Editor’s Note: This article originally appeared on Mad in South Asia. The author, Indian doctoral scholar Neha Jain, writes about her field work and wonders what kind of ‘care’ and ‘help’ are possible in the absence of real consent.
On the footpath, in a group of homeless people, sits a middle-aged saree-clad woman in absolute silence, looking nowhere. She sits close to her two giant white bags. She was brought in along with a salwar-kameez wearing middle-aged woman. In a group of 14 people, they were the only two women. The social worker gave both of them some tea and biscuits as they waited for their mental status examinations to be done by the psychologists. The saree-clad woman sipped her tea quietly and put the two biscuits in one of her giant white bags. Finally, it was her turn. The psychologist asked her name. She refrained from responding, just silently staring at the face of the psychologist. Then the social worker asked her name in Kannada, and she responded “Lata.” The psychologist asked her name in Kannada, but received no response again. On being told by the salwar-kameez woman that she called her “Afrah”, she recorded it as Afrah. When asked her age, Lata said that she was 3 years old. Hearing this, the psychologist laughed and said, “Look at you! You obviously cannot be 3 years old!” and then recorded her age as 40 years. Hearing this, Lata turned her face away and now refrained from meeting her eyes. The psychologist tried building rapport with Lata but in vain.
Lata was later referred to the women’s shelter run by the organization. When they took her there, they did not take her two big bags. Lata had kept the biscuits in one of her bags. I wondered what else stayed in the bags that remained unchecked by the social workers and abandoned on the streets. What did she carry that allowed her to live on the street as a woman? What did the contents mean and represent for her? Apart from her name, what else did she want to convey that was silenced by the mocking laughter of the psychologist?
Interested in researching mental health care experiences, I am currently doing fieldwork to understand the diverse nature of care and recovery within different mental health settings in India. This is only the first month of my fieldwork, and I wanted to share one particular event that has stayed with me and is constantly making me question what care and consent look like in the mental health context, especially for people who are homeless.
Beside the most luxurious mall in the city is an alley that houses a posh private veterinary clinic as well as a Girls High School. It is in this alley, alongside the footpath that shares its boundary wall with the mall, where a medical camp was organized for Homeless People with Psychosocial disabilities (HPPD). People in their most vulnerable states, unhygienic, wearing layers of clothes with long-matted hair, some restless, some muttering to themselves, others staring at the sky or looking nowhere, sitting on chairs and some on the ground, were being spoken to by well-dressed people, like the passersby on the street.
It is a sight that grabs the attention of the passersby naturally, but none seem moved enough to inquire about what’s going on.
How the Homeless Are “Cared” For
The medical camp intends to provide mental health services to the homeless. The camp involves multiple steps of “caring” and helping the HPPDs. First, they are brought in by the social workers to the location of the medical camp. Then, the psychologists of the team conduct the mental status examination of the clients; thereafter, the social workers help the clients become clean by helping them shower and dressing them in fresh clothes. In the case of men, this involves an additional step, which is cutting hair and shaving beards. After this, the psychiatrist checks each client and provides medications. Lastly, each client is offered a meal and is then dropped off at their usual location of stay on the street by the social worker. This sounds like a much helpful and almost “noble” practice when read without the intricate details of how these “caring” activities materialize into reality. The translation of the activities to reality made me wonder what empathetic and dignified care even means.
For the homeless people who are living on the street, the medical camp is also organized on the street itself. It is in full public view amidst noises from the passing vehicles that a mental status examination is being conducted. Them showering, cleaning their bodies, getting dressed in fresh clothes is happening in front of the public-eye. Living on the street as a homeless psychosocially disabled person and then being “cared for” in full public view again on the street made me wonder, do they not deserve dignified care? It made me think, what would I think if I were given “treatment” for mental health on the street where my life, body, and lived realities are exposed to the world to gawk at, record, click photos, and leave?
The mental status examination being conducted by three different psychologists has three different flavors. Some listen closely, make a provisional diagnosis, and try eliciting information by building rapport. Others don’t. These others barely try to establish rapport, almost force the individual to speak, do not listen to what is being said, and smirk when the response is inappropriate.
How does one conduct a mental status examination of a homeless psychosocially disabled person without establishing rapport? How does the mental status examination happen amidst the noise on the street, the intrusive looks of the passersby, and the invasive clicking of photos of their faces? How does one provide a valid diagnosis of their disability in just one conversation of barely 20 minutes, without any prior monitoring or recording of any case history due to the unavailability of sources of information? How important is the diagnosis-making activity when the person is too scared, distracted, or restless to engage in a conversation?
The social workers and psychologists hurry to get the clients “ready” for a checkup by the psychiatrist. The psychiatrist arrives on the spot only when most clients have been checked by the psychologists and showered, cleaned, and dressed by the social workers. The psychiatrist check-up happens in a closed room. As the doctor arrives, there is a sudden shift of expertise in the room, with the doctor now taking center stage. With the doctor occupying the seat on the table, the three psychologists stand by the table during the entire duration of the check-up of all the 14 clients present at the medical camp. The doctor barely spends more than 3 minutes with a client. He is quick to prescribe medications and offers advice to psychologists for better history taking and conduction of mental status examinations. He also says, “Let’s not over-diagnose” in Lata’s case, who uttered no other word except her name in front of the professionals.
However, the doctor also did not hesitate to change the provisional diagnosis of “schizoaffective disorder” provided by the psychologist to “bipolar disorder” without any symptom presentation for “bipolar disorder.” In the case of another client, medicines were still prescribed even when none of the professionals could understand one single word of what the client was saying, as the client’s language was unknown to them. They detected from his facial features and his accent that he must be Kashmiri, but no effort was made to bring in resources to help this client better or get closer to their truth.
