Social Welfare: Interdisciplinary Approach eISSN 2424-3876
2023, vol. 13, pp. 98–113 DOI: https://doi.org/10.15388/SW.2023.13.16
Ingrida Baranauskienė
Klaipėda University, Lithuania
ingrida.baranauskiene@ku.lt
https://orcid.org/0000-0002-2011-7957
Abstract. In recent decades, there has been a debate in health care practice for people with disabilities that there is already a shift from a medical model to a social model, and new models are developed, such as the human rights model, which can be linked to the United Nations Convention on the Rights of Persons with Disabilities. On the other hand, in many countries, including Lithuania, the analysis of the situation of people with disabilities in the health care system in terms of discrimination is not carried out systematically, and it can hardly be said that this topic is a priority. The scientific study has revealed that this is the case. In this context, the questions naturally arose: what is the situation of people with disabilities in the health care system in Lithuania? Are they discriminated against? If discrimination against people with disabilities persists, what is its manifestation? These and other similar questions reflect the scientific problem of the article. Answering these questions requires obtaining the data of the research, needs, and challenges of people with disabilities, their relatives, and professionals assisting people with disabilities in the Lithuanian health care system were analyzed, which were processed referring to the principles of thematic analysis. The findings of the research prove the multidimensional expression of discrimination against people with disabilities in Lithuania’s healthcare system.
Keywords: People with disabilities, Discrimination, Dilemmas, Health care system
Received: 2023-09-30. Accepted: 2023-12-22
Copyright © 2023 Ingrida Baranauskienė. Published by Vilnius University Press. This is an Open Access article distributed under the terms of the Creative Commons Attribution Licence, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
Discrimination against people with disabilities in the health care system for many people is stereotypically associated with inhumane conditions in psychiatric hospitals. Not so long ago, such a situation was common in many countries of the world, and Lithuania is no exception. In recent decades, there has been a debate in health care practice for people with disabilities that there is already a shift from a medical model to a social model, and new models are developed, such as the human rights model, which can be linked to the United Nations Convention on the Rights of Persons with Disabilities.
On the other hand, in many countries, including Lithuania, the analysis of the situation of people with disabilities in the health care system in terms of discrimination is not carried out systematically, and it can hardly be said that this topic is a priority. In order to systematize the research conducted in Lithuania on the analyzed topic, I performed the analysis of scientific works in the scientific bases available to me, such as Academic Search Complete (EBSCO); Education Source (EBSCO); ERIC (EBSCO); Health Source—Consumer Edition (EBSCO); Health Source: Nursing/Academic Edition (EBSCO); SAGE Journals Online; ScienceDirect; SocINDEX with Full Text (EBSCO); Springer LINK and Google Scholar. Since my research is focused on the situation in Lithuania, I first chose keywords in Lithuanian, narrowing the field of the research and searching for scientific articles reflecting discrimination against people with disabilities in the Lithuanian health care system. Later, I repeated the search using the same keywords, but already in English, I searched for articles in English that are related to discrimination against people with disabilities in the health care system in Lithuania. I have focused on research papers written over the last ten years (2009–2019). I set myself the following tasks: to find out to what extent the situation I am going to delve into is researched? What are the quantitative indicators of scientific works? What is the manifestation of discrimination against people with disabilities in the context of the health care system? I also sought to predict the novelty and relevance of the article in both aspects of Lithuanian science and practice.
I have not found a single scientific monograph in the last decade, I have found eight doctoral dissertations related to my field of research (in a broad sense). Only one of the dissertations—the doctoral thesis by Ruškė – in its philosophical approach is closest to the interpretation of my research data and the perception of the formation of findings. In her research, the author revealed the peculiarities of constructing the dignity of persons with disabilities through consciousness-raising strategies (Ruškė, 2014).
The analysis of scientific articles has highlighted two topics in a broad sense that are related to discrimination against people with disabilities in the health care system.
Issues of capacity and related legal regulation are analyzed in the articles by Juodkaitė (2014) presents the model of supported decision-making as a tool and form of socialization of people with psychosocial disabilities, analyses the aspects of its applicability in Lithuania. Pūraitė-Andrikienė (2012) analyses the problematic aspects of the institute of incapacity established in Lithuanian legal acts. Zaturskis and Kiaunytė (2014) investigate how the incapacity of a person with a mental disability is constructed and what dilemmas the social worker involved in the process faces.
