Report

Teaser, summary, work performed and final results

Periodic Reporting for period 2 - DISLIFE (Liveable disabilities: Life courses and opportunity structures across time)

Teaser

Recent statistics show that about 65 million people (10%) of the European population are disabled. Employing life course perspectives of humans’ experiences of disability in Sweden, past and present, this project challenges present preconceptions about disability and its...

Summary

Recent statistics show that about 65 million people (10%) of the European population are disabled. Employing life course perspectives of humans’ experiences of disability in Sweden, past and present, this project challenges present preconceptions about disability and its diverse impacts on people’s opportunities in society. The findings increase our understanding of how and why liveable disabilities vary across time and between individuals that help to promote more equal and fairer opportunities for disabled people today.

People with disabilities are marginalized in society and research, and little is known about how disabilities become liveable. Our research team challenges this multifaceted bias by investigating ‘liveable disabilities’ as a function of disability and opportunity structures from the 19th century until now in Sweden.

The four objectives/themes that the DISLIFE project examines using quantiative as well as qualitative methods are:

1. Health and well-being
2. Transitions into education and work
3. Into a partner relationship and family life
4. Opportunities in leisure structures (sports, cultural activities, Internet, media)

Quantitative analyses of Sweden’s long-term population databases reflect how disability impacts on people’s educational, occupational, partnering and survival chances (Themes 1-3). Qualitative analyses uncover how disabled people today experience and talk about these chances and how mass media depict them or they themselves communicate their life stories in different media. We make innovative studies of social activities and disability representations in culture, sports and on Internet (Theme 4), which may promote disabled people’s opportunities in society at large. This enables us to answer three basic questions:

I. When? Have liveable disabilities increased or fluctuated across time?
II. Who? What variations in liveable disabilities are found between different people with different impairments?
III. Why? Which opportunity structures and individual features work to impede or further liveable disabilities?

Work performed

Of the four objectives/themes, significant progress has been accomplished half way through the project’s lifetime. Ethics approvals for studying the population databases have been sought and obtained from the National/Regional Ethics Board, as well as for all the data collection and methods associated with qualitative analyses of the recent decades.

Themes 1-3 have been substantially researched regarding Sweden’s pre-welfare period (19th century) by the PI and her members and through collaboration with other colleagues. The results show statistical life-course outcomes on what life with disabilities implied for 19th-century people’s health and well-being in terms of mortality (Theme 1), their opportunities in the labour market (Theme 2), and transition to marriage and family life (Theme 3). A few more scientific works of Themes 1-3 are yet to come concerning the 19th century before the project moves into the welfare era of 20th-century Sweden (c. 1930-1990). These upcoming results will supplement the research of team members now obtaining findings to Themes 1-3 in recent Sweden (post-welfare period) using both quantitative and qualitative analyses. As for Sweden’s post-welfare period, Themes 3-4 are increasingly covered primarily by the two postdocs employed since Feb 1, 2017; one conducting statistical analyses on how disabilities affect people’s partnership while the other postdoc examines how disabilities are portrayed in popular cultural. In addition, Theme 4 is analysed by a few senior team members whose results are under way and concern disabled people in sports, media and on the Internet. Taken together, all these measures have made the project progress in all major aspects and in accordance with the four themes researched.

Beside the acceptance of eight publications, six of which are published (by July 2018), the scientific achievements have resulted in the organizing of one international workshop (June 14–16, 2016, Umeå), one inter-disciplinary symposium at Umeå university (Nov 30–Dec 1, 2017), and one disability session to the European Social Science History Conference (Belfast, April 4–7, 2018). During 2018–19, the PI and her team further act as guest-editors of two special issues accepted to international peer-review journals (The History of The Family; Scandinavian Journal of Disability Research).

Three scientific key events organized by the PI and her team during the first reporting period:

I. Organizing the International Disability Workshop ‘Transitions Across the Life Course of People with Disabilities: Experiences, Opportunities and Strategies, Off- and Online’, attended by 25 disability scholars from Sweden and abroad with three keynotes (Prof. Mark Priestley; Associate Prof. Darren Chadwick; Prof. Margaret Shildrick) and two major discussants (Prof. Simo Vehmas; Prof. Eva Jeppsson-Grassman), Umeå, Sweden, June 14-16, 2016.

