From Disability Action Plan to Rehab 2030

In July 2019, the "Global Disability Action Plan (GDAP) 2014-2021" of the World Health Organisation (WHO) was replaced by the "Rehab 2030" plan. This post is about the key differences between GDAP and Rehab 2030 and also about my opinions regarding the new plan.

WHO is the health body of the United Nations (UN) and advises national governments on their health policies and programmes. Thus, Rehab 2030 is important because it will influence rehabilitation programmes and services in countries over the next decade.

Global Disability Action Plan (GDAP) 2014-21

The overall goal of the GDAP 2014-21 was "Better health for all persons with disabilities" and it had three objectives:

(1) To remove barriers and improve access to health services and programmes

(2) To strengthen and extend rehabilitation, habilitation, assistive technology, assistance and support services and community-based rehabilitation (CBR)

(3) To strengthen collection of relevant and internationally comparable data on disability and support research on disability and related services

The GDAP 2014-21 was supposed to reach these 3 objectives through human rights based approach, empowerment of persons with disabilities, life-course approach, culturally appropriate person-centred approach, multi-sectoral Community-Based Rehabilitation (CBR) and universal design.

Rehab 2030 Plan

The new plan has a wider view of the rehabilitation services by focusing on functionings which can be limited due to health conditions, environment and by the interaction between these two. It proposes to develop Packages of Rehabilitation Interventions (PRIs) for the following groups of functionings within the next 10 years:

(1) Musculo-skeletal:Low-back pain, neck-pain, fractures
Other injuries
Osteoarthritis, amputation, rheumatoid arthritis

(2) Neurological:Cerebral palsy, brain injury, Alzheimer-dementia, spinal cord injury, Parkinson's disease
Multiple sclerosis, motor neurone disease, Guillain-Barré

(3) Cardio-Vascular Diseases including myocardial infarction and heart failure

(4) Chronic respiratory diseases

(5) Neoplasms

(6) Mental disorders:Schizophrenia
Developmental and intellectual disabilities
Autism spectrum disorders

(7) Sensory Impairments:Hearing loss
Vision loss

Rehab 2030 aims to make these PRIs to be available as part of the Universal Health Coverage at different levels of the health services, as shown in the graphic below.

The lowest level of intervention is that occurring at home and in the community - informal and self-directed rehabilitation. Moving up from below, the other levels of rehabilitation interventions are primary health care, secondary & tertiary health care, community-delivered rehabilitation and specialized high intensity rehabilitation.

Changes from GDAP to Rehab 2030

From Impairments to health conditions: In many ways, the vision of Rehab 2030 is very different from that of GDAP. Till GDAP, the focus was on the effect of impairments. The focus of Rehab 2030 is on the impact of health conditions. This subtle shift, focusing on "health conditions" instead of "impairments caused by the health conditions" opens rehabilitation programmes to the needs of other groups of persons, such as elderly persons, and persons with cardiac and respiratory conditions.

Rehabilitation Interventions: The other significant change from the past is the focus on "rehabilitation interventions". During the late 1980s and early 1990s, the Disability & Rehabilitation team at WHO had decided to focus on the delivery of rehabilitation services at community and primary health care level, leaving aside the issues related to rehabilitation interventions at intermediate and higher levels. However, over the past 20 years, new technologies have introduced a better understanding of health conditions and raised opportunities for their treatment which were not available in the past. WHO needs to provide guidance about these interventions. For example, today some children born with deafness can have cochlear implants and grow up hearing. This change goes in that direction.

Outreach Services: Another significant change is the acknowledgement of a level of rehabilitation services, which was not mentioned in any WHO document over the past many years, the "community-delivered rehabilitation". During our visits to rehabilitation services in different countries, we often came across the rehabilitation staff visiting some peripheral or rural areas to provide rehabilitation in the communities. This was called "outreach rehabilitation services". I remember a few discussions in WHO about the undesirability of these outreach services - they were costly, and often did not have adequate staff. I think that by acknowledging the Outreach services, it accepts an existing reality instead of closing our eyes to it due to ideological beliefs.

Downplaying CBR: The 4th significant change is that it downplays "community-based rehabilitation" (CBR). Instead of CBR, it calls it "informal and self-driven rehabilitation".

CBR did start as informal and self/family driven rehabilitation interventions in 1980s. However, in 1990s, other interventions related to education, livelihood, etc. were added to the CBR mix, which were not rehabilitation interventions. More recently, many organisations involved in CBR programmes have opted for the term "Community-based Inclusive Development" (CBID), which means that perhaps we can go back to using the term CBR only for the rehabilitation intervention activities at community level. Anyway, the new rehab plan rightly limits itself to the health services component of rehabilitation instead of mixing it with CBID and non-health sector interventions. 

Needs for defining community rehab interventions: I also hope that through the PRIs, Rehab 2030 will also look at defining of rehabilitation interventions for "informal and self-driven rehabilitation". During 1990s, WHO had played a crucial role in development of simple manuals on basic rehabilitation interventions, for example, for children with cerebral palsy and persons with spinal cord injury. Today, many countries have CBR as part of their national rehabilitation strategies. It will be useful for them to have updated information on evidence-based basic rehabilitation interventions for use at self-care and community level (though in part, internet is bringing better information, skills and technological support to the communities and families, who can also share their personal experiences with other communities).

Social Model and Rehab 2030

Rehab 2030 hardly ever uses the word "persons with disabilities", because it focuses on "functioning related to health conditions" instead of "impairments". However, persons with disabilities will be one of the biggest group of the users of the rehabilitation interventions and it will be difficult for WHO to not engage with them. The UN Convention on the Rights of Persons with Disabilities (CRPD) and the focus of Sustainable Development Goals on persons with disabilities, make it obligatory for WHO to engage with the DPOs/OPDs. For example, the UN Flagship report on disability which came out earlier this year (2019), also links with rehabilitation and assistive technology services.

During 1980s-90s, the Disabled Peoples' Organisations (DPOs or Organisations of Persons with Disabilities OPDs) came up with the "social model of disability", which was seen in contra-position to the "medical model of disability", implying that medical rehabilitation services were somehow bad or not useful. I personally believe that the two models are complementary - medical model focuses on individuals with impairments and social model, helps us to fight against the barriers created by the society. Both are needed. Rehabilitation interventions in the health services can not be organised through the social model - they are medical interventions and are carried out in line with the way medical/health services are organised.

