Disabled and the Church

This is a guest post by Ms. Sheron Mathew, Physiotherapist at NJH. She gives a brief description of an initiative we had with a local Catholic church in mobilizing support for parents of children with intellectual disabilities. 

Community Based Rehabilitation (CBR) project, has been working in Barwadih block, Latehar district for more than 2 years. CBR project mainly works on improving the quality of life of the Person with Disabilties (PWD), also with the stakeholders of the PWDs, which inlcudes family, local community and otherother people who are related to the PWDs.

Our networking with the Catholic Church at Barwadih helped the project to reach out to the community in many ways.  Catholic Church has been ministering among the people there for a really long time, by providing spiritual counselling, education and basic medical facilities and these had ultimately ended up with the church developing a good rapport with the local community they serve. 

With the help of Fr. Siby, CMF, vicar of the Catholic Church, Barwadih, we was able to do programme for children with intellectual disability in Gandhi Ashram, Barwadih on 11^th October, 2014. When such programmes are organized, there are always major issues such as the lack of interest of the caregivers and the lack of the reach of information to those who need it. In this programme, the church played its vital role in mobilising the community as well as opening it’s doors for the children and their parents.

The turnout was really amazing. Screening was supposed to start by 8:30 in the Gandhi Ashram premises, but there were people who had already been waiting since early morning.  The project provided them with our services for free consultation for the children with disability. A total of 17 children and parents had come for the programme. Most of the children were having Cerebral Palsy or some other development delay.   Along with the screening, information was also provided to the parents on some basic exercise for their development and other necessary tips on how to take care of their child. There was also a discussion with parents on the possible levels to which their children can develop. Most of the children were below 8 years. It was really sad to see that few of them had spent a lot of money for  treatment and diagnosis, and most of the parents weren't informed about the nature of the disability in their child and their condition and what they should do and what they can expect their children to do. There were also parents who had started some therapy for their child in the beginning but later they had had stopped because they couldn't see much improvement instantly. 

After the screening of all children, the CBR team had a small discussion with the caregivers on how the project could intervene with the caregivers and their children. By proper facilitation, it was suggested by the caregiver that if the project could facilitate the availability of physiotherapist once a month, they could come together and learn from each other and ensure that they can do the maximum possible for their child in the available circumstances.

Our Co-ordinator, Satyaprakash interacting with the parents

It was encouraging to see that though the parents were sad about the condition of their children they had a smile on their face when they left. We are encouraged by the kindness of the priests and sisters at Catholic Ashram, especially Fr. Siby, the vicar of the local parish. He arranged lunch for all the people who came as well as expressed willingness to open the parish hall for use by these children with intellectual disabilities as well as their parents whenever they need it.

This program was a great learning for each of us as we learnt of a major avenue through which the church can reach out to an unreached group in the local community – children with intellectual disabilities and their parents. This is all the more significant in places such as ours where there are no facilities where such children and their caregivers can get help or support. I’m sure there are quite a number of churches who can learn from our experience.

Maybe, you can very well do things similar to what the Community Based Rehabilitation team at NJH are doing through the local churches. The next meeting at Catholic Ashram, Barwadih is on Saturday, the 15^th November, 2014. 

Giving hope . . .

The 10^th of September, 2014 is going to be a day to remember for our family. My dad celebrated his 67^th birthday. As a family, we took the decision to stay on in the Palamu region for the timing being. After I had to leave NJH, it has been one decision at a time. There were apprehensions of safety, about working in a very basic set up, about working closely with the Catholic church, about the remoteness of the region, about being close to NJH . . .

My team-members, Rachel and Satyaprakash, had a plan to visit one of the nearby villages. I told them that I will tag along. The place was a difficult one – inhabited in majority by one community. There had been quite difficulties in starting off the work. A group of disabled people and their families were in the process of joining hands to work together. 

