Blind Citizens Australia: the united voice of blind and vision impaired Australians. Our mission is to achieve equity and equality by our empowerment, by promoting positive community attitudes, and by striving for high quality and accessible services which meet our needs.

IN THIS ISSUE

• EDITORIAL
• FROM THE PRESIDENT
• EXECUTIVE OFFICER'S REPORT
• PARENTING AND BLINDNESS, FROM MY PERSPECTIVE
• WEBSITE FOR PARENTS WITH DISABILITIES
• A PROJECT FOR BLIND AND VISION IMPAIRED WOMEN IN NEW SOUTH WALES
• CHUC SUC KHEO
• VICE PRESIDENTS REPORTS
  • Karen Knight - Membership and Communication
  • Robert Altamore - Community Access
• ORGANISATIONAL MEMBERS' REPORT
• ADVOCACY REPORT
• BRAILLE SHOULD BE PROOFREAD
• ARTICLES FOR THE NEXT ISSUE OF BLIND CITIZENS NEWS
• TUNE IN AND KEEP UP TO DATE

Large Print ISSN 1321-0343
Audio ISSN 1321-036X
Braille ISSN 1321-0351

Welcome to this autumn edition of Blind Citizens News. We've received quite a few messages commenting favourably on the new, shorter name for this newsletter and it seems that the change has been an easy one. There's a lot of interesting reading in this issue, which demonstrates the many talents to be found among our membership. Fiona Woods, a member of the Council of Blind Citizens Australia for four years until June 1997, has written a thoughtful and moving piece about blind parenting. For me, the most notable themes in Fiona's article concern the questions around inherited blindness and how we feel about ourselves as blind people. I hope Fiona's article elicits a lot of responses, and I invite you to submit your thoughts for publication.

In July Professor Adrienne Asch from Wesley College in the United States will be visiting Australia as a keynote speaker at an international conference on women and universities. Professor Asch is, as far as I know, the only blind woman professor in the United States. She will be speaking on the topic of women with disabilities in the university environment. While in Australia she would like to make contact with as many people as possible: if you're interested in meeting her, or would like to know where she will be speaking, contact me on 02-9438-5675, or send a message to me via the Office.

I hope you enjoy reading this issue of Blind Citizens News. Please let me know what you think of it, and send your suggestions for articles in future issues.

The year 2000 promises to be an exciting year for all Australians and especially so for blind and vision impaired people. No-one can escape the fact that Australia and Sydney will be the focus for the 2000 Summer Olympics and there is some great work being done to ensure that we, as people with a disability, have good access to Olympic venues and information.

Through the Sydney Branch of Blind Citizens Australia Naomi Clark represents us on the Olympic Access Committee which has a role to ensure that access issues aren't passed over. Naomi is there to raise awareness of our needs as blind people, including the need for tactile ground surface indicators, lighting, contrasting colour and the need for information in alternative formats. Carol Ireland, Director of Rehabilitation Services at Royal Blind Society, is also on this committee. Lynne Davis, one of our Council members and editor of Blind Citizens News, represents the Disability Council of NSW on the committee. It is reassuring to know that blind and vision impaired people are well represented and that there is a real commitment from the New South Wales Government through the Olympic Coordination Authority, OCA, to make these games inclusive of all Australians including those with a disability.

Apart from the Olympic Games there are two other major events in the year 2000 which will impact on the lives of blind and vision impaired Australians. The first will be the Paralympic Games which follow the Summer Olympics from 18 to 29 October. These games include events for blind and vision impaired people and they will bring many blind people from around the world to our shores as competitors and spectators.

Blind Citizens Australia will work with blindness agencies and consumer organisations in New South Wales to host local events to make overseas visitors, both athletes and spectators, who are blind or vision impaired feel welcome.

The other event which will also bring us into contact with hundreds of blind and vision impaired people from around the world is the World Blind Union (WBU) 5th General Assembly. Blind Citizens Australia led a bid on behalf of the blind community and blindness agencies of Australia to host this Assembly, knowing that it would bring many benefits to the blindness sector in Australia. We were one of four countries to make an initial bid and a meeting of the WBU Officers in March accepted our proposal.