Persons with stable impairments such as persons who are blind or deaf or those who had a disability in the childhood and are now grown-up, such as persons with cerebral palsy, often complain about "labelling" of their identities with their clinical diagnosis, which creates specific expectations and prejudices among people. However, rehabilitation services cannot provide treatment without a diagnosis. Such issues will continue to be a cause of friction between persons battling for superiority of social model over the medical model of disability. However, persons with disabling progressive health conditions understand the complementarity of the two models of disability in their lives much better.

Final Comments

The famous Alma Ata conference on primary health care (PHC) held in 1977 had proposed "preventive, promotive, curative and rehabilitative care" at the community level. However, in practice, citing lack of resources, PHC was limited to certain key interventions, which had excluded rehabilitation services.

During the 1990s, repeated attempts to promote inclusion of rehabilitation services in PHC had yielded little or no results. Only during the past 10-15 years, some countries have adopted the CBR approach and a few of them have linked it with their PHC services.

Today, in most countries we have persons with disabilities and DPOs/OPDs who are strong advocates for their rights while countries have signed and ratified CRPD. New national disability policies and programmes related to SDGs may also be offering opportunities for promoting rehab services in countries, which were not there in the past.

The increase in ageing populations and chronic life-style conditions, have made it imperative for people to play a greater role in their self-care, while using hospitals and specialized services for acute care and complications. New technologies including internet and mobile phones are playing a role in people's access to information. Rehab 2030 will need to facilitate this transition.

By focusing on funtionings, hopefully the new rehabilitation plan will help us to think of rehabilitation needs in a holistic way.

*****

#rehab2030 #rehabilitationneeds #who_rehab #cbr #personswithdisabilities

Accessible Children's Park in Schio

I had heard about the construction of an accessible children's park in our city Schio. I like going around on my bicycle and I had tried looking for that park a few times, but had not managed to locate it. Finally, yesterday during an evening walk with my wife, we found it.

This post is about this new park of Schio (VI, Italy), which is accessible to both adults and children with disabilities. It is a park for all, no one is excluded.

Right to Play

Article 31 of the U.N. Convention on the Rights of the Child (1989), states that all children have a right to leisure, play, and participation in cultural and artistic activities. Irrespective of country, culture, religion, and social status, all children have always played from prehistoric times. You just need to look at baby animals to understand the importance of play in their growth and well-being. Yet, few persons think about children with disabilities and their right to play. Accessible playing grounds and parks are needed so that they can be children like all the others.

Lack of play opportunities and social interaction with other children hampers the proper development of children with disabilities.

Even adults with disabilities need accessible playgrounds for their children, so that they can accompany their children and play with them like all other parents.

An Accessible Park and Playground

An accessible park and playground does not have stairs or narrow gates at the entrance. If it has stairs, it also has a ramp for the wheel chairs. Inside the park, there are suitable paths for wheel-chairs and crutches and persons with mobility problems. For the blind and low vision persons, the paths are well-marked and easy to see. At the path crossings, to help the blind persons, there are suitable surface marking which they can feel with their walking canes. Where necessary, even inside the park the stairs may be accompanied with ramps. They should have clear sign boards with both icons and texts to explain each play-structure. For blind persons recorded audio messages can also provide information.

Accessible park does not mean that every play-structure will be accessible to all the children with disabilities. There can be specific play-structures for specific groups of children with disabilities, such as the swings for children on wheel-chairs. For the use of some or most play structures, help may be needed from adults or other children, as it happens for children without disabilities. Different age groups of children may also need adult supervision.

Accessible Park in Schio

The park is located in Magre part of Schio, on Via Pio X, next to Banca Alto Vicentino. The park has been partially completed with rides and play structures, while they still need to build the Baskin court (for playing modified basketball, which can be played together by all children including those on wheel chairs or with other disabilities - it was invented in the Italian city of Cremona in 2003). It is supposed to be the biggest accessible parks in the Veneto region.

The park has a ramp for reaching the top of a slide, and each ride/play structure is marked in vivid colours. Each area is made of some soft material which acts like a cushion if you fall down. Some of the rides look strange, not usually seen in play grounds. Many of them have a futuristic look. The next time my grand daughter will come to visit me, I am planning to go back to this park and explore all these rides with her.

The park is not very well known, probably because it is not complete yet and there are no public sign boards to guide people to this place. It would be great if this park can be connected by a bicycle track or a passage to the larger park and cycle track on the other side of Alto Vicentino bank (along Via Campo Sportivo), because then more children can reach here without needing some adult to bring them here on a car.

Conclusions

I think that the idea of making an accessible park is great. City municiple government and Alto Vicentino Bank along with other partners deserve our congratulations for thinking of it.

This visit brought back a memory from Guyana (S. America) of many years ago. I had met two boys, 8-12 years old, both had a genetic muscular dystrophy, which was gradually becoming worse. The older boy was already on a wheel-chair, though he could still manage to climb stairs with difficulty. While I was talking to their grandmother, both the boys had found a slide and immediately climbed up to slide down and play (in the image below). There was no treatment for their condition and both boys were destined to get progressively worse. I remember the desperation of their grandmother and their joy in playing.

When we were visiting the accessible park of Schio, there was a man on a wheel chair with his family while a child on a wheel chair was playing on one of the rides. To see them in the park was the proof that all cities need such places, because we all have persons and children who can't enter playgrounds - they are waiting to come out of their homes and play with others.

*****

#accessibleparks #accessibleplayareas #accessiblesports #schio #italy

The Camels of Genghis Khan

While passing through Ulaanbataar (UB), I had seen a strange sculpture with a row of camels standing in a tiny park in the middle of the road. I wanted to look at them properly and photograph them. However, it was a busy crossing, always full of traffic and clicking a picture of those camels from a moving car was impossible. So one afternoon I decided to walk and search for those camels.

This post is about my walk through the city, searching for those camels in Ulaanbataar (UB), the capital of Mongolia.

Mongolian Hero Genghis Khan

Genghis Khan is the national hero of Mongolia. His statues adorn some of the famous landmarks of the country like the central square of UB in front of the national parliament. They can also be seen in some unlikely places like his giant face designed on the side of a hill overlooking the city. Genghis Khan had led his caravans to conquer the world.

Mongolia is the land of nomadic people with their animals including horses, sheep, goats and camels – in fact Mongolia has 10 times more animals/cattle compared to its human population. So those camels could have been a representation of a Mongolian nomad. Thus, those sculptures could be a representation of the great Khan or of a Mongolian nomad.