From the aspect of human rights, the articles of Ruškus presenting the United Nations Convention on the Rights of Persons with Disabilities as a phenomenon influencing the social concept of the world, including Lithuania, are significant: “The United Nations Convention on the Rights of Persons with Disabilities proclaims a fundamentally new approach, obliging countries to develop such legislation that persons with disabilities receive such support that does not stimulate old or new forms of discrimination, but creates particular conditions for the participation of persons with disabilities in education, health, culture, the labour market and other sectors and organizations of society, to make it a working norm and a particular aspiration” (Ruškus, 2014). Ruškus actualizes the concept of inclusive equality (Ruškus, 2018). Overcoming otherness as a resource, including changing the situation from the aspect of human rights, Ruškus presents the possibilities of the community (Ruškus, 2016). In his article, Pūras analyses how human rights are observed in medical practice (Pūras, 2017).
Many of the aforementioned researcher’s articles and other scientific works (together with co-authors) are devoted to the rights of people with mental disabilities or intellectual disabilities and their family members to a dignified life, including health care (Šumskienė and Pūras, 2014; Pūras and Šumskienė, 2012, 2015). In other works by Pūras (with co-authors), the rights of people with intellectual or mental disabilities are analyzed in international contexts in relation to historical, cultural, economic and other environments, revealing their impact and analyzing the opportunities for change (Solantaus and Pūras, 2012; Khandelwal et al. 2010).
The state of the public’s right to health in Lithuania is assessed as insufficiently ensured in the article by Čelkis (2007). The works of Šumskiene˙ and her co-authors proving and explaining the facts of multidimensional discrimination against women with disabilities in the health system is directly related to the field of my research (Šumskienė et al., 2014, 2015). The issues of legal regulation in a disability situation are discussed by Krikščiūnas (2015) and Gudžinskienė (2010). Špokienė (2010) emphasizes the importance of solidarity in medicine. Viluckienė (2013) delves into the change in the concept of disability in medical sociology. The links between social policy and the health of people with mental disabilities are analyzed by Mikutavičiene˙ and Guščinskienč (2012). The link between discrimination and models of assistance provided is analyzed in several scientific works (Sauserienė et al., 2019; Staponkutė and Račkauskienė, 2019; Raipa and Čepuraitė, 2017; Makštutytė and Naujanienė, 2008).
The study of scientific works conducted allows us to assume that there is little research on discrimination against people with disabilities in Lithuania in the aspect of the health care system. In this context, the questions naturally arose: what is the situation of people with disabilities in the health care system in Lithuania? Are they discriminated against? If discrimination against people with disabilities persists, what is its manifestation? These and other similar questions reflect the scientific problem of the article.
To answer these questions, I analyzed the data of the research Experiences, needs, and challenges of people with disabilities, their relatives, and professionals providing assistance to people with disabilities in the Lithuanian health care system.
During the research, applying life history methodology, 8 interviews were taken from each of 30 people with disabilities (with different types of disabilities), from 30 of their relatives, moreover, 5 interviews from each of 50 professionals (doctors, nurses, physiotherapists, social workers, etc.) providing support to people with disabilities in the health care system all over Lithuania.
I define the ontological perspective of research as the perception formed by postpositivism that one truth and one reality cannot be achieved.
From the viewpoint of the epistemological perspective, I define interactive ethnography as the approach, namely, on the basis of which research data were collected (Spradley, 1980; Spradley and McCurdy, 1972).
First of all, I associate the methodological perspective of the research not with the purified method, but with the disclosure of the logic of the research: the collection of research data was organized by abandoning the pre-construction, and the research participant was “followed”; great attention was paid to research ethics both by introducing the research participants with the research and ensuring their anonymity, and by respecting the research participant as a personality, his or her well-being and feelings, and later the selection and interpretation of the research data. The data analysis procedure and process complement the methodological perspective.
Thematic analysis as a method of data processing and interpretation was chosen for its flexibility, the possibility for the researchers to think in their own way, non-dogmatically exposing the findings and leaving room for the expression of the reader’s perception and critical attitude (cf., Braun and Clarke, 2006, 2012). In this article, in order to answer the questions raised, the data are analyzed only from the aspect of discrimination (based on my subjective perception, 82 episodes were selected for analysis from all the research material related to the expression of discrimination in the health care system).
