Quantifying human needs? : A case study of the Swedish disability policy concerning personal assistance support for basic needs

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Quantifying human needs?

A case study of the Swedish disability policy concerning

personal assistance support for basic needs

Sara-Lina Lock

Supervisor: Johanna Gondouin Gender Studies, LiU

Master’s Programme

Gender Studies – Intersectionality and Change Master’s thesis 15 ECTS credits

VT 2021

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Abstract

This case study aimed to do a critical, intersectional, policy analysis of a disability policy regarding personal assistance support for basic human needs in everyday life. In January 2019, a comprehensive preparatory report about new suggestions was presented by the Swedish Government. This caused many reactions from disability rights organisations. One particular topic became heated and criticized in the debates, namely interpretations of the legal texts about personal assistance support concerning help with breathing and nutrition feeding. I have analysed interpretations of this legal text in the preparatory report, referral response and its result in the Government bill. The analysis shows problematic, normative understandings about the body and how a specific integrity demand have affected whether a person has been entitled to personal assistance to support their basic needs. Cost efficiency, quantification, and measurable goals are increasingly visible in the Swedish welfare society. People with disabilities and their entitlement to assistance have decreased for the sake of productivity and cost reductions. An intersectional perspective of the policy’s legal texts illustrates how it lacks an essential understanding of human values. There is a need for a deeper perspective of empathy to see that basic human needs are non-measurable.

Keywords: Disability policy, personal assistance, basic needs, food assistance, nutrition feeding, breathing, intersectionality, integrity, embodiment, human value, non-measurable needs

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Acknowledgements

First, I would like to thank my supervisor Johanna Gondouin for the support, guidance and valuable knowledge during this process. Second, I want to thank my co-tutor groups these two years for interesting discussions and support; it has been well-needed. And thank you to my partner, Oscar Fredriksson, for your love and constant encouragement.

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Terminology

Barnkonventionen - UN convention on the Rights of the Child CRPD - UN Convention on the Rights of Persons with Disabilities Funktionsrätt – Swedish Disability Rights Federation

Försäkringskassan (FSK) – The Swedish Social Insurance Agency FQ – Forum for women and disabilities in Sweden

Hälso- och sjukvårdslagen – The health and Medical Services Act Högsta förvaltningsdomstolen (HFD) – The Supreme Court Independent Living Institute (ILI)

JAG -Jämlikhet Assistans Gemenskap - The National Disability Association LASS – The act on assistance compensation

LSS - The Act concerning Support and Service for people with certain functional impairments

Patientlagen- The Patient Act Proposition – Government Bill

Regeringen –Government offices of Sweden

RBU – The National Federation for Children and Youths with disabilities Socialstyrelsen - The National Board of Health and Welfare

Socialdepartementet – Ministry of Health and Social Affairs Socialförsäkringsbalken (SFB) The Social Insurance Code

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Introduction

During the last decades, the Swedish disability policy has shifted from a medical focus on care and treatment to a focus on rights and equality (Gynnerstedt & Bengtsson, 2011). This shift is reflected in legal texts. Different interpretations of a legal text can have drastic consequences for a person’s entire life. The research field on disability rights often concerns independence and the right to participate as much as others in society with support from the Swedish welfare system. In the 1990s, disability issues had gradually become more eye-catching. However, due to critiques that research was rarely based on people with disabilities, there were demands on having more researchers with their own experiences of different disabilities. There were also more demands on participation from users of assistance support in evaluation and follow up sessions. In the 2000s, research and public debate focused less on the individual’s disability to instead pay more attention to the social environment and

obstacles around the individual. A disability perspective should be a part of all politics, and all areas of society should increase their awareness regarding discrimination, availability, and treatment (Funktionsrätt, 2017).

The assistance law (LSS, 1993:387) The Act concerning Support and Service for Persons with certain functional impairments was introduced on January 1, 1994. In many ways, this was a breakthrough after years of fighting for disability rights in society. The law intended to advance individual rights for people with disabilities and their self-determination. However, the number of people entitled to LSS increased, and so did the costs for it. In discussions about the assistance law, the debate often concerns costs, possible fraud investigations, and loss of entitlement to personal assistance.In 2016, the Government gave the Swedish Social Insurance Agency a new mission to reduce entitled hours of assistance. Consequently, many people lost some or all of their assistance entitlement. At the same time, the Government started an investigation on how to continue to reduce costs in the LSS-field and how to make adjustments in many of its legal texts. In October 2018, a comprehensive preparatory report leaked out and was later sent for a referral at the beginning of 2019. Disability rights

organisations and the whole disability community raised deep concerns in referral responses at some of the suggested implementations, especially those regarding basic needs and unclear legal definitions issued within this LSS- policy (Independent Living Institute, 2019a).

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The UN Committee for the Convention on Rights for People with Disabilities highlights worrying testimonials in Sweden about personal assistance in article 19. Article 19 concerns the right to live independently and participate in society. It has been noted that since 2010, several people, due to a change in interpretation of ‘basic needs’ and ‘other personal needs’, have affected people’s opportunity to independence (Socialstyrelsen, 2020). Furthermore, people who have assistance have suffered sharp reductions for no known or seemingly non-justified reasons. Assistance allowance from the state has rapidly decreased the past few years and are today the lowest in ten years (Garcia, 2018).

Aim and purpose

The overarching research problem of this case study deals with problematic interpretations of basic human needs in a Swedish disability policy. The study will analyse the chosen LSS- policy through a preparatory report, referral response and a government bill and put it into a theoretical context. To do so, I was inspired by Olena Hankivsky’s model of

Intersectionality- Based Policy Analysis (IBPA).

Research questions

1. How are basic human needs understood in the legal text? 1 a) What are the referral responses to the legal text?

2 How are groups differentially positioned by the legal text? 2 a) What underlying inequalities can be seen in the legal text?

Background

This section will present some information on the meaning and significance of the LSS-law in Sweden. The following three groups are entitled to LSS assistance in Sweden

(Socialstyrelsen, 2020).

 Category 1. It includes persons with developmental disabilities, such as autism – or on the autistic-spectrum

 Category 2. It includes persons with a significant and permanent disability after brain damage in adulthood caused by external violence or physical illness.

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 Category 3. It includes people with other permanent physical or mental disabilities that are not due to normal ageing and cause significant difficulties in daily living and, therefore, has an extensive need for support and service (Socialstyrelsen, 2020:17-18).