Old wall-paintings & The Motorbike Guy

This time, I am staying at Shangri-La hotel on Embassy road in UB. I came out of the hotel and started my walk by going towards left, to the Children’s Palace, while across the road I could see Bayangol hotel, which is one of the historical hotels of UB.

I have been to Mongolia many times for work related to a disability programme. During my first visit to Mongolia in early 1990s, I had stayed in the Bayangol hotel. At that time UB was a completely different city, as Mongolia was just coming out of decades of a communist regime under the Soviet influence. Hardly anyone spoke English, while many persons spoke Russian. There were only a few buildings in this part of UB at that time while the road was narrow and there was no traffic except for a rare car.

This whole area is now completely transformed, full of sky-scrappers. The much wider road is jam-packed with cars. In the nearby Sukhbataar square there is the new parliament building. It is a beautiful place today with wonderful ambience and colourful buildings.

As I started my walk on Embassy road, I saw some beautiful old wall-paintings along the road. Their colours had faded but I could still make out their designs, which seemed to be telling some Buddhist story regarding the killing of some demon. I hope that these can be rennovated.

My first stop was the metallic sculpture of the Motorbike Man, which looks straight out of the Mad Max films, with an alien guy driving an amazing alien looking motorbike. I loved this sculpture placed just outside the Children's Palace. It seems to be the work of an artist called Mr. Santo, born in Thailand, who uses chains, springs, rods, ball bearings, brake bands, gears, and lots of other recycled metal to create art.

Park Place City Marker

I turned left on Chinggis Road (another way of saying Genghis), which is a broad road with never-ending traffic. My next stop was to admire the metallic city-marker of Park Place, showing the distances from UB to major cities of the world, including London, Sydney, Moscow and Beijing.

I have seen similar distance markers in many cities but this was the first time to see a metallic sculpture made for this purpose.

Peace Bridge

Going further south along the Chinggis Road I reached the Peace Bridge which passes above Dund-Gol river and Narnii Road, the bypass road of UB made for avoiding the traffic of the city centre.

The Peace Bridge was built with Chinese help in 1963 and was renovated in 2012. Dund-Gol is a small river, which joins Tuul river to the south of UB. From the Peace Bridge, I could see little water in Dund Gol (literally ‘Middle River’). Fortunately, it seemed relatively free of the trash which such places usually seem to get due to neglect.

The Blue Horses and the Summer Fountain

After crossing the bridge I reached the area around the National Sports Stadium of UB, which is full of shopping areas, restaurants and other modern buildings. In front of the square facing the Nadaam Mall, there was an open space with two beautiful blue horses, made in plastic or some synthetic materials. After the Motorbike Man and Park Place City Distances indicator and these horses, I was really impressed by the quality of public art in UB. It was also good to see that local youth had not tried to deface these art works by writing on them, which is a common problem in most urban places.

The fountains next to the horses, erupted with water suddenly and in unpredictable ways. Children playing between those fountains, were having a lot of fun as it was a warm day and many of them were soaking wet. As usually happens in such situations, a couple of adolescent boys had picked another boy and forced-carried him above one of the erupting fountains, accompanied with a lot of shouting and merry-making. Families sitting around looked at them with tolerant bemusement.

Children's Park

Next to the Nadaam Mall is the only pedestrian crossing bridge over Chenggis road. With so much traffic on this road, it was a safe way for me to cross the road. On the other side, the bridge led to a children's park full of statues of zebras, deer, eagles and tigers, where families were children were visiting. It is almost like a zoo, the only difference was that instead of live animals, it has statues.

It also had a nice fountain with the Blue coloured sculpture of a woman wearing traditional Mongolian dress.

Behind the park, I saw an old building which had a mosaic of a Soviet style of wall-art from the pre-1990s period (in the image below). Most of such buildings are slowly being replaced by new constructions. I wish someone would photograph and keep a record of all such wall-arts as these represent the city history.

Genghis Khan Camel Caravan

Finally, I reached the Camel sculptures in the traffic island marking the point where the north-to-south going Chenggis road meets the east-to-west going Chenggis avenue, which goes towards the international airport. The metal sculptures are called the "Silk Road Complex monument" and are the works of an artist called Dalkh-Ochir.

In 2015 a competition was held to identify sculptures for UB and in that competition 15 sculptures were selected. These have been placed in different parts of UB, including the motorbike man mentioned above.

In the Silk Road sculptures, initially there was only one statue of a Bactrian camel. Now there are 9 Bactrian camels, one dog and a bearded man on a horse, who may represent Genghis Khan or perhaps a Mongolian nomad. According to the GoGo website, "Initially the camel monument complex was named Migration and the idea of camels facing towards the city center has a meaning of inflow of wealth."

I am glad that I had decided to make this walk to look for those camels. They looked absolutely amazing. The sculptures are huge and made with a metallic sheet, and thus can hopefully withstand the harsh Mongolian winter.

I spent some time walking around the sculptures and clicking pictures while the amused locals, waiting for the bus at the bus-stand across the road looked at me.

To Conclude

Just after the Silk Road monument complex crossing, there was the Palace and Museum of Bogd Khan, who was the first king of Mongolia after its independence from China in early twentieth century. However, I was too tired by this time and decided to leave visiting that to another day.

It was a very satisfying walk. It took me a couple of hours, but that was because I was stopping every where to look around and click pictures. If you are in a hurry, you can do it faster. The image below shows another Soviet-era wall-art from a building near the Silk Road complex crossing. I am fascinated by the history hidden in these wall-arts.

UB has some wonderful examples of good quality public art. Though I have been to UB many times, I am not much acquainted with the town except for the area around Gandam monastery. I am glad that this time I could explore a new part of the city.

*****

#mongoliaub #ubmongolia #ulaanbaatar #publicart #genghiskhan

Disturbances of Brain & Mind: The Psychiatry Story

Jeffrey A. Liberman, a professor of psychiatry at Columbia university (USA), has written, “Shrinks – the Untold Story of Psychiatry” (Little Brown and company, 2015). Psychiatry is the branch of medicine which deals with mental illness. It is a poorly understood area, not just for common public but also for some doctors like me. I found the book fascinating and read it in almost one sitting.

In this post, I am going to write about some of the key things I have learned about mental illness and psychiatry from this book.