The analysis of the episodes of the narratives allowed to distinguish three objects of the subtopic: Prejudgement about the person’s abilities; Other rules; Services to a particular person are not provided.
The object of the subtopic Prejudgement about the person’s possibilities is characterized by the multidimensional expression. However, on the other hand, despite different situations, circumstances, and other factors, the preconceived opinion, usually of one or another person—a doctor, another professional—about the physical, mental, professional, or other possibilities of a person with a disability dominates. For example, in Lithuania, in many sanatoriums and spas pools are adapted for people with disabilities, but it happens that due to a prejudgement about the person’s abilities, they are not allowed there. There are various arguments:
(…) the very fact of not allowing a person is motivated that the person does not have an accompanying person to supervise him or her, for security reasons, that not everything is adapted here, but nothing more. Although the administration of the sanatorium itself informs and confirms during the investigation that it has everything and everything there is adapted: a lift to the pool, shower rooms for people with mobility disabilities. The applicant herself has indicated that she has visited this sanatorium before, and, in that pool, maybe not everything is perfect, but it was enough to meet the needs (…) (S6).
The object of the subtopic Other rules is related to the creation of different rules in the same sanatoriums or spa centers. Sanatorium managers decide not to allow a particular person to use their services. In the analyzed cases, it was found that not only Other rules for people with mobility disabilities are created, but a rule for a particular person is created. The semantics of the cases also reveal how much effort is needed to ensure that the person and the professionals assisting the person prove that the exclusive decision not to admit the person to the pool is discriminatory.
Findings: The expression of the subtopic Prohibition of discrimination on the grounds of disability is related to Prejudgement about the person’s abilities, “Other” rules, Not provided services to a particular person. Having examined the expression of the subtopic, I can state that the relevance of the subtopic Prohibition of discrimination on the grounds of disability and the necessity to change the situation in the Lithuanian health care system does not raise any doubts.
After the complete inductive analysis of the expression of objects, the subtopic Disregard of the rights, will, and wishes of a person with a disability was divided into three semantic objects: The discussed treatment plan is not followed; The basic needs of the person are not met; Due attention is not paid in an emergency situation.
A mother, who lives with her daughter with a mental disability, tells that when her daughter’s health deteriorated, she had to receive hospital treatment, where the discussed treatment plan was not followed. The family lives in a town that did not have a hospital. Therefore, it was necessary to receive hospital treatment in the city hospital, which is 60 kms away. The mother discussed the plan of tests and treatment with the doctors, but it was not followed. When she called them, she would find out that nothing was done, when she went there, it was the same again. And again, the mother had to look for doctors, ask to pay attention to her daughter and her illness. The mother felt that she and her child were being discriminated against. The narrative context allows us to conclude that the mother tends to justify and understand the doctors, in her opinion, that they are good but very busy.
On the other hand, telling about her experience in an even bigger city, the mother states that it is completely different there (…) we called that doctor from the city X, he says I don’t want to traumatize that child, you see, there are wards without handles, I will ask for you to be admitted to that easier unit. Well, so we were admitted, they increased that dose, well and now we have not been to the hospital with these medicines for 7 years, she got married and gave birth to a baby. So, I have met very great people (Aar7).
The expression of the mother’s well-being, when the doctor does not follow the discussed treatment plan, does not arrive at the agreed time, ignores the mother’s requests and observations, allows to assign the analyzed object to the subtopic Disregard of the rights, will and wishes of a person with a disability and treat as discriminatory.
The expression of Disregard of the rights, will, and wishes of a person with a disability is reflected by the object of the subtopic. The basic needs of the person are not met. As can be seen from the episode selected for analysis, an elderly person with a disability and diabetes is admitted to the hospital’s admissions department, where he spends more than eight hours. During that time, no one took care of the person and have him receive a meal, although he offered to pay. There are various circumstances: a weekend, tired workers on the one hand, but on the other hand—an old, sick person with a disability and diabetes. Not meeting basic needs is also encountered in caring for a relative because what they prescribe is obviously not enough, but she sometimes brings a packet of diapers from that Red Cross Society, there may not be every month, but sometimes it’s every month, and we need to buy them less, because in practice we need diapers three pieces a day, at night it’s necessary, and during the day it depends (Aar6).
