"Emmanuel's Gift" (2005)

Another prerequisite of Disability in a Global Context is to watch the documentary  "Emmanuel's Gift" and write a reaction to it. The movie was on reserve at NYU, but I chose to purchase it and stream it from Amazon for $5.99. The following is my completion of that assignment. 

Emmanuel Ofosu Yeboah is a young man who was born in 1977 with a congenital disfigurement of his left leg in a small village in Ghana. 10% of citizens in the country of Ghana are disabled. The disabled are considered to be second class citizens. Disability is seen as a curse or a punishment from a deity rather than having a biological origin, and therefore the child’s deformity was seen as shameful. Emmanuel’s father deserted his family after Emmanuel’s birth, plunging the family into poverty. Other people told Emmanuel’s mother to poison him or leave him to die. Emmanuel’s mother, Comfort Yeboah, provided what she could to him, but she was sick. Emmanuel had to drop out of school at age 13 to support her. He earned $1 a day selling vegetables. When he was still in school, he used to rise before dawn to polish 20 pairs of shoes a day before going to class. Children in Ghana have to carry their books, chairs, and desks with them to school if they're lucky enough to have those supplies. Being disabled, therefore, is a great limitation for a child. Emmanuel grew up without running water or electricity. A lack of immunizations in the country result in many people with movement disorders and blindness. Emmanuel traveled to Accra, the capital of Ghana, a city with a population of 3 million, to earn $2 a day for his family. He could have earned $10 a day if he begged like the other disabled people residing there, but he was too proud to do so. His mother died of her abdominal illness at age 37. The life expectancy in Ghana is only 61 years.

At one point as a young man, Emmanuel wrote to a grant asking for a mountain bike. Because of the unusual request, he piqued the curiosity of those fulfilling requests. He was given a couple of shirts, bike shorts, and a helmet with the bike. Emmanuel proceeded to bike 600 kilometers across the entire country of Ghana, one-legged. His aim was to show that disabled people were capable of doing more than sitting on the street corner and begging (as is expected). He was followed by the media as he completed the ride, and the coverage received international attention. A United States surgeon amputated his vestigial leg and provided him with a prosthetic, free of charge. After PT, and within two weeks, he was riding his bike again after the surgery. His first couple of steps with the prosthetic brought tears to my eyes. Wearing two shoes at the same time and trousers were huge accomplishments to Emmanuel. Then, at a ceremony in his home town, his father made an appearance. This was 26 years after leaving the family. He had remarried and raised seven other children, stating that he had left earlier due to “financial difficulties.” Whatever the case, Emmanuel made amends.

Emmanuel’s mission is to allow the disabled to be employed and to improve mobility of the disabled people in Ghana. He built 100 wheelchairs with the help of volunteers and brought them to his home town, but 100 wheelchairs was not enough for all of the people who needed them. Nike presented Emmanuel with the Casey Martin Award and a $50,000 contract to provide school money, adaptive equipment, and assistance to those with disabilities. It’s a large figure in the USA, but in Ghana the sum is astronomical. I looked up the average annual Ghanaian income in Cedi, and converted it into the equivalency of USD. As of December 2013, the average income is $520.  Nike’s contract, therefore, was the same amount as 20 families’ lifetime savings – or 96x the average Ghanaian income.

Emmanuel made groundbreaking progress in a country where little legislature for the disabled existed. He encourages the disabled to advocate for themselves as workers, and wants to get them off the street. I found the account very inspiring. I think it took a lot of courage for Emmanuel to approach the country leaders and tell them what the disabled people needed. Normally, disabled people are prohibited from sharing the same space as royalty in Ghana. Emmanuel set the stage for the first disabled attendants to be allowed in the presence of a king’s court. The king spoke to his people about the need for disabled people to work and live fulfilling, independent lives. Emmanuel’s story inspired Jim MacLaren as well. MacLaren was an American man who suffered from a C5 [neck] fracture during a bicycle race after losing a leg in a motorcycle accident in NYC. He started an annual 56-mile marathon in the United States.