LSS includes ten kinds of initiatives for special support and services 1) Advice and personal support, 2) Personal assistance 3) Companion service 4) Contact person 5) Relief service in the home 6) Short-term stay away from home 7) Short-term caring of school children over the age of 12, 8) Foster homes and special housing for children and young people 9) Special housing for adults and 10) Daily activities/work-related. However, some disabled people do not have any LSS support due to lack of need or if the person has applied but has received a rejection (Socialstyrelsen, 2020).

An ongoing debate

As mentioned in the introduction, since the law of LSS came into force, it has given people with extensive disabilities more power over their lives. These new reforms in the disability policy, the ten different support initiatives, especially the second initiative, personal assistance, revolutionised and gave newfound freedom for many when implemented. Meanwhile, during the 2000s, assistance reforms have been a frequent topic in political discussions and investigated for financial reasons. It has caused significant concerns among many of those entitled to assistance. The National Board of Health and Welfare

(Socialstyrelsen) presented a comprehensive report with changes and improvements

regarding several areas within the ten LSS- initiatives. The preparatory report caused many reactions from disability rights organisations and disability assistance coordinators in the referral response. They stress on several points how some of these legal text interpretations already have affected many persons with disabilities and their right to assistance

compensation. I will analyse this highly criticized LSS- policy, namely the one regarding breathing and meals in the forms of nutrition feeding. For a more detailed description of these needs and assistance support, see appendix 1 before reading the analysis.

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Previous research

The LSS law has been established for almost three decades; for that reason, I have decided to focus on disability research that has been done since then.

Health policy in practice

UN: s convention on the Rights of Persons with Disabilities (CRPD) was agreed in 2006 in Sweden. It was ratified in 2008 and came into force at the beginning of 2009. In article 12, Equality in front of the law, it is said that: "States parties shall take appropriate measures to provide persons with disabilities access to the assistance they may need to exercise their legal capacity" (Regeringen, 2015a:14). The Convention does not contain any new rights,

somewhat clarifying what is required for people with disabilities to have their requests fulfilled and the ability to be equal to everyone else (Regeringen, 2015a).

Research on the topic by Thompson and Svaerd (2019) is based on legal reports, studies and planning documents supporting people with disabilities and special-needs policy. The survey about the Swedish perspective on LSS shows that the legal discourse has been the dominant discussion since 2009. The same year, the Government had a financial initiative to maintain the service but prevent costs to increase. To do so, decisions on assistance allowance to some individuals needed to be limited (Thompson & Svaerd, 2019). One consequence of this has caused a constant battle for people with disabilities to keep or get the support they are entitled to. According to the Swedish Social Insurance Agency (2021), a medical certificate that describes a person’s disability and how it affects this person’s life must be entitled to

assistance compensation. When applying to the agency, the person should send in the medical certificate from the doctor before an appointment is booked for further information

(Försäkringskassan, 2021). This medical requirement on the actual disability has become morerestricted and demanding for the past years. At each reconsideration of assistance entitlements, some people with unchanging disabilities might need several new medical certificates that show their continuing need for assistance support. This has been seen as one attempt to narrow down specific medical criteria to reach reductions in assistance

entitlements and, as a result, costs of assistance. The increased scrutiny of personal details is something that can be seen as a breach of Sweden’s commitment under article 22 of CRDP to protect "the privacy of personal health and rehabilitation information of persons with

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Swedish disability law rests on values and human rights principles that all people are similar in front of the law and have the same rights. Moreover, a strong solidarity approach is built on diversity in the political sphere, which forbids discrimination against ableism and hinders people with disabilities. An essential role in achieving and maintaining this foundation of ideologies is legislation, assistance and supervision. The central government is responsible for this legislation to happen. On the other end, municipalities have the responsibility on a local level to ensure that social services are provided while regional administration will attend health care. A person’s individual ability to live an independent life is essential where self- and co-determination and integrity are core beliefs. Therefore, the Swedish disability approach should support people with disabilities to participate in society on equal terms. If this should fail due to something connected to the person’s environment, policies should provide a strategy to prevent these disadvantages (Ibid).

Arvidsson (2019) has researched how LSS can go from policy to practice. The study focuses on how the organisation occurs at the municipality level and uses qualitative approaches and methods involving practitioners. The field is described as multifaceted and heterogenetic; LSS is dynamic and complex. The result shows how many actors find it challenging to interpret different policies and transform them into practice. For example, a meeting between policy and training creates a specific need for translation. When actors need to explain these meanings and sentences within the policy document, it creates situations for paraphrase. This will produce a paper whose only purpose is to clarify the policy meaning in the first place. Furthermore, the written text from the objectives of the LSS- legislation often lacks any practical guiding in, for example, pedagogic or care work. The need to create these additional documents shows how the legislation is seen as vague and unclear, which makes it necessary to translate it. With several different districts council within the same municipality, there is a considerable risk that these actors will struggle to make the same understanding without conflicts over the interpretations (Arvidsson, 2019).

Disability policies are often closely connected to health and medicine. The Swedish health services for people with disabilities are divided and organised into three different political and administrative levels. The national level is the highest one in the state, the county council at a regional level, and the local authority at the municipality level. For older people and people with different disabilities, care services are regulated by the framework laws such as

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the LSS, The Social service Act and The Health and Medical Service Act. These laws have specific guidelines in the framework and particular objectives of service and care to follow. Therefore, it increases the risk of multiple interpretations. However, both regional and local authorities have plenty of freedom to understand the law and implement these services according to their specific guidelines (Lilja, Månsson, Jahlenius, Sacco-Petersson, 2003).

A recent study by Nouf-Latif, Andersson and Markstöm (2020) has examined disability policies within two domains, employment and health. They analyse governmental bills and document where the aim is to see how Swedish disability policies meet the objectives of the ratified UN Convention on the Rights of Persons with Disabilities (CRPD). The result shows that it becomes problematic for stakeholders and authorities to implement the legal text when it gives too abstract guidelines. Even though the governmental responsibility within the health policy area exists, it has relatively soft governance with a more flexible and informal strategy for actors to implement. As mentioned earlier, these individual implications can make it hard to know what and how to enforce directions in a policy. However, the study also highlights the benefits of somewhat abstract guidelines. It can give professional and

organisational freedom and self-determination to prioritise local needs or a person’s requests or wishes. This is called the ‘cherry-picking of disability rights’ in their research (Nouf-Latif et al., 2020).

