Mary Jane Barnett
Anything that could make it difficult or impossible for me to read would change my life, and not in a positive way.
There are people who believe that DAISY is the solution to the information "famine" around the world because they read DAISY books – they know the difference it makes from their personal reading experience. And there are people who believe in DAISY because they have witnessed the difference it makes in the lives of people with a print disability – those who cannot read standard print or electronic publications. Mary Jane Barnett is one of the many people in the latter group. She is a serious DAISY fan and advocate, a highly educated person who believes: "it is possible for anyone with a print disability, anywhere, to benefit from DAISY!"
I am, among other things, a tremendous fan of DAISY! My name is Mary Jane Barnett and I live in Fort Worth, Texas and have pursued educational objectives in several areas. I have had a variety of work and life experiences but I want to focus here on how my interest in DAISY developed over a substantial period of time.
Long before the development of DAISY, I was a reader – of anything and everything. My love of reading began in childhood when I was encouraged by parents who read to me, and by my parents, relatives, and friends who regularly supplied me with books.
At age five I began to complain of pain in my right knee – I was diagnosed with an autoimmune disease, juvenile rheumatoid arthritis (JRA). Eventually JRA compromised all of the major joints in my body. One of the major components of treatment at that time was rest. Since I could read while resting, reading became an even more important part of my life.
As I entered and continued through elementary and secondary school, I usually excelled academically because of my exceptional reading skills. Since my ability to participate in physical activities was limited, my success in academic efforts was a welcome compensation. Many new drugs and treatments became available for JRA, and I sometimes benefited. However, as I grew older I began to understand that some medications could have serious side effects, and often had to make additional visits to doctors to monitor possible adverse reactions.
When I was in high school I was treated with a drug that was known to have the potential to adversely affect eyesight. This made me very anxious, in fact it frightened me – books and reading were such an important part of my life. Anything that could make it difficult or impossible for me to read would change my life, and not in a positive way.
Fortunately I did not experience that side effect, however I began to be more aware that JRA could affect parts of the body other than the skeletal joints, things such as the nervous system and vision. I became more aware of stories about people like Helen Keller, who used alternate methods of communication because she had no other choice, no other way of reading and getting information. I also started to follow news about medical advances and technology that could improve the quality of life for people with disabilities. Still, I was fortunate, I did not need to use alternate format reading materials.
In college I completed a Bachelor's degree in English at the University of North Texas (UNT) in Denton, Texas. Then I was accepted as a student in what is now the Department of Library and Information Science in the College of Information at UNT – I had finally began to fulfill my dream of becoming a librarian. It was exciting to learn about the work of librarians in the Library of Congress's National Library Service for the Blind and Physically Handicapped (NLS/BPH), and about the efforts of the American Library Association's Association of Specialized and Cooperative Library Agencies, Libraries Serving Special Populations Section. I also learned about the worldwide efforts of librarians in the International Federation of Library Associations and Institutions (IFLA) and the IFLA Libraries Serving Persons with Print Disabilities Section.
Despite the efforts of many dedicated professionals, it was discouraging to know that only a very small percentage of books available to the general public were available in alternate formats for people with print disabilities. Further, there was often a great time lag between the time a book was available to the general public and the time when it was available in an accessible format. The mechanical complexities of transferring materials from print to alternate formats were cumbersome and presented another disincentive to publishers to increase the amount of accessible reading materials.
As a graduate student, I worked as an information specialist for what is now the College of Public Affairs at UNT. Since the college had departments in rehabilitation and gerontology, I became even more aware of assistive technology and its benefits. At the same time, computers were beginning to bring very positive changes to librarianship and to assistive technology. I also learned about the many individuals and groups that were developing assistive technology to benefit people with print disabilities. I hoped that eventually major advances in computing technology would bring changes which would greatly increase the availability of books and other materials in alternate formats for those who needed them. I also hoped that developments in assistive technology would make it easier for people with print disabilities to access library catalogs and databases. My awareness of the challenges and problems faced by people with a print disability who were pursuing advanced degrees in higher education continued to increase, but there was also greater hope that these difficulties would be overcome. During this period I had bilateral total hip and knee replacements and received almost complete relief from pain. My future mobility was ensured.
After completing my Ph.D. in Library and Information Science I worked for Independent Living Research Utilization (ILRU), at what is now The Institute for Rehabilitation and Research at Memorial Hermann in Houston, Texas. Later I worked with other advocacy groups. I continued to follow advances in communication such as the World Wide Web, and learned about ways to make content accessible by attending conferences with groups like Equal Access to Information (EASI) and the annual conference sponsored by the Center for Disabilities at California State University (CSUN) at Northridge.
I was thrilled when I first learned about DAISY, its international scope, and the work of the DAISY Consortium. Because of my background in library and information science, I understood the potential for DAISY – that it could end the lack of accessible reading materials, not just in the USA, but around the world. And, because DAISY was developed in the family of languages used on the World Wide Web, it could eventually increase the ease of producing many documents in alternate formats throughout many segments of society.
I wanted to learn as much as I could about DAISY and was introduced to the Accessing Higher Ground conference sponsored by the University of Colorado in Boulder, Colorado. I submitted a proposal on DAISY in 2008 and 2009 and was invited to speak. I accepted with enthusiasm.
NLS/BPH, Recording for the Blind & Dyslexic, and Bookshare have adopted and implemented DAISY. It's gratifying to see that DAISY does indeed have the potential to dramatically alter the availability of materials in alternate formats for people with print disabilities. Rapid advances are being made in DAISY technology and it is positively affecting the lives of people around the globe. I feel that my dream of seeing a technology make published documents and other informational materials available to those with print disabilities in a timely, cost effective manner, is at long last coming closer to becoming a reality. Barriers remain, but eventually, I believe that if the means and opportunity can be provided, it is possible for anyone with a print disability, anywhere, to benefit from DAISY!