In addition to this, the medicines prescribed by the doctor in just one sitting with a short conversation fell into the list of the medicines procured by the organization conducting the medical camp. The medicines procured by the organization are the ones that are readily available and cheap. The social workers suggested the doctor prescribe low dosages and keep the number of medicines to be low. However, there is no discussion on how the effects of the medicines will be monitored on the client who is living on the street.
The organization calls its program client-centered and considers it to be delivering social justice. However, as an outsider, I fail to see the program’s client-centeredness or the justice it offers. On one side of the street, the medical camp was organized, and they ran a simultaneous “awareness camp” on the other side of the street. I did not understand why it was called an “awareness camp” and their goal behind running a camp when all they did was tell the passersby about what they were doing in the medical camp and ask them to sign on a sheet. The conversations with the passersby were barely a minute long. It was mainly a monologue of the social worker telling them about their “caring” practices to convince them to sign on the paper. I noticed that no passersby asked questions or said anything in response to what the social worker shared with them. Many people on two-wheelers stopped on the street to see what was going on, but none asked a question, and neither did the team members approach them to talk about mental health. On receiving 100 signatures, the team members were overjoyed. They considered getting 100 signatures as a successful awareness camp. I was left wondering what awareness really is here. Will the people who signed the paper stop and think about mental health? Did they even register the shared information amidst such rush and noise? What did this awareness camp achieve?
Can One Consent to this “Care”?
This event has left me with multiple questions and no answers. I acknowledge the organization’s dedication to reaching out to HPPDs and their sincere efforts in tackling a community mental health problem. However, I also find myself questioning what care and consent mean when care is offered to achieve a target to receive funds to sustain the program, when care is offered but the lived reality of a person is colored by the lens of psychiatric diagnosis, when care is offered in terms of pills and prescriptions. In my conversations with the professionals of the team, they told me that they consider empathy and the use of no-force as care. However, the mere use of no force might not necessarily mean respect and consent. The social workers bring the clients to the camp for checkups by telling them that they will give them food, new clothes, and blankets. This makes me wonder—does the homeless person come along simply to access resources they are deprived of on the streets? They are rarely told that there will be a doctor’s consultation. Shouldn’t they be told the entire truth about the program? And shouldn’t they be asked whether they want to get medicated?
Does no-force equal consent, especially informed consent, where the client is fully aware of the treatment options, the benefits, and the side-effects? Can a homeless person in this situation, lured by the prospect of warmth and food, even give consent? I noticed that consent seemed particularly tricky when it came to the authority of the doctor. At times when clients were unwilling to interact with the social worker, were disinterested, clearly said ‘’no”, and even shooed the social worker away, they were still subject to the medical gaze via a forced video call with the doctor. This was especially true on virtual consultation days. But in the absence of the medical authority, social workers were more open to the clients’ wishes and desires. If the client appeared disengaged, the social workers respected that and often simply told them they will come back tomorrow.
The mere effort of providing help might not necessarily be empathy, especially when the person’s dignity is violated. Only because they are homeless, their right to be given care away from the public eye and their right to privacy of their body, experiences, and lived reality should not be denied in the disguise of offering care.
Such an eye-opener! Thank you for your investigative work. There is much to ponder here.
The awareness camp sounds like a reality infomercial serving to expand psychiatric management… to pave the way for other forms of development…which has the effect to inure psychiatric suffering in an economic engine??? Voila??? Oh, no…….
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I hope I was wrong in my despairing prognostication above. Therefore, on the other hand, is it reasonable to hope that these caring camps will do all the right things and avoid the use of toxic psychiatric drugs? If so, we could hope to see wonderful improvements in the patients regardless of what diagnostic label was pulled out of the hat. That would be glorious!!!!
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How to define improvement?
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Society, as an exposome,
comprises adverse
human experiences, leaving
shattered human wreckage
in it’s wake.
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I REALLY like that term “exposome” because it describes the way I have already been thinking without anybody telling me how to think. However, I don’t have a degree and many hours of formal study in “epidemiological and biomedical research” as is described in a recent report cited below, and we were actually persecuted for daring to express such concerns with the licensed class. Thank you, Richard, for your “exposome” poem.
I searched “exposome” and copied the result below. I would think that the exposome perspective if honestly applied would be supportive of access to Functional-Holistic medicine, epistemic justice, peer support, etc. in a humane standard of care.
Apr 22, 2020 · ‘The exposome “encompasses life-course environmental exposures (including lifestyle factors), from the prenatal period onwards”, as a “highly variable and dynamic entity that evolves throughout the lifetime of the individual” . When Wild introduced the concept, he situated it in the context of several debates in the life and health sciences.’
Author: Stefano Canali
Publish Year: 2020
http://www.ncbi.nlm.nih.gov › pmc › articles What Is New about the Exposome? Exploring Scientific Change …
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7215638/ This link should work.
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I think that the article I cited re: the exposome is ominous in that it seems to be all about the opportunities for research , as a gold mine to create wealth. Nothing about it conveys any concern about how medical research activity corrupts ethics or when it violates the best interests of patients or society, which does, as Canali referenced, involve societal controversies. The definition of exposome elicits in me the mothering instinct. What does the exploitability of exposome-based research elicit in a high-functioning, ambitious, human predator with no desire to have kids, who may score low on empathy and know how to conceal that ?
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I’m sorry for rushing to judgment with cynicism. The many words we read about the advancement of science research do not acknowledge the deadly injurious practices of allopathic psychiatry that need to be replaced with humane practices. There is no moment of silence to punctuate the turning of the page. I want to be optimistic as I have tried to be many times before. It’s hard.
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