The expression of Disregard of the rights, will, and wishes of a person with a disability is reflected by the object of the subtopic Due attention is not paid in an emergency situation. A young woman with multiple sclerosis says she felt bad and called a friend. The woman does not remember the situation, and she relies on a friend’s story. A friend took the woman to the admissions department, where the woman’s doctor was on duty, who was surprised by why she had come here and understood the reason for her arrival as a desire to stay at the hospital. The doctor showed no desire to delve into the woman’s well-being. The friend was surprised, but asked for some injection of medication, at least to sit, and when she recovers, they will go home. When the friend was asking the doctor, the woman started having seizures. The woman then received all the necessary help. The woman says that such a reluctance to delve into the person’s state of health is common, as is the saying that “it is not that bad with you, why are you rushing to that hospital.”
The same woman remembers another episode related to her critical health condition, when the tests were very bad, the options of treatment with medications were exhausted and she had to return home from the doctor in complete uncertainty:
And you know, you come home – you know neither what medicine is nor what prognosis is, and if they had spoken to you humanly at least, and you don’t know here they talked to you or not to you, they did not look into your eyes, they look at the papers and simply talk to you like this A2.
Findings: The expression of the semantic objects of the subtopic Disregard of the rights, will, and wishes of a person with a disability is related to the objects of the subtopic—The discussed treatment plan is not followed; The basic needs of the person are not met; Due attention is not paid in an emergency situation, which proves discrimination against people with disabilities in the health care system.
The semantics of the title of the subtopic Elimination of discrimination against people with disabilities in the health care system could cover the whole topic Discrimination.
In this case, the possibilities of elimination are delved into. After the complete inductive analysis of the expression of objects, the subtopic Elimination of the discrimination against people with disabilities in health care was divided into four semantic objects: “Rehabilitation treatment is not prescribed”; “You get medication and don’t look for other problems for yourselves any more”; “A walking diagnosis, not a person”; “Stuffed with loads of medicine.” The titles of the three semantic objects are short quotes from the people’s narratives. The abstraction was rejected because these quotes reflect the semantics of the object in a much more visual way than a generalizing statement.
The object Rehabilitation treatment is not prescribed of the expression of the subtopic is found in the contexts of various conversations. It can be stated that rehabilitation treatment is relevant in many topics, subtopics, and contexts of conversations in general. Rehabilitation treatment, the dominant semantics of the narratives, is challenging to access. In one woman’s narrative, we see that a woman with a mobility disability was ignored by a family doctor when she wanted rehabilitation procedures or treatment in a sanatorium. The family doctor did not prescribe it, and her reasoning for not prescribing was very subjective. The woman found a way out—she began to address the head of the outpatient clinic directly. She then received treatment. The subjective and discriminatory approach to the rehabilitation process is revealed in an episode of a professional physiotherapist’s narrative: If it is a young person of working age, then professionals should focus all their efforts on them, invest as much as possible in them so that they can benefit society, pay taxes, work, not be, as I say dependent, and feel helpless. Physical rehabilitation alone is not enough, and they still need to be, like all other people, to integrate into work, to attend some events. So, I would suggest that young people be given special attention and not only work but also the time should be invested in them and rehabilitation should start immediately and be prescribed on a regular basis. Maybe older people also need rehabilitation, I’m not saying anything about it, but maybe it should beturned a little differently (S4).
Although it is not explicitly stated that the rehabilitation of older people is unnecessary, various discriminatory clauses can be deduced from the context: “Maybe,” “it should be turned a little differently.” On the other hand, such episodes of narratives, where rehabilitation is given unexpectedly to the person himself or herself, at the initiative of the doctor, are rare but still encountered: And there was a doctor. She came to me, and she is such a nice doctor, insanely nice, for some reason she came to me and started massaging me. She put her hands to my back and started massaging. Just for no reason. And says, Lord, how constrained you are, you need massages (A1).
An accidental meeting with a doctor creates preconditions for a person’s rehabilitation treatment, and by exploring the context of the narrative, we learn that the woman forgets back pain for several years.
