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Workshop on Resource Sharing Services for Print Disabled Canadians

October 26-28, 2001 Workshop

The User's Perspective


Susan Vida
Vice-President External and Quebec Representative
National Educational Association of Disabled Students (NEADS)

Background

I recently attended the IFLA 2002 conference in Boston, and learned a lot about obstacles to library services and the difficulties of obtaining materials, whether for leisure or academic purposes. Due to lack of availability of resources and limited options for integration into the education system, I only read my first book at age of 17 - and by age of 26 was studying in a Master's program. Significant 'catch-up' had to take place in just nine years. In Quebec, you are only able to obtain equipment at CEGEP level of studies.

My concerns

The education system's lack of awareness of how to integrate students with visual disabilities; My interest is in ensuring that no one slips through the cracks

At the post-secondary level, resources are available but often quality is inadequate. The Quebec program provides for readers to prepare alternative format texts, but standards vary and material is incomplete… e.g. Voices vary greatly; page numbers are not mentioned, but needed for footnote citations; very difficult to work this way. I would like to have clean copies made available directly to users for scanning and creation of their own alternate format material. The lack of standards for readers of alternate format text is an obstacle … students need pages mentioned, subtitles, chapters announced for bibliographies.

Recommendations

I would like to see libraries and university service providers work together to develop standards, co-ordinate production to minimize duplication. University & public libraries could work together to create clearinghouse for e-text materials to identify existing resources for students so that they can obtain them when they need them. Time delays are crucial to students.

It would be wonderful if all public libraries had the technologies /reference materials available to visually impaired, rather than current reliance on specialized services such as CNIB or La Magnétothèque.

A good interlibrary loan system for accessible format materials in your language of choice should be a goal.

Irene Lambert
National Federation for the Blind; Advocates for Equality, Member of the Board of Directors

As a senior citizen and someone who has been legally blind since the age of ten with retinitis pigments, I have experienced all of the stages of vision loss and so I speak from my own experience and my observations from knowing many others with visual impairments throughout my life. I will omit any mention of student needs as there are several others here today who will be focusing on their particular difficulties.

My first observation is that the need for access to information does not diminish with graduation from being a student, it simply diversifies. You may not need as many books by such specific deadlines but over the years you will need an ever- growing variety of reading material and it must be current. Whether you have a professional career or are a homemaker, an employee or in business you will need to keep up to date with the latest information in your field. Undoubtedly, such subjects as marriage, relationships, parenting, money management, hobbies, and even career development will all require access to information. Let's not forget just reading for pleasure!

Considering that most people get this kind of information from their public library I decided to visit my library in Pointe Claire, where I go periodically but had not been for more than two years. The reference librarian was pleased to answer my questions and show me around the various departments. As a result of that visit I have made the following observations. Of the 14 categories of services outlined on their brochure I discovered that six to eight of them are useable by those of us with restricted sight. These range from large print books to audio books, CD's, cassettes, CD-ROM's or videos of music, literature, documentaries, learning skills, movies and even a category of educational toys. There is one catalogue computer kiosk equipped with a large print screen. There were twelve Braille books on the shelf for children. The one book that we pulled had been on the shelf since 1994 but had never been checked out even once. The librarian told me that none of the 6 computers for accessing the Internet had any adaptive equipment. They used to have a collection of talking books from the CNIB but believed that they had been returned as no one ever used them. She has never had a request to search for a book in alternate format. DVS movies were unheard of.

Reflecting on the information I gathered from my visit to the public library, I have several basic questions.

If most libraries, nowadays, already have about 50% of their services useable by visually impaired or blind persons, and are already carrying all but one or two of the formats visually impaired or blind or deaf/blind persons use, why are we not being included as members of society who are as entitled to the same public library services as any other segment of society? Or, except for students or the federal government, why are our needs still mostly being supplied by charity dollars from agencies for the blind?

Why aren't we, as print disabled persons, taking advantage of the materials that are available in formats we can use in the public libraries?