II. Organizing the session ‘Disabilities, partnership and family across time’, accepted and held at the European Social Science History Conference (ESSHC), double-panel of nine papers and two discussants (Prof Lisa Dillon; Dr Sonali Shah), Belfast, Northern Ireland, April 4-7, 2018

III. Organizing the International Symposium ‘Gender, Disability and Special Education: Intersectional and Interdisciplinary Research’, attended by 15 disability scholars from Sweden and two keynotes (Prof. Deborah Youdell and Prof. Sheila Riddell), Umeå University, Umeå, Sweden, Nov 30–Dec. 1, 2017

The DISLIFE findings have been well received at international conferences in Europe, North America, Australia and Africa devoted to disability, population, gender, history or welfare issues. Thus far, the team member have held some 30 oral/paper/poster presentations at such conferences, e.g. the NNDR Nordic Network on Disability Research (May 2017); ALTER European Society of Disability Research (July 2016, July 2017); PAA Annual Meeting of the Population Association of Ame

Final results

A few significant features have made the project progress beyond the state of the art, one of which is associated with the statistical life-course analyses and findings of Themes 1-3 (pre-welfare period of Sweden). These results have contributed major clarifications regarding the implications disabilities have on human life historically. Using digitized parish registers from 19th-century Sweden and statistical tools such as Event History Analysis (primarily Cox-regression models) and Sequence Analysis, the project has obtained new insights onto the diverse impacts of disability making consistent comparisons between disabled and non-disabled layers of populations. Exceedingly few scholars within the field of disability studies and in disability history, if any, can base their findings on such a large quantity of cases as this project does from past Sweden. It will continue to provide similar comprehensive and comparable life-course findings all the way to the present.

The longitudinal scope of the project constitutes in itself one unique feature enabling it to move beyond the state of the art. In combination with the analytical life-course approach, this is key to identify ‘liveable disabilities’ across time accounting for individual characteristics and structural opportunities in the setting. This means we can identify many differences across contexts and between types of disabilities and the genders instead of treating disabled people as one homogeneous group. For example, men paid a significantly ‘higher price’ in terms of mortality risks than did women if disability interfered with life. Our results are further the first worldwide to show statistical evidence not only on how disabilities limited past people’s survival but also their opportunities both in the labour and marriage markets no matter of gender. However, and most importantly, disabilities did not stop all people from taking up work or marrying a spouse and form a family in 19th-century Sweden. For instance, one disabled person in five married during the lifetime we follow them. For men, physical disabilities had more negative effects on their job and marital chances than for women having the same type of disability. These are just a few glimpses of the statistical results that reveal a great many variations within the group of disabled individuals.

For recent time and due to its cross-disciplinary nature, the DISLIFE project bases its thematic life-course findings on quantitative as well as qualitative analysis. This makes the team provide a more complete yet complex picture on how disabilities become less or more liveable in Sweden today, which we has just seen the beginning of. Exciting evidence is to be expected as comparable results are increasingly obtained during subsequent reporting period.

As for the expected results during next mid-term period, they are manifold and already under way. First, these results contribute comparative statistical life-course findings to those obtained (Themes 1-3, 19th-century Sweden) that reveal how people with disabilities fared during Sweden’s welfare era and until recent time regarding health, education and job opportunities and their possibilities to unite a spouse. Second, qualitative analyses consisting of interviews with young adult people (> 18 years) living with physical disabilities in Sweden today will complement the quantitative project results of Themes 1-3. Third, exceptional results coupled with Theme 4 are upcoming, one strand of which examines how people with disabilities present themselves and interact on social media (e.g. Twitter, Instagram). This helps the project obtain knowledge on how disability affects people’s possibilities to empowerment and self-representation in present society. Another strand of Theme 4 investigates how the relationships, sexuality and identity of disabled people are portrayed in popular culture represented by media (films/movies), which work both to manifest

Website & more info

More info: http://www.idesam.umu.se/english/research/research-projects/dislife/.