Copyright Gerald  Gold August 2003

The metaphor of accessibility as part of the study of disability frequently represents the requirements of living with disability but has no consensual social science definition.  Moreover, analysis of accessibility is largely absent forom studies of disability. Most published discussions of accessibility deal with standards for motor disability; which is usually represented by a wheelchair icon. However, all too often this icon represents only standards for motor disabilities and does not include visual or aural disabilities or numerous others disabilities or so-called impairments including disabilities which are invisible and non-apparent.  In this chapter, I show that the context of accessibility is socially constructed, with a meaning that goes beyond impairment and adaptive devices.  My examples come from a comparison of two groups in a large Canadian city which focuses on alternate meanings of accessibility for disabled persons.  The most formal expression of accessibility is architectural standards codified in written standards has published regulations like the Ontario Building Code,  relatively ineffective legislation covering new construction in Ontario, Canada.  This legislation is far less inclusive than the Americans for Disability  Act, which transformed the position of the disabled in the United States.  In a wider context, tourist literature frequently mentions accessible accommodation. In practice, it can be more important to relate accessibility to alternative styles of independent living, interpreting  accessibility as what I Davis and Lifchez (1987) refers to as  a "quality of experience."

As they explain:

 For accessibility is more than a matter of admittance or logistics ;  it is also a quality of experience. How one feels about a place , how one interprets it, or even whether one can interpret it... supports people's activities and desires, permits them to be and do what they want, and causes them a minimum of pain, frustration and embarrassment.  [A contrast is a place that] confuses, harasses, and embarrasses people.. (Davis and Lifchez 1987:40)

Toward an Anthropological Perspective On the Accessibility

This paper extends this interpretation through an anthropological and sociological perspective of the boundaries of accessibility and of their meaning to persons with disability, a meaning which bridges cultural and architectural perspectives. This interpretation emerges from conversations with two distinct populations: the directors of a cooperative housing complex and students active in a university disability movement.  In his second context, identity relates to status at the University and, except for a few students living in residence, political concerns focus on the everyday University environment and not on living arrangements.

            From a broad perspective, both groups, each with about ten participants, define themselves as proactive in the everyday resolution of political issues and barriers to independent living, but the living arrangements of students, most of which are private concerns, are never a political issue in group politics. My objective is to suggest that their alternative formulations of accessibility should be interpreted in terms of a total lifestyle or what some have referred to as disability culture (Brown et. al. 1995). Moreover, for both groups, this cultural concept of accessibility is as much about the relationship between people as it is about the relationship between people and assistive devices as their physical environment.

A Conversation between Architect Martel and Social Scientists Gold and Cluskey

This is a concern that began in a conversation between myself, sociologist Patrick Cluskey, and architect Paul Martel as we sought a convergence of interests in a discussion of architectural standards for accessibility which are incorporated into the building code, and of the everyday rituals of disability which frequently are concerned with issues of access. Emphasizing this cultural construction of disability accessibility, Martel reminded us that accessibility is a feature of social network and mutual interdependence. That is, there is no building code that can replace the social networks that relate disabled persons with each other and with friends and family. In Western contexts, accessibility for persons with disability is inseparable from the development of attendant care and the assistance provided by family and friends which can permit Independent Living. The attendant becomes part of a socially-constructed accessibility in which the cultural construction of personhood, which depends on kinship and community in non-Western societies, (Ingstad and Whyte 1996:8), is replaced by personal service attendants who may become part of a network of weak ties (Garnovetter, 1973) of persons with disabilities.

Thinking about Accessibility

Our initial research focuses on self directed attendant care in two contrasting environments: accessibility within York University which is my everyday work milieu, and accessibility within Access Cooperative Apartments, which is the everyday residential and sometimes work environment of co-researcher Patrick Cluskey. Four of the eight respondents in the Access Co-op work elsewhere in Toronto and all eight respondents at York University live elsewhere in the city. Only two of the university respondents live in independent living arrangements while the others reside my their families. Those who live at home rely on both 'outreach' attendant services and family assistance.  Three students, for whom disability is not a significant mobility impairment, do not use any attendant assistance.

Access Co-op: Timed Accessibility

A distinguishing characteristic of the residents of the Access Cooperative is that all 15 households with persons with disability use a full-time attendant service which makes occasional timed visits to their apartments. Most residents work as volunteers for as many as 15 hours weekly and many are involved in the cooperative executive. Several residents with motor disabilities, have full-time employment and work in outside offices while their spouses are involved in volunteer work and direction of the cooperative. In this way the residents of Access are committed to independent living and much of the discussion of the directors of the access cooperative deals with the complexities of everyday life in their building.

