It was a busy July weekend here in Deschapelles – the small town built around the Hopital Albert Schweitzer, about two and a half hours north of Port-au-Prince in the L’Artibonite Valley. On Friday, my local research assistant and I had four interviews scheduled in different locations throughout the valley. I had imagined that the people would have lived out in the mountains and outlying towns, so I thought it would be easiest for us to ride our bikes. However, it turns out all of the people live directly on the highway and in retrospect we probably should have taken a taptap, pickup trucks that serve as public transport – often carrying more than 25 people.
We rode our bikes to Liancourt first, which is about seven kilometres away and we rode the whole way on the highway – which has no shade like everywhere else around here. I’ve been in the shade so much since I got here, that I haven’t had to wear sunscreen – needless to say, I should have today! I got quite sunburned riding my bike around.
The first person we interviewed in Liancourt was a 31-year-old bilateral amputee who lost both legs when his house burned down when he was a year old. His name is Garioul Voltaire and his story was very illuminating. Since he was a child he has been getting around in a wheelchair and a cart that resembles a wagon with hand pedals similar to a bicycle. He is incredibly good at getting around – he gets himself to and from Port-au-Prince several times per month.
His story was interesting because he never stayed in the Hanger inpatient rehab program and has never completed his rehab as an outpatient, and therefore hasn’t even been given his prostheses. He perfectly exemplified the social determinants of health: When I asked why he wasn’t in the inpatient program he told me that it was because he has a young daughter that he couldn’t leave for an extended time because of lack of a social support network. When asked why he doesn’t commute to outpatient therapy sessions, of course it was because he doesn’t have money to take the taptap and moto taxi to get to therapy. Because of these factors, he still doesn’t have his prostheses that were made for him even though he claims he would like to have them.
Possibly the most interesting part of our discussion was when I asked him what he wants to do with his life. He told me that he would like to get more involved with his handicap organization. Apparently he started an organization but hasn’t really done too much with it. He doesn’t know where to begin or what they could do to help.
He said that he would like to help out with getting disabled persons bursaries or help them by buying merchandise to sell. He seemed to be quite discouraged but still had a great vision for the future and is hoping to find someone to help him realize his dream. I found it very inspiring to see how dedicated he was to his goal of helping other people with disabilities in the area here, despite being of such scarce means himself.
I thought that the next person we were going to visit was in Liancourt too, but when I talked to him it turns out that he is actually in Pont Sonde, the next town down the road, another six kilometres. He was going to get on a taptap to come meet us in Liancourt but I offered to go to him before I knew how far it was, so off we went!
Needless to say, by the time we got back I was exhausted! I stay up at the amputee village in a depot room beside the nurses’ station. I generally haven’t slept very well since I’ve been here – could be partly because we have no electricity and therefore no fan in 32 degree heat, or because I am sleeping on a desk that is too short and because I’ve had some problems with my bug net – this caused me a lot of problems sleeping after I killed a poisonous spider called a brown recluse in my room last week. But after that long day on a bike – riding more than 25 km, I slept like a baby!
My name is Dave Campbell. I am a second-year medical student at the University of Calgary. I am doing my six week summer elective in Haiti. Rather than doing a clinical observership for the entire time, I have decided to spend the first four weeks doing a research project. Under the supervision of Dr. Wilfreda Thurston (Community Health Sciences), I designed a study entitled ‘Patient Perspectives of a New Prosthetics Provision Service in Rural Haiti’. Prior to entering medical school I obtained a Masters degree in Medical Anthropology and I also speak Haitian-Creole fluently.
Following the earthquake on January 12th, a group of American philanthropists as well as the philanthropic arm of the largest prosthetics provider in the United States (Hanger Prosthetics and Orthotics) joined together with Hôspital Albert Schweitzer (HAS) to form the Haitian Amputee Coalition for Prosthetics and Rehabilitation (HACPR).This body functions out of a building on the HAS campus in the rural community of Deschapelles in the L’Artibonite valley. It is unique among the eight prosthetics providers in the country in that it provides inpatient rehab services. When patients come here to receive their limb, they stay on a small compound about a mile from the hospital and go to the rehab centre everyday during their stay.