Emmanuel also helped to fund the start of a school for disabled children to attend. I was moved by this component of his success. Disabled children were previously left alone at home while their parents went out in the community to work. Now these children were empowered to attend school, enlighten themselves, and become more knowledgeable citizens. I hope that because of Emmanuel’s expedition, many other disabled children find the strength within themselves to demand the rights that they deserve in Ghana.

"The Spirit Catches You And You Fall Down" (2012)

          To prepare for the trip, there was a requirement that I read a book from a list provided to us. The book that I chose, "The Spirit Catches You and You Fall Down", was written by Anne Fadiman. Fadiman tells the account of Lia Lee, who is a Hmong child suffering from epilepsy. Lia's treatment is in the hands of both her traditional refugee family from Laos and the abilities of modern medical doctors at a hospital in California. Her family believes in more traditional medicine. Doctors have miscommunications amongst Lia's family, and Lia's family is noncompliant with western medicine methods. This is shown by their reluctance to allow doctors access to Lia at first, and not giving her seizure medications when she needed them later. Additionally, there are language barriers in place. Lia's family rests on the system when it comes time for payment of services rendered. Child services comes into the picture at one point and forcibly removes Lia from her family. At the end of Lia's story, ultimately, the clash results in Lia's comatose state (brain death). The book promotes cultural sensitivity. 

          I also read another book entitled "Do You Believe in Magic?" by Paul A. Offit, M.D. last month. Offit is a self-proclaimed medical expert and health advocate who writes an "impassioned and meticulously researched expose of the alternative medicine industry" (from the dust jacket's inside cover). Offit goes into detail about multivitamins being tested in clinical trials and being shown as not having clinically significant differences; acupuncture; medical personalities that are given wide coverage on daytime television but are interested only in making a profit, etc. He also discusses the placebo effect. His bottom line was that it was morally repugnant to seek alternative therapies which are not tested and can even cause harm/death to the patient over medicines which have been subject to RCTs. He explains that if there is no harm to the patient done, and the family of the patient doesn't become bankrupt as a result of the alternative treatment, there is no problem in trying out "alternative" medicine. He clarifies though that "there is really no such thing as alternative medicine: there's only medicine that works and medicine that doesn't."

          Yesterday when Dr. Offiong Aqua gave us a brief overview of medicine in West Africa, he said that the middle class (if there even was one) had better access to private hospitals and were consumers at the local medicine stores (if they even had them). Only the very poor relied on traditional medicine. Lia Lee is an example of a very poor immigrant whose family relied on the Hmong religion/medical standards. It was interesting to think of what could have become of her had she been the child of a wealthier family who had better access to medicine. They also immigrated in the 80's -- nowadays, I would be willing to bet her family would be more integrated into American culture. Social standing and assimilation are both factors which I felt contributed to Lia's family's perspective on her care.

          Lia Lee’s plight is relevant to disability. It was easy to see why the book had been chosen as a prerequisite read for taking this course. I had first heard of it when Professor Perr promoted it in my first-year class “Foundations of Occupational Therapy.” Intrigued, I picked it up and read it at that time. Working amongst different cultures is something that intrinsically fascinates me. Is there some way that an excellent therapist can be a diplomat for western medicine and provide some room for a traditional family to also add their views into treatment? Looking for an answer to that question is complicated. The book mentions one possible solution, saying that a better approach would be to apply “a little medicine, and a little neeb.” (Neeb refers to Hmong traditional religious treatment.) Provided that no harm is done, I feel like this is the best way to give holistic care to patients. I hope that by being exposed to cultures I am not familiar with I can learn to communicate and balance on this fine line. Overall, it would improve my abilities as a practitioner.

