Fantasy Island: Is disability just a construct?
Evidence on the impact of a total place approach to promoting more inclusion is thin on the ground. It is therefore rare that one finds a place in time where an entire island is practiced to one degree or another in the art of inclusion. But such an Island did exist for over 200 years. I have written about this phenomenon before, but here I wish to look more closely at what the evidence gather there has to teach us. And so following last week’s blog which took us to the Island of Tanna in the New Hebrides, this week we’re off to the an island located south of Cape Cod in Massachusetts: Martha’s Vineyard.
At the time of research in the 80s the rate of deafness in the United States was 1 in 2,730 or 0.04 % of the population a pretty stable ratio across the 19th century. By contrast, Ethnographer Nora Groce estimates that at the end of the 19th century 1 in 155 people in Martha’s Vineyard were born deaf (0.7 percent), more than 20 times the national average. These high rates of hereditary deafness on the Island had been evident for over two centuries. Many of the inhabitants had come originally from the Weald, on the borders of Kent and Sussex in the UK, but no direct link between these two facts has been established.
Nora Groce, in her book ‘Everyone here spoke sign language: Hereditary deafness on Martha’s Vineyard’, details her findings and provides us with the evidence to underscore the belief that a total place approach to community inclusion is at least possible.
Her study was primarily focused on the small town of Chilmark. While not everyone in Chilmark was deaf, everyone was directly connected to someone who was; consequently everyone spoke sign language. As a result those who were deaf were not considered as having a deficit or a disability. People without any hearing impairments would routinely sign as they spoke and considered those around them that could not hear or speak as the same as them in nearly ‘every sense’. It became natural to be bilingual.
Groce noted that for a sustained period all members of the community were bilingual and that Chilmark had managed to dissolve the traditional social barriers that many deaf people experience. Consequently people in this small community were not categorised by whether or not they could hear but instead by the person they were and what they could contribute. In effect everyone had a ‘voice’, could express themselves, and associate freely. In democratic terms they enjoyed freedom of expression and free association to the same extent as any of their neighbours did.
By comparing her findings to the experience of deaf people across the USA, Groce demonstrated that deafness is not a disability but a different way of communicating. On Martha’s Vineyard deaf people lived their lives just as easily and as fully as everyone else in town. They were defined, neither as people with disabilities, nor as disabled people, but as citizens. Her work introduced an empirical case study to what had previously been an ideological debate and established that disability is primarily “defined by the community in which it appears,” (see p. 112).
Across all major health and wellbeing indicators, deaf people did as well or better than their hearing neighbours on the Island. Below are a series of extracts from the findings of the study demonstrating the stark contrast in health and wellbeing outcomes for deaf people across mainland America and those resident on Martha’s Vineyard.
In a community already familiar with deafness, the appearance of a new deaf child was not a cause for special concern or alarm. And the widespread knowledge of sign language made it possible for the deaf child to begin to communicate with everyone he came in contact with from a very early age. For all these reasons the childhood of a deaf child seems to have been much the same as for a hearing child.
Groce notes that as a rule, deaf children on the Island were better educated (in the traditional understanding of the word) than were children without hearing impairments in the U.S. She goes on to say:
‘By way of comparison, it is estimated that only 25 to 35 percent of deaf Americans were literate in the nineteenth century (Gordon 1892), and many of those were only partially literate.’
At the time of writing in the early 80’s she noted that although most deaf children across America received an education, the majority left school with only fourth or fifth-grade education, attributed to delays in learning to communicate, and ‘disruptions in special educational programs’.
‘Deaf people on Martha’s Vineyard married freely; about 80 percent of those who lived to marriageable age did marry, a rate very similar of the hearing people on the Island. It is, however strikingly high compared to the statistics on deaf marriages for the whole country, which stood at 45% throughout much of the nineteenth century.’
She goes on to say: ‘On the Vineyard 73 percent of the deaf people born before 1817 married; of those, only 35 percent married other deaf people, compared to a national average in the late nineteen century that was closer to 79 percent…. Undoubted, the bilingualism of the community made marriages between hearing and deaf members more common than it was off-Island.’
