On the Road Again

Our final days in Delhi were quite busy as we all tried to spend as much time with our new friends at ISIC as possible.  Jon spent most of his time in the physical therapy gym working one-on-one with three young quadriplegics. 

The basic bed mobility rehabilitation techniques (learning how to sit up from lying down, move your legs to the edge of the bed, shuffle and balance while sitting, etc) that set the stage for quadriplegic independence are not being taught at the hospital.  Thus, Jon spent hours with those couple patients and young physical therapists in the hope that they will be able to continue this training and teach it to others in the hospital.  This becomes more difficult with the realization that most all the therapists in the hospital were still in training and many do not stick with the profession for very long because of the low pay.

Two highlights from the week both involve our good friends Riya and Rahul.  First, on Sunday afternoon Jon, Raman, and I arranged to take the two (plus their families) to a big new Bollywood film in a local theater (“My Name is Khan”, featuring Bollywood mega-star Shah Rukh Khan).  Because Riya and Rahul live on opposite sides of the city it took a bit of coordinating but all ten of us arrived with plenty of time to spare.

Unfortunately the theater we chose was not accessible (something nearly unheard of, and illegal in the US or Canada), so Rahul’s brother, Riya’s father and I carried each of our three friends up three flights of stairs, one after the other.  The theater itself (which mostly looked like any multiplex at home) did not have aisle seats reserved for wheelchairs and the theater staff made no effort to accommodate or help us. 

Jon and I (who know what this experience would have been like at home) were very frustrated and angry with the hassle.  However, our Indian friends seemed not to notice and were mostly just excited to see the film.  Although we were glad that the lack of respect and help did not hamper our friends’ spirits, it was a telling sign that here in Delhi, quadriplegics do not hold much hope for being accommodated in society.  So while it was wonderful that we were able to do this (it was the first time Rahul had been to a theater since his accident), I sadly doubt that either family will try attempt it again given the amount of work it required.

Anyways, big picture was that the movie trip was still a highlight.  It was great to hang out with Raman, Riya, Rahul, and their families now that we’ve developed more significant friendships. (oh, and the movie itself was pretty good, no singing and dancing though like a typical Indian film)

The second highlight occurred Wednesday afternoon just before leaving ISIC.  With some of the funds raised by the International Humanitarian Foundation we were able to purchase two active wheelchairs for Riya and Rahul.  These will replace their bulky, heavy, and old passive chairs and enable them to pursue more aggressive rehabilitation (if they and their families put in the effort).  The new chairs arrived at the hospital and are waiting to be modified whenever their new owners can come in for a fitting.

I’m now writing from a hotel in Ahmedabad in the western province of Gujarot.  We arrived by train this morning and will be heading out tomorrow to fetch another quadriplegic friend, Samir, in a smaller city.  Ahmedabad seems very friendly and relaxed compared to the business-minded capital city of New Delhi.  In my wanderings around the neighborhood I was quickly swarmed by a group of curious teenage boys, asking questions in broken English and shaking my hand.  From this crowd, a couple brothers invited me into their home to meet their family.  In addition to the 15-20 family members I was also able to meet the wild monkeys that scurry between roofs and trees in their courtyard. 

Besides just being a fun afternoon for me, I was able to connect the oldest brother in this family (who works as a physical therapist with spinal cord patients) with one of the directors of ISIC who is here in Ahmedabad with us.  These are the kinds of interactions I enjoyed so much in rural Morocco last year and have missed in my first weeks in India.  Hopefully our remaining time in Gujarot will allow us the opportunity to meet others in such a manner. 

This is the day the Lord has made; let us rejoice and be glad in it.

Psalm 118:24

Photos:

1. one of the several local paper articles published after the press conference on Friday (Jon, our quad friend Harsh, and myself)
2. Jon looks up at the stairs that must be conquered before the movie
3. happy movie goers (and tired, after all that lifting)
4. the posing is not quite right but I'll name them George, Thomas, Theodore, and Abe (anyone?)

Week 3 in Photos

Movie stars Navin and Riya talk with family and ISIC's sports therapist (and wheelchair rugby coach, center) after the press film screening.

  

Our auto-rickshaw in front of Rahul's home.  Somehow we regularly fit three people and a wheelchair in those little things.

 

Afternoon sun over the church.

 

The parents of a young quad at ISIC ask Jon to sign a copy of the film (Jon's is exercising in a standing frame).

  

Lodhi Gardens on Valentine's Day (like Central Park, but with 600 year old temples).

 

 Rahul plays the role of cricket coach to the neighborhood boys.