Mental Illness

Mental illness is unlike any other illness – it is a medical illness (something to do with our body, especially with our brain and its functioning) and it is also an existential illness (something to do with our thoughts, feelings and emotions). Each kind of mental illness is composed of a cluster of symptoms, that may be present in a variable pattern and severity in individual persons.

The 3 most common kinds of mental illnesses are – (1) Psychosis such as schizophrenia (loss of touch with reality, confused thinking, hearing voices or seeing things, having strange beliefs);(2) Depression (feelings of apathy, sadness and uselessness); and, (3) Mania or bipolar disorder (characterised by extreme mood swings).

Personal Experiences

When I studied medicine in the 1970s in India, I found that psychiatry was a little confusing. It had a lot of Freud and his theories about our repressed sexual desires and it had a few medicines for conditions like depression. I could not make any sense out of it and I was sceptical about the explanations of Freud as the causes of mental illness.

During the early 1990s, I started dealing with community-based rehabilitation (CBR) programs and came across two terms - 'mental illness' (strange behaviour) and 'mental disabilities' (such as low IQ and learning ability). In the communities, people used words like 'crazy' and 'idiots' for these two conditions. However, the affected persons found these colloquial terms negative and extremely hurtful. They taught me to use more neutral words such as persons with mental illness or learning disability.

I have also known some persons who define themselves as 'Survivors of Psychiatry', who do not like psychiatry and do not believe in its usefulness. They feel that psychiatry is a kind of conspiracy theory to control people and they say things like – "psychiatric medicines are useless, they are used only to make rich the Big Pharma; they take perfectly normal behaviours and call them illnesses to give them medicines; their drugs and treatments destroy people’s brains."

Negative Reputation of Psychiatry

Lieberman owns up immediately that for this negative reputation, psychiatrists themselves are to be blamed, “There’s good reason that so many people will do everything they can to avoid seeing a psychiatrist. I believe that the only way psychiatrists can demonstrate just how far we have hoisted ourselves from the murk is to first own up to our long history of missteps and share the uncensored story of how we overcame our dubious past ... Psychiatry’s story consists mostly of false starts, extended periods of stagnation, and two steps forward and one step back.”

From the start of the nineteenth century until the start of the twenty-first, each new wave of psychiatric sleuths unearthed new clues—and mistakenly chased shiny red herrings—ending up with radically different conclusions about the basic nature of mental illness, drawing psychiatry into a ceaseless pendulum swing between two seemingly antithetical perspectives on mental illness: the belief that mental illness lies entirely within the mind, and the belief that it lies entirely within the brain. … Psychiatry, on the other hand, has struggled harder than any other medical specialty to provide tangible evidence that the maladies under its charge even exist. As a result, psychiatry has always been susceptible to ideas that are outlandish or downright bizarre; when people are desperate, they are willing to listen to any explanation and source of hope.
The term “psychiatry”—coined by the German physician Johann Christian Reil in 1808—literally means “medical treatment of the soul.” Psychiatry’s beginning is linked to a German named Franz Anton Mesmer in the 18th century, who rejected the common ideas of divine punishments and sins as cause of these disturbances and suggested that they were caused by the blockage of an invisible energy running through magnetic channels in our bodies. He called this energy 'animal magnetism'. Though his ideas about the invisible energy were wrong, but this was the beginning of looking for causes of mental illness inside ourselves.

Over the next 200 years, many other persons such as Benjamin Rush, Julius Wagner-Jauregg, Manfred Sakel, Neil Macleod, Walter Freeman, Melanie Klein and Wilhelm Reich, came up with similar theories about causes of mental illnesses, each of which resulted in its own treatment, which became famous for a period but was actually ineffective. Some of these treatments had mortal side-effects and none of them had any empirical basis.

Theories of Sigmund Freud

The most influential among these theories about causes of mental illnesses were those advanced by Freud (1856-1939) in early 20th century. His most celebrated book was, The Interpretation of Dreams, which explained the role of subconscious mind and its unresolved conflicts, leading to mental illness. Freud divided the mind into different levels of consciousness - 'id' (source of instincts and desires), 'superego' (voice of conscience) and 'ego' (everyday consciousness).

These ideas revolutionised psychiatry and became the dominant way to understand and treat mental illnesses. Like the other theories mentioned earlier, even Freud’s theories did not have any empirical evidence and psychoanalytical approaches helped few, if any, persons with serious mental illnesses.

Freudian treatment required the doctor to remain remote and impersonal. As recently as the 1990s, psychiatrists were still being trained to stay aloof, deflecting a patient’s questions with questions of their own. About Freud, Lieberman writes, “Freud did teach me the invaluable lesson that mental phenomena were not random events; they were determined by processes that could be studied, analysed, and, ultimately, illuminated. Much about Freud and his influence on psychiatry and our society is paradoxical—revealing insights into the human mind while leading psychiatrists down a garden path of unsubstantiated theory.”

New Psychiatry After Second World War

Till 1940s, there was no other way to treat mental illnesses except for Freud’s psychoanalytic approach. The first medicines for treating the three most common mental illnesses were all discovered after the second world war - Chlorpromazine for treating psychosis, Imipramine for treating depression and Lithium Carbonate for treating the bipolar disorder.

The impact of these medicines was dramatic. For example, Lieberman evokes the impact of using chlorpromazine with the following words.

“On January 19, 1952, chlorpromazine was administered to Jacques L., a highly agitated twenty-four-year-old psychotic prone to violence. Following the drug’s intravenous administration, Jacques rapidly settled down and became calm. After three steady weeks on chlorpromazine, Jacques carried out all his normal activities.” It is hard to overstate the epochal nature of Laborit’s discovery. Like a bolt from the blue, here was a medication that could relieve the madness that disabled tens of millions of men and women—souls who had so very often been relegated to permanent institutionalization. Now they could return home and, incredibly, begin to live stable and even purposeful lives.

During 1960s, another researcher-psychiatrist Eric Kandel, showed anatomical changes in brain linked with memory and opened the pathway to the understanding of biological causes of mental illnesses in the brain. During the 20th century, the only way to study brain was through autopsies and brain operations. After Kendel, a large number of biologists, geneticists, neurologists and other scientists, using other innovative technologies such as MRI, started studying brain and its functioning in live persons, providing new insights about mental illnesses.

