Inclusions and Exclusions: Stratification by Immigration Status

When ACA was enacted, it was built upon an already extant system of inequality in the United States:

• gender
• race
• social class
• immigration status
• occupation
• ethnicity

this coupled with a series of legal compromises and political concessions, most importantly, the decision of the supreme court to allow states to decode whether to expand medicare (or not - leaving access gaps), left some excluded from coverage and others with no improvement to their existing insufficient plans.

Many immigrants were excluded from coverage (ACA maintained many of the immigrant exclusions that came before it) 

• undocumented
• those with less than 5 years residency
• Personal Responsibility and Work Reconciliation Act (PRWORA)
• maintained old exclusions from Medicaid coverage and created new ones for certain classes of immigrants (like DACA)
• Many mixed status families found themselves with a "patchwork" of coverage.
• Varies dramatically across states
• Some states kept their inclusive policies and some used states rights to add them, but most did not. 
• Some failed to be included because of the kind of coverage they were offered.

2010, ACA extended healthcare to more than 20 MILLION individuals in the US who previously lacked insurance. Immigrants are stratified by bureaucratic categories that are created by the state and determine INCLUSION or EXCLUSION.

• these inclusions and exclusions are often contradictory
• 11.2 undocumented immigrants are excluded
• created a clearer distinction between undocumented immigrants and the morally "deserving" population
• boundary expansion for US citizens and long-term legal immigrants and boundary contraction for undocumented immigrants.
• This chapter deals with legal US immigrant citizens who found themselves in contradictory situations when attempting to access healthcare.
1. US citizens children in mixed staus families
2. The exclusion of young adults -DACA (deferred action for childhood arrival)
3. a loophole that allowed some immigrants to qualify for insurance subsidies, while US citizens in the same state did not.
• Reactions of States: 
• Some states expanded Medicaid, created health-care exchanges, and supported the application process.
• Ex: Texas was totally noncompliant. (undocumented and working poor almost 12 million were left out of coverage eligibility). 
• Left local ngos and hospital emergency rooms with the burden of care.
• highest uninsured rate in the country, and the tex/mex border has the highest uninsured rate in the worst state.
• The policy convergence between immigration reform and healthcare reform in ACA - reinforced categories of "deservedness" and citizenship.

Immigration Status and Healthcare Reform

• "Lawfully Present" immigrants under ACA
• lawful permanent residents
• refugees
• asylees
• Cuban and Haitian entrants
• certain victims of domestic violence and trafficking survivors and their families
• persons granted withholding of deportation/removal
• temporary protected status
• lawful temporary residents
• those with "deferred status" (except DACA)
• applicants for deferred status

NOT ALL LAWFULLY PRESENT PERSONS WERE QUALIFIED

One must be both "qualified" (PRWORA) and "lawfully present".

• Lawfully present immigrants who were in the US less than 5 years were NOT QUALIFIED for Medicaid unless the individual state in which they resided had EXPANDED their medicaid. 

• "Not Lawfully Present" Individuals
• Undocumented immigrants
• only qualified for emergency room care, prenatal care under Medicaid, and Federally Qualified Health Centers (FQHC)- and some state and local programs where they existed.
• FQHC
• Struggle for solvency
• staff shortages
• inadequate networks of specialists 
• poor health outcomes
• Only exist in 1/3 of the areas designated "medically underserved"
• provide only limited preventative and primary services

LIMITING ACCESS TO HEALTHCARE IS A WAY TO LIMIT IMMIGRATION IN THE US

• healthcare is seen as a scarce limited good with no acknowledgment that it is a right, and that it is explicitly withheld from those we believe are undeserving.

3 CASE STUDIES: Mixed Status Families

1. people will often not access care for their children (or take subsidies and tax credits) because they fear being on a "list" or "owing the government something" which may compromise their attempts at legal status. (even though this should not legally happen)
• mixed status families are more and more common-confusing healthcare eligibility and immigration eligibility
• people will often move in and out of households as needs for care demand 
• 2.3 million mixed status families have about 45 million children who are US citizens by birth
• works to destabilized already stressed family units and worsen healthcare outcomes
• some parents will not enroll eligible children if other children are not eligible. 
2. This resulted in increased health disparities within families and for familes as a whole with undocumented (und uncovered under ACA) family members. 
3. Public support for the undocumented has also lessened
4. OPT not to enroll eligible children because of fear of repercussions later, but also because they would need to report their household income placing them further in the spotlight without legal status. (fear of deportation)
5. DREAM ACT vs DACA
• unlike the proposed Dream Act, DACA was simply a stop gap against deportation rather than a path to legal status or citizenship.
• DACA produced patterns of disenfranchisement for over 800,000 young people
• DACA could get insurance from their employers because they could work, but rarely utilized it because they are young and healthy and unused to accessing primary care or using insurance, or paying deductibles
• They have all the responsibilities of citizenship (taxes, etc.) without any of the benefits.
6. Immigrants receive benefits where citizens do not
• states that did not expand Medicaid created a disparity between citizens and legal immigrants resident less than 5 years who were eligible for subsidies if they earned less than the poverty level. (they were prohibited from Medicaid before ACA). 