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Theoretical frameworks

Feminist critiques of neoliberalism

Neoliberal policies and reforms have led to individualisation of the right to health and a reconceptualization of health care which has led to profound changes in health care systems around the world. In the context of neoliberalism, people with different kinds of disabilities often tend to be negatively affected by this. There is an emerging discourse of abled - and non-abled bodies within the neoliberal discourse where disabled people are viewed as ‘costly bodies’ who use limited healthcare resources (Sakellariou & Rotarou, 2017).

Societies become more bureaucratic, and bureaucracy is increasingly prominent within professions today. Jonna Bornemark (2018), a Swedish philosopher, designates this as pedantic bureaucracy, meaning a world of measurements in which something is lost. When there is a higher demand for quality measurement through numbers and documents, the ability to relate to unique, concrete and individual situations gets lost. Bornemark provides a philosophical critique of the contemporary “measurability society” where administration grows at the expense of practical work. She argues that the New Public Management (NPM) system operating in Sweden has shifted the core business of care professions to concern administrative details instead. It puts more effort into having documents in order. The focus is on measuring specific goals, which creates dual realities where something that cannot be measured will not be visible. Bornemark (2018) describes these differences as a division between rationality, the strict, defining and measurable on the one hand, and on the other hand the non-knowing and non-measurable. The non-measurable works differently in that it requires a sensitivity for every individual situation. It cannot be standardized; instead, it requires caring, empathy, learning, participation, and compassion. This demands a presence within the unique situation and sensitivity towards the fact that you cannot always know and measure a person’s lived experience in time and numbers. Nevertheless, these concepts of non-measurements can often be found within policy documents. For example, no one would argue that compassion for another human being is not essential within care for the elderly and people with disabilities. However, something happens when these concepts are being

implemented and concretized. Well-being, independence, and meaningfulness are often a central part of policy documentation, but these become weak and too general during

implementation. It is common to use standardized, consistent, measurable goals within care for the elderly and people with disabilities. For example, estimated time of how long a

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shower will take or help with getting dressed. Even if it is stated that individual consideration must be taken, working hours are based on the standard times that create no space left

(Bornemark, 2018).

Disability and Bioethics

Bioethics can generally be described as "the study of ethical, social, legal issues that arise in biomedicine and biomedical research" (Garland-Thomson, 2017:326). Moreover, it can be described as an activity, shared and reflective examination of ethical issues in health care, health science and health policy. For example, while disabilities have been a frequent topic of medical science research and health analysis, critical interdisciplinary disability studies have for the past twenty years focused on narrowing that down to concern more about the human experience of what disability is (Garland-Thomson, 2017). The author argues that it is essential to establish a more direct relationship between the social sciences-based study of disability and the humanities within policy-making and practice. Bioethics can shape policy and practice by raising moral questions within meaning-making structures and understanding the relationship between social judgment and political policy. Garland-Thomson (2017) uses the term disability bioethics to describe a process of moving out of the context of primary medical- or health care and developing further into material environments, civic institutions, cultural structures, and interpersonal interactions, both descriptive and theoretically. It requires a way to rethink disabilities, from a problem to eliminate to a more accurate reality.

Embodiment

Embodiment is a key concept within disability studies. In this context, embodiment is understood from a phenomenological perspective, which means studying from a more philosophical interpretation of the conscious experience of a person’s subjective perspective (Wilkerson, 2015). Disability studies contribute to embodiment and feminist, postcolonial, and critical race approaches from Western liberalists understanding of personhood as rational and disembodied. A human body that requires additional care enables a different caregiving experience, personal assistance, and other forms of labour. Bodies in need of a

‘non-normative’ intake of nutrition from tube feeding might, according to Wilkerson

(2015), risk a socially imposed loss of personhood. It can create a dehumanisation of people who rely on feeding tubes or feeding assistance. For that reason, it is necessary to expand these normative definitions of what would constitute inclusion, both socially and politically

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(Ibid). In line with this, Garland-Thomson (1997) argues that the feminist perspectives most applicable to disability studies go beyond gender. This means carrying out a broader socio-political critique of systemic, inequitable power relations based on other social classifications concerning the body.

Food assistance

To feed oneself is a strong symbol of independence in Western cultures, whereas people who need assistance while eating raises questions. Food choice can be a basic form of power, such as control over consumptions, what kind, how much, during what times and under what circumstances. Reflecting upon the social construction of food from various disciplines can enable a person to see how it can create or maintain disabling boundaries and eliminate disabling and stigmatizing conditions (Gerber, 2007). The combined field of food and disability studies aims to raise awareness of the lived experience of disabled people concerning food and eating. Bodily and mental vulnerabilities are often perceived as something outside the norm when they should instead be recognized as a definitive part of human existence. A deeper understanding of the intersecting relationship between food, culture, and society increases the opportunity to see how eaters’ bodies are gendered in specific environments. People with disabilities and their experiences with food can illustrate the dynamics of cultural inclusion and exclusion where personhood and its recognition are represented through food practices. While disability studies regarding nutrition can

acknowledge challenges, the field can also give new and different insights. It can provide a more accurate description and analysis of the social reality of disabled people, which can lead to efforts toward social justice for this particular group (Wilkerson, 2011).

Specific cultural identifications on personhood and its physical ideals of a human body can make it challenging to acknowledge someone using a feeding tube for nutrition as (still) a person. For that reason, the disability view on food studies can generate necessary knowledge and terms for health and normativity politics concerning processes of categorisation linked to food ways (Ibid).

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Method, material and ethical considerations

In this section, I will present my chosen methodological approach to this study. This will be followed by discussing the empirical material, limitations of the study, and some reflections about ethical considerations.

