Since I last wrote, Jon, Vicky, and I have completed our travels from one side of the subcontinent to the other. Mumbai (last weekend) was on the western coast looking over the Indian Ocean and now we have most recently spent three days in Visakhapatnam, on the east coast, touching the Bay of Bengal.
Visakhapatnam was a break from the usual routine for Jon and Vicky because all of the organizing and logistics - where to speak, what to talk about, how to get in contact with therapists, patients, doctors in the city, even meals and taxis – were taken care of by their friend Dillip.
Dillip is a quadriplegic that met Jon during one of his earlier trips to India and quickly arranged for him to come visit his home. In Jon’s telling of this story, he was ‘held hostage’ on the top floor of Dillip’s home (with no lift to freely move between floors) until Dillip was satisfied that Jon had taught him all the rehab and independent living practices that he knew (he was ‘released’ after 10 days).
Since that time Dillip has been one of the most motivated and proactive contacts the Sigworth’s have in the country. He has fully embraced the ‘pay it forward’ attitude that Jon first experienced in with members of his wheelchair rugby team. This means that the quads on Jon’s team taught him many independent living techniques, which he passed along to Dillip, who is now teaching them to other quads in the city (peer mentor rehabilitation). Dillip has also started a disability advocacy NGO, “The Ability People”, and is planning to open his own rehabilitation center to facilitate the training that he is doing with individuals.
While in Visakhapatnam, we participated in a two-day “Active Rehabilitation Conference” put on by Dillip and the doctor whose home we stayed in. Dr. Prakash was a surgeon who experienced a spinal cord injury and was left with similar mobility to Jon. While he can no longer perform surgery, he has now turned part of his home into a walk-in ear-nose-throat medical clinic. Thus, each day as we walked in and out of his living room we passed a line of patients waiting for the doctor.
The conference included different doctors, rehabilitated quads, wheelchair distributors, and Jon and Vicky as speakers. It was targeted at therapists but also injured persons themselves. Each day included a large portion of time where all the speakers just walked or rolled through the crowd to talk with individuals and give personal counseling and rehab advice. Visakhapatnam faces many of the same challenges as our other stops - no rehab centers, uninformed physical therapists, poor treatment of bedsores, etc. Despite these problems it was encouraging to participate in an organized conference, hear positive attitudes, and see effective rehab practices being taught - especially considering that people other than Jon and Vicky took the initiative (giving them a well-deserved break).
As I am writing this we are currently flying back to Delhi from Visakhapatnam. We will arrive around 2 in the afternoon and will then have to battle Delhi traffic to cross the city for one last speaking engagement at a college at 6 in the evening. The Yale gospel choir is completing a short tour of India and has asked Jon to share a short message during their performance. We found out about this opportunity from a recent Yale graduate/youth pastor whom we met at church in Delhi during our time at ISIC. We will unfortunately probably have to leave the second half of the gospel choir performance early in order to return to the international airport on the other side of the city and catch our midnight flight back to New York.
So while we’re heading home, don’t tune out from this blog just yet. I will try to post a photo summary of this last week and write one more review post once I am settle back in the US. Happy travels!
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.
Romans 15:13
Photos:
1. The Visakhapatnam seaside.
2. Three quad conference MCs: Dr. Prakash (our host, former surgeon), Jon, and Dillip.
3. Jon's bed mobility demonstration in a very hot, humid conference hall.
Each airline and airport in India is different, but this domestic flight to Mumbai had no lift.
Juhu beach and the Mumbai skyline on the far left.
Cricket with disabled students in Hubli.
Sunset in the Indian countryside.
Bit of a longer story: Amir Khan is Bollywood's Johnny Depp, Jon's favorite actor (he's not as full of himself as other Indian megastars), has made many statements recently declaring disability advocacy to be his 'cause', and is reportedly going to make his next film addressing this issue in Indian society. This photo shows Jon giving a letter of introduction, offer of support and a copy of "More Than Walking" to Amir Khan's personal assistant at the gate to his apartment complex. We were told, "When Mr. Depp... er, Khan, returns from the US, he will give you a call," (now who knows if anything will actually come from this, but it was already cool enough to wander up to his gate).
With so much traveling in the last week I have not been able to sit down and type much. Usually I am able to write after a couple days of getting settled in at a location, however, we have been two days in Ahmedabad, a day of traveling, two days in Mumbai, a day of traveling and now one day in Hubli. So by the time we meet whoever we’re supposed to meet or go to whichever hospital or school, it is already time to pack up and get moving again.
