DREAM ITN
Final Deliverable
Ciara Brennan
Centre for Disability Studies, University of Iceland
Supervisor: Professor Rannveig Traustadóttir
Cluster 1, ESR 2
DREAM work package: The Right to Independent Living and the development of userled personal assistance
April, 2015
1 1.
Introduction to my My Researh Topic & Questions.
I write this reflection piece as the end of the DREAM project approaches. Three years ago, I
embarked on the project with high hopes that studying the Nordic experience of personal
assistance would address the questions I had in relation to barriers to choice, control and
societal participation that I encountered whilst working as a researcher with people with
intellectual disabilities in Ireland. In this chapter, I discuss how my understanding of
independent living was shaped and challenged over the past three years. The DREAM project
provided a valuable opportunity to carry out in-depth qualitative fieldwork in countries with
the most promising examples of independent living and personal assistance in Europe.
Qualitative inquiry was conducted in Iceland, Norway and Sweden. All are Nordic countries
that had implemented relatively extensive personal assistance policies. In this chapter, I share
a critical account of my journey as a disability rights researcher. I explore several stages of
the process, beginning with my experiences prior to the DREAM project and how these
effected my initial expectations. In light of this, I warn of the risks of policy entrepreneurship
without thoughtful acknowledgment of one’s positionality and in-depth analysis of key
principles of the Convention. I suggest that reflections on the learning process are critical for
the transparency and legitimacy of recommendations.
As DREAM researchers we are entrusted with developing recommendations to assist the EU
and its Member States in their efforts to implement the CRPD. Transparency is at the core of
legitimate research. As a qualitative researcher, it is my ethical duty to share an in-depth,
thoughtful account of the evolution of the project. A feminist approach to disability research
emphasises the importance of reflexivity and the researcher’s positionality (Thomas, 1999;
Traustadóttir, 2004; Walmsley & Johnson, 2003). “As situated knowers we, as researchers…
participate in the social world we are discovering” (Traustadóttir, 2004, p. 50). Harvey (2013,
p. 13) suggests that this is a two way street and researchers should “acknowledge the impact
we have on the research” on one hand, and “how our own identities can be influenced by the
process of carrying out research” on the other. Reflecting on one’s journey (the learning
process) is an exercise in transparency about how we arrive at our destination (findings and
recommendations). Otherwise, we perpetuate the risk of agenda-driven research and
predetermined, desired outcomes and recommendations based onselective, anecdotal
evidence.
2 2.
My Research Journey - “The journey begins before travellers depart”1
My experience of disability rights research predates the DREAM project. The learning
process began when I worked as a research assistant at the National Institute for Intellectual
Disability (NIID), Trinity College Dublin for two years. The NIID earned an esteemed
reputation for inclusive and collaborative research with people with intellectual disabilities in
Ireland. It promotes human rights and participation through education, research and advocacy
(NIID, 2014). On my first visit to the NIID, I was greeted by a large poster with the slogan
“nothing about us without us”. The NIID appealed to my interest in social justice and
pragmatic qualitative methods aimed at initiating social change. Over a two year period, I
worked on a wide variety of qualitative projects and reports, encompassing a wide spectrum
of topics including employment, education, bullying, and an evaluation of respite services.
Joining the dots between seemingly separate qualitative projects in Ireland turned out to be
valuable preparation for the DREAM research. The demands of working on several,
overlapping projects allowed little time to reflect or draw connections. However, after my
first year and the completion of several projects, I reflected on significant or reoccurring
themes emerging from the research. Barriers to choice, control and independence were
common threads running throughout findings. Interestingly, these issues emerged relatively
organically from qualitative inquiry, drawing on grounded theory methods for data analysis.
“Grounded theory methods consist of systematic, yet flexible guidelines for collecting and
analysing qualitative data, to construct theories ‘grounded’ in the data” (Charmaz, 2006, p.
2). The research did not explicitly seek to measure the extent to which participants exercised
choice and control over their lives, nor did it infer or attempt to measure these concepts.
Instead, flexible, open-ended qualitative inquiry was conducted. Topics and themes were
initiated by participants. A solid example of this emerged from an inclusive research project
conducted with anti-bullying advocates with intellectual disabilities (Brennan et al., 2011).