Case study and critical policy analysis

I have chosen to use a case study approach for my research. A case study is a good

opportunity to investigate one particular issue or topic in-depth and, by doing so, discover underlying processes (Denscombe, 2007). Since I have chosen to focus on the legal texts about personal assistance entitlement related to basic needs, such as help support for breathing and nutrition feeding, it focuses on the same topic from the preparatory report, referral responses and the government bill. According to Yin (2018), a case study’s principle tends to illuminate a decision or set of decisions by asking why, how, and what result. What is feminist critical policy analysis? It is a perspective to empower institutions to transform and support thoughts and policy actions beyond a certain biased way of thinking and particular behaviour in policy analysis traditions. These perspectives are necessary to eliminate and change patriarchal patterns and is gender-conscious, not gender-blind. It aims to expose gendering and its limitations in gender-explicit as well as gender-neutral practices. Therefore, the theoretical and methodological approaches are both from a feministic approach when conducting critical policy analysis. By problematising questions concerning decision-making processes, simply asking questions differently has the opportunity to show

asymmetric gender power relations (Bensimon & Marshall, 2003). Disability and its power dimensions are formulated in the following quote by Hall (2019);

Disability is not fundamentally a question of medicine or health, nor is it just an issue of sensitivity and compassion; rather, it is a question of politics and power (lessness), power over, and power to. (Hall, 2019:1)

Intersectionality-based policy analysis (IBPA)

Today, intersectionality is a well-establish analytical approach for theorising identity and oppression (Hankivsky & Cormier, 2011). The aim is to capture how different categories, in other words, power axes, dimensions, and variables, interact in forming life conditions and identities for different groups in society. An intersectional analysis illustrates how these different dimensions, such as race and gender, for example, intersect with each other

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(Crenshaw, 1995).Intersectional paradigms are a reminder that oppression cannot be reduced to one fundamental category since oppressions work together in their way to produce

injustice. The matrix of domination refers to how these intersecting oppressions are organised. Whether the particular intersections in question are structural, disciplinary, or interpersonal, these power domains can reappear across different forms of oppression (Hill Collins, 2000). Thus, while intersectionality offers theoretical insights, it is furthermore a method of analysis. It is also a practice, a commitment to accounting for multiplicity where intersectionality brings a political commitment to show and fight against injustice (Garland-Thomson, Katie, Kent & Robertson, 2018).

While Crenshaw’s perspective of intersectionality was embedded from black feminism and particularly the intersections between race and gender, the intersectional perspective in this study aims to illuminate how the economic, social and the ‘interhuman’ interact within disabilities. With inspiration from the IBPA- model to apply intersectionality in policy analysis, I find it beneficial to use this perspective to analyse further the complexity and different power dynamics related to disabilities and highlight what is problematic with the chosen legal texts. I find the IBPA approach by Hankivsky1 suitable since it is directed towards health policies and can critically analyse health policies. Hankivsky (2012) describes the IBPA-approach in the following way:

a multi-disciplinary approach to public policy that aims to explain the interaction between institutions, interests and ideas in the policy process […] an interdisciplinary field that investigates how health policy is made, what it is, what it might become, and what its effects are […] as the generic name for a range of techniques and tools to study the characteristics of established policies, how the policies came to be and what their consequences are. (Hankivsky, 2012:10)

Hankivsky model of IBPA is in line with the arguments that Bacci and Eveline (2010) has made, namely that there is an increasing awareness that a policy alone cannot be the transforming force in society; however, it can significantly affect social justice in societies. Policies can show how ‘problems’ can be socially constructed within guidelines. Further, it can dismantle how these policies uphold inequalities in their amplitude and later in their

1_{Olena Hankivsky, associate professor in the Department of Political Science and adjunct professor in the} Department of Women’s studies at Simon Fraser University, British Columbia, Canada.

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implementations (Bacci & Eveline, 2010). Using an intersectional method and approach when constructing a policy analysis can bring out necessary insights for improving the health policy’s influence to be more inclusive, effective, and efficient. This is important since it can expose imbalances between and within groups in society and address inequalities. Public policy is constantly changing and needs to be since political, economic, and environmental conditions and health crises create new challenges to address (Hankivsky, 2012). Although the IBPA has 12 sets of guiding questions (see appendix 3), Hankivsky argues that it is unnecessary to use all of the questions. The two key features of the framework are simplicity and flexibility, which allows applying some of the relevant questions to the specific policy context of choice. I will describe and discuss my choice of questions for my analysis in the next section.

Applying IBPA in this study

The guiding principles (appendix 2) have been helpful in critically examining my chosen material, the preparatory report, the referral responses about the report and the government bill. It has enabled me to problematise and performs a more profound analysis of this issue. I was inspired to use four questions from the IBPA- framework (appendix 3), which I have adjusted to fit my particular case. First, to draw attention to and identify what is problematic in the legal text about basic needs and entitlement to personal assistance, I chose How are basic human needs understood in the legal text? Then, the sub-question to this question is What are the referral responses to the legal text? The preparatory report received plenty of criticism from the disability rights community, making it a valuable base of critical thinking regarding the policy issue. The next question: How are groups differentially positioned by the legal text? aims to show how the identified problem in the policy have created imbalances between and within specific groups. A sub-question to this question is What underlying inequalities can be seen in the legal text? This question can allow the researcher to look beyond the policy to demonstrate underlying assumptions, structures or normative ideals that can affect the policy result. I decided that these questions will be sufficient for my analysis to identify the policy problem and the referral responses to the policy, highlight affected groups and reflect upon underlying inequalities.

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18 Empirical material

My material for the intersectional policy analysis is the preparatory report SOU 2018:88, the report’s referral responses, and its result in the government bill - proposition. 2019/20:92 “Personlig assistans för samtliga hjälpmoment som avser andning och måltider i form av sondmatning” i.e. Personal assistance for all support related to breathing and nutrition feeding.” This means that the analysed material will concern the same topic but in different documents. These documents are all in Swedish; all translations into English are made by me. I have accessed all the material regarding the policy online since they are publicly available at the Government offices of Sweden. In this policy analysis from secondary sources, I do not need to consider the same ethical questions as interviewing or observing informants.

When the Swedish parliament makes decisions on new laws and changes to some laws, a government inquiry is carried out. This is done either by a committee or a person acting as a special investigator. When the investigation is completed, the investigator, committee will write a proposal with suggestions of how to change the law to the government, a so-called report. After that, the report is sent out to consult relevant authorities, organisations,

municipalities, and other stakeholders to comment on the so-called referral response. If many of those who respond are negative, the decisions may not proceed with the question or find other solutions than proposed by the investigator (Regeringen, 2015b).

Limitations and delimitations

LSS legislations and policies cover several different areas. Therefore, I have limited it to only focus on the legal texts concerning the chosen issue. Furthermore, I have delimited it to deal with only personal assistance entitlement and necessary help with breathing and nutrition feeding. Regarding the questions for this study, I decided to choose four out of twelve

questions. I find that reasonable from my research approach since I made a small but in-depth case study. However, these law interpretations have had a significant effect on many who have been denied assistance they are entitled to due to differences in understanding the written law.