We left the main road to travel about 3 kilometers to reach the village. It was so thickly populated. It looked more like a slum than a village. Overflowing drains, cobbled streets, mangy dogs running along the streets, sickly looking half naked children playing wherever they could find some space . . . The place looked quite out of place for the rugged agrarian communities that we usually have around this place.

Most of the people on the street were quite suspicious of our arrival. We reached the designated place of the meeting. There was nobody in sight. Satyaprakash told the lady of the house to inform everybody that we’ve arrived. We then drove on further down the road to meet couple of disabled families.

We returned in 10 minutes to find the meeting place teeming with children. They all looked alright to me. Then, I saw couple of children, limp with their drooping heads resting on the shoulders of most probably their parents. There was one young man with quite badly deformed legs.

Considering that Rachel and Satyaprakash were familiar faces, I opted to stay at a distance and observe. The faces of the parents were bereft of any hope. They looked quite lost in thoughts as my colleagues told them about the need to group together, work together, about what their children can do etc etc.

The father of one of the children with the cerebral palsy had come late and could not find space inside the room where the meeting was going on. Only the mothers of the disabled children were there in the room. His wife was there with the child. So, he silently came out.

I asked him about his child. He looked quite well off for the setting. Dressed in jeans and a branded shirt with jazzy looking goggles in his shirt pocket, he looked very unlikely to be an anxious parent. But, he was an anxious father.

His child was born in a private hospital in the local town. The child had not cried at birth. He was admitted for about 3 days in the same hospital before he was referred to a tertiary centre for neonatal care. The baby was admitted in the city hospital for about a month before the parents were told that nothing can be done and maybe some exercises could help.

They took the child to many places but nobody had told them that the child would never be how they would expect him to be. And of course, nobody was there to tell them on how to do things for the maximum benefit for this child.

On asking the man about number of similar children in the village, he told that he knew personally at least 10 of them. Rachel and Satyaprakash was discussing about the same issue in the meeting. And one of the ladies called out to the man to ask the same question.

We told the group about the need to form a caregivers group for such children.

Sheron, our physiotherapist would soon be visiting this village. I hope that the parents would take this endeavour seriously.

I felt so elated after the outing . . . I was looking out for a sign . . . to move on or stay. As we journeyed back, I asked Rachel about plans for the year ahead. She told about doing the same thing for 3 more years in this region . . . till there is a change in attitude towards the disabled.

The region we serve in is quite backward when it comes to even routine clinical care. Leave alone the disabled people, it’s a challenge for the rest of the population to access basic primary care services. If it were not for people like Rachel, Satyaprakash etc. who are the members of our team, the disabled in these regions would never have known that there is hope for them.

Over the last 3 weeks since I’ve been in Barwadih, I have been exposed to blunt fact that communities that have poor, almost no access to basic healthcare are much much more than I ever thought. So, the challenge to the disabled in such settings becomes all the more large.

However, the bigger challenge would to find like-minded healthcare and social work professionals who would be ready to go the extra mile to make a difference in the lives of these special people, especially in remote areas of the country, similar to the region we serve. 

Physiotherapy at NJH

This is a guest post by Ms. Sheron Mathew, our physiotherapist. Sheron completed her graduation in Physiotherapy from the Christian Medical College, Vellore.

I was sponsored by Emmanuel Hospital Association for my graduate studies in Physiotherapy at the Christian Medical College, Vellore. As I was the fag end of my internship, I got information that my 2 year service obligation would be at Nav Jivan Hospital, Satbarwa. I wondered where exactly this place was? 

To my horror I found that this was in the middle of Naxalite infested territory. I was scared in the beginning, but the realisation that God has called me to serve at NJH with a purpose strenghtened me.

I was elated to find out that NJH never ever had a Physiotherapy Department.

Yes! Finally I get to be the Boss. And I get to choose how to keep the department. What colours the walls should be ? I get to choose what type of things should be kept in dept. A big awesome physiotherapy dept which has all the new equipments – standing table, tilt table, IFT machine, Ultrasound machine, electrical stimulation, new plinths for patients, lots of toys for cerebral palsy kids, different gym balls. 