This Assembly will be held in Melbourne during the third week in November 2000, and it is expected to draw around 800 delegates, guides, observers and exhibitors. The Assembly, which is a five day event, is held every four years and it brings blind people together to discuss common issues of concern and to address unique problems which blind people face, particularly in developing countries. It is, logistically, a complex event to organise; however, I believe that Blind Citizens Australia in conjunction with key blindness agencies will do a great job. We now have the responsibility to organise a conference venue which is able to accommodate several hundred delegates, the majority of whom will be blind, up to fifty exhibitors of high tech and low tech equipment, interpreter services to provide simultaneous translation of all sessions in up to four languages and a number of associated events, such as a three day international conference for around three hundred blind and vision impaired women.

The Commonwealth and Victorian Governments have already indicated their strong support and willingness to work with Blind Citizens Australia to ensure that the 5th General Assembly is a resounding success. Blindness agencies including the Royal Victorian Institute for the Blind, Association for the Blind and Royal Blind Society of NSW have also pledged strong support. We look forward to working with them to ensure that the Assembly leaves a legacy for blind people in Australia for many years.

The success of the 5th General Assembly cannot be judged merely on the number of delegates it draws. Its success must be judged by the impact it has on the lives of blind people and the difference it makes to blind people both in developed and developing countries.

I look forward to Blind Citizens Australia and blind and vision impaired people in Australia using the Assembly to bring a community focus back on to blindness issues. We can use the power of the Assembly to highlight media and community awareness on the problems blind people face and how Governments and the general community can accommodate the needs of blind people.

I was privileged to attend the WBU 4th General Assembly held in Toronto in 1996 and it was tremendous to see the positive impact the Assembly had on the Canadian community. It certainly raised the level of awareness within the Canadian community of the needs of blind and vision impaired people. The challenge now is for Blind Citizens Australia, blindness agencies and the blind and vision impaired community to do the same in Australia.

Whilst these events might seem to be in the distant future it is sobering to know that there are only about 850 days until the 2000 Olympic Games. It is also sobering to know that even though we, as blind people, have a role to play in these events, and more particularly a major role to play in the running of the World Blind Union 5th General Assembly, we cannot put our regular activity aside. We must find a way to accommodate our role in these events at the same time as continuing our vital role in providing individual and group advocacy, peer support and information provision to our members and other blind and vision impaired people.

Administration Matters

During February we held a Council meeting. We now divide the meeting into two parts: Board of Directors meeting and National Policy & Development Council meeting. This reflects our wish to separate the function of governance from policy & development in the leadership of Blind Citizens Australia. The Board meeting takes a couple of hours and the Council meeting takes the rest of the two days we allocate.

We were saddened at the February meeting to hear that Doug McGinn has requested leave of absence from his duties and responsibilities as a Director due to ill-health. We hope that Doug is better soon and we look forward to him resuming his activities in July. In early March we also received the news that June Ashmore is resigning from the Executive and from Council. At a special Council meeting by telephone in April, Peter Johnson from Western Australia was elected Vice President in June's place. The casual vacancy on Council will not be filled until the Convention in October.

We were saddened to hear that June was leaving the Council because she is a great person to work with, a wonderfully strong and courageous leader, and a great friend to us all. June said that she wants to address some personal priorities and that she needs to spend more time with her family.

In advising the Executive of her decision, June said that her involvement with Blind Citizens Australia and her participation on the Council has been a very happy part of her life. She said that she highly valued the friendships she has made and that she looks forward to continuing as an active and committed member who will continue to enjoy the Convention and other activities.

Speaking of the Convention! It will be held in Melbourne this year. Following the change of financial year from March to June, we needed to change the date for our Convention. Of course we cannot simply change from June to September, because we respect religions even if this one is "football" and it would be finals time. This year's Convention will be held in Melbourne in the first week of October. It will start on Friday, October 2 and finish on Monday October 5. We have formed a Convention Planning Committee, which is busy making the arrangements -finding a suitable venue, developing a program theme and setting up the Convention highlights.

We are revising our corporate image. A first move was to adopt Blind Citizens Australia as our common usage name - no more NFBCA and no more National Federation of Blind Citizens of Australia. We remind all Branches and representatives of Blind Citizens Australia that this is the name to use. In due course it will be our formal business name. In the mean time, if we all use the name and become familiar with Blind Citizens Australia, we will soon wonder how we survived with the long name of yesterday.