Another object of the expression of the subtopic, which is related to discrimination and which should be eliminated in the health care system, is medical professionals’ indifference, the performance of formal duties: “You get medication and don’t look for other problems for yourselves anymore.” The woman who survived the accident does not remember anything. However, her parents still feel hurt when she, with multiple sclerosis and lost memory, was taken to a doctor for consultation. According to the parents, they were very worried about their daughter and sought help, but the doctor did not communicate with them, prescribed medication, and said: “Why are you going here, you get medication and don’t look for other problems for you?” (A2).
I would relate the semantics of the object of the subtopic “A walking diagnosis, not a person” to the dissociation of medical professionals and the patients’ pursuit of empathy:
< … > she looked at me and she – well you won’t get those medications here, then you will get in the wheelchair again and she kind of talks to herself, we can prescribe one experimental medicine here, but I don’t know, maybe in a week, maybe in two you could die, and I’m sitting, chm, here and I don’t know, what or where, I realized only two things, if I don’t get medication, it will be bad, I can agree on a new medication, but I can die (A2).
From this episode of the narrative, some may see a violation of ethics, and others may perceive the situation as the doctor’s efforts or the patient’s hopeless health.
However, the context of the whole narrative leads to the conclusion that the patient, as an individual, is discriminated against. The statements of the narrative such as “She was sitting, talking to herself,” “We can prescribe one experimental medicine here, but I do not know, maybe in a week, maybe in two you could die,” allow us to state that the doctor does not care about the person sitting in front of her as a human being with her feelings and experiences. It is highly unlikely that the doctor would say such words to her close person.
Another object revealing the expression of the subtopic Elimination of discrimination against people with disabilities in health care is “Stuffed with loads of medicine.” A professional who works in a nursing home, says people with Alzheimer’s are, in her opinion, unduly suppressed by medicine to keep them quiet, so that no more staff are needed to care for them. The professional says that the amount of medication administered is such that people become involuntary, apathetic, like “dolls.” After researching the narrative episode, the data obtained show that because of medicine, people become immobile, apathetic, like “dolls.” In a relative’s narrative, there is a similar expression of the data:
Well sure, when she was taken to the hospital, they would give her such medicine, what I didn’t like, it made her very sleepy. When I came there, I could hardly talk to her, it seemed she was sleeping. They would say that it’s such treatment (…) Yes, they said, it has to be so, but well [in the city X] it wasn’t so Aar 7. The mother was anxious about why her daughter was “almost asleep,” she would ask the doctors and hear an unjustified answer that “it is such treatment.” However, a long history of treating her daughter allows her mother to compare “such treatment” with treatment in a big city, where her daughter not only was not suppressed by medicine, but a psychologist was working with her, she also received another alternative treatment, she was taken out for a walk, etc. Analyzing the subtopic Elimination of discrimination against people with disabilities in health care, it was difficult to find an example of the expression of the elimination of discrimination.
The narratives, in which the revealed situations prove the necessity of elimination, dominated. I managed to find one warm and sincere story of a young professional that illustrates that it is possible to see a human being in a person with any diagnosis and communicate with him or her as with an equal:
(…) I was very attached to such a little old woman with Alzheimer’s. She was called Laura, so it’s even a pity to remember somehow. Really we communicated very well, and I was attached to her, and now it’s even a pity to remember, well that I don’t work and simply it’s interesting how she’s doing (smiles), actually, really, I myself, I would just find free time and would just go, would go to her, to talk to her. The first time even when I went to her, I was scared, and I didn’t even understand, she tells me they brought me here, they brought me here, she says, they brought me here from home, and I didn’t understand what’s happened to her, why she was saying that, and she forgot herself why she came here. So, in fact, she also has Alzheimer’s herself, but by herself, everything by herself. It’s great to communicate with her, and you can talk about everything with her at that moment. Maybe she won’t remember something, maybe she won’t remember that she had a meal now, but she will talk to you like a human being (S9)
The young worker felt the warmth from a woman with Alzheimer’s, as evidenced by the semantics of this episode: “but she will talk to you like a human being.” Not the professional will talk to the woman but the woman with the professional. The context of the research suggests that the professional was exposed to severe working conditions, a “predatory” environment, and the communication with the woman with Alzheimer’s allowed her to feel like a valuable specialist, to see the meaning of her work.