ANTI-IMMIGRANT POLICIES DO NOT JUST EFFECT IMMIGRANTS - THEY AFFECT EVERYONE (e.g., if undocumented workers who pay taxes like everyone else were to be covered, they would lower our over all healthcare costs. Most are healthy and low "risk")

CASE 1:

Anti-immigrant legislation has far reaching affects beyond the undocumented. The designation of "illegality" negatively affect mixed-status families and extended to those who were legally present, even those that are citizens.

CASE 2:

Government rollback of benefits left DACA recipients without healthcare even though others with deferred action qualified. 

CASE 3:

The rejection of medicaid expansion by some states inadvertently created a disparity between low income citizen and legal immigrants.

The ACA intensionally increased and intensified immigrant's exclusion from the healthcare system. 

• symbolic boundaries have been more institutionalized into national health legislation and practice.
• resulted in escalated symbolic and social exclusion, especially the undocumented
• Prior to 2010, many more shared the lack of access to healthcare

Shows how tying immigration policy to healthcare reform or using healthcare reform as a tool of immigration reform is faulty. It has only resulted in the increase stigmatization of the undocumented, and the loss of coverage for many poor immigrants and citizens in states where medicaid was not expanded.

Illness Narratives

 

“Until the academic discourse of medicine is expanded beyond the languages of molecules and drugs to include the language of experience and meanings, however, medical science will reinforce the profession’s resistance to the problems of illness rather than contribute to the broadening of its vision. Research that avoids the human side of disorder places the profession and its practitioners in iron chains of restricted knowledge. So fettered, medicine and doctors are unable to address some of the most difficult yet essential questions in the care of the chronically ill; the physician is prevented from having a personal stake in the patient’s condition, and medicine from applying moral knowledge to suffering.”--Arthur Kleinman

Read HERE

"An ethnography is the telling of a people's story" (Translating Culture, 312).

For the next semester, we will engage in an ethnographic project that entails participant observation and interviewing, two of the principle forms of qualitative research in anthropology. We will use these techniques to create Illness Narratives, which are important products of medical anthropology, as they strive to describe the "experience of illness" as a way to understand behaviors, practices and conceptions of illness in a culture. 

As anthropologists, our modus operandi is collecting narratives. We undertake field work, during which we often spend a year or more living in foreign communities, immersing ourselves in people’s daily lives. We ask men, women, and children about their families; their religion; their understanding of the cosmos; their politics; their roles and status within their societies; and their perspectives on the body, the self, sexuality, sex roles, aging, child rearing, work, diet, violence, the economy, and international affairs. We then publish our ethnographic accounts using narrative as an analytic tool to support our arguments and as a literary tool to enhance our writing.

 

Within the realm of medical anthropology, ethnographers turn their attention to the cultural construction of health and illness, biomedical and other models of healing, international health policy and health care systems, and the social determinants of health. To learn something about illness experience, anthropologists elicit narratives and then interpret them. The ethnographic endeavor has been described thus: “Our anthropological productions are our stories about their stories; we are interpreting the people as they are interpreting themselves.” (M. Divinsky)

 

Arthur Kleinman is a physician who became an anthropologist. Byron Good is an anthropologist who analyzed the medical profession. They and other scholars, such as Allan Young, Clifford Geertz, Susan Sontag, Victor Turner, Edward Bruner, James Clifford, Lawrence Kirmayer, George Marcus, and Terence Turner, shaped medical anthropology’s scholarship on illness narratives and the poetics and politics of writing about people’s experiences of health and illness.

 

Through his clinical work as a physician, Kleinman was aware of the significance of medical histories: “Since eighty percent of diagnoses in primary care result from the history alone, the anamnesis (the account the physician assembles from the patient’s history) is crucial. The tale of complaints becomes the text that is to be decoded by the practitioner cum diagnostician.” Kleinman’s anthropologic training then led him to recognize that illness narratives have to be contextualized: “Each patient brings to the practitioner a story. That story enmeshes the disease in a web of meanings that make sense only in the context of a particular life.” He also realized that there was value in recording and publishing these stories. As Kleinman recalls, “The Illness Narratives told stories of sickness much as they had been told to me. I felt a deep compulsion to retell these accounts.”

 

Medical anthropologists argue that illness narratives are not merely accounts of symptoms but:

• a mechanism through which people become aware of and make sense out of their experiences. 

A transformation takes place from something lived (full of complexity but not given a single, crystalized meaning) into something interpreted (given structure and meaning through the dialogue that takes place between the patient and physician). 

