of the answer to the educational needs of children with autism lies in the educational system adopting a more flexible approach. It is imperative that every school accept CWDs including children with autism, not only because the law says so, but also because a school is a microcosm of society. In school an autistic child learns vital social skills and non disabled children learn to become sensitive to CWDs.

Every educational institution must have at least one special educator. The special educator must design the curriculum for each child with special needs, modifying it to suit the child’s level.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 recognizes autism as a disability however people with autism and their parents need to vociferously fight for their rights using this Act to their advantage. Offices of the National Disabilities Commissioner and State Disabilities Commissioner need to create greater awareness on autism thus saving lakhs of innocent children, horrific experiences that scar them.

The above article was published in the Bangalore edition of Deccan Herald on 18th January 08

http://www.deccanherald.com/Content/Jan182008/editpage2008011747190.asp

Mental Illness as Disability

Mental Illness as Disability

IN PERSPECTIVE

The issue of mental illness needs to be brought to the centre stage.

Worldwide, there are believed to be around 450 million people suffering from mental or behavioural disorders. 14 per cent of all global disease burden is attributed to mental disorders. There is one psychiatrist for 10,000 people in high income countries and one for 2 million people in low income countries.

In India, there are considered to be just 4,000 psychiatrists for the whole country. According to the National Human Rights Report 2000, 20 to 30 million people “appear to need some form of mental health care” and according to the National Commission for Women, five million of these are women. Yet, mental health, either in the form of health policies or budgetary allocations, are no where on the radar of government

Woefully inadequate

When one looks at The Persons with Disabilities (Equal Opportunities, Protection Of Rights and Full Participation) Act, 1995, which does little more than list mental illness as one of the seven disabilities in its definition and The Mental Health Act 1987 (which came into force in 1993) one will realize that they are woefully inadequate with numerous lacunae.

According to The Mental Health Act 1987, a person with mental illness is defined as “a person who is in need of treatment for any mental disorder other than mental retardation”.

The law is silent about emergency care. Any person with a mental illness picked up by the police first needs a reception order from the Judicial Magistrate before being admitted to an institution. According to the Act, there should be one psychiatrist for every ten mentally ill patients and a cured patient cannot be discharged from a hospital except to a guardian.

Thus, patients who have long since been cured continue to languish in mental institutions as family members refuse to accept them back. Many who work with the mentally ill say the Act is biased towards people with mental illness and it speaks little on rehabilitation and post care treatment. What is noticeable is that even while mental stress continues to increase, pushing growing numbers of people like women and youth to the brink of insanity, our mental health institutions continue to remain like virtual jails, austere steel cages where people are not encouraged to socialize and lead normal lives.

The treatment, of the mentally ill is largely medical and does not address the root causes that led to the onset of the illness. Rehabilitation facilities continue to be concentrated in urban areas and the majority of the rural poor resort to quacks and local healers in search of a treatment.

Marginalized issue

Mental illness itself is a highly marginalized issue among the general disability debate even the National Policy for Persons with Disability 2006 makes nothing more than a passing mention of mental illness in some of its sections.
Thus, the issue of mental illness needs to be brought to the centre stage, focused upon and mainstreamed into the general disability debate. The stigma around mental illness also needs to be addressed through a wide spread media campaign that helps people identify mental illness and treat it early.

Children in schools and people in their work place need to be taught to address their mental stress in healthy ways through the presence of psychologist and counselors. Governments need to make appropriate and adequate budgetary allocations to address the growing problem of mental illness.

Many people with a mental illness require medication for the rest of their lives and this medication needs to be provided free of cost for people who are living below the poverty line. There is a need for half way homes where people who have recovered from mental illness can be rehabilitated by learning a vocational skill and from where they can be integrated into their families. These homes will also offer shelter to those not accepted back by their families.

There is also a need for more mental health institutions and with all probability these should be in the form of additional wings in the district hospital rather than segregated hospitals that further stigmatization.

(The author is a founding member of disAbilityFirst, a disability group working on advocacy issues.)

The above article was published in the Bangalore Edition of Deccan Herald on 24th December 2007

http://www.deccanherald.com/Content/Dec242007/editpage2007122342811.asp

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