THE SOCIAL
CONSTRUCTION OF ACCESS:
ALTERNATIVE VIEWS OF AN ARCHITECTURAL CONCEPT
Gerald Gold,
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 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
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
Disability
services at
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
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
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
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
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.
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and Raymond Lifchez (1987) " An open letter to
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