The 3rd area of big change which initiated in the 1960s and has now become widespread, is to move away from psychoanalysis as suggested by Freud, and replace it with psychotherapies starting with Cognitive Behaviour Therapy (CBT) pioneered by Tim Beck. The unexpected success of CBT opened the door to other kinds of evidence-based psychotherapy such as interpersonal psychotherapy, dialectical behavioral therapy and motivational interviewing.

Future of Psychiatry

Lieberman proposes a pluralistic vision of psychiatry: “Mental illness is not only biological and is not only psychological – it involves both brain and mind in different ways. Treatments include psychotherapy and psycho-pharmaceuticals.” He also lists some of the promising areas of research which should improve the impact of psychiatry in the future - genetics (how certain patterns or networks of genes confer different levels of risk), new diagnostic tests for mental illness (including genetic tests, electrophysiology-tests, serological tests and brain imaging tests), and new developments in psychotherapy based on cognitive neuroscience.

Some researchers are combining psychotherapy with medicines to increase their impact. Drugs that enhance learning and neuroplasticity can increase the effectiveness of psychotherapy and reduce the number of sessions necessary to produce change. For example, cognitive-behavioural therapy (CBT) can be combined with D-cycloserine, which enhances learning by acting on glutamate receptors in the brain, and strengthens the effects of CBT.
Internet-based applications for mobile devices that assist patients with treatment adherence, provide auxiliary therapeutic support, and enable patients to remain in virtual contact with their mental health providers, are another area for the future development.

Conclusions

I loved Liberman’s book because it gave an overview and understanding about mental illnesses and what can be done about them.
Unfortunately, strange ideas about causes of mental illnesses, not based on any empirical evidence, continue to be common even today, attracting big group of followers. Lieberman has written about the current popularity of the ideas of one such person (Daniel Amen) and his propagation of another theory which is not based on any empirical proof. Charismatic persons have always had this power to make people believe in their extravagant ideas and only time shows that their fame was built on a false premise.

The book made me understand that boundaries between what I understood as “mental illness” and “mental disabilities” are porous and dynamic. Even my notions of separating “neurosis” (mental illnesses where persons do not lose touch with reality) and “psychosis” (mental illnesses where persons lose touch with reality) are not very useful categories. Similarly, it is no use looking for the right answer to mental illness in only medicines or only psychotherapy - a pluralistic vision where both medicines and psychotherapy may play a role can be better.

*****

Note: The two images used in this post are from a "dance therapy" session for persons with mental illness in Brazil

#mentalillness #psychiatry #bookreview #historyofpsychiatry

Challenges of Emancipatory Research

Recently I spoke about Emancipatory Disability Research (EDR) in a conference in Italy. This post presents some of the key points from that presentation, with a special focus on challenges of conducting EDR in a rural or peripheral area of a developing country.

This is my 7th article about Emancipatory Research and if you wish to learn more about this research approach, you can check the whole list of the articles.

EDR in Developed and Developing Countries

In 1990 Mike Oliver (1945-2019) proposed the basic idea of Emancipatory Research - A research about disability based on the social model and carried out by persons with disabilities. He suggested that such an approach will provide information which can't be provided by non-disabled researchers.

The university courses on Disability Studies starting in late 1990s, spread the idea of emancipatory research. Thus, most examples of EDR come from developed countries which run courses on disability studies. There are a few examples of EDR conducted by persons from developing countries, studying in the universities in Global North, who did their research in developing countries. Many of these were researches conducted by university-educated individuals with disabilities and involved personal stories or in a few cases, a small number of persons with disabilities.

On the other hand, the model of EDR developed in the AIFO projects in developing countries over the last 10 years, is different. Here the research is carried out in collaboration with the local Disabled People’s Organisations (DPOs), while persons with disabilities from communities are given a short training and become the researchers. Their research has a collective approach and it focuses on the main barriers they face in their lives. A process of information collection followed by reflections and collective discussions are essential parts of these EDR initiatives. I like to think of these as the Freirian model of EDR, since it seems to reflect the ideas of Brazilian Pedagogist Paulo Freire.

All my discussions in this paper are based on my experience in EDR in developing countries in the AIFO Projects.

Freirian Model of EDR

I think that before proceeding further, it will be important to understand the general process of EDR implementation in AIFO projects:

(1) It is a part of an on-going community programme. The programme staff plays a key role in initiating discussions with DPOs and other stake-holders about conducting EDR.

(2) DPOs and community organisations such as Self-Help Groups (SHGs) are used to identify persons with disabilities who will be trained, who will become the researchers and carry out the research.

Depending on the country, local context and the activities of the community programmes, the researchers can be persons with different education levels (including illiterate persons), men and women, of different age groups, with all the different kinds of disabilities and different severity of disabilities.

(3) A group of persons with different kinds of expertise are also identified to create a Technical Advisory Group (TAG), which supports the researchers by helping to plan the research and providing feedback about the research process. This group includes academic researchers and disability experts.

(4) The researchers are provided a brief training (mostly 4-5 days), focusing on examining the different possible causes of a problem, the concept of barriers and the social model of disability, how to conduct interviews, how to carry out accessibility audit, basics of ethics, privacy and bias, and how to prepare a report. The final session of the training helps them to discuss and identify the problems about which they would like to conduct their research.

(5) A research plan is made and a calendar of activities is prepared with the support of the Programme staff. Researchers visit their communities, interview authorities, service providers and other disabled persons to collect information about their selected problem.

They meet periodically to share all the information collected about a problem and reflect on their findings. Sometimes they invite other persons as guests to these meetings. They also think about and discuss the possible solutions and strategies to address those problems, including what they can do themselves, what can be done at community level and what can be done by the DPOs.

(6) The research may last at least a few months, more usually a year or even more. All their meeting reports including their findings, reflections and suggestions are reviewed by the programme staff, DPOs and TAG members, who can provide feedback, additional information and comments.

(7) As mentioned above, the process of enquiries, discussions and collective reflection on specific issues is similar to the principles of Freirian Praxis as used in Participatory Action Research (PAR). Often, during this process, the researchers along with other persons with disabilities in the communities and with DPOs, can initiate specific activities to respond to the needs they have identified.

(8) The whole process is accompanied by a reporter, a person who documents all the findings, discussions and follow-up activities.
Challenges of Freirian model of EDR

Over the past 10 years, I have been involved in 6 EDR projects in AIFO projects (2 in India, one each in Palestine, Italy, Liberia and Mongolia).