We are working with Cato Design, one of Australia's leading corporate identity specialists, to ensure that our visual presentation matches the high quality of the content it promotes. As blind people we are good at writing lots of words, at developing policies and at promoting them, but we are not generally good at visual presentation. At the very least we must adopt best practice with respect to character size and font in print publications.

Disability Discrimination Act (DDA) Developments

We are writing to the Attorney General to seek the continuation of the DDA Standards Project. The Board has expressed interest in Blind Citizens Australia continuing to host the project on behalf of other consumer organisations of people with disabilities, and I have been asked to continue as the Project Convenor. We believe that Standards under the Disability Discrimination Act, although difficult and slow to achieve, are very important to protect the rights of people with disabilities and to clarify the responsibilities of employers and providers of goods and services to the general community.

There have been some further delays with the Transport Standard and now it is not expected until the end of the year. A new draft of the Employment Standards has been released and copies are available from the Human Rights and Equal Opportunity Commission in print and alternate formats. By the time you read this article the consultation period should have finished, but it is still worth getting a copy of the Draft Employment Standards and keeping it for reference. My thanks to Isabel Anton and Robert Altamore who prepared a strong and detailed submission from Blind Citizens Australia. We strongly affirmed the crucial importance of a DDA Employment Standard, whilst suggesting some essential amendments to the Draft Employment Standards under consideration.

Work is progressing on a Draft Education Standard. We expect that it will be available for public consultation around August-September. I believe that the Education Standard has a great deal of potential to incorporate some provisions which will make a strong positive difference to the opportunities, resources, support and equipment for students with vision impairment. It is important that we keep ourselves informed on this one and that we make strong submissions when the time comes.

As I write this article there are important developments concerning the Disability Discrimination Act. There is a Bill before the Senate to amend the DDA and there is a case before the Federal Court which involves one of our members.

Mrs Nerilie Humphries has a vision impairment and she was employed by the Department of Employment, Education, Training and Youth Affairs (DEETYA) as a clerical worker. She became dissatisfied with the way she was being treated by her employer with respect to her work tasks, the provision of special equipment (software to enlarge text on her computer screen) and her permanent appointment following a period of probation. Mrs Humphries eventually lodged a DDA Complaint with the Human Rights and Equal Opportunity Commission (HREOC). Blind Citizens Australia has provided advocacy support to Mrs Humphries.

At first HREOC declined to investigate her complaint arguing that Mrs Humphries should use the internal grievance procedure of the Commonwealth Public Service. Following strong representation from Blind Citizens Australia, acting as advocate on the instruction of Mrs Humphries, the President of HREOC overturned this decision and the Disability Discrimination Commissioner was required to investigate the complaint. It could not be conciliated and the matter went to Hearing before Commissioner Charlesworth last June. On December 19 she handed down her Decision, finding that DEETYA had unlawfully discriminated against Mrs Humphries.

On 20 January, DEETYA lodged an Appeal which must be heard in the Federal Court. The Appeal claims that the Commissioner erred in law in making her Decision. The Appeal is not about the merits of Mrs Humphries' Complaint. Nevertheless, Mrs Humphries was faced with the possibility of having to pay the Commonwealth's costs if the Appeal is successful. This is the concept of "costs follow the event". I have written to the Federal Minister for DEETYA, David Kemp, and to the Attorney General, Darryl Williams, asking that the Commonwealth will not seek costs in this case. I am pleased to report that the Minister has advised that Mrs Humphries will not be required to pay the Commonwealth's costs if the Appeal is upheld. The Appeal is set for hearing in the Federal Court in June.

Meanwhile there is a Bill before the Senate to amend the DDA. Among other things, this Bill removes the Hearing function from HREOC and directs that Hearings go straight to the Federal Court. The Bill provides that "costs follow the event". Unfortunately the Democrats have sided with the Government on this one. Even the former DDA Commissioner expressed sympathy for this view, in the belief that lawyers would be more likely to take cases up for people with disabilities on a no win no fee basis. It's not the Complainant's costs we're worried about, it's the respondents who hire expensive lawyers and brief expensive Counsel that concern us -the large corporations, insurance companies and government departments for whom money is comparatively no object - of secondary importance when protecting their capacity to discriminate against people with disabilities.

So this is why I place my faith in Standards. I believe that the complaints process is becoming more remote for individuals with disabilities. Lodging and sustaining complaints may be okay for "the lucky ones", but for the vast majority of people with disabilities the current changes and directions are a further blow - a watering down of the DDA which promised so much to uphold rights and enforce responsibilities.

