Monday, June 26, 2006

Access to the Knowledge and Experience of Our Community

So why do we need a Wikipedia-like web resource that is specific to blindness and vision loss? The obvious reason is that the information available through Wikipedia has been created by and for the general public. It is, from the perspective of people with visual impairment, not only sparse, it is totally devoid of any concept of what it is to be blind – to experience vision loss from the perspective of those of us who live with it on an ongoing basis.

Rehabilitation agencies offer basic training in activities of daily living, orientation and mobility and assistive technology to individuals who are new to the experience of vision loss. But when these individuals leave the controlled environment of rehab services, they continue to make adaptations and invent new methods to accomplish their day-to-day tasks. Even those of us who have been blind for many years are constantly fine-tuning and expanding our skills.

Our experience is replete with examples of assistive devices that were conceived, developed and marketed without the involvement of those of us for whom the devices were designed. As a result, Millions of dollars have been spent on the production of assistive technology that is never used, or is used for a short time and then discarded because it did not deliver the independence and functionality promised by the developers. Time and resources have been wasted because devices were developed solely by well-meaning researchers, engineers and manufacturers who did not take into account what we, the consumers – the individuals who actually use the technology –,would find useful.

The greatest barriers to the development of effective strategies and designs by rehab researchers to date are most certainly culturally related, in that there is an understandable inability to truly comprehend the experience of blindness as only a person who is blind knows it. It is we who know most intimately what difficulties we face - what we can and cannot do - not because we cannot see, but because of the time and energy it takes to get things done when we don't have the right technologies and strategies available to us. Time, for us, is a very precious and scarce thing. We must be very frugal in our use of time if we are to ever have a reasonable quality of life - if we are ever to be able to do the things we most value. The devices and strategies that are currently being developed must be devised to save us both time and energy.

Researchers, service providers, and even the friends and family members closest to us, can only be observers of our experience, while we who are blind, are full participants. As a result, there is often a vast gulf between the perceptions of others, and our up-close and personal knowledge of our own experience. To those who observe us as we go about our daily lives, our experience is perceived only in terms of what it is not. But to us, it is a rich and full life of human and natural experiences. As individuals with vision impairments, we face some unique challenges, and use a wide variety of techniques and adaptations in order to function independently. But as members of our communities, we are no less valid, worthy of living, or fully deserving of being treated with dignity and respect than any other individual.

Those of us who are fortunate enough to have had the opportunity to learn from other members of the blind community are willing and able to impart what we know to those who share our experience of living with limited or no vision. Those of us who are not so fortunate are often left to fend for ourselves. Despite the wealth of information available to us, we are often deprived of experience-based knowledge and wisdom that could enrich our quality of life. Knowledge, separated from experience, ceases to have real meaning or value. Those of us who are living the experience of vision loss understand that the most valuable knowledge we acquire comes to us as a direct product of our own experience. Communicating knowledge most effectively requires people to have had common experiences. In our case, the experiences of blindness.

Now, what if we had one resource available to us where all the knowledge and experience of the blind community could be found – from how to cook and eat a lobster, to how to diaper a new-born, to what assistive devices work and do not work, and why? A resource where researchers, service providers, family members, prospective employers, educators and anyone seeking information on any topic related to blindness and vision loss, could access the knowledge of those who can provide a perspective that no one else can – those of us who are living the experience.

Although we know there is an incredibly rich vein of knowledge to be found within our own community, we are spread so thinly through the greater community that we rarely meet or find the time to learn of each other's knowledge. There is not an adequate means of compiling and organizing our knowledge for easy access by all. What would be of great benefit to us is an easy means of organizing and obtaining the learned skills and knowledge that already exist within our own community, but can only be found amongst those of us who have successfully adapted.

The time and effort required to compile and organize such a database of knowledge is well beyond the means of any single person within our community. This clearly must be a project taken on by the community itself, but to do so we must have resources, technological support, data access - and most of all, a host of community volunteers willing to commit time anenergy to this project.

In order to obtain the necessary funding to begin developing a wikipedia on blindness and vision impairment, it is critical that we demonstrate that there is widespread grass-roots support from those who have the most to gain. If you are prepared to assume an active role in establishing and maintaining a wikipedia on blindness and vision impairment by being a contributor and sharing your knowledge and experience, or if you are willing to allow your name and comments on the value of such a resource to be used in proposals for funding, please contact Penny Zibula at 404-4321-6111 ext. 6795, or e-mail Penny.zibula@va.gov
Your name and comments will not be used without your permission.

(Note: This blog is itself a collaborative effort – and reflects the ideas of several people whose goal is to create a wiki for people who are blind or visually impaired.)

Thursday, June 01, 2006

Blog Mission

This blog is intended to collect comments on the feasibility of a wiki specific to the needs of people who are blind or who have low vision.

Cooperation, a fundamental element of life, is vital in accessibility progress. But the technology that enables collaboration is not always easy to use.

Since you are reading this blog, you have found one accessible form of information. But, what you are reading is a series of sequential comments on a specific subject.

The subject of this blog is the development of a wiki: a collaborative environment of resources for blind and visually impaired technology users. Just as Wikipedia is a collaboratively edited resource, this proposed wiki would be a resource for a targeted audience – a wiki created by a smaller set of contributing authors and editors.

Please feel free to use this blog to express your thoughts on the subject: good idea, poor idea? Ways to recruit authors and editors. Suggestions for the major categories of information. Possible sponsors / funding sources. Alternative forms of technology to harness the same information to support the same goals.

Let the collaboration begin.