Busy Days

We are just arriving back from the disability conference that has been the focus of much of our preparations in Delhi and one of the most anticipated events of this trip. It was a pretty simple set up (just about 30 people attending in a small room in a Delhi Methodist church) but the response assured us that God had led the right people to join the cause.

Joy and Karen shared from their personal experiences in the States and in India and spoke on the importance of disability awareness and advocacy in church communities. Jon showed his film and articulated a very moving message of the value of building up quadriplegics in India (like our friends Riya and Rahul) and empowering them to pursue their aspirations despite the physical and social challenges. We filmed Jon’s talk and should try to post it on the ESCIP website in the future because I think it really captured the heart of this growing network’s purpose.

Our friend Raman (the up-start social worker connected with many quads in the Delhi, specifically with Riya) also had a chance to share his experience. This was particularly encouraging because the main point of this conference was to engage with the city’s Christian community to motivate and mobilize more loving laborers like Raman.

In the past year Raman has committed himself to meeting every week with Riya and her family, as well as many others like her. It has been because of the care and respect he has shown Riya, that her family has been motivated to invest more fully in her future. With his help they have bought a computer to allow Riya to communicate with quads across India, hired a tutor to continue her schooling at home, and made arrangements for her to play with the Indian national wheelchair rugby team (although this team has fragmented since the international tournament in November).

The lesson that Raman has taught us is that recovering quads need consistent encouraging relationships once they leave the hospital. Of course, this now seems like an obvious truth now but it is not so easy to put into practice. Jon experienced this community with the members of his wheelchair rugby team in Connecticut because he was easily able to get out of his own house and spend time with other quads. However, many people with the same level of injury in India find themselves more isolated because of accessibility issues and thus need selfless friends like Raman to put forth the effort to visit them.

By the way, Raman’s only income as a social worker comes from donations made to the International Humanitarian Foundation (the partner organization is collecting donations with the Sigworths). On the ESCIP website (www.escip.org) there is more information about the IHF and how others can contribute. If anyone reading this is ever interested in helping out I would say that after spending time with Raman, Riya, Rahul, and the many hospitals and churches we’ve visited, donating to IHF is probably the most direct and worthwhile way to contribute.

Jon and Vicky are able to do a lot of good during their visits to India but it is really those living and working here permanently that can have the greatest impact on the many quadriplegics they have met. Raman is an exceedingly humble, diligent, and loving man and is a perfect example of this idea. With God’s guidance, more men and women will emerge from among the seemingly eager and passionate conference participants today to support the larger community of disabled people in Delhi and beyond.

Before closing, I should also mention that on Friday ISIC arranged a showing of “More Than Walking” for patients and members of the press. Riya and Rahul came to the hospital to join Jon and a couple ISIC staff members for a panel discussion after the screening. Representatives from several local newspapers (as well as one national agency) were very eager to question Jon and will hopefully produce stories that make the needs and efforts of the disabled community (and ISIC) known to a wider population.

So now that we are through the excitement of the last two days we hope our Sunday will be a bit more restful. Joy and Karen will be departing on Monday (we will only see them again briefly in a couple weeks) while Jon, Vicky, and I will remain at ISIC until Wednesday.

Sorry for the length of this post, I waited too long to write since my last update (but also wanted to give the necessary attention to Raman and the promotion of more pseudo-social workers). More pictures of this last week will be coming soon. We wish you all the best this new week wherever you might be!

 

For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me.

Matthew 25:35-36

(someone imprinted these verses in Raman’s mind)


Photos:
1. mingling after the disability conference
2. Raman (right) during a visit with Rahul and his brother, Rohit
3. Jon is a much more reluctant celebrity than the press hoped for
4. while everyone else was busy changing the world this week, I was getting cricket lessons from Rohit

Too Much To Do

Now that we’re in the middle of our long stretch in Delhi (another 8 days) we’re getting a better sense of what work there ahead of us and what role we can play here at the Indian Spinal Injuries Center (ISIC).

ISIC is where Jon received surgery after his fall four years ago. Since then, he or his mother has been back in Delhi to visit the hospital about twice every year. This means they have a lot of friends (doctors, therapists, staff, and patients) happy to see them roaming through the halls. Unlike an American hospital, the Sigworths seem to basically wander in and out of any room in the complex without any official permission. We spend most of our time in the large open physical therapy gym.

During the day, the room is always busy with 10-12 patients being attended to by different staff people, training on mats, standing frames, weights, parallel bars, and wheelchairs. Vicky is constantly running back and forth between different groups of people, introducing herself to new patients and their family members, offering therapy advice, pointing out her son Jon from across the room and telling his story, asking about their rehabilitation, seeing if they have plans for getting rehab equipment at home after they leave the hospital, asking about their religious views, giving away copies of the film, etc.

