The Linguistic and Cultural Rights of Persons with Disabilities in the Context of Finnish Disability Services

Survey study

The online survey was in Finnish, Swedish and English. It was open from 19 June to 20 August 2023. Information on the survey was disseminated through national and local VANE boards and disability organisations. The researchers also shared information on the survey via their personal social media channels. The survey was divided into two parts: personal experiences and general views on persons with disabilities. The respondents could choose to answer only the first part if they so wished, but the majority (81%) also answered the second part on general views. The first part had 22 questions, of which 12 were multiple choice and ten were open-ended. The second part of the survey had 27 questions, of which 13 were multiple choice and 14 open-ended. This paper largely draws from open-ended answers. A total of 541 people responded to the survey. Seventy per cent of the respondents were persons with disabilities who answered the survey themselves, and 30% were, for example, parents of children with disabilities or personal assistants, who helped the persons with disabilities fill in the survey. The majority of the respondents were working-age people and were between 25 and 64 years old. Sixty-two per cent were women, 35% were men, 1% selected the ‘other gender’ option, and 2% did not respond to the question on gender. Forty-seven per cent of the respondents were from Southern Finland, 26% from Western Finland, 10% from Eastern Finland, 9% from Northern Finland and 8% were from Central Finland. Ninety-two per cent responded in Finnish, 6% responded in Swedish and less than 1% responded in English. Fifty-six per cent were on a pension, 23% were working, 17% were at school, 6% were unemployed, and 10% chose ‘other’ as their status and described their different situations.

As regards types of disabilities (please see Table 1), 42% were with physical disabilities, 37% with cognitive disabilities, 28% with sensory disabilities, 15% with social disabilities (such as Autism spectrum), 10% with psychological disabilities, 2% did not want to answer and 9% chose ‘other’ and described their different situations. The total of 772 responses shows that some respondents had multiple disabilities. Not all the survey results are presented in this paper but in the study report (Katsui et al. 2023). In this paper, open-ended answers of 198 persons with intellectual disabilities, those of 4 respondents in English, and those of 151 persons with sensory disabilities are primarily focused.

Group interviews

Six group interviews were conducted with people who do not often participate in online surveys. This paper addresses three of the six groups interviewed: 1) deaf people and sign language users (N = 5), 2) persons with intellectual and developmental disabilities (N = 20) and 3) immigrants with disabilities (N = 5). Due to the small number of people and risk of identification, as well as due to the non-representative nature of the interviewees, further demographical information is not disclosed in this paper. The group interviews were conducted between June and September 2023. The group interview with deaf people and sign language users took place online to enable those living outside the Metropolitan area to be included, and the latter two group interviews took place in the Metropolitan area and outside it, respectively. For the group of persons with intellectual disabilities, their supervisors and support persons were also present, when they so wished. About half of them brought their support persons with them. The languages used were 1) Finnish sign language, 2) plain Finnish and 3) Arabic. They were recruited through the researchers’ existing networks. The interviews lasted between two hours and almost three hours. The average time was slightly over two hours. The interview questions were based on the thematic areas of the UN CRPD, but deaf people and immigrants with disabilities were also asked about the accessibility of services in their first languages. For instance, we asked whether or not the interviewees had encountered any language barriers in the context of disability services. This paper is based on this part of the group interviews. The interview transcripts made in Finnish were translated into English by the author for this paper.

Analysis methods

Thematic analysis (Lochmiller 2021) was applied to the survey and group interview data by repeatedly reading the texts in light of the selected theoretical framework, which included linguistic and cultural rights, assumed normality, and vulnerability. This constituted an abductive approach (van Hulst and Visser 2024) drawing insights from both theory and empirical data. Among the many identified themes, collective patterns and themes specific to the three main groups were organised and are presented below.

Ethical issues

We adhered to Finnish National Board on Research Integrity, TENK’s ethical guidelines (TENK 2023), that all researchers in Finland have to abide by. According to the guidelines, no ethical statement was required for this study in Finland due to the following measures. Before the survey or interviews, the study information sheet, informed consent form and privacy notice for scientific research based on the General Data Protection Regulation of the European Union were delivered online and/or orally presented to the participants. We informed the survey participants and interviewees that participation was voluntary and that they were free to withdraw from the study at any time, and we explained our privacy practice of pseudonymisation in the transcription and publications. We obtained all the permission of all the interviewees to digitally record the group interviews. For this paper, all the interviews were transcribed and thematically analysed on the basis of the key theories of linguistic and cultural rights, assumed normality and vulnerability.

In order to protect the privacy of the study participants, after each citation below, only information on the research methods is described, and information on the interviewees is only addressed on a group level. I translated the data into English for this paper. I also categorise deaf people as a group of persons with disabilities in this paper, as the original study used this categorisation and called for study participants. However, I am fully aware of the linguistic and cultural minority identity of deaf people (Corker 2002), which is relevant for this paper.