My study is important in that it provides local feedback to the program directors that are now at a decision point for the future of the project. I am conducting interviews and focus groups with prospective and retrospective users of the service. I am also utilizing participant observation as a means of collecting ethnographic data with the current patients.
I live at Escale, the amputee village, and follow patients to the clinic most days and spend a lot of time with them in order to be seen as an insider and this has allowed me to observe their natural interactions in a way that would not be possible through more traditional data gathering methods.
The past two and a half weeks have been wonderful! As much as I love to study medicine, it’s hard to beat a life where my life is to talk to people who I respect incredibly.
I would just like to tell the stories of a couple of the people that I have had the chance to live with for the past few weeks because they are inspiring and show the strength of the Haitian people. I have used pseudonyms to protect their identity.
Magda arrived here around the same time that I did. She is a middle-aged woman who is a below-knee amputee from an injury sustained in the earthquake. She always has such a wonderful demeanor about her, she is a very positive person and is truly a strength to her peers both during therapy sessions and just during the day-to-day lows that many people experience.
I knew her for 10 days before she really told me her story. One night she opened up about herself. She was in the market selling her wares during the earthquake. A pole fell and crushed her leg. Unfortunately at her home, not too far away, the situation was worse. Her husband was there with her two sons. Her husband and one of her children died, and the other boy had his hand amputated. Here is a woman who was quite poor to begin with who has now lost her leg, her business, her home, and most of her family–yet even with the extensive interactions I had had with her, you would never have guessed that this was the case. While she did tear up while telling me the story of her experience with January 12th, that was the only time I ever saw her without a huge smile on her face.
Magda was discharged from the program last Thursday. I thought of Magda today because I saw her earlier when she came in for a follow-up appointment–she was walking much better on her prosthetic limb and didn’t even bring her crutches with her for the appointment. The therapists were astounded by her progress in the past week while being away from formal rehabilitation. She said that she has to learn to walk again so that she can go back to selling her wares to support her and her son. She knows he is going to have difficulty being able to work in manual labour (which comprises the vast majority of jobs here), and wants him to go to university to get a good job. She realizes that without an advanced education, someone with a handicap such as his would struggle to get by in this environment.
I never cease to be amazed at the courage and resilience of the Haitian people, and I said that even prior to the earthquake. The citizens of this country have never had it easy and it is truly impressive to see how they deal with their enormous challenges with faith and hope for the future.
“Canada’s First Embryo Donation Service”: The Unregulated Business of Creating Children for Separation from their Families
The Saturday, April 3 edition of the Globe and Mail gave front-page coverage to the announcement that Canada’s “first embryo donation service” will open for business. A Hamilton, Ontario enterprise proposes to charge prospective parents $13,500 for connecting them with people who have ‘left over embryos’ in the freezer. The Executive Director says, “We are not there to make a whack of money off this. It’s not about making money.”
Trading in the origins of human life, this enterprise appears unimpeded in pursuing its goals. But enterprises that risk causing significant negative effects on stakeholder groups and society at large must typically obtain regulatory approval before embarking on a new scheme. For example, a company would need to demonstrate before a public body how it would satisfactorily mitigate any harmful effects before engaging in an oilsands project.
By contrast, this Hamilton enterprise has decided to do as it wishes and apparently there is no one to stop it or, at least, to slow it down by asking difficult questions.
The questions are many: What evidence currently exists that the deliberate creation of children to separate them from their genetic families is good for children? How does the Hamilton agency propose to collect data on the psychosocial outcomes for children of what is, in fact, an experiment? And why should we accept the organization’s claim that infant adoption and embryo donation are morally equivalent?