The report drew on the findings of collaborative qualitative inquiry between researchers at
NIID and an anti-bullying advocacy group led by people with intellectual disabilities. The
group wanted to know more about the nature and causes of bullying through inclusive
research. In doing so, we discovered some very interesting perspectives on bullying. The
1
(Charmaz, 2006, p2) 3 following extract explains a key finding of the research, some of which deviated from
previous definitions of bulling.
[Participants] referred not only to traditional verbal and physical types of bullying, but
also referred to imposed restrictions on their lifestyle which they perceived as a form
of bullying. Activities that their age-related peers engaged in routinely were not so
easily undertaken by those with a disability who may rely on the support or
authorisation of others (Brennan et al., 2011, p. V).
During my time as a researcher at Trinity College Dublin, I encountered many human rights
challenges. Ireland had not ratified the CRPD and the financial crisis lowered morale. From
my perspective, the pace of change at national level was painstakingly slow. Hence, I sought
examples of promising policies and practices elsewhere. This search triggered my interest in
Nordic countries. I was familiar with the Centre for Disability Studies at the University of
Iceland through my work in Ireland. For such a small country, Icelandic disability studies is
highly regarded in Ireland. The DREAM work package focusing on independent living and
personal assistance at the University of Iceland was a perfect opportunity to gain in-depth
insights into promising practices in a Nordic context.
- The DREAM research
The overall objective of my DREAM work package was to “chart progress toward
independent living and user-led personal assistance across Europe. Provide a deep and critical
understanding of the meaning of independent living and community inclusion and
recommend practical steps that might be taken at both European and Member State level to
bring practice more in line with Article 19 of the CRPD”. While the aims and objectives were
clear, many subjective decisions had to be made regarding the focus of the study and the
methodological approach. From the outset I decided that the research would aim to explore
personal assistance based on the experiences of multiple stakeholders. I learned the value of
qualitative inquiry, drawing on grounded theory through my work in Ireland. The
requirements of my DREAM work package was challenging in this respect. Article 19 (b)
was the focus of the research and I was required to recommend practical steps that might be
taken at both European and Member State level to bring practice more in line with Article 19
of the CRPD. The wording of Article 19 is inferential and presupposes that personal
assistance is a means to achieving desired outcomes. Many of the concepts underpinning
4 Article 19 reflect the key principles listed in Article 3 of the Convention: freedom to make
one’s own choices, full and effective participation in society and independence of persons.
Article 19 outlines that states should “recognize the equal right of all persons with disabilities
to live in the community, with choices equal to others, and shall take effective and
appropriate measures to facilitate full enjoyment by persons with disabilities of this right and
their full inclusion and participation in the community”. Article 19 (b) specifies that “persons
with disabilities have access to a range of in-home, residential and other community support
services, including personal assistance necessary to support living and inclusion in the
community and to prevent isolation or segregation from the community”.
Without my previous research experience, and without guidance from my supervisor, it may
have appeared logical to construct the research in a way that would investigate ways of
implementing Article 19. Instead, a qualitative research design was developed to unpack and
critically reflect on key concepts underpinning the Article based on their meaning for
different stakeholders. Qualitative inquiry provided the opportunity to gain in-depth
understandings and meanings of complex experiences and social phenomena (Bogdan &
Biklen, 2007). The research design was “exploratory and hypothesis generating rather than
hypothesis testing” (Corbin & Strauss, 2008, p. 25). For instance, a hypothesis testing
approach would presuppose the nature and desirability of independence. Such an approach
may ask the question: How can independence be achieved? On the other hand, a hypothesis
generating approach looks for meanings and understandings of independence. This approach
would pose the question: how do people understand independence? I would argue that the
latter question is far more insightful and should always precede the first. Therefore, with
guidance from my supervisor, we developed a flexible research proposal, covering a very
broad range of topics relating to personal assistance and independent living. Qualitative
methods comprised interviews, study visits, participant observations and desk research. The
range of methods allowed for “sufficient flexibility and freedom to explore a topic in some
depth” (Corbin & Strauss, 2008, p25). In the beginning, the scope of the data collection was
exploratory and open-ended. For instance, interviews were flexible and not based on a strict
schedule. This was to allow for themes to emerge relatively organically from interviews and
observations. The emphasis was on “understanding the research participant’s perspective,
meanings and experience” (Charmaz, 2014, p56).
