“I’m proud to be intellectually disabled, but I’d still like to learn how to read”

Professori Simo Vehmas 1.8.2013

Simo Vehmas, Professor of Disability Studies, University of Helsinki, President of NNDR, simo.vehmas@helsinki.fi, http://blogs.helsinki.fi/spvehmas/

I read recently a fascinating paper about the self-advocacy of young people with intellectual disability in Sweden by Magnus Tideman and Ove Svensson (Tideman & Svensson 2015). The findings of their study touch upon various contentious issues in disability studies such as the meaning of autonomy and independence, identity politics, and whether justice for disabled people is mainly a matter of distribution of goods or recognition of their equal worth.

Respect for self-determination and social justice seem to go hand in hand despite the fact that some impairments do pose a challenge for reconciling these two. What Tideman’s and Svensson’s paper highlights so well is the difficulty of “finding the right balance between giving an individual responsibility and independence and at the same time providing him or her with an adequate amount of help and support” (Tideman & Svensson 2015, 6). Providing disabled people with equal opportunities for autonomy and independence has always been important to disability movement despite the contested and ambiguous nature of the concept “autonomy”. The importance of disability identity is also contentious: some think that identification on the basis of impairment and discrimination to a disabled collective results in labeling and further discrimination rather than to empowerment and justice (e.g. Shakespeare 2006, ch. 5).

Whatever one thinks about the use of identity politics, in terms of justice the following seems clear: providing appropriate material and institutional responses to disabled people requires recognition not only of the discrimination they experience, but also of the effects impairments have on their lives. Without a knowledge of the effects of, for example, mobility, hearing or visual impairments we wouldn’t be able to provide accessible environment to people with such impairments. The same applies to various cognitive impairments and learning disabilities as well. Imagine that a young man assaults his teacher. When evaluating his moral and legal accountability, possible impairments (e.g. intellectual disability, psychiatric condition) would be relevant, and possibly absolving factors. Similarly, when evaluating student essays, one needs to take into account possible learning disabilities in order to provide a fair evaluation. In other words, fairness and equal possibility for social participation requires the recognition of impairments, and their effects on people’s behaviour, actions and performances (Tideman and Svensson expressed similar views in relation to the provision of financial guidance to persons with intellectual disability).

Social justice includes a material and symbolic dimension, or as Nancy Fraser and many others have argued: justice requires fair distribution of resources and the recognition, accommodation and respect of human difference. Self-advocacy groups for people with intellectual disability highlight both dimensions: they demand equal opportunities to, for example, education and employment but also the recognition of the validity of their (group) identity. And as Tideman and Svensson point out, taking control of the definition of their own identity seems to be pivotal to many people with intellectual disability.

Traditionally, the identity as an intellectually disabled person has entailed subordination, dependency and vulnerability. The self-advocacy groups have risen up to oppose this kind of identity assigned to them by society: people with intellectual disability “desire to be worth just as much as other people, to gain access to the same rights as other people, and to be seen, just as other people are seen, as a person with many different roles and a unique multiple identity” (Tideman & Svensson 2016, 4).

This quote reminded of the encounters I’ve had with the Finnish self-advocacy movement. Many members of the movement don’t mind being called as “intellectually disabled” but they prefer to call themselves as “our lot” (meikäläinen, in Finnish). One particular conversation I had with their two spokesmen, Olavi Hietaharju and Heikki Suvilehto, was documented in the only Finnish easy-to-read magazine (Leija 2/2014). In that conversation, Olavi and Heikki demanded better opportunities in education and employment for “our lot”. They also reflected on the difference between intellectual disability and illness, and concluded that whilst you can take medication to epilepsy there’s no medication to intellectual disability. I then asked whether they would take medication to intellectual disability, should there be one. They both answered that they would, if it gave them the ability to read, but that they wouldn’t, however, leave “our lot”.

In other words, they hoped for enhancement of their personal abilities but also wanted to continue to identify as members of “our lot”, as intellectually disabled. In my view, this exemplifies the diversity of disability experience in terms of social justice. As the social model of disability has so powerfully stated, the discrimination and oppression that many disabled people suffer from has to do with economic factors: “Disability is rooted in the economic structures of society and demands redistribution of goods and wealth”, as my dear friends Vehmas and Watson (2014, 647) have argued. But for many people with intellectual disability recognition of the equal worth of their identity seems to be even more important. That is hardly surprising due to the constant encounters where are they made to feel devalued, even among other disabled people.

Thus, the cultural and societal significance of impairment often determines disabled people’s experience of disablement, and their differing interests in correcting moral and political wrongs. For many material factors (i.e. redistribution) are crucial whereas for others, especially for people with intellectual disability, the most important thing is recognition: to be valued as what they are or choose to be. And often what they choose to be as individuals has very much to do with their peer group and its identity. Also, they may choose to want changes not only in their environment (external resources), but in themselves as well (internal resources, such as the ability to read). That probably applies to most of us and that’s fine as long as we don’t succumb uncritically to societal demands and cultural conventions.

Craving for literacy as such is absolutely fine, but so is illiteracy.

References

Shakespeare, T. (2006). Disability rights and wrongs. London: Routledge.

Tideman, M. & Svensson, O. (2015). Young people with intellectual disability – The role of self-advocacy in a transformed Swedish welfare system. International Journal of Qualitative Studies on Health and Well-being 10, http://www.ijqhw.net/index.php/qhw/article/view/25100/39204

Vehmas, S. & Watson, N. (2014). Moral wrongs, disadvantages, and disability: A critique of critical disability studies. Disability & Society 29 (4), 638-650.