• “Narrativization” therefore acts as a reflexive, therapeutic, and even a transformative mechanism for people who have experienced illness. 

As Becker asserts, “Narratives, my own included, arise out of a desire to have life display coherence, integrity, fullness, and closure.” Moreover, when a person walks into a physician’s office, the physician becomes one of the players in the story. Good eloquently describes how our stories become intertwined: “The narrators—the person with an illness, family members participating in their care, medical professionals—are in the midst of the story they are telling.”

BEFORE WE GO INTO THE FIELD:

 

We need to write a letter of introduction to each of our 4 community partners. This letter should introduce yourself and the purpose of our project. It should also detail how informants will be protected (anonymity) and how the information will be presented and used. Lastly, it will ask for volunteers who wish to be interviewed and permission to carry out participant observation on site (Sister Jean's, Oasis, Doula services, Atlanticcare Pride). 

Learning to hear: How do we learn to hear?

 

Faculties of medicine have been brought to task for churning out physicians with poor interpersonal skills. Despite attempts to include physicians’ skills development in their curriculums, the focus of our training is on the science of medicine: anatomy, pathophysiology, pharmacology—but the skill of listening with sensitivity to people’s stories is not emphasized. They are evaluated on our ability to be methodical, not empathetic.

 

Students, like anthropologists, learn a lot through observation. Medical anthropologists think about the encounters with patients in the same way they think about my ethnographic encounters. 

 

Politics of stories

As anthropologists, we have to be cognizant, as we promote narrative medicine, of the politics of storytelling. 

• How those life stories are told, by whom, and the form that those stories take are fundamentally grounded in politics, history, and culture. “Narrative is always political,” medical anthropologists caution, “because people choose which narratives to tell.”

Therefore, narratives are expressive of cultural beliefs and the experiences that have both shaped and continue to inform their beliefs.

Consider for example these opposing views:

1. Vaccines will save us from this scourge-vs- Vaccines will make us guinea pigs for the powerful
2. Mask wearing is effective to prevent viral transmission-vs- mask wearing is ineffective, or may cause you to get ill
3. I trust doctors and modern medicine-vs- I don't trust doctors or modern medicine, and only use natural medicines
4. Pharmaceuticals are miraculous and give us relatively healthy lives-vs- Big phrama is the devil
5. Everyone is susceptible to disease-vs- only those whose lifestyle is unhealthy get diseases
6. I would never have a baby in a hospital vs I would only have a baby in a hospital, what if something goes wrong?

These beliefs are formed through experiences and may be understood in the context of illness narratives collected by medical anthropologists.

1. Get in to pairs and interview each other about an experience with illness (any) try to record verbatim what your informant says.
2. Find Themes in your narratives
3. match quotes with themes (quotes may fit into more than one theme)
4. What is the overall "lesson" of the narrative (what attitudes, beliefs, ideas and behaviors does it explain)?

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1.

OTHER STUFF:

An illness narrative gives expression to the lived experience of illness. To write an illness narrative about another person, you will need to: 1) talk with a person about their experiences in life, health, and health care, 2) tell that person's story, and 3) reflect on what the story of illness helps to illuminate

·        Ethics. Consider your impact on the people and the community you are interviewing. Is the setting a public place which does not require you to inform people that they are being observed? (like social media, for example) If not, how might you inform people that they are part of a research project? Ethics REQUIRES that interviewees are given anonymity, and are protected from any adverse affects of your research. We will go over the requirements for transparency and protecting informants in the coming weeks. (if you are interested, there is a more detailed written treatment of ethics on this link)

·        Assumptions. Try not to prove pre-existing theories you have about the context and activities happening (and then see how hard this is!). 

·        Time. While I don't want to make static time requirements for this assignment, the concept of 'intense observation' should connote more than one or two hours of observation. Aim for about 16-20 hours of total interview time (virtual or actual, when this is possible).

·        Guidelines For 'Looking':
1. Observers try to uncover and record the unspoken common sense assumptions of the group 
                that they are studying. Therefore, some of these you will observe without them being 
                explained to you.
2. Draw & Take Photographs. Field notes should be more than writing; drawing maps and 
                sketching activities is often very useful when trying to remember the details of what 
                you have seen, take screenshots of media data, etc.  

      3. Reflect on your own actions. Ethnographers alter themselves in order to fit into 

    contexts as unobtrusive observers and as participant observers. How much

    do you have to adapt yourself in order to learn about the context and culture that 

    you are studying?
4. Language: Is there a special language/vocabulary that your informant(s) uses to describe 
               themselves or simply communicate personal beliefs or those of a group? (Consider      

    AA, NA, ALANON, for example). Contrast this with symbols and vocabulary used by other 

    individuals or groups. What is the significance of these differences?