5 - Methodology: Participants
One of the most challenging decisions was who to involve and the nature of their
involvement. Identifying participants, inclusion and exclusion of stakeholders is subjective,
yet fundamental to the research outcomes. Selection was a challenge because disabled people
comprise a diverse cohort of the population. The Convention does not contain a formal
definition of disability. The word “disabled” is problematic because it is “used as a blanket
term to cover a large number of people who have nothing in common with each other, except
that they do not function in exactly the same way as those people who are called 'normal'”
(Brisenden, 1986, p 177). The constant comparative method of grounded theory research
allowed for a gradual approach when selecting participants which were recruited throughout
the data collection process. Key informants were purposefully selected in the initial stages of
the research. Persons considered to be leaders of the independent living movement in each
country were invited to partake. Participants comprised persons who were actively involved
in the independent living movement at national and European level. During these interviews,
participants explained their struggles with policy makers and municipal administrators.
Therefore, it was decided to interview policy makers and municipal administrators involved
in the Icelandic policy making process. The research was conducted with three key
participant groups, all of whom have comprehensive knowledge of independent living and
personal assistance at national, local and European levels. They were: leaders of independent
living organisations, parents involved in independent living organisations and finally, policy
makers and administrators responsible for overseeing policy and legislation.
- Methodology: Data collection
Another key challenge was country selection. Countries that have implemented relatively
extensive public policies permitting personal assistance or direct payment schemes have
varying, diverse approaches. Initially, it was decided that Iceland would be the first case
study. I arrived in Iceland at an important time for the Icelandic independent living
movement’s struggle for personal assistance. The Ministry of welfare was in the process of
developing guidelines for a pilot project for personal assistance at municipal level. In the first
interviews, many Icelandic participants described how they were influenced by earlier
developments in Sweden and Norway. Hence, the decision was made to collect data in both
Sweden and Norway. The Swedish phase was the most intensive of all three countries.
Sweden was the first of the Nordic countries to implement personal assistance legislation in
1994. Furthermore, Sweden had the largest number of personal assistance users. I carried out
6 my DREAM secondment in Stockholm with the JAG organisation, a personal assistance cooperative, and had the opportunity to travel around Sweden meeting activists with the
organisation. The research carried out as part of the secondment was mutually beneficial. The
organisation sought extensive information on Article 19 and I sought more information on
personal assistance in the Swedish context. In addition, I had the opportunity to interview key
administrators at national level and leaders in the Swedish independent living movement. The
final phase of data collection took place in Norway where I carried out a study visit to the
only two Norwegian independent living co-operatives and interviewed its leaders as well as
administrators in municipalities.
- Methodology: Data analysis
The research started with data collection and analysis. Data was constructed through
“observations, interactions and materials that we gather about the topic or the setting”
(Charmaz, 2014, p3). The constant comparative method of grounded theory was used to
analyse qualitative data from the beginning of data collection. This involves searching for
central themes emerging from data “and to continue looking (and interviewing) until the new
information obtained does not further provide insight into the category” (Creswell, 2007, p.
160). Grounded theory requires beginning analysis in the early stages of data collection, in
which data is separated and sorted using qualitative coding (Charmaz, 2006). Qualitative data
comprised interview transcripts, field notes, observational memos, website and media
materials, literature, policy and legislation. Important issues surfaced as the process continued
and interviews became more focused.
3.
My Formation as a Policy Entrepreneur.
- How the research journey shaped and challenged my understandings.
I write this chapter as the end of a three year journey in the DREAM project approaches. As I
mentioned in the introduction, the difference between expectations and outcomes should
highlight the risks of policy entrepreneurship without thoughtful deconstruction of underlying
principles of the Convention. Flexible qualitative methods and grounded theory analysis
proved to be valuable when encountering unexpected situations. For instance, I was not
expecting the extent of challenges and contentious issues that emerged in countries that were
commonly considered the most promising examples of independent living and personal
assistance. Hence, the learning process has led down some unexpected paths. I have learned
7 to avoid my own preconceptions at the expense of lived experiences and diverse, fragmented
viewpoints. It is incredible to think of the different outcomes if the research had solely
focused on reviews of literature, policy and legislation. The richness of the findings is located
in participant’s experiences. Gaps between previous literature and the data collected for this
study is the point at which new knowledge is generated. In this final section I give a few
examples of my initial expectations and how these differed to the findings.