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19 Situating my position

I have a personal and professional interest in the field of disabilities. For that reason, I have a strong relationship with the disability community and engage in disability rights questions. Therefore, I must also situate myself in the context I am writing and my context of living. It requires reflecting upon my epistemological standpoint, shaping my viewpoints and forming my experiences, thinking, and acting. If I describe and situate myself in my research, I would say that I am a white, middle-class cis-woman, born at the beginning of the 1990s in a

middle-sized town in Sweden. I have the lived experience of growing up having an older sister diagnosed with a comprehensive disability since birth. When performing research, it is highly relevant and necessary to position yourself in your study with situated knowledge and the surrounded context since knowledge is always situated.

To produce knowledge is a challenging and demanding task. As a researcher and a human, I will not be able to remove myself from the inevitable fact that my situatedness will impact the interpretation of my material. According to Lykke (2013), Disidentifications is a term of subject position located in-between identification and counter identification. I find it

interesting to reflect upon my situation as I simultaneously am formed by a close, familiar perspective of disabilities through my sister while identifying myself as an abled, privileged woman at the same time. I always carry these two backpacks with me while analysing based on my experiences and my ‘outside’ perspective of not relating physically to these questions. With that said, my awareness and acknowledgement of my position within this particular research field has made me more conscious of any potential influences and biases and accepted that this might be another limit for the objectiveness in my study. An option is to use partial objectivity instead of the researcher in ‘medias res’ for the particular researched topic and the researcher's situatedness. Suppose the researcher can reflect upon their own ‘siting’ and positionality regarding body, time, space, history and intersecting power relations. In that case, it can create a more open situation of partial objectivity and situated knowledge (Lykke, 2010; Haraway, 1991), and for that reason, my positionality and

embeddedness within this topic have been necessary to reflect upon throughout this research process. It is also essential to accept that I will be in some intermediate position due to this topic. I would describe it as an outsider in terms of ableism and embodiment; I cannot relate physically to that. On the other hand, I feel like an ‘outsider within’ since I emotionally feel like a part of the disability community and engage in disability issues because of my sibling position.

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Analysis and discussion

The following section will present an analysis and a critical discussion regarding the findings of this study. In the first part of the analysis, questions one and its sub-question about the referral responses will be applied to the preparatory report. The second part of the analysis, question two and its sub-question illustrate inequalities and underlying problems regarding the policy in both the preparatory and government bills. Therefore, it will be some

overlapping between the questions in the material.

Part I - How are basic human needs understood in the legal text?

Preparatory report SOU 2018:88 regarding help with breathing and nutrition feeding.

The Supreme Court administration has made several decisions concerning personal assistance and basic needs. All practical needs are namely not regarded as basic needs. The requirement is that it needs to be perceived as very private and sensitive to personal integrity; it must reach the integrity demand (appendix 1). It must also demand a certain amount of time. The need for the help of three hours per week for toilet visits, hair washing, tooth brushing, nail care were not considered extensive enough to entitle personal assistance (SOU, 2018:88).

In 2019, granted assistance hours decreased, and a significant reason for that has been the harsh case law about self-care and personal hygiene. When the government commissioned the Swedish Social Insurance Agency (Försäkringskassan) to reduce costs of entitled

assistance, they leaned on the praxis from 2009 and 2012 who said that nutrition feeding was not ‘basic needs’. The definition is quoted below:

Help with connection and disconnection and adjustment of tubes is usually sufficiently private and sensitive to personal integrity. However, the actual feeding through a tube, i.e. nutrition supply, is typically not private enough. This is because tube feeding is performed in a different way than feeding through the mouth. Feeding through the mouth involves very close interaction between the individual and the assistant. Corresponding interaction does not usually occur during tube feeding. (Försäkringskassan, 2018:4:1)

The discussion has been whether nutrition feeding with support by a tube should count as ‘a sufficient private matter’ since the person who performs the help does not necessarily need to know the person receiving the support. The legal text’s description of private matter was that

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eating assistance through a tube cannot be classified as eating assistance through the mouth. Therefore, the interpretation was that connecting and disconnecting a tube and receiving nutrition does not have to be seen as private (SOU 2018:88).

One can say that the interpretations of the legal text are highly excluding people with eating assistance through a tube. I would argue that a noticeable issue here is that the legal text has its basis from a normative perspective from the beginning. It already establishes what is considered normal, expected, private and non-private. As a result, understanding a body as abled-bodied will determine what the disabled body is by dividing eating into normative and non-normative eating. It produces assumptions about the body, which according to Wilkerson (2015), will increase the risk of losing personhood and an own definition of what part of the body is private. The legal text assumes that eating through a tube cannot be equalised with the same integrity demand as eating assistance through the mouth. Thus, the legal text illustrates a normative pattern of a typical way of consuming food. As shown in the

embodiment theory, the dehumanization of the disabled body becomes clear in this legal text. The division of what constitutes normal and abnormal shines through with a patronising understanding of the human body, and the human value gets dismantled down to an object. It becomes problematic when discussing what part of the body sphere is personal and private since it disregards the person.

Concerning food assistance, as discussed by Gerber (2007) and Wilkerson (2011), food is a highly valued part of a person’s life and comes with certain expectations. Eating food is not just about the actual eating; it is a part of the culture you live in, in what context you eat and with whom. It is not seen as just a personal act; it has a clear social part in the society. Therefore, eating is closely connected to the physical body and a significant part of a social body, depending on the circumstances. This makes the body become some sort of collective body and integrated individual body. It demands unquestionable body integrity in these social contexts that become valued how it fits into that ‘certain expected eating culture’. The legal text has the intention to make eating outside of this ‘expected eating norm’ and presents food assistance as an impersonal part of a person’s eating strategy. The interpretation of the legal text has divided and fragmented the body. The body, abled or disabled, needs to be seen as a totality, that you are your whole body. The presumptions in the legal text show how first, the body is fragmented and second, the body is placed on a sort of a hierarchy of needs where it is decided what part of the body is more sensitive, has more integrity than the other, which

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makes that part isolated and detached from the rest of the body. In this case, the interpretation of the legal text establishes that eating from a tube is seen as a non-private act. Thus, it is not as important if the person receiving the assistance knows the person assisting very well. The legal text claims that it requires a closer interaction when helping someone eat through the mouth. Personhood and the body are deeply intertwined components of a person’s integrity. To decide that a body has less integrity based on a particular type of assistance eating and to restrict assistance hours should be seen as an inhuman and insensitive act where the policy loses the understanding of the human value in an administrative, quantifying process.