 

Illness Narratives: 

1. Creating an evocative and impactful experience for your reader
2. Amplifying your informant's voice, diminishing your analytical voice
3. Creating a narrative, not an essay
1. essays are explanatory, narratives are evocative (they give you an experience rather than information)
2. essays have your analytical voice, narratives have the voice of the informant surrounded by thick description
4. Thick Description: replaces analysis
1. The block where we carried out the interview is a part of the projects built in 1974. It is a high crime area in a poor neighborhood. 
2. The fire hydrant on the corner was broken and water squirted out on the car parked beside it. Trash litters the streets, sidewalks and lawns of weeds and abandoned syringes. The house on the corner, widows shielded by torn sheets is quiets. Beside it, men lean against a post, speaking quietly and looking about as if for someone they are expecting. The pothole in front of the house allows every vehicle that passes to ring out a banging sound as axle hits the road. But not a single head turns.
5. Take your questions out!!!! ALL OF THEM. Take the "I" (that are you) out! ALL OF THEM.

Methodology in Medical Anthropology

 Questions and Methods in the Study of Sickness and Healing

Fieldwork in medical anthropology is a dynamic process that is NOT well suited to the structured, HYPOTHESIS TESTING RESEARCH PARADIGM of the laboratory sciences.

• Because of the nature of working in different cultures, the direction of your research, and your research technique may shift in response as you become more sophisticated in the knowledge of the culture, or in response to ongoing debates in the profession at home.

The Research Experience:

• How do we balance the demands of scientific research methods 
• testable hypotheses
• replicable experiments
• representative samples
• experimental controls

         with the constraints and opportunities of research carried out in "natural settings" outside of the laboratory?

• SOLUTION: Participant Observation
• learn the local language
• live in the community and participate in public life as is appropriate
• develop rapport with local patients and healers that would allow you to participate in local healing session (Peru) or learn about other healing practices.
• once rapport develops you may be able to move to more structured interviews and surveys
• PROBLEMS: 
• How to minimize your effect on these local practices due to your presence and observation, while you document it
• those you work with have the right to set LIMITS to your research (human subjects). Ethically your first duty is to protect the rights and lives of the people that you study.

Learning How To Look: "Deep Observation" and "Thick Description":

• Beginner's Mind (assume you know nothing and look at everything with fresh eyes)
• Take your time (hang out at your block at all different times of the day, weather, etc.)
• Look for the unusual in the usual
• Describe everything in as much detail as possible, you never know what will be important later.
• look everywhere: up, down, sideways.

Click here for a great article on looking by a photographer and writer.

What to Jot about:

                                                                 Notes

• observations
• impressions
• personal feelings
• tentative explanations
• behaviors
• body language
• sketches of places
• words (vocabulary)
• scents, sounds

Students need to make a distinction between what they OBSERVE and how they INTERPRET what they observe (keep them separate---the whats and the whys)

                                                                       Updated Notes

How to do it:

• be flexible, what you planned on taking notes on may be less interesting than what is in front of you
• be sensitive to people 
• include informants in jottings/interact
• frame what you are doing in a positive and non intrusive way 
• be selective about when to take notes
• Ethics
• ensure confidentiality (pseudonym or coding) and omit sensitive information
• be upfront about what you are doing

What to write

• terse, evocative phrases
• short quotes or phrases hat seem important (note time on recording)
• maps and sketches
• gestures, flavors, shouts, whispers, and all first impressions
• distinguish between WHAT you saw and tasted and heard (objective) and HOW you interpreted these things (subjective).
• do not impute MOTIVE (describe what you see and hear instead)
• do not make guesses or judgments
• describe observed behavior in as much detail as possible (don't use vague descriptions of mental states or attitudes).

                                                          More Notes

Writing Up Your Fieldnotes

• write up your notes ASAP so you do not forget things
• headnotes (fill in the jottings)
• keep a separate journal of your emotional responses (optional)

Interviews

• Session 1: get comfortable with each other and establish rapport
• get comfortable
• no right answers
• answer questions and explain project
• demonstrate a non-judgmental attitude and establish trust
• Sessions which follow: subsequent sessions give informant a chance to reflect
• do not read off a list of questions
• avoid directed questions, let informant speak until they are finished
• remember it is your interviewee's story (not the projects)
• ethics:
•  ensure anonymity that is important to informant
• be prepared to leave out information which is damaging
• Neutral Topic
• start interviews with neutral (easy) topics
• avoid ASSUMPTIONS and EXPECTATIONS
• Cultural differences and miscommunication
• Do not take the meaning of words, phrases or gestures for granted-even if you know them!
• Process
• develop rapport
• apprehension (emphasize the importance of THEIR story)
• explanation (restate what the informant says for confirmation)
• cooperation (equal partners)
• participation (interviewee as teacher)
• Breaks in Interview
• avoid leading questions