June 28, 2011

Building in progress, Lilongwe

A closer view

I am not sure what comes to your mind when you see these pictures – taken at a building site in Lilongwe. I had been riding by this site for three years, and my curiosity has grown. There is a tall brick wall around the site, so the view is partially obstructed.

Today, I took a long walk to the site and courageously knocked on the big metal door. I asked if I could take a picture. I don’t take many pictures in Malawi, and I am very respectful when I do. Asking for this picture was out of my comfort zone. How could I explain my curiosity? I was told to wait for the Head Operator. Oh. Now I will need to have a good explanation. A very proud Head Operator greeted me, and I told him, honestly, that I was curious about his building. What is it going to be? How long will it take for it to be finished? I told him that buildings are different where I live, and I would love to have a picture. Those of you who have been fortunate enough to be welcomed by a Malawian smile can imagine his.  So, I was not perceived as a “nosy white person”, but accurately as someone with a true fascination with his work.

The topic of “scaffolding” kept me busy last summer in my DSc course on clinical instruction and reasoning. The term in education, generally, refers to providing a level of support so that the learner can build his or her own competence. What type of support, how much support, and how to decide when the support is no longer needed were areas we explored in that class. Thanks to a great “scaffolding” role model, Dr. Randall, my classmates and I finished the course with success.

A few thoughts come to my mind when I see these pictures, and when I pass this building on my way to the SOS Village:

1. Trusting your “support” can really depend on your perspective – there is no way would I walk up that ramp!

2. Successful “support” can also depend on your perspective  – maybe being supported by many small pieces of wood is safer than one big strong platform?

Your thoughts are welcome!


Yesterday, I returned to Children of Blessing Trust to follow up on the program’s use of the MedicMobile cell phone communication system Daniel and I set up with them in November. COBT is now using the MedicMobile system to inform mothers about the epilepsy clinics. These clinics are critical for the management of children with epilepsy, not only to monitor their medications, but also the children’s development and function. Because they are using the text messaging to notify the mothers, they no longer need to send someone out to the communities to inform them. This is especially beneficial for reaching the remote areas they serve. The designated lead mothers trained in November have been receiving these messages about the clinic and spreading the word to the other mothers in their village and nearby villages.
The MedicMobile program is now being managed by a new adminstrator who is competent using a computer and finds the program easy to administer. COBT plans further expansion of their satellite clinics and requested five more phones to expand their ability to use designated mothers to communicate with these other remote areas. The mothers are not yet sending any messages to the center. We discussed ways to facilitate this communication, to reinforce the mother’s training, and to build their confidence with this function of the system.
An unexpected benefit of the project expressed by the mothers in the project to the administration, is that the phone has given them the ability to communicate with family and friends (buying their own units for this). One could assume that this communication could contribute to their sense of empowerment and decrease the potential for being isolated as a mother with a child with a disability.
I have tried to focus on the user of this tool and allow the COBT staff and administration make decisions about its function, while facilitating an understanding of the potential uses of the tool. Children of disability are a vulnerable population – faced with health care inequity because of difficulties accessing service. The mothers of children with disabilities themselves are also a vulnerable population – challenged by meeting the needs of their children as well as overcoming the attitudinal barriers in society. The use of MedicMobile in a setting that serves mothers and their children with disabilities has the potential to reduce the vulnerabilities of these populations.
It was a busy travel day – a mini-bus ride to COBT in Area 25 on a bus that ran out of gas, a ride back to the main town, a walk to the Airtel distribution center to see if they had cell phones in stock (yes!), a long walk to my lodge to get the needed money, a walk back to the distribution center to purchase the phones, and a second mini-bus trip to and from COBT (this time with plenty of gas) to deliver the new phones. I slept well!

Mothers at Children of Blessing Trust

New families register for services

Many thanks to Loudoun County Public Schools staff and Loudoun Road Runner phone donors!

Have you ever thought about “disability” this way?
Or have you always thought that a person that is, for example, blind, deaf, or paralyzed is also disabled – by definition?

I have, only now, realized importance of moving away from the perception of disability as a characteristic of the person.

If the disability is not an attribute of a person, what is it?

The Report on World Disability (World Health Organization and The World Bank) defines disability as something that results from an interaction – between the person with impairment, and the society. It is the attitudinal and environmental barriers that hinder that person’s participation in society that create the disability. I don’t really like the term “impairment” because of the negative connotation. However, it helps distinguish between the person’s condition – for example blindness, cerebral palsy, schizophrenia, deafness, leprosy – and their role in society. Disability, then, is not an attribute of a person, but is defined as the interaction that results in barriers for that person to participate in society.

What would be a clear example of this interaction resulting in a disability?

