People with disabilities’ envisions of structural disability social work in the hoped-for future

Data

The data for this study is collected using Letters from the Future method (LFM) developed by Anneke Sools and colleagues (Sools, 2020; Sools and Mooren, 2012). LFM belongs to the family of narrative methods, and thus, it is interested in stories of people. However, the events of the letters are situated in an imagined future. Sools and Mooren (2012) use the term ‘narrative futuring’ to refer to telling a story of the future which can support becoming resilient especially during challenging times or changes in life, because future visions motivate, foster hope, and guide actions. In practice, LFM is a creative writing exercise the purpose of which is to collect stories of a desirable future, as if already realised. In the orientation, the participants can be, for example, encouraged to imagine travelling to the future in a time machine and write a letter from the future moment back to the present. The idea is to imagine possible and hoped-for futures, rather than to predict probable, neutral, or threatening futures. (Sools and Mooren, 2012; Sools, 2020).

This study is part of ‘Knowledge base and practices of structural disability social work in wellbeing service counties’ research project. In the project, by adapting LFM, we called for writings concerning hoped-for future visions of structural disability social work in the Finnish context. The language of the call was Finnish. The call out was open to all people with disabilities, and it was possible to participate either independently or assisted, that is, someone could help the participant with writing. Additionally, close ones of people with disabilities were allowed to respond to the call (e.g., a parent of a child with disabilities). Participants were required to be over 18 years of age. The call for writings was open from January to March 2024. The data collection was conducted using Webropol platform provided by the university. The call for writings was posted on the research project’s website and circulated widely through several disability organisations who were asked to share the call through their channels such as email lists and social media, but not in-person.

In the call for writings, we emphasised our interest in the participant’s perspectives on what they hoped structural disability social work might look like in the future, and what the pathway might be that would lead to the desired future. The participants were informed that structural disability social work means a larger perspective to disability than case work; instead, structural disability social work scrutinises the challenges that people with disabilities face in society, and it can be linked, for example, to the promotion of the rights of people with disabilities or developing services. Some supporting questions were set so that the participants could orientate themselves to the topic, covering topics related to social work and the overall society, for example: What would need to happen for the inclusion and rights of people with disabilities to be better realised? What kinds of issues should structural disability social work aim to influence?

After the orientation, participants were instructed to write letters that addressed a societal concern or an issue in welfare services that requires change. They were asked to envision travelling to the future and arriving at a time when this issue has been resolved. The letters should describe the changes that had occurred, how they came about, and the aspects that made these changes possible. The participants were asked to mark down how far into the future they had travelled, and to write as if they were living the moment right now. Attention was drawn to the future moment with prompts such as: What is your life like in the future moment? What is the society like? To whom do you want to send your letter? The participants were encouraged to use their imagination, and not to worry about spelling and write in their own style.

We received 17 writings which were rich and diverse in terms of content, and which focused well on the given topic. The average length of a letter was one page. The longest writing was two and a half pages, and the shortest was less than half a page. The topics addressed issues such as everyday life, societal issues, disability social work and services, disability organisations, and the position of people with disabilities in Finland. They addressed changes that would improve the everyday lives and agency of people with disabilities. The aspects of lived and hoped intertwined as the participants combined their lived experiences and hoped-for visions together.

According to voluntarily provided background information (age, gender, disability type, use of disability services, and involvement in disability policy), the call for writings reached people with disabilities in different kinds of life situations. Out of 17 letters, 16 were written by a single person, and one letter was written collectively by five people. The participants were 30–79 years old. Fourteen participants identified as women and two as men. In the case of the group letter, precise information about the participants’ genders is not available. The participants were living with different disabilities, including physical, intellectual, neurological and sensory disabilities, as well as rare diseases. Most of the participants used disability services, and some reported being involved in disability policy. Two people participated as a parent of a child with disabilities.