Employment

The Federal Government is making other changes which will have a major impact on many people with disabilities. In particular, the arrangements for support for job seekers have been radically revised and everyone will soon have to pass through Centrelink for assessment. We have been very concerned that the assessment and streaming processes are highly inappropriate and inadequate for people who are blind or vision impaired. We are concerned that blind job seekers will not get the training and support they need from specialist service providers. More background is given by Robert Altamore in his article later in this edition of Blind Citizens News.

In early March we convened a National Employment Forum involving consumers and staff from blindness agencies. It was an important opportunity to bring key people together so that we could all be apprised of developments and so we could then develop a response to the Federal Government.

The Forum agreed to reject the new arrangements and condemned the Government's new Work Ability Tables as demeaning, inappropriate and misleading for blind and vision impaired people.

The Tables were designed for assessing inability to work of Disability Support Pension applicants. Now they are being used for assessment of training and support needs of job seekers with disabilities. We are concerned that the Tables will stream most blind people to services auspiced by DEETYA, whereas many blind and vision impaired people need to access services auspiced by the Department of Health & Family Services for specialist training and support.

The Federal Government has decided to phase-in the new streaming arrangements through Centrelink over the remainder of 1998. This followed complaints from peak disability organisations including Blind Citizens Australia that the proposed system was unworkable and that the Work Ability Tables are inappropriate. We hope that this will give us enough time to negotiate a sensible outcome with the Commonwealth Government, allowing it to reform its labour market programs and at the same time promoting employment training and support opportunities for people with disabilities rather than stifling them.

When I was growing up, I always assumed I would eventually have children. Whenever I mentioned this, my parents, especially my father, would say: "Well, you'll have to wait and see how you feel about that." Since I did not much like babies and fancied myself heading off to the Supreme Court to indulge in my favourite pastime of arguing, this lack of encouragement did not much concern me. It was out of character, however. Everything else I ever said I wanted to do, my parents wholeheartedly endorsed.

My parents' reservations were not due to my total blindness, but rather to the condition which caused it. When I was twenty months old I was diagnosed with Retinoblastoma, a childhood cancer which, if it travels from the eyes down the optic nerve can cause death. Two days later, both my eyes were enucleated (removed), the tumours being by then quite advanced and there being few other treatments commonly available at the time. The trauma of this event was compounded by the fact that my father had received similar treatment for the same condition when he was five months old. Having been assured that his blindness would not be passed on to his children, my parents had also to adjust to the sudden shocking news that the condition was hereditary.

My parents always emphasised that the doctors had given them incorrect advice. I found this assurance discomforting, since it appeared to imply that if they had known the facts, I would not have been born. I do not know whether or not this is the case, but my parents did decide they could not cope with any more blind family members. I was the second and last child.

My father and I rarely discussed Retinoblastoma. When he was diagnosed with cancer, he was devastated to learn that this was possibly a secondary manifestation of his childhood disease. He was proud of all my achievements and was present when I was admitted to the Supreme Court of Victoria as a solicitor and barrister, three months before he died. I don't think my father ever overcame his sense of guilt for my genetic inheritance. Paradoxically, his position as a totally blind parent put our family in a more powerful position than most families of children with disabilities in the 1970s. The prevailing philosophy was that the experts knew better than parents how to bring up blind children. My father, with my mother's support, was able to ensure that I attended a sighted kindergarten, that I did not board at the blind school (ten minutes drive from our home), that I went to the same school as my sighted sister and that I became proficient in Braille, including Braille music. This was all in the context of dire warnings that matrons and headmasters would not be held accountable for the consequences of my parents' reckless independence!

My father, Alan, was the first blind person to win a permanent fulltime position with the Victorian Education Department and was a music lecturer for many years in the tertiary sector. He was the organist at various churches and was frequently on committees of relevant community groups, such as the Girl Guides and the Blind school. In him I had as a role model a blind person taking an active and responsible role in society.

As a child, of course, I was not conscious of any of this. My mother was responsible for all childcare and household management. As the sighted partner in the marriage, and particularly as the only driver, she certainly took on additional responsibilities. I am sure, though, that the fact that my father was never expected to cook or clean was based on his gender, rather than his disability. Mum certainly never encouraged me to think that it should excuse me from any of the chores she doled out to my sister and I. Later I was grateful that she had taught me to cook, shop, iron and (to a lesser extent) sew. I understand that it is difficult for parents to allow their blind children to take risks, but I am always disappointed when I meet blind adults who have not been given these opportunities to experience truly independent living.