Literally within the first half hour of arriving at the hospital Vicky was returning from a crowd of people to introduce Jon and I to a 19-year-old paraplegic boy who was just days away from being released from the hospital as well as to the family of a 13-year-old pianist whose accident has left him the same level of mobility as Jon. The older boy was very confident and talkative (spoke great English), a Christian, and before his accident was an athlete of many sports. He very much reminded me of many of my high school friends, or even myself, and was thus very easy to relate to in during our weekend visits.

The older boy has since left ISIC (we hope to deliver one of our donated active wheelchairs to his home) and Jon has been showing the younger boy how to play the harmonica (to encourage his musical abilities in light of his new physical capabilities). These stories are just a brief view of the relationships that Jon and Vicky are building every day.

In addition to the time spent in the rehab gym I am putting myself to work as a homemaker in the guest house that Jon, Vicky, Joy, Karen, and I are staying in. To avoid eating greasy hospital cafeteria food for every meal we’ve stocked our apartment’s kitchen and I have taken charge of running to the local market for bread, cheese, juice, peanut butter (basically any simple food that gives us a rest from Indian spices).

In the midst of the craziness of working around the hospital, meeting with Rahul and Raman, filming, connecting patients with one another, planning for future initiatives, showing the film, and planning for future travels it really helps calm my mind to be able to keep our kitchen and rooms at home clean and organized. This really just has to do with my personality but I hope that this bit of order in our living space helps to free up Jon and his mother’s minds from clutter and stress and enables them to focus their energies on the good work they are committed to.


For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently.

Romans 8:24-25

Photos:
1. Jon demonstrating rehab techniques for a group of quads in the ISIC physical therapy gym
2. Jon and Vicky visiting our 19-year-old friend's hospital ward
3. (from right) Rahul, me, Jon, and Rohit (Rahul's younger brother and caretaker)

Week 2 in Photos

Teachers (like these women in a village school we visited) have perhaps the most demanding and simultaneously important job in the world.  They deserve all our thanks and more.

Water buffalo have a slightly less demanding and important job.

Village artisan and his homemade clay wheel.

  

Playing with colors after church in Varanasi.

Jon, Joy, and a new friend from one of the village schools. 

Villagers clamor to catch a glimpse of the goofy pale foreigners and their rolling chairs in the schoolhouse.

Train Back to Delhi

We are now sitting in one of the 3-tier AC sleeper class cabins on the train back west to Delhi. It’s around noon and the train is already four hours late. “3-tier AC” means that each compartment is air-conditioned (much more important in the summer) and contains three bunks (bottom, middle, top) on each wall. With two more stacked bunks on the end, our 10 ft by 7 ft compartment is home to eight individuals for our 12 (now 16) hour trip. Of course we all have luggage as well, meaning four large suitcases, three backpacks, three small bags, and one disassembled wheelchair stuffed around our feet and under bunks for just Jon, Vicky, and I. However, the ride is surprisingly comfortable and the tight squeeze creates a great opportunity to get to know our neighbors.

 We have been lucky during this ride back from Varanasi to have four English speakers in our compartment. Jon and Vicky are particularly gifted in striking up conversations with these new friends. Jon gets a little embarrassed as his mother energetically conveys the story of his injury and work in India to anyone who will listen. In both our train rides so far we have pulled out a computer and speakers and played “More Than Walking” for our fellow passengers. This usually creates the opportunity to distribute DVD copies of the film to those who ask. Between train passengers, airport attendants, church members, hospital workers, taxi drivers, and other acquaintances, we have so far given away over 40 copies of the 200 Mr. Sigworth made before we left.

So this post comes at the end of a three-day stay at a rural Christian hospital outside of Varanasi (names and places have been avoided at the request of our hosts). The hospital’s director and his wife are old friends of the Sigworth’s and were eager to hear from Jon, Vicky, Karen, and Joy to see how they might expand their facilities and outreach to engage with disabled people in the area.

Currently the hospital aims to care for a rural population of 100,000 in about a 100 km radius. In the last seven years they have started several hundred village schools (leasing land, training teachers, encouraging families to send their kids, etc), dozens of home churches, and offer vocational training for individuals below the poverty line. All these programs are in addition to the health services offered by the hospital complex and their traveling clinics.