Disability Services at York University: an Amalgam of Student and University Priorities

Disability services at York University are represented by two organizations: a university-managed service for students with disability and by ABLE -- an organization, which provides a social and political focus for students who self identify as disabled. The university also sponsors a branch of a national disability service organization which provides attendant care service for disabled students and myself (as the only faculty recipient). In addition, York students are in close communication with NEADS, a national organization of students with disability whose 1997 conference was organized by ABLE.

Though several parties represent student activities of persons with disability collectively at the university, none of these are concerned with independent living. Most students with disability rely on family or friends, or 'outreach' attendant services and make independent arrangements for personal services. Most rely on paratransit for commuting to the university or access to any outside activities. Possibly because of their inability to get part-time jobs, most students with disability whom we interviewed, even those with full-time course loads, like the residents of Access Cooperative, are involved in outside volunteer work or sports.

Our interviews include seven respondents from this group, all of whom have been active in the executive or in the membership of ABLE (some are members we contacted at meetings.) In this way, we were familiar with most respondents from special events and casual encounters.  Most students live with their families, although several live independently, either on campus or elsewhere.

Interviews at Access Apartments were completed on site or occasionally, by telephone. As co-researcher Patrick Cluskey is a resident of this building and one of the founders of the co-op, he provides historical and interactive interpretations to supplement the seven interviews completed by the same research assistant who had done the interviews at ABLE. Respondents in this building are part of the executive committee which sponsored the Cooperative about five years earlier. Though only three percent of the units at Access are specially designed corner units for persons with disabilities, it is a building conceived by a disability community interest group to accommodate their adaptive requirements while also serving a significantly larger population of non-disabled people.

Comparing the Social Construction of Accessibility

Comparison of these two groups raises a number of issues, two of which relate specifically to the social construction of accessibility.  First is the significance of daily routines which enable accessibility and are an essential aspect of its construction. These daily routines begin with the roles of the attendants, based in the building, who provide timed visits that fulfill daily personal rituals of getting up, washing and dressing in the mornings, preparing meals, and assisting in the bathroom. As many residents carry out their work (which may be volunteer work) in their apartments, adjusting their schedules to the attendant visits, which provides what many insist is an indispensable service to them. More than assistive devices, attendants, like the extended family of the nonindustrialized world, are agencies of accessibility who permit persons with disability to undertake complex tasks which would not otherwise be feasible or available to them. A related interest extends beyond attendants to the role of social networks in creating access. An underlying issue is how these networks relate to informant definitions of accessibility and of disability. As an identical informal interview schedule was used in both locations, the balance of this paper will focus on those parts of the interview which focus on access.

Daily Routines: Edward

Not only was our question about daily routines always answered extensively, it underscores the importance of attendant care and assistance from relatives and friends as modes of accessibility. For many Access residents like Edward, who has muscular dystrophy, the attendant's scheduled presence makes both accessibility and independent living possible. For example, after his is morning rituals, Edward works on the planning of a raffle to raise charity funds.

Edward's day starts at 7:30 a.m. when his attendant "... comes in and gets me up." During this time Edward has his morning coffee and the attendant tends to his cats. Then "... I go off to the washroom; shower; get dry after that, half dressed; have a bit more coffee; use the toilet; finish getting dressed and they leave and I finish shaving."

Without exiting his apartment, Edward spends the next part of the day working at his computer. "I've been working on organizing quite a large raffle that can generate about $200,000 and it's a long tedious process. The last few weeks I've been working probably six to eight hours (a day) on that."

"At 1:00 p.m., an attendant comes for half an hour to lend me a hand if I want to get some lunch or use the washroom again." After this, Edward returns to work and, at "dinner time, another attendant comes..." and the lunch routine is repeated. In the evening his wife returns " ... and we'll watch a movie, or listen to music or talk."

Attendant care is an implicit part of Edward's day. Beginning in the early morning, he accommodates his schedule with the expectation of constant and scheduled interruptions. If this is part of the construction of his accessibility, how does the attendant fit into this ongoing construction? Is the personal assistant an equivalent to wider hallways and accessible living space? Though Edward sets the schedule and requirements for his personal assistants, the role of other attendants is not always a negotiated one even if their assistance is essential for accessibility.

