The contrast between reading about research being done on neurobiological processes and treatment of heard voices (TMS, antipsychotic drugs, lateral processing, connectivity, & neuro-stimulation studies) and the experiences & strategies embodied by had by voice-hearers is stark. The different ways of knowing about voice hearing lead to radically different strategies for dealing with this phenomenological experience. Whatever the cause and wherever voices are “rooted” in the brain’s functioning, strategies of support, trust in the hearer, and mindfulness practice have clearly revolutionized treatment. This resonates with my own experience searching for feeling well, where “feeling better” hasn’t usually meant I’ve gotten rid of anxiety, past trauma, or fears. The question has been, “How can I live with this, if it never goes away?”
I couldn’t help but wonder who funds the research that McAdams’ chapter on neuroscience and voices outlines. Following the money may answer why research that leads to drug development is prioritized over the effective strategies employed by voice hearers that account for their environmental histories. When hundreds of dopamine and serotonin inhibiting anti-psychotic medications barely work but we keep developing them, there’s always a reason. Not to say that neuroscience can’t help us understand this phenomenon, but it seems we have an ethical duty to ask the questions that will help relieve the intense suffering that many voice hearers experience, and also fund research into strategies that have already proven to have great positive impact on people’s lives.
Neither strategy is incorrect, nor complete. The HVN movement struck me as having many parallels with ACT UP and TAG AIDS activists in the 80s, where people dealing with high-stakes symptoms, poorly understood causes, and ineffective treatments inserted themselves as essential to solutions to a deeply stigmatized and feared condition. Similarly to AIDS, destigmatizing both conditions by acknowledging its existence to oneself and others instead of hiding one’s status or ones voices (hiding what is already hidden), rendering its presence visible in medical and social fields, and creating space to discuss its effects on lives has been invaluable to having a livable life with both HIV and voices.
Clearly, assigning potential meanings to why voices arise and lessons they may teach seems to have helped the case of Helen Chadwick and many others – alleviating the experience of arbitrary torment. Chadwick questions the source behind the lessons she’s assigned to her voices to make sense of them, asking if they’re “too obvious” – as this integration may be desirable to even if it’s not accurate, because it’s been helpful. A complete prioritization of alternate meanings & a rejection of the study origins of voices in neuroscientific research and drugs is not my point, but the HVN’s success has shown that a reevaluation of a system that positions hospitalization and medication as the only answer is clearly a moral imperative. Whereas the origins of HIV are also still not fully understood, desperate activists with everything at stake held institutions to a moral imperative to acknowledge the impact their intellectual/medical gatekeeping had on thousands of people, and started the process of destigmatization so those with HIV can live livable lives. Perhaps these medical activists have much to learn from one another.
4 responses so far ↓
Shona Mari Sapphire // Oct 22nd 2013 at 11:07 am
Response to Yana Walton:
This is an important question of how research and treatment protocols are funded as relevant in assessing how the narrative of the mentally is constructed, or if this is even possible. As McCarthy Jones points out, “…brains do not hear voices, people do.” (191). It seems difficult to insert the cultivation of a phenomenological narrative on any “disordered” group, whether physiologically or psychologically, into mainstream medical research, due to the value systems being employed. The concept of moral imperative you mention poses an interesting question in analyzing the direction of the mental health care system at large.
Jason Scaglione // Oct 22nd 2013 at 5:10 pm
I deal very closely with the American healthcare system on many levels, both personally and professionally. Indeed, it is beyond need for reevalution.
As might be expected (given our consumerist baseline) the whole model is built around the idea of treatment as a product and health as commodity: we talk about “management plans” and “adherence” and “patient retention”—the “care” part of healthcare is vestigial metaphor. The angle here of patients taking ownership of their own standards of care is interesting and powerful, and I wonder how such specificity might drive broader impact.
Gabriel R. Seijo // Oct 22nd 2013 at 7:29 pm
I believe you hit the spot by thinking about who funds MacAdam’s research, because it is a question that can be made for all research that is being developed, especially in the medical and analgesic arena. Money runs the world, and behind it are the owner’s interests. The HMV seems as the beginning of what could be a revolutionary jolt to the present psychological and neuroscientific paradigm.
Kristina Bodetti // Oct 23rd 2013 at 3:27 pm
You hit the nail on the head twice; with the questioning of funding and the effects of stigmatizing illnesses. I was personally, more strongly struck by your assessment of stigmatizing. If we want people with this life changing illnesses to get better and to live well we can’t treat them like they are somehow less of a person. It also true, like you and the readings have said, that giving these people the opportunity to feel normal will have a positive effect on their recovery and lives.