(Spring ’17) Julia Heyman, ’17
Julia Heyman (’17, Civil and Environmental Engineering)
Julia will spend the spring and summer in Indonesia with MIT social start-up SenSen and United Cerebal Palsy Wheels for Humanity. Julia is building on SenSen’s low-cost sensor technology to design and implement a large scale study to monitor and evaluate wheelchair usage and the suitability of particular wheelchairs for the local community. The study is designed to be an inclusive and participatory process for users.
Check back for her updates!
On the plane over to Bali (a short 32 hour flight from Boston), I had a lot of time for reflection. Part of the time was spent smiling that I was on my way to the beautiful, tropical, “life is chill” Bali, part of the time was was spent stressing over the upcoming tight project timeline, and the last bit was a time to think about the journey that led me to sign up for a year long project focusing on wheelchair users.
About a year ago, my department, course 1, abruptly changed the guidelines for our senior capstone project–which now involved doing individual independent research compared to a a team project. I was lost–I already had a UROP I loved, it was five days before the beginning of the semester, and I wasn’t loving any of the proposed projects the department pitched. I’d always been keen on in international development, so I emailed an instructor at D-Lab asking if there were any projects loosely related to anything in my department. I was desperate but found myself to be in luck! There was a team doing work in Uganda looking at charcoal cookstoves and air quality. My research involved the calibration of a low cost particulate matter sensor that was used in household air pollution monitors in Uganda. We worked with a local cookstove manufacturer to measure air pollution and cookstove usage with low cost sensors developed by Sensen. I had the chance to travel to Uganda twice with this project, which convinced me to live abroad for a few years after my upcoming graduation in a few months.
Well the stars aligned and I figured out an exciting plan post graduation–my team mentioned they were about to begin working on a large scale sensor study involving wheelchair usage in Indonesia and I applied and was awarded a grant through MIT to embark on a year long research journey with them. So here I am (and will be) in beautiful Bali, Indonesia. It is crazy to think how a random email to find a capstone project led to my first “real job” (if you call living in Bali one!)
Our work in Bali involves studying how people use wheelchairs. We will be studying different types of wheelchairs, and the impacts that they have on wheelchair users. The wheelchair field is an understudied sector with many current decisions being driven by anecdotal evidence. We are hoping to change the standard of wheelchair studies by performing a thorough and rigorous long term study mapping wheelchair performance, impact, and usage.
Currently we are working on a pilot project in Bali with 150 wheelchair users, and then will expand to a full scale study later in the year in Bali and Nicaragua with 500-750 wheelchair users. We are building out a questionnaire to be administered at the beginning and end of the pilot study, and we will also follow up with a few questions via SMS in the interim months. Additionally, we will install sensors onto the spokes of the wheelchairs in order to characterize wheelchair usage by using these built in sensors and algorithms. Our goal is to look at wheel rotations, speed, and distance traveled.
We have a huge team! In Bali, in addition to us at MIT CITE and Sensen, we will be working with United Cerebral Palsy Wheels for Humanity, Puspadi Bali, and researchers and students from UGM and Udayana University. Stay tuned for more updates!
Bali has a significant amount of holidays! Most of my first few weeks have only been four day weeks because of the many different celebrations and ceremonies occurring on the island. Indonesia actually has the highest density of Muslims in the world, but Bali is predominantly Hindu. I have found it remarkable how Indonesians are respectful and knowledgeable of all the other religions, ceremonies, and traditions despite their own identification. One recent holiday was of specific interest—Nyepi Day, otherwise know as the day of silence and this is the Balinese New Year. This is one of the most important days every year in Bali!
On Nyepi day, you are not allowed to exit your home, talk to anyone, use electricity, or eat. It is a day for reflection, and a day for all the bad spirits to leave your world. Regardless of your religion or spiritual preferences, the whole island shuts down for the day. It is a national holiday in all of Indonesia, and even in the non-Hindu areas of other islands, the cities and villages are significantly quieter. The week leading up to Nyepi day everyone would provide me with bits and pieces of information about the holiday, but I was still so curious how seriously the rules were followed. Imagine America shutting down for a day—it would never happen!
On the eve of Nyepi, there is a huge celebration. The night begins with a huge parade with different floats of Ogoh-Ogoh, the evil spirit, that are later burned to represent the evil spirits leaving your life. What is so interesting is whenever I would ask people where the parade was or what time it would start, I always got the same answer—you just will know. They were right–I followed a crowd, ended up at this intersection, and was thrown into a huge celebration!