Furthermore, in this particular interpretation, the individual body in need of additional care becomes an object that care is performed on, not for. The understanding of the legal text also shows that basic needs can be put apart and placed in different orders of importance. In this case, it has been a strategic move to reduce hours of assistance. By dividing some basic needs into more private, it has dehumanized the person’s body. Basic needs get labelled as various tasks that can be noted as completed or accomplished. As emphasised in the research by Thompson & Svaerd (2019), Sweden challenges the governing principles to support people with disabilities to live an independent life where integrity is an essential part of it. The decisions to continue to narrow down the criteria of assistance entitlement is a completely contradictory answer to this set of values that the law claims to stand for. Independence and freedom to decide and influence over their own life have a limit. This limit is set by the authorities and the legal text with room for interpretation.

Supervision of self-care should not be a need that gives the right to assistance, but for those entitled to personal assistance, such health and medical care measures considered available to be performed as self-care should be part of the initiative. (SOU,

2018:88:387)

Personal assistance does not intend to include such care interventions which health- and medical personnel are responsible for performing, but self-care can be included in the LSS- assistance initiative. The Swedish Social Insurance Agency (FK) said in 2016 that self-care measures could not be viewed as a basic need and therefore not give the right to assistance. Their decision leaned on a ruling that the Supreme Court (HFD) had previously done. However, since then, HFD has decided that self-care that addresses any basic needs can give entitlement to assistance if sufficiently sensitive; it should reach the integrity demand. The

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effect of this verdict has made some people afraid to apply for more assistance hours since they cannot risk losing the entitled hours they already have (SOU: 2018:88:387-88).

I would say that this creates additional obstacles for personal assistance to be, as intended, personal. If people have to depend on outside medical help, at specified times, how is it unique, individual, and flexible for the person with the disability? The investigation showed that relatives had to take a greater responsibility than before to meet the need for support of supervision and care. The requirements of entitlement of personal assistance, according to LSS, are challenging to meet with other initiatives since it requires knowledge about the individual and needs to be performed by a limited number of people. By rejecting assistance for self-care measurements that could be performed in the home reduces the right to have personally designed assistance initially intended by the law.

- What are the referral responses to the legal text?

The referral responses about the preparatory report SOU 2018:88.

This question highlights the referral responses to the new suggested implementation of basic needs into the law. I have chosen the most prominent arguments and most recurring opinions concerning support for breathing and nutrition feeding.

Disability rights organisations and other stakeholders strongly argued that there is hardly a support effort to replace LSS initiative 2, personal assistance. The argument that different types of help support other than personal assistance were rejected for several reasons. The National Federation for children and youths with disabilities (RBU, 2019) responded to the Ministry of Health and Social Affairs that it is unreasonable and becomes highly problematic when FK has a mission to interpret an unclear legal text from the beginning. For example, it is not reasonable to divide what moments are enough ‘sensitive' and reach the integrity demand’. RBU (2019) demanded a clarification so that these measures should not apply to the government bill and ‘lock’ in these examples given in the preparatory report. Further on, it needs to be clarified to leave no room for other interpretations that could jeopardise legal rights for the person with extensive support (RBU, 2019).

Different power dimensions have caused life-changing consequences for many individuals, which means that they should be entitled to assistance but are denied due to harsh and

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disrespectful praxis. First of all, it demands a deeper understanding of human needs and how problematic these perceptions of eating become in the legal texts. Second, the unclear

definition of the legal text has affected people’s lives in practice by reducing food assistance through tube feeding to a simple act of non-personal space and an un-private act. Finally, an intersectional analysis of the power dynamic in this policy shows how restricted the ‘one-size model’ of a basic need. It shows how power structures shape certain subject positions and categories where food assistance needs become dehumanised.

In some cases, more loosely described guidelines enable organisations and municipalities to adjust more according to individuals’ needs. This ‘cherry-picking of disability rights’ that Nouf-Latif et al. (2020) highlights in their research about policy implementations are

something that has not been in favour in this case. The HFD argues that the preparatory work of LSS has not specified what is entitled to the concept of a meal. According to the court decision, how nutrition is given should not be decisive, and for that reason, nutrition feeding with a tube should be equal to any other kind of meal. However, the judgement only thought that putting in the tube and taking off the tube would consist of the meal while preparing and cleaning chores around it should not be included. When the law allows room for

interpretation, it has risked continuing the current case law, and the people who have lost their assistance will not re-claim their right to support nutrition feeding. The time allowance is crucial in this case. Only counting the time to put in the tube and take off the tube and not the time the nutrition feeding carries out due to the integrity demand causes some people not to reach the 20 hours per week requirement for assistance entitlement.

Moreover, it is noted by the disability organisation Independent Living Institute (2019b) that the law-suggestion is not a codification of the case law without a tightening of the conditions for personal assistance concerning the basic need of ‘communication with others’ and ‘other help that presupposes knowledge of the individual’. The lack of clear definitions of basic needs in the legal text creates a hierarchy among the basic needs, which contradicts what the preparatory workers intended with the law. The national disability association JAG (2019) argues that when it comes down to essential human needs such as breathing and nutrition feeding, it is vital that a person receives help regardless of the character of the support. The suggested amendment of adding the word nutrition feeding in the law is completely

ineffective if it is only a clarification and confirmation of the current legal situation based on case law. Since the ruling of HFD states that it is associated with other meal, the preparatory

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report has not presented any new changes or details on what measurements of nutrition feeding may give entitlement to personal assistance. Furthermore, it is stated in the law concerning nutrition feeding meals that it would not lead to any change in the right of

personal assistance and assistance compensation for anyone. This means, in other words, that all those who have been denied compensation for eating through a tube will have an entirely unchanged situation. And last, implementing this current interpretation of the legal text would also mean accepting FK narrow and strict interpretations of basic needs, and the integrity demand remains along with the time condition (JAG, 2019).

Part II - How are groups differentially positioned by the legal text?

This question will analyse how representation in the legal text has shaped understandings of different groups of people and their assistance entitlements for basic needs.

The interpretation of the legal text has particularly affected three groups-. These are persons who need support for their basic need in terms of breathing, nutrition feeding, or epilepsy. A particularly vulnerable group in this issue are children; children under 12 years old are overrepresented in the group that has been affected. A common reason children are not entitled to personal assistance for basic needs to the same extent as adults are mainly because time is covered by parental responsibility. As a general rule, time is also removed from school and preschool when children’s right to assistance is examined (JAG, 2019). From a child’s right perspective, children with disabilities must have the ability to stay in their home and live together with their family, despite a greater need for assistance. The effect of the changed law enforcement is the additional withdrawal of assistance entitlement. It has caused further limitations of entitled assistance and mainly affected children with complicated help-support such as breathing and respiratory problems. At the same time, costs and

responsibilities have shifted from the state to municipalities and put further pressure on close relatives who had taken on even greater responsibility for the support, care, and supervision (JAG, 2019).