Challenges of EDR

Some of the key challenges of these researches in my experience have been the following:

Involving persons with specific disabilities as researchers: The EDR process promotes empowerment of disabled persons who are involved as researchers. However, not all persons benefit equally. Some persons, who are very shy and lack self-confidence, they require a lot of effort and support in the beginning and often other researchers get impatient with them and ask to replace them.

Persons with specific disabilities such as deaf persons, persons with cerebral palsy, persons with intellectual disabilities, persons with mental illness, and persons with leprosy, are usually excluded from EDR. Usually they are not so active in DPOs. Both DPO staff and Programme staff, may think that it will not be easy to work with them. Thus, they are often excluded and it requires persistent dialogue with DPOs, staff and other disabled persons to convince them about their inclusion.

Participation of women is another key issue. Even DPOs which have strong women leaders in top positions, are not able to convince communities to select disabled women as researchers. Even when selected, often men dominate the discussions and when women speak, the men may laugh or make comments. It requires continuous dialogue with researchers to make them aware about these biases.

Unrealistic expectations from the research: Some times DPOs and Programme staff have completely unrealistic expectations from the research. After 4-5 days of training, they think that researchers can do all kinds of qualitative and quantitative research. They may have little patience in supporting researchers who have difficulties in articulation or who are slow in understanding. Sometimes they expect specific kinds of written reports from researchers and can be too severe in their criticisms.

NGO programme staff can also be dominating and interfering in the research process, imposing their ideas on the researchers.

Limited Support of TAG experts: Most of the time, persons invited to become part of the Technical Advisory Group (TAG) of experts of an EDR are busy persons with a lot of responsibilities. Unless invited to a specific EDR activity to conduct training or provide advice, they may not have the time to read EDR reports and provide feedback and advice to the researchers. At the end, it is important to ensure that at least 1-2 persons with good research experience follow and support the whole EDR process, while the specific support from the remaining expert members of TAG needs to be negotiated.

Reporter: The person selected to write all the EDR reports is the interface between researchers and the rest of the Programme team and TAG members. Having a capable person in this role, can be the most important factor in ensuring success of EDR. The person should be articulate and computer literate.

We have tried with both kinds of persons in this role - person with disability as well as, a non-disabled person. Both can be a support or a hindrance to the process.

A disabled person as a reporter can be too anchored to his/her own disability experience and thus become an obstacle to free discussions in the group. Specific disabilities may limit his/her interaction with other researchers. Having fixed ideas about what should or should not be done about specific disability issues, can also block open discussions in the group.

A mature person who is self-secure and does not need to dominate others, who can raise question gently, and facilitate constructive and open discussions which are inclusive of all the researchers, is needed for this role.

Language issues: In rural areas where EDR is carried out, often persons with limited education can only speak and understand local dialects. Reporter and programme staff may not understand these languages. Even researchers who can understand these languages, may not be able to translate all the ideas and concepts in to the official language. Thus, often important information can be lost in the translation and may not be a part of the official research reports.

Community activities: Many discussions and at least part of the activities stimulated by the EDR process take place in communities and small groups, outside the formal meetings. Researchers may not understand the importance of bringing all this news and information to the reporter.

Difficulties Related to Formal meetings - these have pre-decided agendas and limited time. In these meetings, there may not be enough time to share general information about what is happening alongside the research process. Even when researchers bring this information, the reporter may not see its relevance.

Thus, many collateral developments related to EDR are ignored in the official reports.

Measuring Empowerment: A key goal of EDR is to promote empowerment of the disabled persons participating in the research. While there is a lot of anecdotal information about how the researchers and other disabled persons feel empowered in this process, there is no standardised way to measure the change in empowerment of individuals. While there are some attempts to measurement of empowerment (such as by the World Bank), these are not practical for use in the context of EDR.

Conclusions

The Freirian Model of EDR needs more reflection and understanding. If similar models are being tried anywhere in the world, it will be good to exchange information with them.

EDR can not answer all kinds of research questions. It can play an important role in understanding how local contexts and cultures, including lack of proper infrastructure and lack of services, influence the barriers faced by persons with disabilities in developing countries. These experiences of EDR can provide a richness of details about people’s lives and about the solutions they find to overcome their barriers, that may be difficult to get with any other research approach.

There is still a lot about the Freirian model of EDR, which needs to be understood and defined.

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Secularism & Inter-Religious Harmony

A few months ago, I was in Kochi in south India, where I met a guy involved in a project of cultural mapping of Fort Kochi, which looked at how people from different parts of India, as well as persons coming from other countries had settled here over a period of centuries. It mapped their residential areas, heritage sites and worship places. It was a very interesting discussion.

Afterwards, thinking about that discussion made me ask myself – 

(1) What kind of norms and rules they had in ancient India which guided the settling-down of different outside communities, to ensure harmony with the pre-existing communities already living there?

(2) Another question in my mind was – how were those old Indian norms and rules different from the ideas of secularism today?

My questions reflected the situation in Europe, where we are seeing a kind of popular backlash against immigrants and refugees. Thus, I was asking myself, can there be something we can learn from the experiences of inter-religious harmony in India?

This post is a reflection on the theme of secularism and inter-religious harmony.

Ideas of Inter-Religious Harmony & Secularism

There are some fundamental differences between the concepts of inter-religious harmony and secularism. Inter-religious harmony is about how different groups live together while secularism is a state policy. However, the two concepts are inter-related and influence each other.

Experiences of inter-religious harmony depend upon how the different groups co-exist together in the community. The old proverb, "Live in Rome like the Romans do", indicated the ideals about inter-religious harmony in the west. We don't have similar proverbs in India, becaue it was and is guided by philosophies that accepts a diversity of beliefs.

The western ideas of secularism were defined at the time of theocratic state, when the Christian church held both the state and the religious powers. Secularism's goal was to separate the religious powers from the state powers. However, today most discussions about secularism are about how the Governments deal with and treat persons of different cultures & religions among their populations. These ideas developed in the West, are today seen as universal by a lot of persons, also in India.

I feel that these two ways of thinking, the traditional ideas in India and pagan cultures about inter-religious harmony and those of the secularism, are different though we do not have a clear understanding about those differences. For example, I think that the ideas of secularism are idealistic, they are about how progressive persons would like to see multi-religious societies and are focused more on safeguarding the rights of minorities, which are seen as weak and oppressed. On the other hand, the ideas of inter-religious harmony are more pragmatic and focus on a balance of powers between the groups, in which the majorities often dominate but are respectful of the minorities.