Findings: After examining the expression of the object, the highlighted properties of the object allow us to assume that people with disabilities in the health care system are primarily faced with insufficient and limited rehabilitation treatment (Rehabilitation treatment is not prescribed), “formal” assistance when medicines are prescribed without seeing a person (You get medication and don’t look for other problems for yourselves any more), when medical professionals do not want to delve into the person’s psychological well-being or psychosocial problems (A walking diagnosis, not a person), when no alternative treatment is given (Stuffed with loads of medicine).
First of all, I would relate the elimination of discrimination against people with disabilities in health care to these findings of the research.
Having analyzed the expression of the subtopic Legal capacity is violated, I distinguished two elements: The recognized legal incapacity results in poor quality medical care; The forcible inclusion in the process of establishing legal capacity. These elements not only describe the object of the subtopic but also reveal the impact on discrimination.
The object of the subtopic The recognized legal incapacity results in poor quality medical care is illustrated by the narrative when a doctor while filling in the documents, noticed a record in the medical history about a person’s disability and incapacity, and decided that the person should be transported to a psychiatric hospital:
(…) a person with an intellectual or mental disability has been declared legally incapacitated and had a caregiver, his relative. This means that this person with a disability had a health problem, very sharp pains in the abdominal cavity, internal organs. The relative went to the emergency department of one of the cities of our country together with the patient in an ambulance, the doctors seemed to start filling in the documents and saw that the disability had been diagnosed in the medical history, incapacity due to a mental disability, and they immediately told that this person needed to be taken to a psychiatric hospital, because of an exacerbation of his illness, because he is shouting in the hospital.
The caregiver tried to argue that he has pains, not an exacerbation of the mental illness, nothing to do with the illness. But the doctors were unyielding, they put him into an ambulance and sent him to a psychiatric hospital, probably the patient was probably given sedatives to make him calm. According to the caregiver’s testimony, the patient and his pains were not given much attention, just treat mental illnesses but not relieve existing pains. A few days later, the hospital applied to the court for involuntary treatment for the court to issue a permit.
The court granted this request from the hospital that due to an exacerbation of the disease the person’s treatment was necessary, and when he was discharged from the psychiatric hospital, in the words of the caregiver, when they went to the city hospital, the patient was diagnosed with a rib fracture. Of course, the caregiver could not answer when those ribs of the patient were broken before or after going to a psychiatric hospital, which, in fact, could have been the cause of the pain with which he complained. So, in this case, we recommended that they apply to the ministry because of the patient’s violated rights, for it to carry out an investigation in that case (…) (S6).
Distinguishing the elements of the narrative and the description of the data suggest that the person, possibly due to his legal incapacity and diagnosed disability, did not receive quality medical care. However, he was sufficiently actively and persistently represented by a court-appointed caregiver. The person was admitted to a psychiatric hospital due to pain, “and when he was discharged from the psychiatric hospital, in the words of the caregiver, when they went to the city hospital, the patient was diagnosed with a rib fracture.”
The caregiver appealed to a state institution, which also got actively involved in representing the person’s rights, trying to make people draw conclusions from this situation and make decisions that do not discriminate against persons with legal incapacity. The state institution “appealed to the Ministry of Health to consider whether it would not be better to have psychiatric wards in general hospitals instead of separate psychiatric hospitals.”
However, the elements of the narrative, such as “the psychiatric hospital strongly opposed and argued that if the necessary importance of complex treatment arose, the hospital would bring doctors to the hospital, or the hospital itself would take care of taking the patients to the treatment institution, and medical care would be provided” (although the finding of the research is evident—no assistance was provided in a particular case), allows us to assume that the system is difficult to reform. More than that, the institutional interests are above the interests of the individual.
Another object of the subtopic—The forcible inclusion in the process of estab-lishing legal capacity—is related to the object. The recognized legal incapacity results in poor quality medical care. A person with difficulty walking who has a physical disability says that due to a conflict in the family, he was involved in the process of determining incapacity due to various circumstances. According to him, the daughter wrote the application, the court was on the next day, and after the court, he was immediately taken to a psychiatric hospital. The person spent two weeks in a psychiatric hospital, they examined him there, observed him, he was kept guarded, in his words, it was more terrible in the hospital than in prison.