I would say that this creates a vulnerable and challenging circle to maintain for families in the long run. The outcome of losing entitlement to assistance hours has life-changing

consequences. It places high demands on the families resources in terms of economic, social network and relief support within the family when help from outside is denied due to

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value in health policies and transform it into a quantity number. Sweden has committed to following the UN Convention on the Rights of the Child (Barnkonventionen). It highlights autonomy, the right to live an independent life, and access to various forms of community service, such as support in the home and to participate in society to prevent isolation.

However, this is precisely what happens to some children whose families cannot take on the whole responsibility and monitor all hours since it is both a mental and physical burden to carry on their own. These parents or parent who needs to be there for their children in need of extensive support are highly unlikely to work outside the home in such an exceptionally vulnerable situation. This illustrates how the loss of assistance hours for children can also make it an economic and a class issue to acknowledge.

Another domino effect of this is rarely spoken about, in which children who cannot receive enough support in their home are being moved to a so-called children’s home. One of the critical elements of the LSS- reform, when it was implemented, was that children should not have to be placed in an institution but have the opportunity to live together with their family and receive necessary help and support with their needs in the home. Socialstyrelsen (2019) report demonstrates how children who have lost municipal- and state entitlement to personal assistance increasingly end up in children’s homes. In 2016, children who lost their assistance entitlement and got a place at children’s home were 15 children. In 2017, that number was 40. Therefore, it violates human rights according to the Convention on the Child’s Rights to deprive them of their childhood with their own family. Nevertheless, the fact that these children’s homes still exist and the underlying reason they do that and keep increasing is getting very little attention. As mentioned earlier, disabilities and ableism is a constant power struggle from different directions, and in this case, budget cuts often occur at the expense of young children.

There is also an issue of the division of ‘high’ and ‘low’ functioning within intellectual disabilities such as autism and on the autism spectrum. These different labels can often have a dehumanizing way to estimate a person’s need for support. It can also ignore the fact that getting the right help will affect a person’s functional level. Oppression is discrimination that intersects through uneven power structures, and dealing with systemic injustice connected to ableism creates an additional burden for people with disabilities, their families and

caregivers. Demanding reasonable support that makes sure that disabled people’s needs are being met is not asking for too much. Whether disabled people chose it or not, politics, policymaking, and legislation will significantly impact their lives. To a marginalized group

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such as people with disabilities, as presented, policies can have a life-changing and devastating effect when a normative pattern has shaped whether a part of the body will be perceived as ‘private enough’. As argued by JAG (2019), it is the need that should be

decisive and not the character of the support. Also, it does not acknowledge how offending it is to assume what is private or not for someone else. To have an integrity demand in a legal text for everyone to follow restricts peoples own perception of integrity.

The requirement that an individual’s basic needs, such as help with personal hygiene, getting dressed and undressed, meals, communication or other help that requires in-depth knowledge of the person, should exceed 20 hours per week to be entitled to state compensation of

personal assistance was presented and introduced in 1996. This approach still corresponds to current practice (SOU, 2018:88).

The introductory definition of LSS and the concept of personal assistance must not imply that any group currently covered by the legislation is completely excluded from the entitlement of personal assistance. Thus, for example, people with only

psychological disabilities should continue to be entitled to personal assistance in certain special cases, namely where the nature and extent of the mental disability entail the need for help with basic need a person can, e.g. due to their psychological disability be completely unable to manage their own hygiene or ingest food […]. (SOU, 2018:88: 945)

In the quote above, the legal text explicitly says that the initial decision for the basic need- requirements of 20 hours or more was a way to avoid rising costs. But, at the same time, it emphasises the importance of making sure that no one is left out of the right they are entitled to. I would say this is where the inconsistency starts. To reduce hours of assistance

allowances, there must be a change of what counts as a basic need and a difference in the time frame for taking care of that specific need. The following quote shows how the integrity demand is present and also the unclear formulations for it.

Self-care that pertains to one of the basic needs can, if the help needed is sufficiently sensitive, entitle to the right of personal assistance, and nutrition feeding should be considered a meal intake, a basic need. With the help of communication with others, unique knowledge of the disabled person are required for communication—only people

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with psychological disabilities can be considered for the basic need ‘other help that

requires knowledge of the disabled person’. (SOU 2018:88:354)

Preparatory workers of LSS have emphasised that understanding a person without any physical obstacles in their everyday life can still be unable to take care of their basic needs due to psychological problems. In 2014, FK estimated 1900 persons to have assistance

allowance according to the fifth basic need, which corresponds to 18 percent of the number of applications. However, those who received a decision about assistance allowance between 2015-2017 was hardly 8 percent for basic needs. This is evidently because of the decision HFD made in 2015. An important reason that the fifth basic need have had a significant meaning for several granted assistance hours is four verdicts previously made by the court. It meant more of a specific need for active supervision of supervisory nature and mainly concerned individuals from category 1, persons with disabilities such as autism or on the autistic spectrum entitled to assistance for those needs. Therefore, later verdicts have most likely affected the number of people who receive assistance entitlement and also the number of hours they receive on average to decrease. Consequently, it can be stated that introducing basic needs for ‘other assistance’ that presupposes in-depth knowledge of the person with the disability has contributed to increased costs of assistance entitlements (SOU 2018:88).

I would like to argue that this legal text chose to ignore the overlapping factors of physical and psychological abilities. Therefore it was an effective way to exclude entitlement to assistance support. The underlying mission was to make strict austerity measures and reduce costs of assistance compensation. To do so, FK finds its own interpretation in the law that could meet this requirement. With support from the previous verdict made by the HFD understanding of basic needs, it was possible to transform a human need into a measurable one, physical or psychological. The effects of this have narrowed down the number of people and excluded a group with physical needs of support for the basic need definition. For

example, since the HFD argued that all practical help with dressing and eating would not be considered a basic need unless it qualified for the integrity demand, fewer people reach 20 hours to receive assistance allowance. Two effects of this judgement have been noted in the preparatory report. The first is that people applied for assistance entitlement from the municipality instead. Or second, that the verdict made so that people who previously had assistance entitlement could no longer get it if their needs did not qualify for the integrity demand (SOU, 2018:88).