There were different groups doing dance and music performances, but the highlight was the different floats! The parade was wild—the floats of Ogoh Ogoh were huge, dressed up in different clothing, and doing different things! For example, I saw an Ogoh Ogoh taking a selfie, representing our over reliance on technology! It was hilarious and very interesting. Many of these floats required hundreds of hours to build, and over 10 people to carry them down the street.
Another crazy experience was when they would create a pit and run the float all around this pit, nearly running the crowd over! It was actually pretty intense, and we had to be very alert to not get run over by these huge floats! It was such a sight to remember, and it was beautiful to watch the community come together to celebrate this holiday. It was clear how much pride people had for their floats, and the commitment they had to this big event—it was remarkable!
Right before I went to bed, I got a message from a friend saying make sure to stay inside or the police will arrest you! We’ll there you have it—this was serious and even though Bali is a huge tourist destination, the ceremonies and traditions were being upheld. The next morning, we arose, and it was silent. It was crazy to realize how much background noise there always is that we just tune out. Throughout the day, I was continuously amazed at the silence. It was a day of reflection, of slowing down, of tuning out—and it was quite refreshing. I was actually surprised at how bad I was at “doing nothing,” a gentle reminder to slow down in our crazy lives. Although I was just an outsider getting a taste of the Balinese ceremonies, I was grateful for the experience and to have my own take on Nyepi day! I’ve never seen so many people, or communities, let alone a whole island come together to celebrate a ceremony. It represented a huge amount of respect!
Connecting with Stakeholders!
This project is a first of its kind—only some research has been done on wheelchairs and accessibility, and what has been published is not nearly as rigorous compared to other fields surrounding vulnerable populations and health. This aspect of the project is what drew me to the project in the first place! But as we are trying to pave a new path for disability research, a lot of challenges naturally arise. We have had a few delays on our timeline, but hope this allows us to be more prepared for when we actually start.
Our team has been spending a lot of time perfecting our questionnaire for study participants, and have gone through 20+ iterations and countless hours of phone calls and practice to make sure we are asking the right questions and in the right way. And even then, we still won’t know and are excited to learn more from this pilot study. Every time we speak with a new leader in the field, or wheelchair user, we find out something interesting we want to include in our research. For example, some wheelchair users discussed with us that the appearance of their chair affects how much they use their wheelchair so we wanted to add in a few questions about this. It has been an exciting time and we have learned a lot, but also very busy!
We are continually reminded to think about how we can use and communicate this research in effective ways. I had an interesting experience last week when I was on a home visit. Upon visiting, we learned there were further health complications that were preventing the user from using their wheelchair. We had a subsequent long interesting conversation about this complication, the health care system, and how difficult it can be to access. Our research goal is to look at the impacts of using an appropriate wheel. But what we sometimes see in the field is wheelchair users can’t even use their chair, often because of health complications and the lack of access to the health care system.
In Bali, people with disabilities are sometimes a forgotten population. There is a lot of stigma around disabilities, so it is difficult to even access or identify those with disabilities. Additionally, this stigma creates difficulty in accessing education or gaining employment. On top of all this, in order to get health insurance and welfare, people must go through a lengthy process of registering with the government and even if they are able to, prices are still quite high. It shows the need for the government to get more involved with this population, and work with disability organizations and other stakeholders to improve health care access for people with disabilities.
Even if we had a perfect survey and collected the most interesting data out there, its important think about how we can connect to different stakeholders, especially the government, to address the challenges people with disabilities face in a holistic way. Communicating what we hear, learn, see, and analyze is incredibly important. We are working to build strong relationships with other stakeholders and organizations so we can continue the conversation. We can work to research appropriate chairs, but their also must be access to infrastructure, health services, employment, and more! Puspadi Bali, our partner, has been making strides towards these goals and we hope to assist them with providing actual evidence based research.
Data collection time!
What a few crazy, busy, stressful, rewarding weeks it has been! Our project is finally live, our “baby” is finally born! Haha. The whole team has been hard at work distributing wheelchairs, interviewing wheelchair users, and attaching sensors to wheelchairs. Our project is occurring in locations all around Bali so we have been working out of Puspadi’s office, Tabanan, Singaraja, Karangasem, and more! We are getting a whole tour of the island as we work with more wheelchair users.