- Deconstructing concepts and principles
I embarked on the DREAM project hoping that the ideology of independent living and
personal assistance was a means of addressing many of the barriers encountered in Ireland.
An initial review of literature and policies regarding independent living and personal
assistance was promising. Personal assistance was particularly appealing because it emerged
from a grass roots, independent living movement, a civil rights movement with origins in
Berkley, California in the late 1960s (DeJong, 1983). Campaigners demanded choice, control
and independence over their lives. The vast majority of literature on independent living
emphasised the positive impact personal assistance had on the lives of disabled people and
the extent to which it had enhanced choice, control and independence (Gramlich, McBride,
Snelham, Williams, & Simons, 2002; Williams & Holman, 2006). However, I exercised
caution and approached the research with an open mind. Concepts such as independence,
choice and participation are value loaded and disputed within the literature. There is a small
amount of literature warning of the dangers of inferring concepts onto participants. For
example, (Wehmeyer, 1998, p. 11) critiques common constructs of control in relation to
persons with cognitive disabilities:
One of the drawbacks to the use of the term control is that many people view it as an
absolute. That is, when they are told that self-determination means control over one's
life, they think in terms of control as absolute dominion and authority, instead of other
synonyms like influence, direct, or manage.
Others have challenged dominant concepts and discourses associated with personal
assistance. For instance, “many different actors are eager to claim ownership of the concept
(empowerment), and to assign it and adjust it to their agendas” (Bonfils & Askheim, 2014,
pp. 62-63). The same authors reference another study by Fleming and Ward. (1999) to
illustrate this point.
8 [Empowerment is] a conceptual deodorant, used to justify propositions which at root
represent varying ideological and political positions, obscuring conflict and
difference, and in the final analysis potentially a “gilded vehicle” of social control and
professional self-interest (Fleming & Ward, 1999, p 370).
Some criticised dominant principles underpinning personal assistance and the independent
living ideology. Many such criticisms were based on presumptions about the individual. For
example, Askheim (2005, p. 248) argues that a “basic assumption behind direct payments is
that service users are rational, well informed and competent at making the best choices for
themselves”. This is a significant barrier for those who are “likely to be assumed to be unable
to assert choice and control in their lives” (Morris, 2010, p. 435). Assumptions about
individual capabilities emerged as a barrier to personal assistance. Wider societal
presumptions about independence, choice and control were often a hindrance for people who
required another person to manage and arrange personal assistance on their behalf. For
instance, in some countries, personal assistance applicants must be able to prove that they are
“willing and able” to manage and control their own assistance.
- A Deepened Understanding of my positionality
I reflected on my positionality throughout the research and analysis. This proved a useful
analytical exercise. My identity as a white, non-disabled, young Irish woman shapes my
understanding of “community” and “independence”. This is something I reflected on early on
in the research. What does independence mean to me and how can this differ from other
people’s perceptions? What assumptions, norms and experiences influence the meanings that
I attach to concepts? On a personal level, I associated independence with self-reliance. For
instance, before DREAM I travelled the world the world twice, I was financially selfdependent and lived alone in my favourite area of Dublin. I like spending time along and
enjoy my own company. Yet, paradoxically, I did these things safe in the knowledge that I
had an extremely supportive family. Furthermore, I went to University during an economic
growth in Ireland. This provided more possibilities study and earn a wage. Hence, several
environmental and social factors determined my ability to become “independent” as I
understood it. On the other hand, my professional experiences as a research assistant in
Ireland shaped my understandings of concepts from the perspective of people with
intellectual disabilities in an Irish context. Many opportunities that were available to me and
9 my peers were denied for people with intellectual disabilities. However, what I perceived as
barriers to independence of persons with intellectual disabilities in Ireland, were based on my
perceptions and needed to be approached with caution. By acknowledging my
preconceptions, I was mindful not to construct them as universally accepted norms. I am
acutely aware that my understanding differs from the next person’s. Therefore, I was careful
not to infer my ideas onto participants.