So the quick summary is the following:
In Ahmedabad Jon, Vicky, and Jyoti (our friend from ISIC) presented at the city’s government hospital and medical school and at another private physical therapist training center. Jon did bed mobility demonstrations and Vicky got to practice her new found motivational speaking skills. We’ve found that it might be more effective to talk with student physical therapists (to change the mindset and rehab practices for quadriplegics), rather than with medical professionals (who are less interested in new ideas and more set in their ways). Jon is already planning his next trip to India as a nationwide tour of these medical schools, teaching the techniques he learned in Connecticut but are not valued or known in India.
In Mumbai we met with two quadriplegic individuals and also visited a paraplegic live-in rehab center. The first quad was from a very wealthy family who had taken him to the Shepard Center in Atlanta (the best spinal cord rehab facility in the world) after his injury. This young man, Vaibadh, (who went to College at Northeastern in Boston) seemed interested in connecting with other hidden quads in Mumbai and perhaps starting his own rehab center.
The paraplegic rehab center was a simple operation, 25 beds, 2 full-time physical therapists, and some rehabilitated paras helping with therapy. However, apart from ISIC, they had the best set up and seemingly the best results (all the paras were transferring themselves, on their way to independence) in all of India. Here we met with another young man, Oliver, who was a Catholic from south India, spoke perfect English, and had been living in Mississauga, Canada. His accident took place while visiting home in Mumbai, and while his family returned to help with his rehab they lost their permanent resident status in Canada and were not allowed to return. Despite these difficulties Oliver is living independently now and even working for a friend in the city.
In Mumbai Jon was also able to reconnect with some friends and the church he attended while he lived here for two months on his own last year. In my own free time in the city I made some new friends and had a couple challenging experiences that I won’t share here. Unfortunately, I fell sick again on our last night in the city (food poisoning from street fruit) and have been slowly recovering ever since. This has been made more difficult because all the travel has left me particularly exhausted (heat, bumpy train rides, don’t always fit in beds, etc).
Now we have reconnected with Joy and Karen in Hubli. They have been working here for the past couple weeks with an organization called Equip India (the Indian partner to the major disability organization Joni and Friends in the US). We are staying in EI’s complex out in the countryside where they provide therapy and vocational training for disabled persons (mostly polio) and run a hostel for 40 local disabled Christian college students. These short trips are a bit frustrating because we are introduced to so many new people yet have little time to get to know them. I am having trouble understanding how much effort I should put into developing so many new friendships when I will probably only be able to keep in touch with a few once I return home.
We were supposed to get a grand tour of the complex today, however, most of the staff had to leave for their homes in the city early because of a 6 pm curfew that has been enforced for the last week. The curfew and heightened police presence in the city is to due to increased Hindu-Muslim tensions since a mosque was vandalized during Holi last week. All the troublemakers have been arrested though and the curfew should be lifted soon.
In spite of all of this, we are enjoying the laid back atmosphere at the EI complex and happy to be with Joy and Karen again. I will try to post once more (plus photos) before our flight back to the US this coming Sunday night!
"Come," he said, "and you will see."
John 1:39
Photos:
1. Vicky speaking to a room of physical therapist students.
2. Paraplegic rehab center (with wheelchair-level training beds! very important, almost no one has them though)
3. Reconnected with Karen and Joy (and their two new assistants, American students from a bible college in Chicago) in Hubli
I am writing this post in the same hotel room in Ahmedabad as the last post. However, the last four days have been spent in Junagadh, a smaller city eight hours to the west, and the hometown of Jon’s friend Samir.
Samir was injured (same level as Jon) in a car accident seven years ago on the drive from the airport to sign his insurance papers for a new job as a software engineer in Oman. Since then he has moved back in with his elderly parents in Junagadh. Jon met Samir three years ago at ISIC in Delhi where he was one of the few patients at the hospital who was truly on his way to learning the therapy techniques to make him independent. However, he became sick on the train ride home and then developed a bedsore while recovering. For the past three years he has not had proper medical attention and has thus stayed only in his home dealing with bedsore after bedsore. This unfortunately means that all the strength and training from his successful stay at ISIC will have to be repeated.