          I feel like I cannot rephrase the extremely eloquent epilogue of Offit’s book, so I am going to take the liberty of quoting it here for its relevance to both Lia Lee’s story and alternative medicine:

          “Albert Schweitzer was a musician, philosopher, theologian, and physician. In 1912, using his own money, he established a clinic in Lambaréné, Gabon, in western Africa. Within nine months, more than two thousand natives had come to see him. Schweitzer gave them quinine for malaria, digitalis for heart disease, and salvarsan – the first antibiotic – for syphilis. When patients came to him with strangulated hernias or abdominal tumors, he anesthetized them with chloroform and treated their pain with morphine. Albert Schweitzer brought modern medicine to a small part of Africa.

          Toward the end of both of their lives, Normal Cousins, author of Anatomy of an Illness, met Albert Schweitzer. “At the dinner table of the Schweitzer Hospital at Lambaréné,’ wrote Cousins, ‘I had ventured the remark that local people were lucky to have access to the Schweitzer clinic instead of having to depend on witch-doctor supernaturalism. Dr. Schweitzer asked me how much I knew about witch doctors. I was trapped by my ignorance. The next day the great doctor took me to a nearby jungle clearing where he introduced me to an elderly witch doctor.’

          ‘For the next two hours, we stood off to one side and watched,’ recalled Cousins. ‘With some patients, the witch doctor merely put herbs in a brown paper bag and instructed the ill person in their use. With other patients, he gave no herbs but filled the air with incantations. A third category of patients he merely spoke to in a subdued voice and pointed to Dr. Schweitzer.’ On the way back, Schweitzer interpreted what they had seen. The first group of patients had minor illnesses that would resolve on their own or for which modern medicine offered little. The second group had psychological problems treated with ‘African psychotherapy.’ The third had massive hernias or extrauterine pregnancies or dislocated shoulders or tumors – diseases the witch doctor couldn’t treat – so he directed them to Dr. Schweitzer.

          Schweitzer described the value of the witch doctor. ‘The witch doctor succeeds for the same reason the rest of us succeed,’ he said. ‘Each patient carries his own doctor inside him. They come to us not knowing the truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.’

          In Gabon, both Albert Schweitzer’s modern medicine and the witch doctor’s ancient medicine had their place. Schweitzer offered specific treatments for treatable diseases, and the witch doctor offered placebo medicine when nothing more was necessary or available. Both recognized the value of the other. Such is the case with today’s mainstream and alternative healers: both have their place. The problem comes when mainstream healers dismiss the placebo response as trivial or when alternative healers offer placebos instead of lifesaving medicines or charge an exorbitant price for their remedies or promote therapies as harmless when they’re not or encourage magical thinking and scientific denialism at a time when we can least afford it.

          As consumers, we have certain responsibilities. If we’re going to make decisions about our health, we need to make sure we’re not influenced by the wrong things – specifically, that we don’t give alternative medicine a free pass because we’re fed up with conventional medicine; or buy products because we’re seduced by marketing terms such as natural, organic, and antioxidant; or give undeserved credence to celebrities; or make hasty, uneducated decisions because we’re desperate to do something, anything, to save ourselves and our children; or fall prey to healers whose charisma obscures the fact that their therapies are bogus. Rather, we need to focus on the quality of scientific studies. And where scientific studies don’t exist, we should insist that they be performed. If not, we’ll continue to be deceived by therapies whose claims are fanciful.

          Making decisions about our health is an awesome responsibility. If we’re going to do it, we need to take it seriously. Otherwise, we will violate the most basic principle of medicine: First, do no harm."

Shots

For those of you who were wondering whether or not to spend the extra money to get the immunization from your own doctor, as I was... Don't! Unless you are out of time, and cannot get an appointment at NYU Health Center. I was lucky to get in because of a cancellation, but I overheard the receptionist telling another student the first available appointment wasn't until after January 5th (which is my arrival date in Africa).