Another concern was my status as a foreigner and the effects this would have on the research
process. How would people perceive me and would I be accepted? As it turned out, my
position as an outsider was often advantageous and research participants were willing and
eager to provide information about their countries. However, my interactions with
stakeholders in Iceland, Norway and Sweden were complex. The major difference I
encountered between research in Ireland and research in Nordic countries was the contrast in
power relations between me, as a researcher and the disabled participants. In Iceland, Norway
and Sweden the disabled research participants were activists. They were used to fighting and
struggling against the powers that be. Some had been campaigning for personal assistance for
decades and some were engaged in political struggles at national and local government levels
against non-disabled professionals, politicians and policy makers. In some cases they were
sceptical of non-disabled “outsiders”. Hence, it turned out that my role as a non-disabled
researcher was more problematic than my role as a foreigner. Sometimes, participants asked
if I had a disabled family member, or why I was interested in disability studies. My answers
were sometimes met with uncomfortable silences, which I perceived as scepticism. Despite
this, I shared other, intersecting identities with participants and many research participants
would search for common ground. For instance, some identified with me as a young woman.
I was most at ease in Sweden, I found I had a lot in common with the participants and felt
welcomed. I met with many of the Swedish participants prior to my secondment and I had an
opportunity to explain my research prior to spending extensive time with them. In many
respects, I would attribute this to the fact that they were receiving information about the
CRPD. I had to produce a significant report and I had to give a presentation on the CRPD
during my secondment. The aim was to discuss the meaning of human rights for the
organisation and its members. Furthermore, I found that I shared a lot in common interests
with people I encountered in Sweden. For instance, I lived with and became friends with a
Swedish family for a brief while when I arrived in Stockholm. Although this was unrelated to
the research, I felt it accelerated my knowledge of Swedish culture, politics and current
10 affairs. This was a great asset, as I was genuinely interested in Swedish culture and could
relate to many people I encountered in a research setting.
As the research process progressed, I found that I could contribute by sharing information
about legislation and policies in other countries. For instance, participants from independent
living organisations in all three countries sought information about the CRPD and asked for
help with understanding how they could use it as a tool to defend their right to personal
assistance. In Sweden I was interviewed by the Independent Living Institute (ILI). I
expressed concern that some of the cutbacks and the loss of personal assistance I encountered
was in conflict with the Convention, which had been ratified by Sweden at the time. Some
months later, one of the issues I raised in that interview was discussed with the former
Council of Europe Commissioner for human Rights, Thomas Hammarberg2. This was a clear
example of the positive impact that the research could have for advancing knowledge of the
CRPD for independent living organisations.
- An Awareness of Diverse viewpoints
Participants comprised leaders of independent living organisations, parents involved in
independent living organisations, policy makers and administrators responsible for
overseeing policy and legislation. Research findings were fraught with tensions and conflicts
between and within stakeholder groups. However, this is where my previous experience of
joining the dots proved useful. There were several viewpoints and ideological persuasions
from within stakeholder groups. There was no single, universal way of defining or
understanding independent living, personal assistance and the key principles underpinning
Article 19 of the CRPD. For example, some disabled participants from independent living
organisations viewed personal assistance as a means to gain choice and control over their
lives in general while other non-disabled participants saw it as a way of achieving greater
gender equality for mothers of disabled children.
Fragmented viewpoints pose many challenges when reporting findings. There is a danger in
oversimplifying complex and divisive ideological underpinnings as universally accepted
norms. For instance, literature often refers to an independent living “movement”,
incorporating activism, user-co-operatives and independent living organisations promoting
2
For full Article (in Swedish) see http://assistanskoll.se/20131022-­‐Hammarberg-­‐ratificerat-­‐FN-­‐konventionen-­‐inte-­‐begrnsa.html 11 the ideology. However, the concept of one unified “movement” did not emerge from the data.
Instead, many diverse and fragmented views were found under the umbrella of an
independent living movement. For example, participants from the independent living
organisations differed in opinions about training and educating personal assistants. Others
disagreed about a flat rate payment versus a sliding scale payment for personal assistance.