After examining the person’s health, the person was invited to a commission, where he was heard, the commission was interested in the situation in the family. The person was not declared incapacitated, and he was discharged from the hospital to home. Although he had a disability, had difficulty walking, was not brought to the psychiatric hospital voluntarily, he had to return home by himself. According to the person, “sitting on a bench” at the bus station, he felt bad“the heart apparently couldn’t stand it.” An ambulance took him out of the bus station, and the person was lying in the hospital.
This episode is also not directly related to discrimination in the health care system. On the contrary, the health care system acquitted the person, did not recognize him as incapacitated. However, the humiliating process of determining incapacity itself, indifference when discharging from hospital, discriminates against a person.
Findings: The expression of the objects The recognized legal incapacity results in poor quality medical care; The forcible inclusion in the process of establishing the legal capacity of the subtopic revealed during the research proves that the person’s right to legal capacity equally with other persons in all spheres of life in the health care system is violated and it is discriminatory.
Having conducted the analysis of the expression of the subtopic Prohibition of torture and cruel and degrading treatment, I distinguished three objects: “Kicked and called a penguin”; Doctor’s indifference is accepted as humiliation; Ignoring as humiliation. The title of the first object is a mother’s words, which I could abstract with the concepts of bullying or degrading behavior. However, as I have already mentioned, it is important for me that the title of the object reflects the semantics. By that, I aim to make the reader realize that the situation requires change. The title of the object—Kicked and called a penguin—has a much stronger message within it than, for example, degrading behavior.
Other titles of the objects of the subtopic—Doctor’s indifference is accepted as humiliation; Ignoring as humiliation—they could also be not distinguished and integrated into the subtopic. However, I see different meanings in them. Ignoring is a deliberately constructed behavior, while the causes and circumstances of indifference may be different.
The episode of the Kicked’s narrative of the object, called a penguin of the subtopic, is one of the most revealing cruel and humiliating behaviors that gives, if not physical, then deep spiritual suffering to both the mother and her child. From my subjective point of view, eliminating the narratives that reflect the history of people with disabilities in the health care system (narratives about the events that happened twenty or thirty years ago), it is one of the most revealing episodes how a child and a mother, who are in the situation of disability, are tortured nowadays:
Well there was probably a medical professional there, we went to the room, already for the disability group, I’m sorry… (…) maybe I would have dressed her somehow differently, but since already in such a month, I bought a blue winter hat, well, it’s such white blue, such a white fur inside, the shoes also suit the hat, the shoes like this – the fur is here, my daughter sat down like that and I sat down here (shows how she is sitting down), a medical professional, a woman, is sitting, she took that card, threw it there, and I tell her it will be hard to untie those shoes, the daughter does not understand what is going on here, the doctor says untie those shoes (in a loud tone), already in such a tone, I just leaned over to untie, she came up, you don’t untie (loudly), well I think ok I won’t untie, I sat down, she came up, I don’t lie at all, because I don’t have the reason to lie, came up and (…) kicked her feet (cries) I see the man is sitting there, was sitting, he didn’t even raise his head, it was probably a medical professional there too, they were all there afraid of her, they were sitting and no one was reacting, they don’t see, they don’t even want to see, stand up, she is sitting, the penguin is sitting here, and I understood that she didn’t like (…) clothing, that I dressed her, the penguin came and is sitting here, go, she didn’t go anywhere, as she was sitting and did not go, she bowed her head… And it was scary for me that I couldn’t protect her (cries). However, after that I went out, I gathered all my strength, I called (…),I say I’m still in your outpatient clinic now, I say I’ll call the TV now, I say her surname is so and so, in writing, I say you don’t think I’m going out now, I say it was very hard for me. However, I say I have to gather all my strength if I don’t defend my child. She’s not a medical professional, an uncultured woman, will not kick my child in my presence, so I say, I am getting terrified of what is happening to those people with disabilities who do not have parents at home who are closed in this house, so they are also kicked like this when my child is kicked in my presence in the mother’s presence (Aar17).
This case could be considered accidental, but the mother’s statements1 allows us to assume that this is a systemic situation. Such cruelty of professionals traumatizes a person, leaves long-term grievances and consequences. On the other hand, it differs from the narratives that reflect the history of health care in people’s ability to fight against such discrimination: “And it was scary for me that I couldn’t protect her (cries), but after that, I went out, I gathered all my strength, I called (…)”, “if I don’t defend my child.”