The global travel counseling session takes approximately an hour and you'll learn about what's safe to eat (thoroughly cooked food which is prepared in front of you) and drink (boil your own water or drink bottled). You'll learn about petting stray dogs (Don't. Rabies can be asymptomatic). You learn about all the options for medication, as well as the side effects. This is very valuable information. For example, there are two options for anti-malarial treatment, and I went for the more expensive option. At $6-8 a pill, and not being covered by insurance, it's going to run me a fair amount of money. However, I only need to take it for 7 days after my return to the States. The less expensive option requires that you take 28 days worth after your return and you're likely to have extremely realistic, violent nightmares during the course of taking the pills. 

I did go the less expensive route with the Typhoid inoculation. I decided to take 4 pills (one every other day) rather than get a shot because it is less expensive and lasts for five years. The shot option only lasts for three years.

So in total I got five shots: Meningitis, Yellow Fever, HepA #1, Influenza #2, & Tetanus-Diphtheria. I was also given Immodium for "traveler's diarrhea" (to be prepared) , and a script for Atovaquone/proguanil (Anti-malarial) which will be ready on Monday. 

Orientation Day

Welcome to my first blog entry! Today was my Global Intersession Orientation makeup session! I attended because I had been previously engaged in Connecticut over Thanksgiving Break. Nov 22nd I was doing a Level I Fieldwork at Thriving Kids Therapy with Erin Rose, OTR/L. I had a fantastic time, but was concerned that I couldn't make the orientation. No worries, there are two makeup sessions, and since today is a Monday schedule at NYU, it was convenient for me to start preparing for my study abroad experience.

Orientation consisted of receiving a complimentary Steinhardt luggage tag and a folder with valuable information within. Amongst the packet were several sheets of paper. They included information about booking the flight, what vaccinations were necessary, what the hotel address and contact information is, how to apply for a tourist (not a student) visa, what vaccinations you’ll need, what kind of weather to expect (70-80 degrees), what school policies there are (don’t drink, do drugs, or have guests over), what the exchange rate is, how much to pack (one suitcase), how to get financial aid, how to not look like an American tourist, etc. The most important documentation we were given was the visa letter, which will be included with the tourist visa application. That takes approximately 3 days to process, according to the Ghana consulate website: http://www.ghanaconsulatenewyork.org/

After Orientation I had passport photos taken ($12 at Walgreens at 14^th Ave & 4^th) for the visa. I also scheduled an appointment with NYU Health Center to get stuck in the arm with the Yellow Fever vaccination (and my flu shot for the year, while I’m at it). A note about this – insurance doesn’t cover it. NYU wasn’t able to get me an appointment until Friday (and only then because of a cancellation). They informed me that other doctor’s offices may not be able to get me the vaccination if I shopped around. Which, I did – CityMD at Union Square will give it, but it costs $150 to administer. NYU Health quoted me $105, so I’m waiting the extra few days to save the money. If time were a factor, there is the option to look elsewhere.

I’m going to be uploading photographs from my trip to my Instagram account, which can be found at this link: http://www.instagram.com/outofambrosia/ . I’ll also be # hashtagging the entries with the following: #SteinhardtGhana #DisabilityGhana and #NYUAccra. The Global Office is having a photography contest, and in exchange for my photographs being used to promote NYU’s program, I could win a $50 bookstore gift certificate. It’s easy to upload to Instagram versus uploading to Picasa or another site, and I’ll put a link to my IG account at the top of the blog page.

I also booked my flight today via Delta airlines and paid approximately $1000. This was done in a rather unique way – my father transferred some SkyMiles to my account to the tune of 1 cent per mile; he used approx. 160,000 miles to pay for the trip in total. The $1000 results from the fees incurred from transferring SkyMiles and taxes. It’s actually a very good deal; for the round trip we were expecting to pay 2/3rds as much as we did. If I sign up for a Delta credit card I can waive baggage fees, also, and save another $100, according to Dad.  Following this, NYU had me fill out a survey to let them know when to pick me up at the airport.

First class meets Friday the 13^th from 4:00 to 6:00.