A simple example would be a person who is blind. This person has a visual impairment. However, depending on the barriers in society (for example, attitudinal, physical, emotional, financial), he may or may not have a disability. If his workplace is accessible, reading materials are in Braille, he is offered equal financial opportunities, and he has a positive support system, he may be able to participate fully in society. Changing any of these interactions to create barriers could lead to a disability. The disability is in no way an attribute of this person. The same person who is blind could be considered to have a disability in one environment, and not to have a disability in another. It all depends on the interaction with society.

Does society (that’s us!) cause disability?

Peter Ngomwa (Disability Forum, Issue 1, Malawi) suggests, “A disability may be defined as a disadvantage or restriction of activity caused by contemporary societal organization that takes little or no account for persons who have impairments, thereby excluding them from participating in the mainstream of social activities.” And, he asks: “Why should it (disability) be caused by contemporary social organization?” I propose that it will take a huge shift for us to consider that our interactions result in a disability – but it is a shift that we are responsible to make.

If we could change the interaction between persons with impairments, what would our society look like?

More accessible buildings and schools…workplace flexibility for people of differing needs…. welcoming input from all people to meet our community challenges….I’d love to hear your ideas.

By changing these interactions, could we then reduce disability, even in the face of continued prevalence of conditions or impairments? Do you have hope for this in the future?

Here in Malawi, this discussion continues – encouraged by many organizations including the Federation of Disability Organizations in Malawi (FEDOMA) and Malawi against Physical Disabilities (MAP, formerly Malawi Against Polio). Although circumstances in the society in Malawi differ from the circumstances in the society in the US, this discussion has common ground. We share the same questions – perhaps with different perspectives and solutions – but the with same need to accept our responsibility for our society’s interactions with all people.

Federation of Disability Orgnizations in Malawi logo

Malawi Against Physical Disabilities logo

Five years ago…

June 25, 2011

I met Faith when she was just a toddler. Tawina was the stronghold of the family. And, John was facing illness, paralysis and an uncertain future.

Since then, the picture has changed. Faith is a smiling, playful, kindergartener. She loves to hold her dad’s hand when he walks. When her mom was sick, she helped her dad cook the meals. Tawina and John have dreams of a successful business, and a place in their local church community. John is independent in his home, keeps up with the news, and challenges himself to daily exercise.

We had a wonderful visit today at their home in Area 23 of Lilongwe. I am grateful for their hospitality, Tawina’s good cooking and their inspiring company.



Tawina, John, and Faith

John walking with Faith

Faith and a friend

SOS Village Celebration

June 24, 2011

The SOS Village in Malawi had a huge anniversary celebration yesterday – and it was an honor to be a guest. It started off with a parade of marching, singing students.

It was great to reunite with Miram, the physical therapist at the SOS Children’s Rehabilitation Centre. She is working tirelessly there – even in the face of cuts in the Rehabilitation Centre budget that have forced reductions in services and loss of all of the staff. She is the only remaining therapist, and has the support of only one rehabilitation technician.

Banner at SOS Village gate

SOS children marching and singing


More of the parade

The Summer Begins

June 23, 2011

Life will always provide reasons for concern. Each day, however, brings with it reasons for joy.

(Always We Begin Again, John McQuiston)

I have had a safe journey to Malawi – actually a very simple one. A flight from Dulles to Ethiopia (13 hours), a two-hour lay over in Addis Ababa, and a three-hour flight to Lilongwe. The airport at Addis Ababa is very chaotic, but I found a group of Malawians also trying to find the right gate and together we made our way. Ethiopians like to cheer when the plane lands – I am not sure what that means!

My bags all arrived, and I am settled at the Korea Garden Lodge in Area 3. Lilongwe was busy this afternoon. Most of the action was taking place at the gas stations where people, mini-bus drivers, cab drivers, tour bus drivers, and delivery trucks were waiting for gas. The stations were packed, and the lines were a half-mile down the road.

My plans for the summer are to spend this week and next in Lilongwe working at the SOS Children’s Rehabilitation Centre with Miriam Mwale, physical therapist. I am also going to be following up with Children of Blessing Trust about the MedicMobile project Daniel and I got off the ground in November.

At the end of next week, Elizabeth is coming back up to Lilongwe from Blantyre with her Rice professors – Dr. Richards-Kortum and Dr. Oden. They are headed back to the US, but Elizabeth is going to travel with me from Lilongwe to St. Gabriel’s in Namitete. With all of my luggage, I think this will be an easy cab ride….mini-buses and bike taxis are really tough with 150 pounds of luggage!

Elizabeth and I will be together at St. Gabriel’s for three weeks before she heads back to Houston then San Francisco. From July 24-30 I will be in Blantyre giving a short course to the physical therapy students at the University of Malawi College of Medicine, and a workshop for faculty and members of the Physiotherapy Association of Malawi. I will be at St. Gabriel’s again for about two weeks before I come home August 11.

Wow! The Lab-in-a-Backpack developed by Rice design team lead by Dr. Oden, and the portable microscope system for pre-cancer screening developed by Dr. Richards-Kortum were both on the World Health Organization’s list of 44 new and emerging health technologies. Congratulations!