Needless to say the director and his staff are incredibly busy with good work but also surprisingly eager to add disability advocacy to their radar. During our time at the hospital we showed Jon’s film and discussed possibilities with many different groups in the complex (directors, eye technicians, nurses, visiting teachers, electrical students, etc).

The experience of Joy and Karen working in hospitals and the networking capabilities of Jon and Vicky (connecting needs in Varanasi to contacts all throughout India) were fully in use in each of these meetings. With less practical work to be done (assisting, filming), I felt much less engaged and took the role of quiet observer during most of this trip. Additionally, I was completely out of commission on the first day due to a 24-hour food poisoning bug. Everyone reminded me that this stomach sickness was part of my initiation to India and where better to be sick than at a hospital?

More photos coming as soon as we’re settled in Delhi again!


I have seen his ways, but I will heal him; I will guide him and restore comfort to him, creating praise on the lips of the mourners in Israel. Peace, peace, to those far and near, says the Lord. “And I will heal them.”

Isaiah 57:18-19

(this verse was given to me this week and seems particularly suited for the patients we met at the hospital and in the surrounding villages who are in need of healing, medical and otherwise)


Photos:
1. train compartment before bed
2. visiting villagers dine during hospital training

Joining Our Friends

(this post was typed Monday afternoon when we arrived, however, we've had no internet for the last three days so I will post this now and give an update soon)

Jon, Vicky, and I have spent the last three days at a church in Varanasi.  The Sigworths, along with two friends from Chicago (Joy and Karen), were speakers at a conference here for pastors and church members.  The pastor and his family have hosted us and made us feel very comfortable.  Each day, Jon, Vicky and Joy took turns preaching (with an interpreter into Hindi) for hour-long sessions (on various subjects including the importance of church community, the purpose of suffering, and disability ministry), separated by times of worship and tea.

The church is a complex of small buildings surrounded by flower and vegetable gardens, rows of banana trees, and tall shade trees.  The food grown on the property is used for our meals and other programs.  All the green vegetation (tall trees and hedges) makes the complex feel like a little oasis in the city.  The main room we have been using for services is an open-air mini-auditorium with high ceilings and rows of wooden benches.  It holds probably around 80 people and was usually pretty full for the guest speakers. 

I should give a more detailed introduction to Joy and Karen since we will be spending a lot more time with them (speaking at other churches and conferences):

Joy grew up in Varanasi as a pastor's daughter and has spent most of her life in a wheelchair from polio.  She has spent many years in the U.S. reaching out to Hindus and Muslims, and in recent years has worked with Joni and Friends, counseling for families and patients with disabilities in India.  Karen has just retired after many years as a school physical therapist in Chicago, working with families, children and schools to assure that the children are educated most appropriate for their disabilities. She has accompanied Joy on several trips to India over the past few years.

Jon and I also took a little break Thursday night to go into the city to see the Ganges River.  This river is one of the most famous in the world and is of utmost importance to the Hindu religious tradition.  Also, Varanasi is the most important (and oldest) city along the river, making it a center for religious festivals and pilgrimage.

Jon and I piled into a little auto-rickshaw, with his chair disassembled and packed around our legs and laps, and were driven as close as the small roads would take us before we hopped out.  From there we quickly found some new friends to help me carry Jon down the many flights of stone stairs which lead down to the river all throughout the city.  On the small, gritty beach below us there were three bonfires, each burning the remains of a devoted Hindu believer.  Around each fire were 15-20 male family members of the deceased, including one man, always a very close relative, who had shaved his head, dressed all in white and bathed in the Ganges to purify himself.  The tradition (which has been in place for thousands of years) is practiced to cleanse the person’s soul and release the dead to nirvana.  It culminates with the pouring of the ashes into the river and a ceremonial washing of all the family in the water.

We were able to see most of these practices right in front of us as we stayed by the riverside for an hour.  It was evening and we could see fires along the Ganges all through the city, with small boats of faithful Hindus and some tourist in the water.  As we were leaving, further up the bank a ceremony was starting to worship the river itself.  This ceremony occurs every single evening in honor of “Mother Ganges”.  After being in such devoted Christian community over the past couple days, it was interesting to be exposed to the religious life more common in this area.

As I write now, we have just arrived at a hospital and school in a smaller town outside Varanasi that will be our home or the next couple days.  I’m unsure of the plans for this new location, but we are now in a much more rural area.  We have brought some extra medical supplies from Jon’s stash at home to leave here for other spinal cord injured patients.  The lack of these supplies is one of the main problems experienced here in India since there are no real local manufacturers or distributors (and US suppliers don’t market here).

I’ll send another update once plans are set here!