Some favoured a relatively unregulated market, whereas others criticised private profits
derived from public funds. The role of parents working as personal assistants was another
tension as it strayed from some people’s ideals of independence and autonomy. Yet on the
other hand, the findings from Sweden strongly indicated that individuals who require
intensive supports”, had strong support networks facilitating the management of personal
assistance. I discovered that these and other conflicts within the independent living
communities were frequently ignored or overlooked in public debates because of fears that
making these tensions within the movement visible would make it vulnerable for political
attacks on the right to personal assistance.
- New Insights/Perceptions of power relations.
The research process in Iceland, Norway and Sweden led me to re-evaluate my perceptions of
power relations. I had always considered policy makers and administrators in decision
making positions to hold significant powers over disabled people. In many cases, they did.
However, it emerged they were bound by limitations. I was quite taken aback by their
openness and honesty regarding both their struggles and their solidarity with disabled people.
Despite knowing the nature of the research, some policy makers and administrators were
openly critical of the demands made by the disabled people’s movement. Furthermore, they
were open about their own limitations, especially regarding financial capacities. While many
concerns were expressed with regard to financial resources and unsustainable demands for
personal assistance, some raised ideological concerns regarding the marketisation of social
services. Unregulated markets worried policy makers and administrators participating in the
research. Furthermore, in Sweden “state authorities have focused on three types of problems:
the working conditions of the personal assistants, the competence of the assistants and the
aptitude of the private providers” (Andersen, Hugemark, & Bjelke, 2014, p. 39). The working
conditions of personal assistance also arose as a concern in this research. Some administrative
staff within municipalities desired greater insights into the wellbeing of personal assistants.
Policy makers feared exploitation of personal assistance if all work related issues were
confidential. Unfortunately, personal assistants were not interviewed in for the project. This
12 was a time and resource limitation. However, it is clear that this is an important area for
investigation.
These issues are good examples of how my understanding of personal assistance and
independent living was challenged during the process. I entered the research assuming it
would focus on social issues. Instead, I was faced with contentious viewpoints about the
regulation of markets and employment issues. It emerged that, in some cases, personal
assistance has generated markets in which for profit companies can make large profits from
personal assistance provision. In this context, concepts of choice, control and independence
are consequences of a consumer society and are buzzwords used within social care (Bauman,
1997; Christensen, 2012; Fraser & Gordon, 1994). This was quite the turning point in the
research and generated conflicts between my commitment to disability rights and academic
research. As an academic researcher, it is my duty to present an accurate account of themes
emerging from the data. As a disability rights researcher, it was tempting to view people in
decisions making positions as oppressors, particularly persons who appeared invested in
maintaining the status quo. However, I learned that if you want to bring about change it is
important to involve multiple stakeholders and understand diverse viewpoints. This was an
important aspect of the entire methodological approach and was also a challenge when
analysing the data. It was possible to capture the complexity, conflicting interests and tension
points among multiple stakeholders. I was presented with uncomfortable evidence of the
difficulties that have arisen with personal assistance. I feared that this could be a deterrent for
rights progression and a distraction from the positive aspects of personal assistance. There
were indications that this is already the case, not due to my findings but because of the reality
my findings reflected. For example, based on Swedish experiences where some perceived the
cost of personal assistance to be out of control, policy makers and administrators in Iceland
and Norway feared there would be a financially unsustainable demand for personal assistance
if rights legislation was extended.
- New insights into the Nordic context
Initially, I understood that Nordic countries were a promising example of progress towards
meeting obligations outlined in Article 19 of the CRPD. As an undergraduate political
science student in Ireland, I noticed a tendency to romanticise Nordic countries compared to
the Irish context. This is also the case in a lot of personal assistance literature. For instance,
(Anderberg, 2009) acknowledges that Sweden is often considered the golden standard of
13 personal assistance. Furthermore, there was a tendency among participants from Norway and
Iceland, to glorify the Swedish experience of personal assistance. I arrived in Iceland at a
pivotal moment in the disability movement. The Ministry of Welfare had just initiated a
personal assistance pilot project, which would inform the drafting of personal assistance
legislation. In initial interviews, it emerged that developments in Iceland were heavily
influenced by earlier developments in Sweden and Norway. Both countries provided some of
the most promising examples of progress towards independent and community living.