The analysis of the narrative of the object Doctor’s indifference is accepted as humiliation shows that the doctor’s treatment of the patient has discriminatory features, humiliates the patient as a personality. Such an expression of medical professionals’ indifference, when people with disabilities and their relatives feel humiliated, is often found in narratives. People’s stories that doctors don’t delve into the situation: “a cold? This cold is because of old age, no one here will cure you” Aar 2; “you can use any drops that you want, nothing will help you anymore” Aar 21—are a reality these days.
Ignoring as a phenomenon is somewhat less common in narratives, but its mani festation is obvious: one accepts it as cruel and degrading behavior that causes a lot of psychological suffering. A woman says that when she came to visit her father, who has a mobility disability, she found him distressed, agitated, talking in whispers, because the ward doctor, a neurologist, had “punished” them. He “discharged” the man who said that the treatment did not help anyway home the same day and “punished” the whole ward, saying that he would not come to them for three days.
The woman states: “my dad said agitated that he hadn’t slept all night and kept repeating—so they are not going to treat me now? It was so difficult for me to get into the hospital, and now everything is in vain” Aar 23. As can be seen from the other circumstances of the narrative, the patient received treatment, but both father and daughter felt humiliated because they had little to do with the conflict but were “taught” that the doctor’s decisions are non-negotiable.
During the research, the distinguished objects Kicked and called a penguin; Doctor’s indifference is accepted as humiliation; Ignoring as the humiliation of the subtopic Torture and cruel and degrading treatment and the distinguished features related to the objects—physical and psychological torture of a person with long-term consequences; indifference as a form of patient humiliation, ignoring causing psychological suffering, etc.—show that there is a lack of systemic solutions in the health care system.
In the aspect of discrimination, it has been established that in the Lithuanian health care system, the facts have been found that people with disabilities are discriminated against because of their disability. People with hearing impairments do not even have a theoretical opportunity to take a driving test because the family doctor does not send them to a specialist doctor for a check-up. Persons with a certain mobility disability, even though they had a certificate required for sanatorium treatment, were additionally referred to a paid consultation of a sanatorium doctor, who made a decision whether a person can attend the pool or not. It can be stated that exceptional rules have been created for people with mobility disabilities. The fact of discrimination against one person also became clear: the managers of the sanatorium decided not to allow the use of their services to a particular client with a mobility disability.
The rights, will, and wishes of a person with a disability are disregarded: the discussed treatment plan is not followed (the relative must repeatedly ask the doctor to perform the tests or prescribe treatment). The basic needs of the person are not met (a person with diabetes is kept without food for eight hours in the admissions department, a woman must leave three euros at the reception to send her the results of the tests). Due attention is not paid in an emergency situation (a woman with multiple sclerosis brought to the admissions department, where the doctor treating her was on duty, did not receive the necessary help until the seizures started, etc.).
There is no expression of the facts of the elimination of discrimination against people with disabilities in the health care system. The manifestation of discrimination is evident in the situation of rehabilitation treatment (rehabilitation treatment is often only available through a complaint or a bribe). In case of a difficult health condition (you get medication and don’t look for other problems for yourselves any more). There are frequent facts about the overuse of medications, from the experiences of both professionals and relatives (the professional says that the amount of medication administered to people with Alzheimer’s is such that they become involuntary, apathetic, like “dolls”).
The expression of legal capacity equally with other persons in all spheres of life in the health care system is also negative: there are facts discovered that the recognized legal incapacity results in poor quality medical care, and the forcible inclusion of a person with a disability in the process of establishing legal capacity.
The provision of the Convention on the prohibition of torture and cruel and degrading treatment is violated: a professional kicks a child and calls her a penguin, people with disabilities accept the doctor’s indifference and ignorance as humiliation.
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1 “… the man is sitting there, was sitting, he didn’t even raise his head, it was probably a medical professional there too, they were all there afraid of her,” “they were sitting and no one was reacting, they don’t see, they don’t even want to see,” “I am getting terrified of what is happening to those people with disabilities who do not have parents at home who are closed in this house, so they are also kicked like this when my child is kicked in my presence in the mother’s presence.”.