By MariJo Vázquez
I have always been really interested in the capacity we have as humans to take care of and heal others – a capacity that I believe comes from our ability to heal ourselves. This interest led me to also take an interest in medicine, in how this science, this art, advanced to such a point that it has had miraculous effects on the survival of humanity (or rather, of part of humanity, since those who do not have resources unfortunately still do not benefit fully from this progress).
When I was diagnosed with HIV, my interest became much more personal, not only because I had become the subject of medicine, but also because I started to see for myself the extent to which health professionals (doctors more than nurses) did not think of me as a ‘subject’ of care, but an ‘object’ of care, in the sense that the focus was always only on the affected part of my physical being, splitting me and my life into fragments. The people who were so well trained in their medical profession did not consider me a person but a container of disease.
This led me to explore what was missing in this doctor-patient relationship. What was it in the health service environment that made me feel so lacking in control? It was as though at the point I needed medical attention I stopped being a person and became a patient, without a voice or a vote, a recipient of the professional knowledge of doctors and nurses, all for my own good of course, but without allowing me to have an opinion. I did not take easily to submitting to the dictates of someone who did not even take the trouble to listen to me.
As the years passed, my knowledge of myself, of HIV, and of health in general gave me the answer that was becoming increasingly evident: health professionals impose their technical knowledge over and above my experiential knowledge.
I saw how well-intentioned researchers deal with their ‘research subjects’ without even acknowledging the transfer of knowledge they have acquired directly from lived experiences. Yet what better empirical method could there be than through lived experiences? We don’t get this knowledge from books, we don’t study it at university, but it cannot be denied because we feel it in our own bodies and we analyse it from our personal circumstances.
I realised that what seems to happen is that health professionals do not think of their patients as whole people, as their equals. Simply put, they see themselves as superior because they consider their knowledge to be more valid than ours.
A few years ago, I took part in some doctoral research by Maria who quickly became a friend. I remember that in our interview I spoke enthusiastically about the participatory research we were doing within ICW, while ‘formal’ research continued to extract information from communities for studies which were then presented at international conferences, while the people who had contributed their experiences didn’t even get to see how their contributions were used. No-one had consulted them to ask what was important to them, or to invite them to collaborate in the study design, or anything else. I was indignant about this disdain for their value as humans and this expression of inequality.
Maria listened to me carefully, but said nothing. We carried on with the interview, and with subsequent interviews, but little by little our mutual respect and friendship grew.
She invited me to go to hear her defend her thesis, and there I discovered that my interview had been an important turning point which had changed her perspective. She had paused to reflect that, despite all her friendliness and her appreciation for the people who were informing her thesis, the reality was that she had done exactly what I had described: she had chosen the theme of her research, she had designed the questions… In the introduction to her thesis, she set out what she had come to understand about the relationship between the researcher and the informant, and said that for her it would never be the same again.
Later, Maria went to coordinate a Masters in Health at the Autonomous University of Barcelona (the UAB). This course was for medical and nursing students. She asked me to lead a module on community research in which I could discuss with students the benefits of this approach. She then started including sessions on ‘patient narratives’ in her courses, and invited me to speak about various aspects of my experience with the health system. Together with the students we would draw out knowledge that would help them to connect on a more equal and human footing with the people they would be caring for.
That led to the introduction of a small programme on ‘expert patients’. In this programme there was more opportunity to share knowledge, to illustrate with lived experiences the theoretical concepts students were learning about in class. Seeing a patient in the place of authority as a teacher was important for the students as future professionals. They ended up seeing the patient as the teacher they could be in aspects of care, instead of seeing patients only as the object of care and, in a way, as victims.
Many of the expert patient initiatives I have come across in heath settings focus on training patients so they can help other patients with the same disease. In a way, it is an acknowledgement of the important work done by people in peer support groups and their success in providing peer support. But in my view, a further step is needed to put knowledge derived from lived experience – and the analysis of this knowledge by the person who has lived it – on an equal footing with other forms of learning.
This process which I went through with Maria is not unusual in my experience as an activist and a defender of rights. I started to realise that my work relationships are mainly with people I trust, friends with whom I enjoy making and sharing discoveries and exploring new horizons, each from our own life experiences. I began to understand the importance of those trust relationships, which are not based on social or professional status, but on our personal qualities, with mutual acknowledgement of our respective areas of knowledge, even when they are not the same. In fact, the capacity we have to incorporate other types of knowledge into our thinking leads to better understanding and more human relationships, and makes our projects more likely to succeed. As we say in my country, ‘four eyes see better than two’.