The days have been long, but full of learning. Every user has a new experience, a new take on something, and it has been quite the process to document everything! What has been amazing is how excited and interested users have been to participate in the study. People have been incredibly engaged and open with sharing their stories. We have met people from all walks of life—old and young, sick and healthy, urban and rural, poor and rich, educated and uneducated. Puspadi Bali always says disability doesn’t discriminate!
Tini Surgi from Puspadi Bali interviewed one of our wheelchair users and wrote up about his story!
I Ketut Gigir lives with his family in a basic home made out of brick and natural resources in a remote, impoverished part of Karangasem in East Bali, surrounded by fruit trees, poultry, pigs and cattle. In 1985, Ketut Gigir became paraylysed after falling out of a tree, which forced him to learn how to adjust to a dramatically different way of life. Since that time, he has been using a wheelchair within the confines of his home, and sadly, not venturing out into the street or in his village. I Ketut Gigir told us “I’m happy to be part of the project…my wheelchair helps me to work (making Balinese offerings) and do more things by myself.”
Stories like this remind us our work is for the long term. Providing a wheelchair isn’t a permanent solution as we have discussed other accessibility challenges in other posts, but it is a start. These wheelchairs allow users to connect and engage with the community, and we are looking to quantify and document this. This again points to why this research is so powerful–we are working to continue changing the wheelchair sector by presenting this evidence. The data will be open source so other stakeholders from around the world will be able to access it.
It’s not always glamorous–everyday presents its own challenges. Sometimes we have challenges with our sampling strategy, sometimes we aren’t able to find a user’s home, sometimes we are missing the screws for the sensors. There have been days where it felt like a slippery slope into a pool of issues, but we continue to work through them. Doing something for the first time is never easy! Something I have to come to appreciate about my team is that we all like to be honest and recognize and discuss the challenges, but also celebrate the accomplishments and take a step back and look at the bigger picture. Puspadi Bali has a chant in Indonesian that we do at the end of meetings about making a difference and staying committed! Everyone I work with puts in so many extra hours and always has a smile on their face that it is truly inspirational.
The Farewell (for a few weeks)!
It has been exciting as we have been getting data in real time from the sensors. Although it has only been a few weeks, we can already start to see trends in the usage data. Additionally, we are beginning to take our first look at the interview data. Now that the data is beginning to roll in, our next phase of the project will surround data analysis. I am headed back to the USA for 6 weeks between the baseline and endline parts of our pilot project and am excited to debrief with the folks at MIT and get working on our next phase.
As I start to reflect, if there is one main thing I have learned through my time here in Bali, it is that communication and coordination are key! Always having an open line of communication with our team and working together in this collaborative environment allows us to have a more effective and efficient project and stakeholder relationships. For myself, this was one of the most exciting and challenging parts of the project. Not only did we have a huge team, but our team had different cultural and academic backgrounds. All of this leads to a lot of learning about how to communicate! Having this huge team was also my favorite part. It was so cool to get to work with so many different people and have so many amazing conversations. Our team consisted of physical therapists, people with disabilities, journalists, doctors, professors, researchers, students, engineers, and more!
I also had the opportunity to interact with and learn from many wheelchair users. Their perseverance, engagement, and insights into our research was always inspirational and admirable. It continued to remind us of the importance of our project, and to continue connecting with additional stakeholders and advocate and educate about accessibility and disability rights.
Personally, I have wondered for a long time if I wanted to go to medical school. Even though, I still don’t know the answer, I think this journey brought me one step closer. Many times when we were visiting user homes, our conversations surrounded health topics and I saw how powerful it would be to have a medical background when approaching these conversations. I’ve always thought of myself as someone who likes to look at things from a multidisciplinary approach, and this project showed me how fascinating it can be to combine the technical and social aspects of research with medicine!
I will be headed back to Bali in early July to begin preparations for the endline piece of our project. In this phase of the project, we will be doing follow up interviews asking about the impacts of the wheelchair from the last three months and collecting the sensors to begin analyzing the data. We will also be interviewing other stakeholders including physical therapists, caregivers, and wheelchair technicians. After that, we will go through an intense period of data analysis and then embark on the actual study! It is crazy to think that we are still going through the pilot right now, and eventually we will expand to 2 countries and over 500 wheelchair users.
Overall, we have accomplished a remarkable amount of work, and it has been awesome to meet and work with so many new awesome people!