Following is a distillation of what we learned from interviews and questionnaires of thirty-three designers with disabilities about their personal development and professional lives. Living around the world, their mean length of professional practice is nineteen years, ranging from under one year to forty-eight years. The interviews explored issues of disability and self-identity, presentation of self in the marketplace, the relationship of disability activism to professional life in design, and levels of inclusion in their professional organizations. The interviews concluded with discussions about the possibilities of networking and mentoring among designers who have disabilities.
The majority developed an interest in environmental design during childhood.
The perceptions of significant adults about design professions affected the type of messages these designers remembered about entering professional life. Both encouragement and discouragement were often based in misconceptions. There is a need for the design professions to present their work to children. Though common misconceptions about design professions were mentioned as a problem, of the twenty-four designers whose onset of disability preceded entry to design school, only two people reported verbal discouragement given them as children against entering design. Gender barriers were mentioned more often than disability as a basis for verbal discouragement.
There was no common approach about how to deal with disability issues and needs when applying to college or design schools. The approach chosen about how to handle the disability when in the midst of this competitive process typically would be repeated when looking for professional work upon graduation. This implies that self-marketing and presentation skills are developed during childhood. Many expressed a desire for an understanding or guide to what generally would work best, but there was no consensus about what that might look like. In general, these designers reported doing things on their own, and figuring things out for themselves. Very little assistance at these transition periods was reported.
Asking for assistance in advance of entering design studio or college was considered important, but lacking understanding of what would be needed was a common problem. Of those who reported having offices of disability services on their campuses while in school, most said that these offices seldom understood what was required in studio-based education. There is a need for better communication between design school departments and offices of student services about the needs of students with disabilities in design education.
The majority did not think that equal access and equal opportunity were provided to students with disabilities in their professional education programs. There was not a consensus about the balance between the individual's responsibility to adapt, and the program's responsibility to provide equal services. There was no discernible difference by decade in how accessible the programs were. For example, one student from the 1950's with multiple disabilities reported having no access problems, while another from the late 1990's said the program was not accessible. Administrative attitudes and approaches were mentioned as influential in what quality of services was provided.
Discussions of ideas such as "barrier-free design" or "universal design" usually were not part of formal education in design programs unless originated by the student. One assumption often expressed was that programs today are improved in this respect. However, no trend in the increase of actual instruction of these issues can be noted by the reported experience of the more recently educated designers, though an awareness of disability issues by design students as a matter of civil rights was shown to have changed over the decades. Individual programs varied greatly in terms of access issues, and the decade of instruction did not seem to be a significant factor in this regard.
There was a tension reported about wanting to be seen first as a designer and not just as an access expert. Caution was expressed about the dangers of creating a disability ghetto within the design professions. There was a wariness of people and programs who try to do things for people with disability, rather than with them. This conflict about whether or not to be "the access expert" often moved unresolved from educational settings to professional life. But some designers did purposefully choose to be seen as experts in this issue, and others consistently resisted having their practice be directed by people's conceptions of them as access experts. Some reported that their practices gradually conformed to what they could market the best, which was an expertise in universal design, though that was not the direction they had originally intended. Some moved the conversation from universal design specifically, to the idea that good design is always fundamentally accessible. However, it was clearly reported that access in educational and design practices is often ignored if not addressed specifically.
All of the reported barriers and adaptations in education and professional practice are enumerated in a longer report where they are categorized into three types: physical, programmatic and attitudinal. Many obvious needs such as access to rest rooms, or communication services for the deaf during studio reviews, were only met at the student's request or insistence.
When asked if their own practice of design significantly differed in light of their disability from the practices of nondisabled designers, 88% said that it did. The majority of those also reported that they believed their practice was not only different, but that it was superior to what it would have been if they were nondisabled. This was not attributed to disability itself as a guarantee, but of how living with disability while thinking about improving designed spaces had heightened their thoughtfulness, determination, maturity, problem-solving skills, empathy, aesthetic consciousness, kinesthetic awareness and social justice in design. It was reported that the creative response to disability, not disability itself, is what improved one's expertise. Skills developed in strategies for living well with disability are skills which are fundamental to successful design.
Issues of pain, stamina, speed and fatigue are common in certain types of disability, but a minority of those interviewed reported health issues as an obstacle. Disability was never mentioned in terms of reducing the quality of one's work. When the designer was allowed to manage pain and health care needs, the quality of the work was not an issue. Social attitudes and practices seemed more restrictive and problematic than physical barriers.
When asked if they participated in disability activism or advocacy groups, 82% reported that they did. Of those, 48% reported that this activity helped support their practice of design. It was found that their age, country of residence, decade in design school, and type of disability showed no pattern in predicting whether or not respondents would have participated in such groups. However, all six women who were interviewed said yes to both questions. It is of interest to note that a few respondents did not claim an activist or advocacy role for themselves, yet they described their participation as volunteers with groups who worked at improving access in their communities, or who worked politically to create access law and regulations. While not identifying with the terms "advocacy" or "activism," they have performed what can be seen as activism.
Professional conferences and the meetings of professional organizations could play an important role in access to the professions. Respondents spoke of local, national and international meetings when asked if they were provided equal access and equal opportunity in professional organizations and at professional conferences. Many felt that access is getting better, and that the expectations of how conferences are to be held are changing. However, professional organizations clearly could be doing a better job of inclusive practices. One respondent, who strongly identified herself as a disability activist, suggested that the best way to change practices of these professional groups is to have people with disabilities in a position to plan and execute conferences, not just give advice about them. She believes that while nondisabled people may show awareness of certain needs, it is in the details of an event that the accessibility and feeling of inclusion often fall apart. Other respondents expressed gratitude or surprise for whatever was offered at professional conferences in terms of disability services, and they had not given this question much thought. These people saw adaptation as primarily their responsibility and personal problem, not necessarily a responsibility for the conference planners. Some spoke more about difficulty in travel, or about specific problems with hotel management and facilities than they did about any responsibility the professional organization itself might have had in ensuring access and inclusive practices. This issue would likely spark a lively debate if this particular group of designers were to discuss it.
This question is about more than design of a conference. It was included to reveal attitudes towards disability taken by professionals in design, to reveal access for people with disabilities to the professions socially, and to reveal design of the professions themselves and what it means to be a professional. This is a particularly rich subject for further discussion and research.
Most of those interviewed (94%) agreed that some type of networking of designers with disabilities would be helpful. Networking was visualized as a tool for exchange of design information, for improving inclusive or universal design, for providing feelings of positive support as part of a group, for improving disability activism in design, and for providing increased professional exposure. A majority (85%) expressed an interest in mentoring a design student or newer professional, and many reported positive experiences doing that already. One designer mentioned that we are all mentors of one another, and cautioned against professionals who do things "for the disabled." That warning underscores the intent of this project, which is to increase the presence of people with disabilities in the design professions with the hope that designed environments will improve as a result.
Access to graduate programs and professional life in all fields of study is problematic for people with disabilities. Studio based education in architecture, landscape architecture, interior architecture and industrial design is often inaccessible to students with disabilities. Teaching the techniques and goals of universal or inclusive design in design school programs is an ironic endeavor when design schools themselves are inaccessible, and design professionals see people with disabilities as a user group, rather than as potential peers and colleagues. Design education is improved when people with disabilities participate, and the practice of design will also improve when people with disabilities are recruited, educated and supported in the design professions.
Daniel G. Hunter
Research Associate, Adaptive Environments Center
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