Analysis

Narrative inclusion was adopted as a methodological concept, which refers to integrating different social groups and people into narrative practices to acknowledge their stories. People make sense of themselves and their social environments through stories, but some stories dominate while others are marginalised. Dominant narratives are more easily told and heard, but they can also be constraining and oppressive (Baldwin, 2008). The story of disability as unwanted difference dominates disability narratives, limiting the possibilities to discuss disability on one’s own terms. However, sharing and receiving stories can challenge dominant narratives and promote social justice by providing space for diverse stories (Tarvainen, 2019). Thus, ‘narrative futuring’ (Sools and Mooren, 2012) may support the narrative inclusion of people with disabilities.

The analysis was conducted using reflexive thematic analysis (Braun and Clarke, 2022). Narrative inclusion as a methodological concept helped to dialogue with the data and informed further reading. It oriented us towards identifying recurring patterns and understanding the participants’ accounts concerning the conditions for inclusion. The analysis was inductive as our main interest was what kinds of themes participants brought up in the discussion. Both authors familiarised themselves with the data by reading the whole material several times. Then, as the material covers participants’ visions of desired structural disability social work and the pathways to the desired future, the first author started to search for direct expressions of the hopes the participants expressed. While reading, two questions were kept in mind: What is the hoped-for future like? How did it come into being? The first author collected the accounts where hopes were discussed and identified the most commonly shared topics, which were about knowledge, e.g., ‘Decision-makers’ know-how will increase’ (1), collaboration, e.g., ‘Disability services collaborate with disability organisations’ (11), and inclusion, e.g., ‘There is a place for all people in society’ (8). These topics were at the core of the hope descriptions. The first author refined the topics into more detailed initial themes. Finally, we generated three main themes, forming an overall picture of a hoped-for future and structural disability social work based on the letters.

The form of the writings was diverse, and not all of them were in the form of a letter (e.g., whether it included a date, salutation, or a recipient). In the analysis, we did not pay attention to the extent to which the writing followed the form of a letter.

We translated the accounts from Finnish into English. The number references in the text are based on the participant numbers (1–17) in the web-based platform.

Ethics

Ethical approval for the research project was obtained from the Committee on Research Ethics at the University of Eastern Finland in November 2023. The researchers designed the data collection form carefully. Information about the research and data management practices was given to the participants on the secure web-based platform used for data collection. The participants were asked to give their informed consent via the platform before accessing the main page where they could start their participation in the research.

Knowledge work about disability

The first aspect was the participants’ hope that in the future, there would be more knowledge about living with disabilities. The theme of knowledge was discussed from two perspectives. Firstly, social workers must strengthen their own knowledge basis regarding disability so that people with disabilities get needed support and services fluently, which improves their everyday lives. Secondly, social workers should produce more knowledge about disability and disability-related inequalities, for example, to be used in wider-scale decision-making, which creates opportunities to build a fair society. The visions relate to everyday practices of disability social work, but they also address a wider perspective of disability in society, which is at the core of structural disability social work.

The participants highlighted the importance of knowledge work in social work, emphasising the need for social workers to understand clients’ needs and social contexts, and suggest ways to eliminate oppressive structures. In the hoped-for future, social workers have a stronger knowledge basis of the everyday lives of their clients and know how ‘different functional limitations of people impair everyday lives, so when making decisions, they understand our limitations realistically’ (1). According to the participants, referring to the situation in 2024, social workers did not always fully recognise the lived conditions of people with disabilities, which led ‘in the case of many to incorrect, insufficient, or negative decisions on help that the client would really need’ (1). In the envisioned future, the diverse experiences of people with disabilities are better heard and integrated into social work knowledge practices.