‘The only statistics for comparing the number of children born to hearing and deaf couples come from mid to late nineteen century. At that time married couples in Massachusetts had on average 4.11 children; Vineyard couples in the same period had an average of 6.1 children. Deaf Islanders had an average of 5.9 children, very slightly lower than the Vineyard average, but not a statistically significant difference, given the small size of the population.
The number of children born to deaf parents was also strikingly higher than the nationwide average.’
Making a Living & Economic Success
‘How deaf individuals supported themselves and their families, and their success in doing so, is also significant. As in other aspects of Vineyard life, there was no apparent difference between the hearing and the deaf’.
‘In contrast to Martha’s Vineyard, in the country as a whole deaf people were not well off financially…. The same is true of deaf Americans today; men earn on average 30 percent less, and women 40 percent less, than hearing people.’
‘The laws of the United States and the Commonwealth of Massachusetts did not deny deaf adults the right to participate in town affairs, to hold office, or to vote. But in the nineteenth century and earlier, this was a moot point in most towns and cities because the prevailing attitude was that ‘the deaf’ should not participate. On the Vineyard no such barriers existed. The deaf were active in town government and the local militia.’
‘From 1694, when Jonathan Lambert bought his first tract of land on the Vineyard, to 1952, when the last deaf Islander died, all but one of the Island deaf were considered fully responsible for and capable of looking after their legal affairs.’
‘Hearing and deaf people intermingled everywhere-at home, at the general store, at church, at parties. Participation by deaf family, friends, and neighbours was a normal part of everyday life.’
As scholars in Disability Studies agree, a person is often most disabled by unnecessary barriers or narrow assumptions about what is ‘normal’.
The people in Martha’s Vineyard demonstrated that the concept of ‘a disability’ is an arbitrary social category and that the real challenges for deaf people are actually around them, not within them. Deafness is not the problem but disconnection and lack of community can be.
In the 20th century, tourism became a mainstay in the island economy and jobs in tourism are not as deaf-friendly as fishing and farming. Further migration joined the people of Martha’s Vineyard to the mainland both physically and culturally; today the island community resembles wider society and relatively few speak sign language there anymore.
Alfie Kohn, in his book ‘No Contest. The Case Against Competition – Why we lose in our race to win’, gets to the heart of the issue when he says:
‘It is not a fact of human nature that a person’s sense of competence or identity has to be derived from social comparison. It is instead a matter of what kind of task is being performed at the moment and what kind of culture one lives in.’ (see p.41)
Groce’s work evidences the disabling effects that a culture creates when it marginalises people with ‘disabilities’ by telling us in some ethnographic detail what happens when a community takes joint responsibility for inclusion; it holds a mirror up to the rest of the world, and to what we accept as normal. When inclusion becomes everybody’s business, outcomes are achieved that can never be attained through institutional intervention, regardless of how well run that institutions may be. This atypical occurrence on inclusion takes my previous statement from the realms of opinion toward a statement of fact.
I suspect, though, that many would read Groce’s work and conclude that its central lesson resides in the importance of social networks for people with disabilities. That would be to completely miss the point. These days few would argue against the importance of social networks for wellbeing, fewer still would contest the importance of social connectivity as a means of countering issues of marginalisation.
What Groce’s study teaches is less about Personalisation and more about Communalisation. This case study is pointing towards the intrinsic and irreplaceable value of community wide inclusion as distinct from intentional circles of support, although they too are of huge value. The wellbeing outcomes that were enjoyed by people with hearing impairments on Martha’s Vineyard were the cumulative result of generations of people, who had found a way to be together, that ensured everyone’s gifts were given and received. In essence they had created a culture of belonging. In doing so they fundamentally changed the meaning of the word/label ‘disability’ and blurred the lines between inclusion and exclusion. It proves that the solution resides with the Community and disability is something that culture creates by disabling people. The real disability is in fact disconnection, and that’s everybody’s business.