They are not morally equivalent.
Adoption usually occurs when pregnancy is unintended. It aims to minimize the harm of a sad situation – that the genetic mother cannot rear her own child. Adoption is usually a last resort for the mother who surrenders her child to the care of others.
By contrast, the Hamilton outfit plans to initiate a pregnancy with the very purpose of separating the child from its genetic parents and full siblings who are its family. The purpose isn’t to find a good home for a baby; the goal is to create a baby for a home – a home in which the child’s genetic parents and siblings will not live.
Demand for babies to adopt is high and supply is low. Adoption agencies may have less work than they are able to perform. So embryos in the freezers of the nation create a new opportunity. As a surrogacy broker once said, “I saw a demand and I knew I could fill it.”
Thus the Hamilton outfit has announced that it will experiment on the health and wellbeing of children; and this announcement has received free, national publicity.
Where are the voices of donor-conceived persons, one of whom has lamented that she went from being a bundle of joy to a person of sorrow? Why do we not hear from these adults first about the effects on them of being conceived for separation from their kin?
Of course, the Hamilton agency has said that the prospective parents must permit an open relationship with the biological parents because it is “crucial” that “children must know their genetic origins.”
But this assertion seems disingenuous. If knowing your genetic origins is crucial, then why deliberately rupture the genetic and social aspects of parenting? Moreover, who would be in a position effectively to advocate for the child? The rearing parents would have no legal obligation even to tell the child about its unusual conception or that it has a genetic family elsewhere.
Canada has affirmed that every child has a right, as far as possible, “to know and be cared for by his or her parents.” Canada has agreed to respect the right of the child “to preserve his or her identity, including nationality, name and family relations as recognized by law without unlawful interference.” Where children are illegally deprived of some or all elements of their identity, Canada has promised to “provide appropriate assistance and protection, with a view to re-establishing speedily his or her identity.”
Canada is not doing much of that right now. The federal Assisted Human Reproductive Agency appears paralyzed as it awaits the Supreme Court decision on the constitutionality of major portions of statute under which it was created. Likewise, Parliament seems reluctant to begin its review of the Assisted Human Reproduction Act, a statutory duty it has had for more than one year. Such a review should, at minimum, cause Parliament to reverse its current acceptance of donor anonymity and the possibility that the donor-conceived might not ever learn the truth about their origins. After all, Parliament has recognized and declared that the health and wellbeing of children is the highest priority.
So, for Canadian regulation, one might need to look elsewhere – to the professional organizations that govern physicians. Provincial colleges of physicians and surgeons have ethics codes that require physicians to consider the wellbeing of society in matters affecting health, and to refuse to participate in or support practices that violate basic human rights.
Indeed, the Canadian Medical Association has expressed concern about assisted reproductive practices given that they aim to create children. It has stated unequivocally: “The Association believes that a child is entitled to the same respect and to the same treatment as all other people. It, therefore, wishes to go on record as maintaining that if developments in the domain of reproductive technology cannot sustain such a perspective, if these developments reduce the child to the status of an object, or if they require that those who are involved adopt an instrumentalistic outlook toward children, the Association opposes such developments fundamentally and unalterably.”
The Hamilton agency’s announcement is certainly news but it is doubtful that it is good news. Why should we applaud yet another means by which children are created to be reared apart from one or both of their genetic parents?
These children grow up to be adults. Such adults (including some of the undersigned) already exist. Many are asking how anyone could have let this happen.
Juliet Guichon is Senior Associate in the Office of Medical Bioethics, and Ian Mitchell is Professor of Paediatrics in the Faculty of Medicine University of Calgary. Michelle Giroux is Associate Professor in the Civil Law Section, University of Ottawa. Olivia Pratten, a Toronto journalist; Barry Stevens, a Toronto filmmaker; and David Gollancz, a solicitor in London, England are all donor-conceived persons and members of the International Donor Offspring Alliance.