Then he said to them all: “If anyone would come after me, he must deny himself and take up his cross daily and follow me.  For whoever wants to save his life will lose it, but whoever loses his life for me will save it.”

                                                                           Luke 9:23-24

Photos:

1. congregation members in the church garden

2. Vicky, Joy, Jon, and Karen during lunch

Week 1 in Photos

Friends on the roof.

Few images of me if not for amateur photographer/camera thief, Dhruv.

Jon looks back at the pothole that killed our taxi.  Perhaps we should have gone by cow instead.

Proud parents hiding off-camera during their daughter's interview.

Tip-off for rugby in the park.

Riya, Vicky, and Jon squeezed in a taxi.

Riya's Home

Last night was our final evening at Riya’s home in Delhi.  It also marked the end of our most productive and adventurous day so far in India.  The past four days have all been spent basically within this little home, although I have managed to explore the neighborhood a little on the back of Riya’s father’s motorcycle (as we race through the streets on little errands).

Monday morning Jon, Raman, Riya, and I discussed for several hours plans for the new film project we are beginning this trip.  It was very comforting to set a real vision for the film and to get on the same page with all of the most involved individuals.  The basic idea is to profile Riya and Rahul, making known their eager, inspirational attitudes and showing others their struggles and aspirations.

The purpose of making a film at all is twofold.  First, the new project, given Riya and Rahul’s examples, will more intentionally highlight the disabled community’s needs (material, emotional, social) and encourage advocacy to meet those needs.  Second, the film will address the unfortunate reaction of pity that is often witnessed towards spinal cord injured persons here in India (but also in the United States).  This attitude is detrimental to the courage and hard work embodied by many disabled people, and the film will promote instead an attitude of respect and friendship.

So in working on the film, we conducted interviews of Riya, her parents, and a friend from the neighborhood during the past three days.  We also were able to film a bit of her daily life; studying, interacting with Raman, transferring, and lifting weights.

Raman was a great help during this work, specifically as a translator for the interviews (Riya speaks pretty good English but we wanted the film to be in Hindi so it will be more accessible here in India).  Raman is also our connection between Riya and Rahul (as a social worker, he visits those two, as well as many other quads in Delhi, regularly to help them access various resources and supports) and will therefore play an important role in the new film.

In addition to conducting two interviews on Wednesday, we also had a wonderful trip to one of Delhi’s large parks.  It was Riya’s first visit to the park since her injury (three years ago) and a great outing for us all.  Riya and Jon’s friend Amit (a quad they know from wheelchair rugby practices at ISIC) met us as well.  These three friends turned quite a few heads as they rolled through this green oasis in the hazy city.  We even stopped to play a game of wheelchair rugby on an open court (with me and two other able bodied friends hopping on one foot to make teammates for Riya, Jon, and Amit).  We all enjoyed the exercise and fresh air, and hopefully Riya’s family will be motivated to repeat this experience more often in the future.

However, the most important event was perhaps an impromptu interview Riya conducted with Jon.  Being reasonably burnt out from being the one constantly put on the spot to tell her own story, Riya turned things around and began asking Jon the same questions during a time of rest on the terrace.  Soon, without the pressure of the camera, Riya began to share with Jon her own concerns and worries.  This honest, open conversation amazed me with the power of a true, deep friendship and reminded me that personal relationships such as this one are significantly more important than any film project.  We only ask that God would use our efforts to initiate and develop more of these relationships according to his will.

All this time spent at Riya’s home, many meals, dozens of cups of chai, daily transfers between the ground and first floor, have brought us close to this family in such a short time.  As a first experience in the country, I have been very fortunate to be a part of the real, day-to-day life of a particularly engaging, loving family.  Although we will hopefully be able to visit Riya briefly when we return to Delhi (we will be staying on the opposite side of the city for our next stint), it will be hard to say goodbye.

So at this point, the purpose of our trip shifts to the bigger picture task of engaging Indian communities in disability advocacy.  Tonight Jon and I will meet Vicky at the central train station and board an overnight train to Varanasi, where we will stay (with short excursions) for the next week.  In this new city, we will show “More Than Walking” and Jon, Vicky, and some friends from Chicago (Joy and Karen, a better introduction to them later) will speak at hospitals and schools.

Thank you all for your comments and emails!  Connections home to familiar faces are motivating for us on the other side of the world.  We wish you the best and will speak again soon!

A new command I give you: Love one another.  As I have loved you, so you must love one another.  By this all men will know that you are my disciples, if you love one another.

John 13:34-35

Photos:

1. family portrait

2. filming Riya's interview

3. rugby at the park

4. sharing on the terrace