When it comes to discussing muscle-weakening conditions, it’s easy to only think about local impact, such as accommodations available in your town, city, or country. But individuals with muscle-weakening conditions exist all across the world, and differing government provisions, healthcare and even attitudes towards disability can make experiences of support radically different across the world.
In their article ‘Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services‘, Miku Yamaguchi and Machiko Suzuki of Kyoto University, Japan, explore the choice of some Japanese individuals with Duchenne muscular dystrophy to live independently. This is in contrast to living in specialised sanatoriums designed to support people with muscle-weakening conditions. In their article, Yamaguchi and Suzuki analyse interview data of twenty-one participants with Duchenne muscular dystrophy between 2011 and 2013, exploring their ideas about independent living and self-reliant independency.
Yamaguchi and Suzuki begin by giving the context of Japan’s support system for individuals with muscle-weakening conditions. They clarify the lack of a national 24-hour home care system, and that twenty-seven sanatoriums were created in the 1960s to support young people with progressive muscle-weakening conditions; these young people would live in these sanatoriums their whole lives. Later on, however, people living in these sanatoriums became inspired by the independent-living movement for disabled people which was happening worldwide, causing them to pursue independence. The pair cited other studies which indicated a trend towards independent living facilitated by 24-hour care, although many individuals with muscular dystrophy felt they couldn’t live at home. In particular, a term called ‘independent dependency’ was cited as growing in popularity in Denmark.
Between January 2011 and April 2013, Yamaguchi interviewed 21 men with DMD in their homes, asking them questions about their backgrounds with DMD and independent living. Instead of starting with a pre-existing theory like many academics, Yamaguchi used an approach called ‘grounded theory’, where a theory was developed after (and in response to) data collection. The responses given by the men with DMD are considered ‘qualitative data’, or data that isn’t represented by numbers, such as verbal interview responses. From these interviews, Yamaguchi uncovered a pattern shared between respondents:
- Facing disease: the period of a respondent’s life where significant changes needed to be made to accommodate for their DMD.
- Physical dependence: when a respondent became more reliant on caregivers and other individuals to have their daily needs/quality of life met, often involving moving into a sanatorium.
- Autonomous action: when a respondent discovered how they could live independently and define what independence means to them.
- Self-reliant independency: when a respondent afforded themselves autonomy and choices which were not always prioritised in sanatoriums and within other support arrangements.
As their DMD progressed, respondents reported making decisions to pursue self-reliant independency as crucial to an enriched, satisfactory life. Even with a lacking welfare system in Japan, respondents preferred to live in a way which prioritised their independence, including accepting the need for physical support but being actively involved with decisions around their care. Respondents did say that living in sanatoriums offered them relief from their symptoms and a degree of autonomy due to the specialised support on offer. However, they emphasised the importance of making their own decisions about every aspect of their lives, from care to social situations. It is important to note that while all study respondents chose to live in sanatoriums, the pursuit of self-reliant independency led them to leave later on.
Yamaguchi and Suzuki’s examination of this study led them to declare their idea of ‘self-reliant independency’ as unique to Japanese individuals with DMD, in no small part due to the lacking welfare system and expectations of individuals with DMD to engage with sanatorium care. However, as Pathfinders has led campaigns and developed resources on topics such as PA/PA Employer relationships and independence (e.g., while travelling, working, etc.), it seems clear this idea has relevance to the wider muscle-weakening community outside of Japan. While the social, cultural and provisional circumstances of each country will impact each disabled individual’s pursuit of independence and autonomy differently, two core ideas emerge from this study: a lack of adequate provisions for those with muscle-weakening conditions, and few resources for seeking and maintaining self-reliant independency.
Through sharing studies like these, we gain insight into how those with muscle-weakening conditions across the world adapt to and improve the circumstances and support which define their lives. It is by doing this that we can educate and collaborate on the creation of resources which help not just one group of people with muscle-weakening conditions in specific circumstances, but on resources which can be useful to the entire muscle-weakening community.
Written by Quinn Clark
Sources Cited:
Yamaguchi M, Suzuki M. Independent living with Duchenne muscular dystrophy and home mechanical ventilation in areas of Japan with insufficient national welfare services. Int J Qual Stud Health Well-being. 2013 Aug 26;8:20914. doi: 10.3402/qhw.v8i0.20914. PMID: 23981723; PMCID: PMC3755181.