I also think that today most well-educated persons including academics, thinkers, writers and progressives, look at events in our societies mainly through the prism of secularism. On the other hand, most ordinary persons, continue to use the lens of inter-religious harmony. In the communities, there can be a mismatch between the two.

Understanding the Norms of Inter-Religious Harmony in India

The first Christian and Jew Communities came and settled near the coastal areas of south India about 2000 years ago. When Islam arrived in the middle-east, other migrants like Parsi, Baha'i and Armenians arrived in India. Over the centuries, different waves of immigrants from India and abroad also arrived and settled here. Most of these communities prospered and with time, their numbers increased. Till a couple of decades ago, this was a dominant narrative about India, which accepted that the Indic religions were open to people of other religions and welcomed them.

During the recent years, gradually the openess and welcoming of Indic religions has been replaced with dominent narratives about "militant and violent Hinduism", especially in relation to the relations with Muslims. I think that this change in narratives does not express a real change about the way Indic religions look at different religions but has other origins.

I believe that it will be useful to understand the different ways in which the Indic religions dealt with refugees arriving in India, who belonged to other religions.

For example - what kind of rules were made by the local kings to accept the persons belonging to different cultural and religious communities, to ensure religious harmony? What do accounts of foreign visitors to India over the centuries tell us about this theme?

How are those older norms and rules, similar to and different from the ideas of secularism dominant today? I searched online but, apart from some generic mentions of Ashoka’s edict and Akbar’s rule, I could not find any academic papers or research work that looked at and analysed the older norms and rules to foster inter-religious harmony in India.

Learning from Personal Experiences of Religious Harmony

I grew up in a multi-religious environment with the idea that our religions were an opportunity to have fun and enjoy the different customs & festivals. On Eid day, our Muslim neighbours prepared sweet sewaiyan (vermicelli) and brought to us, just like on Deewali and Holi, we shared our sweets with them. On the Christmas eve, I accompanied a friend to the mid-night mass in the cathedral, while he was equally enthusiastic about playing with the colours of Holi. On the Gurupurab day, all of us woke up early to get a glass of Kachi lassi from the processions of the Sikhs.

From those experiences what lessons I can draw regarding inter-religious harmony? I think that the first lesson would be that we can have our own religious beliefs but we must have equal respect for other people to have different beliefs - thus reciprocal or mutual respect is fundamental in ensuring harmony. One sided respect, expecting others to respect your ideas and insisting that only your ideas are correct and must be applied universally does not lead to harmony. This mutual respect should be explicit - for example, it can be expressed by participating in each other's special moments such as festivals.

There are only a few countries in the world which have long histories of multi-religious societies. India is one of them where today the religious minorities are made of more than 150 million persons. Jerusalem is another city that comes to mind, which has a significant population of persons of different religions, though it has faced much greater religious strife.

The Ideas of Secularism

I think that secularism is interpreted very differently from the ideas of religious harmony that I had learned. Often, it means special protection of minorities.

I find some ideas of secularism a little problematic. For example, many believe that secularism means recognising that we all belong to different religions and we should take care to not to offend the persons of other religions by talking about our religious customs and festivals. So, you are not supposed to say “Happy Christmas” to non-Christians or “Eid Mubarak” to non-Muslims. You are not supposed to have Christmas trees in public places and are supposed to make only generic greetings like “Seasons’ greetings” to persons of other religions. I think that this way of thinking, it says that my religious identity is fragile and can be easily offended if any ideas of other religions come near me.

I think that a part of the populist backlash is because of the way some such secularist ideas have been perceived by people. Often when someone does not agree with any of these ideas, there are no spaces for dialogue and discussion as these persons insist that the only acceptable way to live is their way.

I don’t think that the cultural and religious majorities can be silenced by impositions, especially if they perceive them as unjust. Rather, it is a recipe for building rage, which can also explode in backlashes and violence. A process of open dialogue and debates around norms for inter-religious harmony are needed.

Personally, I also feel that we need to study the explicit and implicit traditional norms and rules of communities which govern co-existence of persons of different cultures and religions. It is possible that some of these norms and rules would be discriminatory, and there needs to be a discussion about them with communities. Using secularism as an ideology for protection of minorities can be imposed by law but it will not lead to inter-religious harmony.

Conclusions

I have to confess that my ideas on this subject are not very clear. This post is my way of starting a personal reflection on this theme. They are very much influenced by my growing up surrounded by persons of different religions in India, while the secular concerns dominating many of the discussions seem to me like playing games of identity-victimhood.

The ideas of secularism are relatively new while for centuries people of different cultures and religions have inter-mingled and lived together. India has many examples of inter-religious harmony going back to hundreds of years. We should not ignore the lessons from those experiences. Secularism should not become a way to protect the fundamentalist and ortodox ideas of some.

I believe that there is a need for serious studies to understand the kind of strategies used in different epochs in India and in other parts of the world, that allowed long periods of inter-religious harmony and compare them with the modern ideas of secularism, to look at their differences, similarities, challenges and advantages. Such a critical dialogue will be critical for mixing of people in the globalised world.

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Note: The pictures used with this post are from an exhibition of globes in old Jerusalem, a place where Jews, Christians, Muslims and Baha'i have their holy land and where inter-religious harmony faces a lot of challenges.

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#interreligiousharmony #secularism #india #jerusalem #secularism 

Cities of Art & Colour

This post is about cities that have decided to use art and colours to give a specific character to their residential areas and at the same time, improve quality of lives of its residents and have more visitors.

In this post I have chosen 3 cities from Italy (Dozza, Caorle and Burano), 1 city from Greece (Mykonos), 2 cities from India (Lodhi Colony/Delhi and Fort Kochi) and 1 city from USA (Santa Fe/New Mexico) - as cities that have made an interesting use of colours and art in the city life. Let me start with Santa Fe.

Santa Fe – USA

Santa Fe in New Mexico is a beautiful city with some amazing museums. With its typical houses built with adobe, you can breathe art in its air. The reason why I have included it in this post is because of a place called Canyon street, which is less than 1 mile long and has about 100 art galleries and artists’ studios.

Here, you can see open air installations, sculptures, paintings, and all kinds of artistic expressions in all the possible styles, from modern and post-modern to abstract, figurative, conceptual, material, western and traditional Amerindian.