As with Riya and Rahul, Jon’s main purpose in visiting Samir was to spend real quality time with him and develop beyond their initial friendship. We also brought a new wheelchair, with a pressure cushion that will hopefully allow him to get out of bed. The original plan to bring Samir back to the larger hospital in Ahmedabad was abandoned while we hope that the arrival of his new care attendant (an another old friend), Major, will provide the attention needed to help Samir finally recover from his bedsores and return to his physical therapy.
In Junagadh, between Jon and Samir, we were dealing with the two most common health problems quadriplegics face after their initial recovery: bedsores and chest infections (Jon has a small infection, not to worry). The past four days were a crash course for me on these medical issues. They are not light-hearted concerns and have made this week particularly pressing (many discussions and complications not fit for repeating in the impersonal forum of this blog).
Fortunately, Samir’s optimistic attitude was very infectious and our time in Junagadh was also filled with plenty of enjoyment. Sunday morning Samir and a couple friends took us to the city’s zoo. Despite the lions, tigers, and sloth-bears, my attention was most captured by the many unusual tree species growing throughout the zoo. We left in the early afternoon when the sun was reaching its highest point and the heat was becoming unbearable (I had to remind myself that this was still February and was all the more thankful we were not visiting in the summer).
Sunday night I went out for my own little adventure walking through the city. This was the eve of a popular Hindu holiday so there were many bonfires throughout the city. At these fires, families and individuals gathered to participate in the holiday’s religious ritual (circling the fire seven times while pouring water, throwing popcorn and coconuts in the fire, and saying prayers). I watched from afar and eventually took out my sketchbook to record the occasion. I was quickly surrounded by a group of kids (and eventually their older siblings and parents). After finishing my sketch I spent about an hour being led through the neighborhood being introduced to other family members.
The following morning I arranged to hike up a small mountain/hill outside the city with the Catholic priest we had met the previous day. There is an elderly Christian woman who has been living on her own (praying, meditating, tending her garden, serving visitors, etc) in the forest of the mountainside for the past 36 years. The priest visits her for mass every Sunday and that day was leading a group of visitors to spend the day with this sister. The father said that when he visited her Sunday morning, two lions crossed his path on the hillside (our hike was more mundane however). I was blessed to speak briefly with this woman living in peace and simplicity in God’s creation and then spent some time in prayer in her one-room ‘chapel’.
The remainder of Monday was particularly exciting back in the city because of the community’s celebration of Holi (the Hindu festival of colors). Basically the entire town, but especially the children, fill the streets throwing brightly colored powders and paints at one another. The adolescents zoom down the streets on motorcycles, holding large sacks of pink, green, blue, red, or yellow pigments. In a modern rendition of medieval jousting the cyclists hurl the colors at their on-coming friends as they pass each other on the road. Jon, Samir, Major and I walked and rolled through the backstreets. Because we were particularly noticeable (two guys in wheelchairs and me - tall, white, and red-bearded) we received special Holi greetings, which involved strangers smearing vibrant handfuls of powder right across our faces, necks, and hair. We scavenged a couple bags of paint ourselves and thoroughly enjoyed walking across through the laughing crowds and rainbow clouds of thrown paint. This is really a holiday we need to start celebrating back home!
We have now returned to Ahmedabad, where Jon, Vicky, and one director from ISIC will be training physical therapists and working with spinal cord patients at the civic hospital. It will be an interesting transition once again after spending time in such close community with Samir and Major and now returning to the big picture hospital/advocacy work.
From one man he made every nation of men, that they should inhabit the whole earth; and he determined the times set for them and the exact places where they should live. God did this so that men would seek him and perhaps reach out for him and find him, though he is not far from each one of us.
Acts 17:26-27
Photos:
1. Jon and Samir help capture an escaped tiger.
2. Resting in the shade at the zoo.
3. The holy mountain seen from the streets of Junagadh.
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?)
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
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)
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.
Samir was injured (same level as Jon) in a car accident seven years ago on the drive from the airport to sign his insurance papers for a new job as a software engineer in Oman. Since then he has moved back in with his elderly parents in Junagadh. Jon met Samir three years ago at ISIC in Delhi where he was one of the few patients at the hospital who was truly on his way to learning the therapy techniques to make him independent. However, he became sick on the train ride home and then developed a bedsore while recovering. For the past three years he has not had proper medical attention and has thus stayed only in his home dealing with bedsore after bedsore. This unfortunately means that all the strength and training from his successful stay at ISIC will have to be repeated.
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.
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.
Village artisan and his homemade clay wheel. 
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.