Lack of relevant and timely information on disability services in accessible languages and through accessible means of communication

[Disability] Services are difficult to understand (Online survey).

Disability services are increasingly more difficult to obtain, and even when applications are successful and the services are granted, practical challenges still make actually receiving them difficult (Lindh et al. 2023; Katsui et al. 2023; Katsui 2024). A lack of relevant, timely information in accessible languages and through accessible means of communication seemed to be a major disadvantage for many of the interviewees in all the three groups.

In Finland, if you’re a blind Finn, you have the Finnish language, and you can ask for help. Then you have a Finnish mother and father, who can find out about your rights and then apply for services and turn to the right people. But because I’m an immigrant and don’t speak Finnish, I certainly don’t know about my rights or the services (Group interview of immigrants with disabilities).

I had a neighbour who was deaf, who moved into an old people’s home [in City A]. I saw that in her daily life, she only had a signing carer twice a week. (…) Other times she had to lipread. These carers talked to her. Her reading and writing skills were weak and she couldn’t understand them when they wrote things for her. She should get information in sign language. (…) When it comes to old deaf people, the situation is terrible (Group interview of deaf people).

Due to the lack of information, some immigrants with disabilities do not receive the disability services that they are entitled to:

When I moved from [City A] to [City B], many problems started. My assistive device was taken away, my electronic wheelchair, and so I had to stay at home for one and a half years because I had no assistive device and could not move. I was going crazy (Group interview of immigrants with disabilities).

There are services and rights that I do not know because I just moved to Finland (Group interview of immigrants with disabilities).

The interviewed persons with intellectual and developmental disabilities had tried to go through the application procedure with a support person such as a supervisor or their parents. Their applications were often rejected, or they even encountered malpractice, and this forced them to return to live with their parents. The limited or inaccessible languages and means of communication of this process restricted or violated the self-determination rights of the following persons with intellectual and developmental disabilities:

I always have to call. Yes, I can call. I call my supervisor and agree to take care of it like tomorrow. Then, the supervisor calls the next day (…) because I confuse clock times, I know what is 14.00 and 16.00, but if the time is even a little bit over that, then I get totally confused (Group interview of persons with intellectual and developmental disabilities).

I applied for [personal assistant services] but was rejected. And now I’ve got to do a new application. (…) So I’m at home as I don’t have enough personal assistant service time (Group interview of persons with intellectual and developmental disabilities).

My son is at home and I’m his carer. When he turned 18, he tried supported living. But the supervision and care were not enough. My son’s means of communication were not considered at all. (…) [My son lost a lot of weight.] The quality of care was so bad. He expressed, using pictures, that he wants to live at home with his mum (Online survey).

I want to live in my childhood home. In the housing unit, I was put to bed already at 19:30. I didn’t get any more food, and was often left in my room alone, though I need supervision for whatever I do (Online survey).

The studied immigrants with disabilities expressed negative experiences of dealing with social workers, doctors and legal guardians, on whom they depended. Moreover, due to their poor Finnish language proficiency, the lack of information, and the difficult residence permit process they were unable to complain about their situations:

The [social] workers don’t inform us about existing services. I have to suffer and ask for information and help from friends, and then sometimes I accidentally hear about some services, and so then I apply for them. The [social] workers do not automatically inform us of what kinds of services my child [with intellectual and developmental disabilities] can receive. And the language is the big problem (Group interview of immigrants with disabilities).

The problem in Finland is that nobody helps me. I received a legal guardian who took care of my money issues. (…) [the guardian took very bad care of my money.] But nothing was done to this person. He was not punished for what he did (Group interview of immigrants with disabilities).

I could do nothing because I didn’t have a residence permit and didn’t know my rights or the Finnish language. The doctor made a medical error – prescribed the wrong medication that caused [the diagnosis](…)(Group interview of immigrants with disabilities).

Even when an interviewed blind immigrant tried to learn the Finnish language, they were unable to because no pedagogical materials were accessible to blind learners:

In the Finnish language class, I tried to study it, but due to my blindness, I couldn’t and I wasn’t helped. I couldn’t do anything in principle (Group interview of immigrants with disabilities).

That is, due to lack of accessible languages and means of communication, obtaining disability services is even more complicated for the interviewed persons in the three groups, especially when their applications are rejected and they have negative experiences. In general, many of the persons with disabilities had recently experienced difficulties and/or poor quality and quantity of the services, even if they spoke Finnish or Swedish (Lindh et al. 2023; Katsui et al. 2023; Katsui 2024). It is thus even more difficult for the persons with disabilities from different linguistic and cultural backgrounds to obtain sufficient information on disability services. The lack of accessible language and means of communication tend to make these people vulnerable and they have the great risk to be left without sufficient support.