I grew up knowing that any of my children would have a 50% chance of being born with Retinoblastoma. Although of course statistically quite possible, I have always felt that I would have to be extremely lucky to have any number of children without at least one of them inheriting this gene. Naturally I discussed this with my husband, who felt that it was part of the package involved in choosing to marry me. I rarely mentioned this aspect of potential parenthood, either to friends or during pregnancy. In the same way that my parents did not like to squarely discuss it, it never seemed quite "nice" to expect other people to deal with this reality. It is perhaps surprising that I have also never discussed it with any of the blind people I know.

People who are losing sight are very interested in and willing to discuss their particular conditions, but to people who are already blind, what caused it seems hardly relevant. We all seem to assume that we are used to our lot in life and have plenty to do just getting on with it. I think it is important to confront the fact, however, that in any condition where blindness is potentially hereditary, women and men considering pregnancy are effectively choosing whether or not to bear a blind child. In cases like mine, it is not an easy burden to know that in choosing to have children, you may be causing them to have cancer, not many years down the track when they have had the chance to enjoy life, but as babies. You may see the decision to have children as an affirmation of the value and quality of your own life, but it is nonetheless a decision for which someone else (your child) may have to bear the consequences. Many people must grapple with this issue and struggle to make a decision they can live with. What you decide will depend on your own feelings of self worth, the barriers you feel society imposes on you and other blind people, and how important other people's judgments are to you. I decided to write this article because I wanted to focus some attention on this challenging aspect of being a blind parent.

There is not much focus on any aspect of being a blind parent. The National Women's Branch of Blind Citizens Australia published a booklet, called "Kids are Fun for Everyone, on this general topic in 1995. This is still available in Braille, large print and audio for fifteen dollars. The Nursing Mothers Association of Australia also sells an audio tape called "Breastfeeding Right from the Start". Both of these are invaluable resources for blind people wanting help with the practical aspects of parenting. Most issues in parenting involve individuals in making their own choices, whether they are blind or not. The most useful suggestion I can offer is that anyone with young children or expecting a baby seek out and befriend a few other blind people who share their approach to parenting. You will feel less likely to be judged and more likely to ask for practical suggestions when you confront challenges. For example, if you believe in giving your children plenty of space, you will not want to discuss ways of keeping track of them with someone whose solution is to contain the child in a playpen. For all parents, it is important to find positive friends who will support and encourage you in your parenting. This is particularly so when you are blind, as there are plenty of people, possibly including yourself and your relatives, who will impose impossible standards on you. All children sometimes get dirty, insist on going out in clothes that don't match or misbehave when their parents' attention is elsewhere. If you feel that the people you mix with are constantly attributing everything you or your children do to your blindness, you will find socialising unbearably stressful.

During each of my pregnancies, my mind has been largely occupied with the more obvious problems of being a blind mother: how will I change nappies, how will I entertain one child while breastfeeding another (reading Braille with one hand is difficult), and now, how will I walk anywhere with three little children? At my first antenatal visits, obstetricians have asked me if I wished to have genetic counselling. I have declined. I already know the odds, and I cannot change them. I would rather not have information about my foetus on the basis of which I would be forced to make impossible decisions. However, if I did have testing, it would be important for me to know how reliable the test was and the range of possible effects the condition could have on the baby's sight.

I knew that each baby's eyes would need to be checked reasonably soon after birth, but that was as far as I thought. I thought so little of it that I took my eldest daughter, Emily, to see the ophthalmologist by myself in a taxi. He made a cursory examination and recommended a further examination under anaesthetic when she was four months old. Then I focussed on how we would cope with an anaesthetic; how could she survive without a feed for four hours! Emily had four anaesthetics before she was two, after which she was always more alert than us. She will continue to have check-ups every six months until she is six. That is the latest the condition has shown up in a family setting. We have been lucky with Emily, but there is always some tension when we arrive for her appointments. She understands that it is important for her to accept the eye drops and that the doctor check to make sure her eyes are good, not broken like Mummy's. I hope she will grow up understanding about Retinoblastoma and blindness, but that she will continue to have no fear of it.