The participants mentioned the power differentials between clients and professionals regarding the type of knowledge produced on disability. According to them, in the hoped-for future, social workers focus on social and environmental aspects of people with disabilities, rather than impairments as a personal health issue. Comparing this to the time of writing, some told that sometimes social workers had ‘knowledge about the person’s situation only to the extent of one insufficient doctor’s statement, and they don’t always convey anything about our daily lives’ (1). The knowledge provided by doctor’s statements was described as narrow-focused and professionally oriented, failing to capture the overall situation and the client’s perspective. The knowledge of people with disabilities and professionals did not quite align, which may create a sense of exclusion in their own matters. In the hoped-for future, this has changed by valuing the lived knowledge of people with disabilities and strengthening their narrative inclusion.

In the future visions, social workers have more knowledge about the diversity of disabilities. Especially, many brought up increased knowledge of invisible impairments. Some envisioned this taking longer, as a participant visioned in her account 20 years from now: ’Now it is possible to approach brain diseases better’ (9). Another participant continued from only 2 years from now: ‘Finally decision-makers realised that invisible neurological disorders are also impairments, and they justify […] services for people with disabilities’ (10). According to the participants, the changes made it possible to regain their independency through services and enjoy a meaningful life. Living with invisible impairments was described as an unheard story that became recognised in the hoped-for future. Another account resonated with the earlier ones in a vision set a year from now, but regarding rare diseases:

Nowadays, in social work, it is understood how many ways the disease affects my life, and in general, knowledge increases about other rare diseases. In the past, I did not receive services, but it was always like ‘you are not severely disabled, and you are not entitled to disability services’. Today, professionals have more knowledge that a person with a rare disease may have a need for disability services, even if the disease is not very visible to the outside as in my case. (16)

According to the participants, increased knowledge of different kinds of disabilities in social work had made the process of obtaining disability services smoother: ‘You don’t have to argue over the services every time and prove the limitations of your ability to function to the point of being fed up’ (3). In addition to the social workers’ more multifaceted knowledge, this can be interpreted as a hope that the conceptualisation of what disability is will change in time. Furthermore, the new Finnish Disability Act of 2025 redefined the term ‘person with disabilities’, which was addressed in some visions: ‘I am writing this letter in 2025 when the new Disability Act has entered into force. At the last moment before its entry into force, a section on rare diseases was added to the Disability Act’ (16). The law reform gave hope that people with invisible impairments and rare diseases will be better recognised in disability social work.

While previous aspects dealt more with knowledge of disability in case work, the participants also discussed broader knowledge production about disability. From a participant’s perspective, in the hoped-for future, social workers provide knowledge to wide audiences with the goal of removing attitudinal barriers: ‘attitude education for people in the service field and for everyone, especially for the youth’, and social workers could ‘go to schools and companies to talk about [disabling conditions] and how to approach them’ (4). Another participant hopes for a more intersectional perspective and that structural disability social work would participate in removing both attitudinal and material barriers through knowledge work:

Raising awareness of equality of people with disabilities. Making the global phenomena of vulnerability, diversity, ability, and limitations of the human body and mind an understandable, more accessible, not so frightening, and easily repudiated topic. Making visible the barriers to physical, mental, social, institutional, cultural, economic and administrative participation. Planning and implementing the removal of barriers. (7)

The participants expressed that structural social work is, at the time of writing, relatively unfamiliar and fragmented for both disability social workers and clients. The hectic environment of disability social work was offered as a reason for this: ‘Social workers don’t know how to apply structural social work in disability services, where the resources are scarce, and they are used in an assembly line for assessing the service needs […] of an excessively large number of clients’ (7). Furthermore, ‘structural disability social work is not familiar in everyday language of people with disabilities’ (7). In the hoped-for future, the participants visioned structural orientation as a potential approach to strengthen rights-based disability social work. According to them, social workers need to familiarise themselves with structural social work and communicate it to people with disabilities, so that they can also participate in knowledge work and structural disability social work.