Though assistive devices as simple as a wheelchair are often used as symbols or icons of accessibility, many persons with manual wheelchairs defiantly resist the move to a power chair, explaining that they do not wish to become or appear "more disabled." In several cases, the insistence on using manual chairs and personal assistants may also stem from a reluctance to forsake the use of attendant services.

Sam: Resisting Accessibility

Sam tells us that because of his mobility impairment (also muscular dystrophy) for which he uses a manual wheelchair, he relies on the support of his family or friends to provide transportation to various venues (e.g. libraries). Although he has no trouble negotiating flat surfaces, his family would rather he switch to an electric wheelchair because it is sometimes "an inconvenience" for them to help." However, Sam explains that he resists an electric wheelchair because it would mean "my, muscular dystrophy, will be more progressive ... and I want to use the muscles that I do have now.” Sam realizes that he is "stubborn,” and that his this flexibility and accessibility are dependent on personal assistant services.

"I use attendant care both at home and at school. The care provided at home is through a Red Cross outreach program, and they help prepare for daily life" (e.g. transferring, getting out of bed, and personal hygiene). However, at school, he relies on the Ontario March of Dimes (outreach services -- see above discussion York University) and they help with minor tasks arising from his mobility impairment (e.g. taking books from his bag). "They are very instrumental, they allow me to do the necessary things I need to do here at York.” Sam explains that attendants help him to "... attend class ... get resources from the library ..." and, without them, he "... wouldn't be able to attend school .…”

What is Accessibility?

Accessibility for respondents in both locations in this study, cannot be separated from reliance on others either as attendants (personal assistants) or as assisting family. Particularly noteworthy is Sam's resistance to assistive devices such as the refusal to move from a manual wheelchair, propelled by personal assistants, to an electric wheelchair which offers more 'independence'. This resistance which is also part of a reliance and commitment to personal networks is evocative of the absence of the role played by family in third world settings where the disabled are not detached from their wider community.

From this multidimensional respective on accessibility, anthropologist and architect benefit from alternative perspectives on form and function which do not seem initially to be complementary. The architect follows the manner that persons with disability rely on assistive devices and attendant services as elements of accessibility to "built form." Similarly, the anthropologist accounts for the consequences of "built form" with cultural perspectives of disability. An significant finding of this research is that accessibility is a consequence of social and cultural expectations as much as it is influenced by built form.

Conclusions: redesigning a symmetry of space

This would only be an issue at the university if classrooms and residential spaces were redesigned in regard to their relationship to accessing university resources and those of the wider city. Elsewhere, persons with disability who live independently are partially separated from non-disabled others by the personal assistant (in Toronto, "attendant") services which permit them to perform at a high level of functionality. For Cooperative residents, the attendant enters into every aspect of daily routine especially for those who do not work elsewhere. For these residents, there is an approximate symmetry between wheelchairs and attendants in that both permit accessibility.

The closest mesh of culture and form comes from our study of the Access Cooperative where accessible space, assistive devices, and attendant care permit the everyday operation of a disability community which is not only integrated with the wider work force but also with the larger population of non-disabled residents. The community which surrounds ABLE is more complex as it includes family and friends both of whom assist with accessibility. Attendant service is significant in both communities and especially at the Cooperative where some residents are able to construct complete work environments. Finally, though this is not explored in this brief essay, in both locations persons with disability tend to form a distinctive group which some might relate to a common disability culture.

Brown, Stephen E., Ruth Branon and Carol Gil (1995) "Disability Culture" [thematic issue), Disability Studies Quarterly. Vol. 15,4:2-19.

Davis, Cheryl and Raymond Lifchez (1987) " An open letter to architects," in Rethinking architecture: Design Students and Physically Disabled People. Berkeley: University of California Press.

Frank, Gelya (1988) "Beyond Stigma: Visibility and Self-Empowerment of Persons with Congenital Limb Deficiencies". Journal of Social Issues Vol. 44,1:95-115.

Garnovetter, Mark (1973) "The Strength of Weak Ties." American Journal of Sociology. Vol. 78:136-180.

Gold, Gerald (1994) "Caretakers in a Miniature World: Encounters Between Para-transit Drivers and a Disabled Anthropologist." Anthropology of Work Review. Vol. 15,2-3:19-21.

Ingstad ,Benedicte and Susan Reynolds Whyte (1995) Disability and Culture. Berkley:University of California Press.