Our second daughter, Felicity, has not been so lucky. We were told at her first cursory examination, at three weeks, that she had Retinoblastoma. We were both as prepared as we could be for such news, but we were not prepared for the medical maelstrom into which it plunged us. We had both thought about the implications of having a blind child. We thought we would cope relatively well with this, as I would have valuable skills to impart. We had not thought about the treatment options which are currently available and the many impossible choices we would be called upon to make. Within a week, we were waiting at appointments for paediatric oncologists and trying to process information about central venous lines, chemotherapy, radiotherapy and lasers.

Because Felicity's tumours were detected early and because of their size and location, we were informed that the best treatment for her would be a course of chemotherapy to shrink and sensitise the tumours, followed by laser surgery to kill them. I was strongly advised that enucleation was not a necessary consideration at this early stage. I have since learned that it seldom is, as in a sense it is a capitulation for an ophthalmologist to effectively blind his patient. I am not saying that I would have wanted Felicity to be blind, but for me it certainly was not the worst possible outcome. The details of the risks involved in treatment are complicated and tedious, even for us. The Retinoblastoma carries with it a risk of developing secondary cancers. Chemotherapy can also cause subsequent cancers, infertility and deafness, although not, we were assured, with the chemicals and dosages to which Felicity would be exposed. Radiotherapy on infants can retard bone development and have other effects on the brain. It also increases the risk of secondary cancers, particularly if added to chemotherapy. People who are faced with imminent death will probably overlook these risks in the hope of prolonging life. Our quandary was that we had to weigh these risks plus an indeterminate degree of vision, against total blindness. We could avoid all but the hereditary risk by having both eyes removed, although there was the chance that at least one eye could have quite good sight. Alternately, we could gamble on retaining some sight, accept all the risks and still end up losing both eyes if the treatment did not work. Obviously it was crucial to know how much sight we could realistically expect Felicity to have if all went according to plan. I wanted to know if she would be able to drive a car or to read normal print, or even large print. Ophthalmologists are not keen to give estimations of potential vision. There are children who, having already lost one eye, have undergone all these procedures and seem likely to have very limited vision when all tumours and scarring are taken into account. Their parents may consider that any risk is worth just a little sight. They are fully entitled to make their own decision, but all too often parents are not given meaningful information about what they might expect their children to be able to see at the end of it all.

We agreed to the chemotherapy and laser treatment, but for a limited period. At around six weeks, Felicity had a central venous line (flexible tubing) inserted into her neck. All her drugs were administered through this, so that she did not have to suffer injections. I spent several days in hospital with her. After that, every month we were outpatients for three consecutive days. At the time I told few people about all this. I explained to those who expected me to do things that they probably would not be done, I told friends whose help I was likely to need, and I told the important details to closest family members. I felt that in not talking about it freely I might lead others to think I was ashamed of what was happening to Felicity. It was rather that I felt my first obligation was to myself and my family and that only once I had come to terms with what was happening could I deal with other people's shock, sympathy and questions. I used counselling services which were offered to me, as I felt it was vital to deal with my sense of guilt early rather than have it affect my ongoing relationships with my children.

I found my time as the blind parent of a sick child extremely stressful. The ophthalmologist was not at ease with me, because we had different value systems. The oncologists had a more flexible approach. I was keen to portray myself as a competent, caring parent, whose life was still worthwhile, even without sight. This was difficult since the hospital was extremely spread-out, had few distinctive landmarks and most people were preoccupied with their own concerns and anyway usually did not know where it was you wanted to go. Orientation to the hospital did not rank with my other priorities of keeping appointments, waiting indefinite periods and getting home to Emily. It was also difficult to get around with a baby attached to a drip stand bearing hazardous chemicals. Even to go to the toilet or get a cup of coffee I needed help, since there was no-one to watch the baby and there were people and trolleys all over the corridors.

I also found relationships with other parents extremely tense. As a rule, few people spoke to each other, although we spent whole days sitting around our children's beds in more or less total boredom. If parents did speak, their questions were usually: "What's wrong with your baby? When was it diagnosed? How did you find out about it?" My answer to the third question usually stumped them. I don't think they knew how to deal with someone who had apparently willingly sentenced their child to the cancer ward. We found communication easier with the other parents of Retinoblastoma children. I often felt uncomfortable, being totally blind while we all suffered incredible hardships to save some degree of our children's sight. I hope, though, that since one day their own children will have to make decisions about becoming parents, seeing me with my two girls might leave some positive impression.