Limited understanding of linguistic and cultural rights of the disability service stakeholders

According to the interviewed deaf people, only a few services are generally available in sign language in Finland today. All the interviewed deaf people wished for more services in their first language of sign language in general in society. This reality reveals the limited general understanding of deaf people’s linguistic and cultural rights in society. Instead of services in sign language, they receive interpreted sign language services through disability services. The Social Insurance Institution of Finland (Finnish acronym: KELA) is in charge of centrally administrating the sign language services of disability services. The interviewed deaf people heavily criticised KELA’s attitude and practices, except for the period when they were students. A pool of sign language interpreters are reserved to play the role of sign language interpreter for students. However, once a person graduates from an educational institution, this system dissolves.

Interpretation during studies goes smoothly and exceptionally well, as there is a clear system developed for it. But interpretation services customers drop out when they move to working life, and the drop is really huge (Group interview of deaf people).

I’m already fed up talking about this (…) interpreters come by chance (Group interview of deaf people).

It was a widely shared opinion that good quality interpretation services were not ensured for people at work, as the new interpreters assigned by KELA are not necessarily competent in the specific terminologies needed for interpreting for a deaf person.

For her (the deaf person), the interpreters changed 30 times or more within one month when she was at work. This is a good example of the work-related (sign language) interpretation (situation at the moment) (Group interview of deaf people).

The number one issue is quality. We need interpreters who have a certain quality level for our meetings. I’ve fought with KELA so many times over this issue, as KELA thinks that any interpreter is sufficient for us in any meeting. I’ve told them that this does not work. I get angry about what deaf people have to put up with, the (bad) quality of interpreters, even when they say ‘yes, interpreters are booked for you’. I’m taking a risk having such interpreters in a meeting – if they don’t understand me, I fully embarrass myself in the meeting. So then I have to skip the meeting altogether, if I don’t know the quality of the interpretation (Group interview of deaf people).

Although the availability of interpreters is sometimes a problem, it is not as great a problem as the quality of interpretation. Many interviewees reported difficulties securing interpreters for spontaneous meetings at short notice. Therefore, they book interpreters as soon as they know their needs, far in advance, to secure interpreters. This was an acknowledged burden for the interviewed deaf people. Another acknowledged burden was the fact that they themselves are responsible for taking care of interpretation services, which forces them to always remain active and alert. When KELA fails to provide interpreters, or good quality interpreters, for their meetings, they feel their linguistic and cultural rights are violated. The limited understanding of the linguistic rights and deaf culture was observed in both the past and the present (Katsui et al. 2021; Katsui et al. 2024).

When we go outside the (deaf) community (like KELA’s interpretation services), our (linguistic and cultural) rights are not recognised in the same way (Group interview of deaf people).

School education and services could well be in sign language, not through interpretation, but in sign language. Then we could see that the deaf culture is understood and sign language known in such services (Group interview of deaf people).

Our kid doesn’t have a cochlear implant. And the attitude then is, ‘Well, if there’s no cochlear implant, you don’t need any services.’ We did discuss the cochlear implant many times and they introduced the idea of speech therapy, but sign language wasn’t discussed in the same way (as an alternative) (Group interview of deaf people).

In general, maybe the problem is that municipalities and cities and officials neglect their duties. They break laws, but nothing follows. There are no sanctions, they don’t get any fines, no punishment (Group interview of deaf people).

The persons with intellectual and developmental disabilities and immigrants with disabilities also shared the experience of disability services not understanding their culture. In the online survey, some participants reported that the lack of easy-read language, which is one manifestation of their culture, is a barrier to living independently. A similar complaint was also made about emergency services when personal support is limited in a group home:

I don’t believe that our son (with intellectual disabilities) could call the emergency number 112 and explain what he needs if he needs help (Online survey).

In the group interviews, some immigrants with disabilities were deeply concerned about the lack of cultural understanding and have had the Finnish culture imposed on them in the context of disability services:

When an unknown man comes to your home (as a personal assistant), it’s not accepted in our culture. We have difficulties understanding that a man would come to our house. That’s why I asked for a woman, who could help, but we did not get a woman. (…) Then the disability social service worker said I had to accept this service and there was no alternative. (…) We have neighbours from the same culture, and they’ll start talking (negatively) about us. My husband won’t allow this unknown man to come to our house (Group interview of immigrants with disabilities).

According to the study participants, their negative experiences of the disability services are intertwined with the centralisation of and the introduction of market-oriented principles into the disability services. In conjunction with the ongoing austerity measures of the current government, individualised disability services are increasingly under pressure (see Katsui 2024).

The system is continuously being developed digitally and centrally. At the same time, the mobility of the customers with disabilities becomes significantly more difficult. Self-determination is utopia. (…) The more the system is commercialised and digitised and built centrally, the more the customer’s service will deteriorate and the price of the service increase (Online survey).