That was me thinking as a fresh graduate from the Christian Medical College, Vellore, where everything was provided well; - doctors, physios, occupational therapist, speech therapist, psychologist, implements, exercise machines, special rooms - without which I thought I won’t be able to run physiotherapy department.

All these thoughts lasted till march 31^st 2013, when I had an opportunity to visit NJH for 1 week along with Ms. Ruth Ann, Physiotherapist who had extensive experience abroad and in mission hospital set-ups including other EHA Hospitals.
         

Sheron along with (from Right to Left) - Mr. Dinesh, Dr. Nandamani, Dr. Ron Hiles, Ms RuthAnn

All my dreams appeared to vanish off when I saw the hospital for the first time. I couldn’t see anything to build up the Physiotherapy Department. This was the first time I saw a really rural mission hospital and that too in one of the most impoverished regions of the country. Miss. Ruth Ann gave me ideas as to how I can start the dept. I went back to my department in CMC, Vellore the next week and was making frantic enquiries with my colleagues, seniors and friends who had served in mission hospitals. I was surprised to hear about creative ideas of different treatments used in the absence of hi-fi and latest technology, innovative methods of using pipes for splints, or AFO (ankle foot orthosis) made out of wood and plastics.

When I was there in NJH in March, during rounds one of the doctors mentioned me that when doctors come to hospitals like this they have to re-learn their medicines. I was not sure of what he meant at that point of time. But now I can see the clear picture.

I realised that setting up a new department is not about buying new things, or putting new colours on the wall or contructing and designing a special room. It’s all about finally trying to explore new ideas which is cost effective without any compromise of the quality of treatment.

One of the problems at present I face is perceptions of staff and people about the discipline of physiotherapy. Most them believe that it is only medicines, injections and surgery which can cure a person. Which of course, stands true in lot of cases but not in all. In conditions such as stroke, cerebral palsy, spinal cord injury they need more than medicines or injections to make them walk, stand or even lift their hands. 

Then, there is another group of people here who think physiotherapy is all about massage or “KHASART” to be fit, and physios are the people who treat only back pain, neck pain and shoulder pain. 

During the past 3 weeks in the hospital and after few village visits, I found that though there are quite a lot of patients who need physiotherapy, most of them are unaware of services they can avail, and end up being in their house on a bed or in a corner of the house for their lifetime.

I’m excited about the Community Based Rehabilitation Project for People with Disabilities in the surrounding communities. It is a blessing for me to be of service to the community through this project. It’s a long way to go but I  hope one day people with disabilities would be finally be able to live with maximum independence possible.

Then, there are stories of ignorance fueled by unscrupulous practitioners and quacks.

In last 2 weeks I had 3 cerebral palsy children who came for physiotherapy. The father of one child told me that doctors elsewhere told him that his child is floppy because her muscles aren’t strong and she needs medicines to make it strong. The mother of the second child told me that the doctor they saw last told her that her son needs a surgery so that left Side starts working.

The family of the third patient knew the condition of their daughter. But before they left the department the father queried, “What is the life span of children with such problems?  We are old now. Once we die, no one will be there to take care of her or feed her. Even her own sister won’t look after her because she has her own family to look after. We wish her time (to die) is much before ours.” This question is something I don’t know how to answer.

Before coming to NJH, I wondered at what sort of a job a physiotherapist would do without an orthopedician or a neurologist or a PMR (Physical Medicine and Rehabilitation) doctor. Till now I got to see patients in almost all those fields -  Respiratory problems including patients on the ventilator, Snakebite patients who has nerve damage due to compartment sydrome or those who require fasciotomies, acute Cerebral events, Cerebral Palsy and Musculoskeletal pains of all types.

Well I think that’s what serving in mission hospital means, where Jesus is the Great Physician, consultant in all fields, rather the main consultant who guides His children to provide the best service in the middle of all limitations to fellow beings created in God’s own image.