I would not describe myself as fiercely independent, but I have always liked to do things my own way. Some of this I also had to jettison in Felicity's interests. Chemotherapy destroys fast growing cells; these include cancer cells but can also include hair, saliva and antibodies. Because of her lowered immunity, it was not advisable to use public transport. I was obliged to rely on friends to transport us to and from the hospital, usually at ill-defined times. I gave up going to most meetings, to reduce her exposure to infection. I was also reduced to asking for help with nappy changing, as when waste products include the chemotherapy wastes gloves are supposed to be worn. I was particularly concerned that the hospital staff should think I was capable of caring for my baby myself. I reacted angrily when they informed me that I would have to wait for Peter to get home before I could bathe Felicity and dress her central line. The nurse patiently explained that this was such an intricate, no-touch procedure, that no-one could perform it on a baby unassisted. Taking Felicity's temperature was also crucial, as if it rose above a certain point, it meant she might have a life threatening infection and we must go immediately to Emergency. I bought an expensive talking thermometer, which I found unreliable and slow, so again I was occasionally forced to ask for help from a neighbour. Felicity needed various antibiotics, and precision in dosage is important for babies. I tried various methods of marking syringes etc, but ultimately found it least stressful to remind Peter to draw up the doses at five thirty each morning before he left for work. Then I only had to worry about getting it into Felicity's mouth!

I find it hard to believe now that all this happened to our family. Felicity is an extremely happy and affectionate toddler. She has benefited from Early Intervention services, to ensure that her development was not unduly delayed by her medical condition and that she makes maximum use of her vision. She has so far had an excellent outcome from all her treatment. She has only peripheral vision in her left eye, but fairly normal vision in her right. Occasionally people comment that she has a turn in her left eye, which I am afraid I find annoying. After all she has been through, if she is left with a slight cosmetic defect, I am not going to lose sleep over it. She uses the vision she has well and would not be considered vision impaired. She should even be able to drive a car! She still has examinations under anaesthetic every three months, which we dread because she hates all medical procedures, including being weighed and having her temperature taken! There have been occasional small tumours which have been treated locally. The older she grows, the less probability there is of new tumours and the more likely it is that they would be peripheral and so would cost her less vision. Of course as the tumours were not excised, oncologists will not say there is no danger so we must be vigilant for many years to come.

Emily knows that Felicity's eyes did not work as well as they should and that she needed to have very special medicine. Felicity as yet understands nothing of this, except that doctors and nurses are to be mistrusted. We will explain her condition to her as she grows and asks about it. I hope she will understand that we have made the best decisions we could at the time. Later she will have to make hard decisions of her own.

Some people expressed surprise when we told them we are expecting our third baby in July. I have already made its first appointment with our ophthalmologist. I am not sure how many times I could go through what we have experienced with Felicity, but I am constantly reminded of how rich my life has become since I chose to be a blind parent.

One of our readers has brought to our attention a Website and mailing list for parents with disabilities. The list owners welcome any interested parties, including parents with disabilities, non-disabled partners of disabled parents, and anyone else who is interested.

The list is run by Trish and John Day, who have a Web page where more information about the list is available at http://ourworld.compuserve.com/homepages/Trish and John

Late last year the Sydney branch of Blind Citizens Australia, with support from the RP Society of NSW and the Association of Blind Citizens of NSW, was awarded a grant by the NSW Department For Women for a community development project for blind and vision impaired women.

Most community organisations operate in a way which does not make the necessary accommodations (eg. provision of information in accessible formats, access arrangements, orientation and mobility considerations) for blind people to participate on equal terms with other community members. Opportunities for blind people to develop the necessary skills and confidence to advocate for themselves and to participate in mainstream community activities are limited, and it has been noted by the World Blind Union that blind women have been particularly marginalised in public activity.

Blindness is a low incidence disability, with the result that the needs of blind people are often overlooked when community facilities are planned (this is especially true in relation to provision of information and definitions of "accessible facilities"). On the local level, there is seldom the requisite "critical mass" to warrant special provision of training and resource development, hence there is a need to bring groups of blind women together for community development activities, and then to provide support for them when they return to their local communities and put their newly-acquired skills into practice in their local environment. This is community development, based on a model which takes account of the special needs and circumstances of blind people.