My conjecture is that many of us who have tried to use public libraries' services could only function independently as far as the front entrance. Even if the floor plan is familiar, nothing on the shelves or in the drawers are labeled in a manner that enables us to locate what we might like to find. These services that seemingly are useable are actually not accessible by any standard of independence. A volunteer who may be willing to assist you may not be comfortable doing so, and may or may not communicate effectively. More often than not, the item you are looking for is not available and the librarian in Quebec will tell you that only print books are available through inter library loan. It is so much less trouble to call the CNIB library or their Information Resource Centre to find out if what you want is available or may be acquired for you. I must say that the Internet, email and interlibrary loan of materials from libraries for the blind are greatly improved but there is still a considerable waiting time and the latest books are never available from the CNIB. It is my experience and observation that most blind persons have learned to accept what the CNIB has to offer and have given up on public library services except for the occasional audio book or music on CD. We have learned to fend for ourselves regarding such other needs as bills, advertisements, local newspapers, instructions of any kind, minutes of meetings, or handouts and so forth. Somehow we manage the best way we can.

Certainly, the advent of computer technology and the information highway has added immeasurably to our independence for accessing information, especially for those fortunate enough to be students or starting new jobs in a province where the government assists with the acquisition of equipment. Sometimes adaptive software is available for seniors or those who are unemployed, but only if they can afford to purchase their own computer system. The main difficulty for this particular group seems to be the inability to afford the cost of the upgrades and to find the proper training to go with it. Without the updates and training, our ability to progress is stunted. For those who cannot afford to purchase their own systems or software, the situation is doubly difficult. The public library provides the use of computers, access to the internet and even free email accounts for sighted users, but it is a rare library that has any of its computers equipped with adapted software for print disabled users. There is no ideal or uniform program from province to province, for acquiring either the hardware or the software so that all Canadians have equal opportunity to our technological access to information.

In conclusion I must say that all of my life I have "managed " to read most of the material I needed to read, but have had to close my eyes and overlook reading much more. In the past year I have discovered that I have a right to have information I need, by the Canadian Charter of Human Rights and by section 90 of the United Nations Charter of Rights. I believe we must be better informed about our rights. We must start using our public libraries more, so that they will recognize us as an inclusive part of the public they serve. Librarians will have to become familiar with our particular requests and we will require the same access to information at the same time as every one else.

Joby Fleming
Council on Access to Information for Print Disabled Canadians and President of NEADS

Background

My typical role is that of an advocate, fighting on policy and issues. It is a pleasure to talk to you as a user; this is the how it is at the Council table. We come to it as representatives of our respective organizations, but with an individual perspective … that is what makes the council work and why the agenda is moving so quickly.

Participants should consider a quote from a speech by Richard Lavoie, a powerful motivational speaker on learning disability issues; "Fairness is where everyone gets what they need. Equality is where everyone gets the same thing." We often hear " if we give you what you need, that is not fair to everyone'". We are talking about equality, not fairness. This is something that needs to be stressed to decision makers.

Remember also that not every idea has to be costly to carry out…the Council has taken on some tasks that will be accomplished more with awareness, attitude, creativity and strategic planning than with money.

Concerns

I am concerned over the barrier that changes in copyright legislation may present. We went public with our concerns at my university in Newfoundland. The copy centre was not willing to provide the specialized copies of texts that Print-Disabled students require , such as special spacing, enlarged text, creating scannable material, etc. Copy centre staff refused to provide these services out of fear of losing their jobs, due to their lack of knowledge. The university response was that it should not be a problem, because the law only applied to current material.. but who uses out of date material for university studies? These attitudes can be devastating. It is an example of how we need to look at changing small things as well as (Editor's note: clarification on copyright exceptions was provided later in the meeting )

I speak as a person with an invisible visual disability. People think: " well you are average and don't need any help with anything." It puts me in a position where I have to defend my rights, and it makes me very dependent on other people in the area of print disability. I am studying to become a primary elementary teacher and am currently facing the issue of how I am going to be able to read the books, and do such things as prepare curriculum guides. None of this material is available on tape or e-text, so it will mean my energy will have to go into struggling to read and comprehend the material, rather than finding creative ways to teach it. That is a very sad thing.

These are the kind of issues that users face, and I am talking here professionally. I don't want you to just see us as students, because we are only students for a certain amount of time, and do have to be seen as professionals . We do have to be seen, ( and in my case, very soon) as leaving the student issue behind. When it comes down to it, it is not just independence in a school environment or in a library setting, but independence in the world . We need to see it as independence in society as a whole, and if that is the attitude that we go out with, then we can change things together in a consistent way.

Summary of presentations, prepared by Leacy O'Callaghan-O'Brien