Collaboration between disability social work and people with disabilities and their organisations

The second aspect was collaboration. According to the participants, social workers and people with disabilities and their organisations should work together to achieve shared disability policy goals derived from the CRPD. For structural social work, it is characteristic to make allies with citizens and organisations, but social work and disability organisations have not yet much collaborated (Eiler and D’Angelo, 2020). However, the participants mentioned that structural social work has many connections to the social advocacy practiced by people with disabilities such as the work that ‘local disability councils have implemented over the decades’ (7). In the future visions, ‘disability services collaborate with disability organisations. Thus, new kinds of knowledge will be available’ (11). Collaboration was seen as a means to share understanding of, for example, structural barriers faced by people with disabilities.

In the hoped-for future, collaboration between social work and disability organisations offers an opportunity to improve the position of people with disabilities together. Through an equitable sharing of thoughts, social workers can ‘better understand experiences of people with disabilities regarding the realisation of rights and problems with services’ (11). ‘Collaboration and sharing viewpoints’ (1) are necessary so that social workers and disability organisations could combine their professional and experience-based know-how and make common cause to, for example, ‘influence on accessibility of transport, moving, living environments and services’ (7). This strengthens the narrative inclusion of people with disabilities as their stories become heard and matters can be progressed, also based on lived experiences.

The participants argued that social work should collaborate more with experts by experience. Experts by experience use their personal experience with a specific issue, such as disability services, to help others in a similar situation and provide insights to professionals. The participants suggest experts by experience be hired for disability social work: ‘People with functional limitations should be hired because in their work, they can combine professional and experience-based expertise, they know different kind of needs, and are able to seek suitable solutions’ (7). In another future vision, experts by experience influence service system and municipalities on a larger scale, and disability social workers are willing to receive ideas from them. In a vision 20 years from now, there might still be some challenges with services, but the opportunities to influence them are better:

There are still some problems with disability services, but we can influence the issues, for example, via a local council on disability. Accessible routes in the city, ensuring moving even when there is no public transportation. […] Through expert by experience activities, we promote the rights of people with […] disabilities, increase participation in society, and share knowledge, for example, by giving experience speeches in schools, in different fields of wellbeing service counties, and by influencing the decision-makers of municipalities. (15)

In the future visions, people with disabilities influence decision-making via local disability councils and other channels of communication. Especially, participants with learning disabilities hoped for more accessible ways to get heard. In a writing addressed to the local chief of disability services, the participant envisioned new ways to participate: ‘If the chief of disability services and social workers would really want to take us local people with learning disabilities into account, a good way would be a clear smiley face survey, where questions would be asked about the realisation of rights, dignity, [and] the need for services’ (17). In structural social work and knowledge production, narrative inclusion should also be strengthened for those needing support with communicating.

In addition to structural disability social work and disability organisations being envisioned as promoters of the rights of people with disabilities, they were also both criticised at the time of writing, with social work for not having recognised the overall conditions of clients, and disability organisations for ‘diagnosis-centeredness’ (7). This referred to disability organisations that are often built around a specific impairment, which reflects broader societal conditions since impairment-based organisations have been the main way of organising disability activism. According to the participants, different kinds of disability organisations should work together, because currently, disability organisations have conflicting disability policy goals:

Disability organisations should turn their way of thinking from the diagnosis-centeredness that maintains a medical model of disability. […] [Disability] organisations should identify common societal challenges resulting from people’s functional limitations, and commit to promoting them together, such as promoting education and employment as well as reducing loneliness and bullying. (7)

In the hoped-for future, structural disability social work takes more of a role on disability policy when influencing matters concerning people with disabilities in collaboration with disability organisations. However, social work may find it difficult to take a stance on disability policy issues because there is, according to the participants, no consensus on disability policy issues within disability organisations. Collaboration between social work and disability organisations reflects a hope to act as allies in the future, which can also strengthen the narrative inclusion of people with disabilities.