Extensive personal assistance had been implemented prior to ratification of the United
Nations Convention on the Rights of Persons with Disabilities.
I was quite surprised when the Nordic participants from independent living organisations,
policy makers and administrators voiced criticisms and concerns about personal assistance.
What is often represented as an ideal model of personal assistance, emerged as an contentious
and polarizing issue. This was not only the case between stakeholder groups, but also within
stakeholder groups. Findings reveal the most challenges and conflicts within Sweden, which
is the country with the longest history of personal assistance of all three countries. The
Swedish situation was particularly contentious when findings were analysed from a
longitudinal perspective. Swedish data reflected on “what has been”, over the last 20 years, in
order to make recommendations about “what could be” for countries with less progress
towards meeting obligations under Article 19. What has been in Sweden highlights many
challenges for the future sustainability of personal assistance policies. For instance, many
participants from independent living movements are fearful of losing personal assistance
following a decision to narrow eligibility criteria, whilst, on the other hand administrators
struggle with the consequences of weak regulations of for-profit assistance providers that
have been in place for the past 20 years. Rather than being an inspiration to policy makers,
there was evidence to suggest the Swedish experience was a deterrent for policy makers in
other countries. Sweden had become a scary example used by some to advocate a more
cautious approach to developing personal assistance policy and legislation. Policy makers in
other countries feared the ´cost-explosion´, as it is commonly referred to in Sweden.
4.
Tentative Outcomes/Recommendations.
Overall, my journey through a complex learning process should serve as an example that
research should be approached with great caution and with constant, critical reflections on
14 concepts and one´s own positionality. I conclude with reflections on some of the key
questions that emerged from the findings of the qualitative research:
Which stakeholder groups should be included in qualitative inquiry? At the beginning of the
research there was a temptation to only involve stakeholders from independent living
organisations. However, the participation of policy makers and administrators led to richer,
more in-depth findings. It is important to be transparent about whose views are represented in
recommendations, who was included and who was not.
How can diverse contexts be presented? Although Nordic countries are considered and are to
some extent similar, there were huge differences between each country with different issues
emerging in each one. This highlights the importance of distinguishing between diverse
contexts and avoiding generalising concepts and findings. There were variations even within
relatively small national contexts. For instance, in Iceland, with a population of 320,000,
personal assistance will be the responsibility of local governments. Although in the early
stages of implementation, findings suggest significant variations between local level policies.
This deviates from the CRPD focus on state parties. In-depth understandings of each country
revealed complex systems of governing, administrating and financing personal assistance
across several levels of government. Therefore, it is important to avoid generalisations or
assuming universal norms, even within relatively similar social, economic and cultural
contexts.
How can diverse fragmented viewpoints be represented in policy recommendations? Overly
simplified recommendations would not do justice to the diversity within the independent
living movement, yet alone take the viewpoints of policy makers and administrators into
consideration. There is a need to be clear about the differences in opinions, the tensions and
conflicts in order to avoid misrepresentation.
How can challenges, tensions and problems be presented without damaging disability rights
progress? When faced with a complicated issue it is important to understand the complexity
in order to be able to address it and bring about change. A simplified understanding would
run the risk of adding problems to an already contentious area. Hence, I have learned the
value of honesty and transparency regarding the challenges, barriers and tensions arising
from Nordic experiences of personal assistance. It would be dishonest and unwise to move
15 forward without reflecting and addressing these issues. In highlighting some pitfalls and
problematic areas, it is hoped that these will be taken into account when moving forward and
may be avoided in the future.
References
Anderberg, P. (2009). ANED country report on the implementation of policies
supporting independent living for disabled people. Sweden. ANED. Retrieved 05
April, 2012, from http://www.disability-europe.net/content/aned/media/SE-6Request07%20ANED%20Task%205%20Independent%20Living%20Report%20Sweden_to
%20publish_to%20EC.pdf
Andersen, J., Hugemark, A., & Bjelke, B. R. (2014). The market of personal
assistance in Scandinavia: hybridization and provider efforts to achieve legitimacy
and customers. Scandinavian Journal of Disability Research, 16(1), 34-47.
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