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In May 2016, FK clarified that self-care could not be seen as a basic need. The agency leaned on a verdict made in 2012 concerning self-care and basic needs. According to health - and medical law (1989:763), health and medical measurements should not by principle counts as to basic need and give assistance entitlement. However, health care interventions in self-care could be entitled as ‘other personal needs’ if the person’s necessary need would exceed the 20 hours requirement or more per week. This interpretation of FK’s law has increased the number of people meeting the criteria of assistance allowance hours. A newer verdict says that it is necessary to have the integrity demand to be entitled to personal assistance.

"Nutrition feeding should be perceived as meal intake and therefore be entitled to assistance but only if it is of enough sensitive nature,"(SOU, 2018:88 pp, 946-47). As mentioned earlier, self-care can enable people to stay in their home while receiving medical treatment or

assistance. This support can involve giving medication, help with breathing in the forms of respiratory support and adjustments, nutrition feeding with a tube or tracheostomy. An important reason for this to be possible is that medical technology development has created more opportunities for self-care in the home. It can contribute to less frequent hospital visits for people and more flexibility for people to live independently (SOU, 2018:88).

I find this discussion a bit challenging and contradictory. As mentioned, the health – and medical law needs to ensure that medical self-care within personal assistance is performed safely. At the same time, self-care in the home, when possible, is encouraged to support a person’s opportunity to be treated in the home. It is approved when the medical situation allows it. Then personal assistants can learn through delegation from authorised medical staff to perform health-related support. As intended by the law, personal assistance is a more flexible and individually adapted initiative to support a person’s basic needs. This makes a meal become a more natural part of the day. It will not be an act ‘of service’ instead a meal support when needed. There is a need to see disabilities as a part of a more natural diversity among people in societies instead of ‘fixable’. This aligns with Garland-Thomson’s (2017) arguments about disability bioethics. These integrated fields of disability and bioethics can generate more thoughtful knowledge and understanding about the human experience of disabilities within policy-making. The moral meaning of disabilities and their understanding as humans must take a more significant place in the policy process. As shown, disabilities is a highly political matter, and social change is essential to achieve any underlying policy

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reflectiveness about a more conscious sensitivity regarding complex ethical questions in disability policy issues. I also find this relevant for the medical decision-making process and the health care system, a deeper understanding of the lived experience of disability rather than just the normative medical and ethical standards of viewing disabilities. In the chosen legal texts of this study, what is missing are compassion, sympathy, and empathy towards

individuals’ personal experiences and their equal right to assistance support in their everyday lives.

To discuss costs and basic human needs side by side through the preparatory report is worrying to see. It is concerning to portray people with disabilities as ‘costly’ bodies, as discussed by Sakellariou and Rotarou (2017). For that reason, people with disabilities have unwillingly costly preferences on them from the start. To put people on a sort of scale, weigh the economic value against the human aspect, and expect no consequences. It is not possible to take away something without replacing it with something else, something better. The Swedish Government leaves much of the responsibility and opportunities for municipalities to protect individuals’ social rights. Regardless of class, age, gender, physical and cognitive ability, an equal society cannot accept hierarchies between individuals. As illustrated, there is a lack of clarity in the political message of how society views people with disabilities and how the culture treats and satisfies the need for support, service, and relief efforts. As

mentioned earlier, the gap between ideal and reality in the legal text becomes noticeable. For this to happen, there is a high demand for sympathy and understanding between people. It is especially problematic to forget the human rights value within health policies and becomes evident when the NPM-society keeps creating that demarcation into numbers and time framing how long a basic need should take. Human needs have to be seen as a continuum. Necessary needs should not be represented as a burden just because a person with a disability needs it to live a decent and more self-determining life. Families, where one member has a disability do not expect all abled decision-makers to understand every little detail in their lives fully. But, families should have enough freedom to meet their necessary needs themselves with granted assistance resources. It is not too much to ask; in fact, it is fair.

In an NPM society that thrives on measurement strategies and at the same time unlearn ableism, this society must also unlearn capitalist standards of productivity. It is essential to see that people are valuable regardless of whether they can contribute to the community. From this perspective, one can say that capitalism and ableism in the LSS-investigation are

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deeply connected. The injustice for people with disabilities can cause internalized ableism and that their needs are not valid enough. For that reason, it is highly problematic to view disabled people as ‘costly’ and an economic burden for society. Instead, one can argue that the actual burden is the lack of affordable support resources in an ableist, quantifying society. In line with what Bornemark (2018) has emphasised, I sense that the disability welfare state in Sweden has an increased need to transform people with disabilities into administrative categories. At the same time, there is a constant attempt to label and identify who has the entitlement to the assistance of society’s limited resources and who has not. This illustrates how the legal text became bureaucratic and measurable in its interpretation. Thus, for example, FK just took the sentence ‘only people with psychological disabilities’ out of its original context and, by doing so, managed to reduce assistance entitlements and costs. Although the purpose was not to exclude a group in lack of support, this is precisely what gradually has happened for the past few years. Overall, the legal text has a normative way in its description of disabilities and personhood.

The division and hierarchy of human parts of the body as more ‘sensitive’ than the other to evaluate assistance support is deeply concerning. This problematic discussion about

embodiment and disability is supported by Wilkerson (2015) and Garland-Thomson (1997), as well as the argument about food assistance by Gerber (2007) and Wilkerson (2011). These theoretical perspectives combined shows physical ideals of how a human body ‘should’ eat and how receiving nutrition from a tube becomes a ‘non-eating performance’ instead. Society’s expectation of a human body causes neglect of marginalized bodies. Socially accepted bodies that are visible continues to centred people with socially acceptable bodies. The mainstream expected body, the abled-bodied and norms of food assistance is still

noticeable even at the highest national level in Sweden. For that reason, society’s expectation of the human body rarely gets challenged, and it ignores the reality for many people with disabilities and chronic illnesses. The idea of how a disabled body looks can be deeply problematic and ignorant since assumptions and prejudices often significantly affect how the person will be treated.

I would say a disturbing gap exists between the legal text perception of human needs and actual reality. It becomes clear how the ‘measurement requirements’ overcome the

interhuman. The experience of disability is much more complexed, dynamic and heterogenic than representation is trying to present it. Disabilities need to be seen as a part of human diversity and as a spectrum of human experience by normalising and de-stigmatise

Quantifying human needs? : A case study of the Swedish disability policy concerning personal assistance support for basic needs