Developing a more inclusive society

The third aspect was the participants’ hope for a more inclusive society where people with disabilities would be equally valued citizens. The participants referred to the situation in 2024 where people with disabilities are treated as inferior to non-disabled. People with disabilities have problems with, for example, acting in inaccessible environments, entry to working life, and freedom of participating in everyday life due to inadequate services, and society makes them feel like a cost to the public economy. In the hoped-for future visions, ’people with disabilities should not have to fight so much for their rights’ (8). Also, people with disabilities are welcomed to participate in all the arenas of society, and they are not seen solely through disability, but rather as full citizens.

In the hoped-for future, people with disabilities are visible in different societal roles. From the narrative perspective, the inclusion-related stories of the participants resist the narrative of people with disabilities as passive or incomplete citizens who reach their rights only to a limited degree. Access to all arenas of society would break down the narrow perceptions of what people with disabilities are capable of, and hence, change attitudes as the following account illustrates:

People with disabilities have gradually been admitted into work, culture, politics, and been visible in society. When people with disabilities reach important social memberships, many good things can come true. As for public finances, it is understood that such a large part of citizens as people with disabilities can no longer be left out society. […] Accessibility and services are no longer a mere expense, but an investment so that everyone can participate in society. (3)

As the previous participant mentioned, services support inclusion. According to the participants, in the hoped-for future, ‘appreciation of people with disabilities can be seen in disability services. Participation of people with disabilities is something they want to invest in, rather than always save money from it’ (2). Another participant agreed: ‘disability social work has come to the level of people […]. They can well highlight to the gatekeepers of wellbeing service county’s money that even a smaller amount of support helps when it is received immediately when needed’ (12). Steering the conversation towards the tight economic situation, the participants envisage that people with disabilities and social workers stand against the talk of scarce resources in the service system together. The social worker adopts the role of a social advocate by taking the client’s side. The visions also reflect more appreciative attitudes towards people with disabilities, as well as their narrative inclusion in the service system.

Inclusion in working life was an important topic for the participants. Working life at the time of writing was described as hard to reach, and disability as unwanted in workplaces. According to a participant from her account 10 years from now, ‘my disease and the needs related to that are no longer a problem in my workplace. They want to keep me on the job because my professional skills are seen as important’ (2). The participant envisioned her skills being recognised fully, and possible adjustments being seen as worthwhile. In another account by a group, they visioned that all of them got paid work with needed adjustments: ‘the working hours have been considered suitable for everyone’s situations […]. Employers are willing to hire people for specific work tasks, and employees get the support they need from the workplace as well as a work coach’ (15). According to the participants, in the hoped-for future, workplaces are more flexible, and employers see new ways of working and adapting tasks to suit the worker. The participants pointed out the need to shake up conventional practices of employment, and people with disabilities could participate if there were more suitable options.

In the future visions, matters important for people with disabilities are heard in the society. In a vision 20 years from now, disability policy issues are on the agenda and seen as relevant to public discussion: ‘There are often discussions in the media about the rights and inclusion of people with disabilities. We must remember that we are all equal and it is important to have our voices and opinions heard.’ (15) This appeared as a criticism towards the situation when disability was seldom discussed in the media and even more rarely did people with disabilities themselves get the opportunity to present the issue. Hearing their stories in the media strengthens the narrative inclusion of people with disabilities by enabling their perspectives to reach the general public.

The large-scale hope of the participants was that in the future, people would be more accepting and broadminded towards all citizens: ‘For the future, I hope for tolerance between people with different disabilities and all of us’ (5). They hoped that no one would be left out:

There is a place for all people in society, in social networks. For people with disabilities, people with long-term illnesses, the elderly, the unemployed and everyone who lives in this country. Every person’s life has a meaning, the importance of which cannot be measured by millimetres. (8)

From the narrative perspective, the account reflects the story of disability as unwanted difference, and it also highlights some other oppressed groups. In the hoped-for future, the stories are more inclusive. The metaphor about measuring the importance of life captures the idea of the worth of every person. For structural disability social work, the vision regarding a more inclusive society is a challenge to work towards a better realisation of human rights.