Apart from Canyon street, even the city centre has some wonderful art galleries. If you go out in the surroundings, you can discover other artists’ studios and art galleries. We had an amazing time in a small village called Truchas, where the owner of the Hand Arts gallery, William A. Franke, accompanied us in a discovery of the works of some local artists like William Maxon.

Yet, every time I think of Santa Fe, I remember the afternoon spent walking from one art gallery to another on the Canyon Street, feeling drunk with the beauty of all the different art works.

Fort Kochi – India

Fort Kochi is a small island connected to Kochi-Ernakulam towns on the mainland in Kerala in south of India. Centre of the spice trade with communities from different parts of India settling here since ancient times, from 17th to 20th century, this place was under Dutch, Portuguese and British rules. Thus, the tiny and densely populated island is dotted with streets and buildings that show a mixing of traditional with the different colonial influences. With the decline in its importance as a trading centre, many of the old colonial buildings are abandoned, leading to a characteristic ambience where memories, nostalgia and decay intermingle with lush tropical greens and blue of the sea.

For past couple of decades, Fort Kochi was one of the haunts of the European tourists, who came to stay here in the old houses converted into simple bed-n-breakfast places. In 2012, the first art biennale was held here. In the past 6-7 years, the Biennale has transformed the sleepy island, as every two years, for 3 months, many of its old buildings and abandoned warehouses are taken over as sites of art installations.

I have visited the art biennale in Kochi twice and every time I come back with amazing memories of some great art works that have an extra dimension to them because they are scattered among the decaying and abandoned old buildings and warehouses.

In Fort Kochi, the sea, the lush vegetation, the memories, the history and the nostalgia, are all one with the art. However, its success may lead to its undoing. As Fort Kochi attracts more visitors, the old colonial houses are being replaced by multi-story concrete buildings.

Earlier this year, I was sad to see many changes - the old vegetarian restaurant near the bus stand replaced by a swanky juice and burger joint, the quaint place where I had stayed a few years ago now had a new multi-story building and the bus service which connected Fort Kochi to Munnar had been cancelled. I am keeping my fingers crossed but to be honest, I am worried that soon much of the central part of old Fort Kochi will be gone forever.

Mykonos, Greece

Mykonos in the Aegean Sea off the Greek coast is the second island in my list. It is also the only one where the dominant colour is white, which gives its characteristic ambience.

This island was already a holiday destination in the pre-second World war period. However, it became famous as a tourist hotspot of the rich and famous in 1960-70s. Traditionally, the houses here were always painted white to protect them from the harsh sunlight.

The white houses of Mykonos with their blue window shutters and church domes make for a striking effect.

Burano, Italy

Burano is the third and last island on my list – actually it is a group of 4 interconnected islands, part of Venice town in the north-east of Italy. It was famous for its delicate crocheted lace.

Burano is also famous for its houses painted in all the colours of the rainbow. Its narrow venetian streets, reflected in the waters of the canals, make for incredibly picturesque views.

While looking for the history of Burano, I found that its houses have been painted like this in different colours since old times. The place is magical and if you are visiting Venice, do not miss visiting Burano.

Caorle – Italy

From the islands, now we move to the seaside. The tiny town of Caorle, north of Venice, also has brightly painted colourful houses just like Burano, but that is not why I have included it in my list.

Its link to the art is in boulders that line part of its seaside. Every year, the city invites some sculptors to carve a sculpture on a boulder (image below).

In this way, a walk on the path close to the boulders, becomes an opportunity to admire open-air sculptures of artists from around the world.

The last two cities in this list are examples of urban street art projects.

Lodhi Colony, Delhi, India

Lodhi Colony is a residential area in central Delhi, close to some urban land marks that are well known to the tourists including the Lodhi Gardens, India Habitat Centre and Safdarjung tomb. Using the walls of this residential colony to make street art by well known artists from around the world started in 2014.

The third edition of Lodhi Street Art festival, during which artists from India and other countries were invited to make new street art was completed recently in 2019.

I feel that the beautiful colours and the different artistic styles have transformed this drab and monotonous looking area into something more vibrant and joyful. Walking around the streets of Lodhi Colony, you can see an open-air art exhibition.

Let me share a local secret - if you are visiting the Lodhi Street Art project, keep your eyes open for the street vendor next to a park in Block 10. It is usually crowded with visitors – this is Chidambaram’s Dosa place, one of the best places in Delhi to get south Indian food. There is no place to sit and it may not look very impressive, but the food will have you licking your fingers and it costs little.

Dozza – Italy

The tiny medieval town of Dozza located on a hill, not very far from Bologna in northern Italy, was one of the first towns to use street art to bring visitors. After the second world war, young persons from small towns had started migrating to the nearby bigger cities and medieval towns were often left with elderly persons. In the 1970s, the town decided to invite every year a few artists from Italy and other countries to come and paint on the houses of the old walled city.

Dozza has a little medieval castle and is surrounded by gently rolling hills covered with vineyards. This is the area of San Giovese wines. Visitors coming to the see the painted town can also visit the castle, buy local wines and perhaps eat at one of the characteristic restaurants.

While Dozza is beautiful, its limitation is that the old walled city is small and almost all its houses are already covered with paintings. Unless the paintings keep on renovating, I guess local persons from surrounding areas may not come here frequently. Fortunately, the smaller towns located around big cities have had a renaissance – young people who had migrated to bigger cities, are coming back because of higher quality of life in smaller towns.

Conclusions

I hope that you have had as much fun reading about the cities of colour and art as I had in writing this post. It gave me an opportunity to think back to some travels, go through old pictures and relive the joys of those journeys.

I believe that as countries around the world reduce poverty and develop, and the coming 4th industrial revolution based on artificial intelligence, nanotechnologies and biotechnologies takes off, increasingly we are going to look at places which offer better quality of life – less pollution, historical roots, natural beauty and cultural opportunities. Cities which choose colours and art, add an extra dimension of joy to our lives.

As the cities I have chosen for this post show, it is not enough to have one innovative idea, but you need to nurture it and keep on innovating. At the same time, when tourists do come, we need to make sure that the essential characteristics and heritage of our cities are not destroyed because of commercial greed.

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#urbanrenewal #citiesofcolour #citiesofart #usa #italy #greece #india #kochibiennale #dozzaitaly #santafeusa #mykonosgreece #lodhicolonystreetart