These findings lead us to preliminarily conclude that the assumed normality of proficient Finnish language and culture in Finnish society is embedded in the implementation of disability services, particularly in that of sign language interpretation services but also in other disability services for persons with intellectual and developmental disabilities and immigrants with disabilities. As a result of this, some decide or are even forced not to use disability services at all which makes them even more vulnerable and marginalised.

The Psycho-emotional impact of infringement of linguistic and cultural rights

As discussed above, the assumed normality of dealing with disability services in written and oral Finnish, and no consideration of the languages, means of communication or cultures of the studied groups of persons with disabilities has led to negative experiences. Next, I address the psycho-emotional impact of disability (Reeve 2004) that stems from the limited linguistic and cultural rights of the studied groups of persons with disabilities.

The interviewed immigrants with disabilities were all grateful for the fact that they now live in Finland and receive much better services than in their home countries which had no such disability services. Yet, they also felt frustrated being unable to take care of their daily matters due to their lack of language proficiency. Needing to ask others for help made some participants of the studied groups feel helpless:

There’s no Finish language, no language skill, and so taking care of things is very difficult. I can’t take care of my own affairs (Group interview of immigrants with disabilities).

It feels belittling, as [another participant] said, when you have to ask your mother for help and can’t take care of your own affairs. OK, sometimes we can ask for help from others and that doesn’t matter, but somehow it feels that we shouldn’t be dependent on others for everything (Group interview of deaf people).

The group interviews of persons with intellectual and developmental disabilities revealed that they are often overlooked and do not receive the support that they need. Even a reduction of service in terms of quantity is normalised.

P: Some time ago before Covid, we had an assistant between 7 and 9 [p.m.], and now for a long time we’ve only had an assistant between 7 and 8, and no assistant at 9.

R: No [staff] at night?

P: No.

(P: Participant with intellectual and developmental disability, R: Researcher)

One of the group interviewees with intellectual and developmental disabilities described how they had enjoyed a single outing to a supermarket. Going to a supermarket is often part of everyday life for people in Finland, but this participant had only experienced it once. This highlights both the normalisation of limited individualised support and the compulsory gratitude for any support received.

We also have good things. For example, I went to a supermarket once with a carer and it was kind (Group interview of persons with intellectual and developmental disabilities).

They have also internalised the idea that they should not bother carers.

I noticed that some resident [of the same group home] needs help with smoking, and it takes [the human resource] away from others (Group interview of persons with intellectual and developmental disabilities).

Consequently, the research participants with intellectual and developmental disabilities and immigrants with disabilities are reinforced to become vulnerable in the context of disability services, as they cannot ask for more of the services to which they are entitled. The studied deaf people also acknowledged the fact that many deaf people do not understand their own rights and do not ask for what they need.

We have remained silent because we did not believe we could bring these onto the agenda, or bullying at work, or other injustices (Group interview of deaf people).

Arguing with KELA is a particular challenge for the studied deaf people, because it is a huge organisation with many lawyers.

It’s always this small person against something like KELA’s interpretation services. Kela has army-like lawyers who manage to extinguish the ‘fire’ very effectively (Group interview of deaf people).

Each one of us should know the laws and our rights, and claim them (…) I feel very small against such a big organisation (Group interview of deaf people).

I don’t believe that I, with my face, can publicly take this issue to a newspaper or to court (…) Fighting is lonely (…) All the comments and complaints I send just disappear into space. I feel very unsafe, as others say (Group interview of deaf people).

Fighting the disability services is difficult but the responsibility falls on the persons with disabilities. It becomes a huge burden and has a negative psycho-emotional impact on them.

But I’m always the one who is responsible for organising and arranging these things. Society pushes the responsibility onto deaf people, saying, ‘You take care of the interpretation service’. And this creates a lot of stress (Group interview of deaf people).

At the end of the day, you have to take care of everything yourself, and then if it fails and I get no interpreters, it’s my fault and I suffer for it. Such barriers arise, and then I start to feel very stupid, though it’s caused by the problem of bureaucracy in the system (Group interview of deaf people).

When [some disability service] is terminated, we have more mental health problems etc. Persons with intellectual and developmental disabilities, we are overburdened (Group interview of persons with intellectual and developmental disabilities).

I have a very difficult life. When I’m with people, I laugh and joke, but then at home I cry (Group interview of immigrants with disabilities).

These three groups of persons with disabilities were too often vulnerable (Heikkilä et al. 2020) in the context of disability services, which was manifested in the form of psycho-emotional impact of disability (Reeve 2004). The findings show that many experience psycho-emotional burdens to deal with disability services and their consequences including negative decisions. The mechanism of disability services often effectively make the research participants feel that problems are theirs. Their vulnerability is not inherent to them but constructed and reconstructed in the interaction with surrounding systems such as the studied disability service system.