A committee was formed to organise the project, many meetings were held, applications were invited, and in February this year fifteen blind and vision impaired women, assorted dog guides, committee members and presenters met for a four-day workshop in Sydney. We asked two of the women participating in the project to write about it from their perspective's.

Beth Hayes

A workshop specifically for women with vision impairment! A workshop for blind and vision impaired women from communities around NSW, focussed on skills, information and activities which will enhance their ability to become involved in community organisations and advocacy, both in their local communities and, if they choose, in broader state, national and international contexts. I could not believe my ears! This was wonderful! This was something to dream about. I have been to many workshops on different subjects, but always as the difficult minority of one who wanted to sit where I could tape the speakers, needed to have the overheads explained, have handouts that were printed clearly enough to scan or, horror of horrors, wanted the offered further information on audio tape or floppy disk. Now I would be able to meet and talk with other women who had similar problems. Women who were as frustrated as I about the lack of information in alternate formats. Women with vision impairment, who are competently making a life for themselves, caring for families, holding down jobs, tackling tertiary education, and doing all those ordinary everyday things that every woman does. Women who had worked out strategies for handling the little irritations in life. Yes! This workshop would be different.

And it was! Twenty women with vision impairment and six guide dogs. Lifestyles, occupations, age and personalities differed greatly. There were women in their early twenties and women in their middle sixties, but age difference made no difference. They came from inner Sydney and outer suburbs, large country towns and small rural communities. There were university students, a university lecturer, a religious sister, farmers, housewives, office workers, administrators, some who worked in the community and some who had not yet realised all the possibilities available to them. But, we all had something we could learn from each other. It was a mutual help society. Those who could, helped those who could not, and it was all overseen by the marvellous Marion who was here, there and everywhere and knew everything. Through it all guide dogs swaggered, trotted gaily or walked smartly (depending on their personalities) along the halls from bedroom to dining room to seminar room, dodging the long canes, adapting to the new environment and mostly enjoying the experience. Wendra, my own little guide of the inquisitive mind, took me on a tour of another wing of the building one day when she was in explorer mode. Luckily she is very good at retracing our steps and, when sprung, heaved a sigh, did a u turn and took me back to our intended destination.

For the four days we wandered the hallowed halls of Sancta Sophia College at Sydney University the building was awash with thoughts, ideas, skills being passed on and women learning from others. Between the formal sessions groups formed and dispersed and reformed, mingling, talking, comparing notes on everything from conducting meetings to how to raise children, and education -where to seek it, how best to follow classes, study, what help is available where. Problems with guide dogs were discussed and solved. Important information such as how to tell which side of the milk carton to open was passed to those of us who had not yet discovered this skill. Women contemplating tertiary education picked the brains of those who had attempted this and found answers to some of the problems of studying in an environment set up for sighted people.

It was sometimes difficult to break up these gatherings to attend the structured formal sessions. The morning information sessions, with speakers from various organisations who spoke about agencies that are out there to help and advocate for women with vision impairment, were most useful. Talks by the participants about the communities in which they live and work were very interesting indeed. Sessions were held on public speaking, participating In community organisations, mentoring, advocacy, conflict management, personal safety, using the media to advantage. At last there was material on tape. But sadly the sighted presenters, even though they had been warned that their audience would be vision impaired still expected to use whiteboards and printed handouts.

It was obvious that some of these sighted presenters had not given much thought to the different needs of a vision impaired audience and floundered a little when they realised that their usual presentation techniques would not quite work. Most of them recovered somewhat and attempted to adapt as they went on. Some were better at this than others and the listening skills of their audience meant that much useful information was gathered by the participants, sometimes in spite of the presenter. For example during the conflict management session strategies for handling various specific situations were sorted out from the tangle of information presented. However, The personal safety presenter who kept saying "I know you can't see what I am doing but ...", and then went ahead and did whatever it was we could not see anyway, was a little frustrating. But she still passed on much useful information. She must have done, because when we paired up to try out one of her suggestions my partner took me completely by surprise and I landed flat on my back. There is one young woman who does not have to worry about being accosted! How to make use of the media was quite useful even though once again there were pages and pages of print material. The session on advocacy was very interesting and the offer of advocacy training something I had been looking for some time.

To help us relax and face the next day with a clear mind and an eager heart we tried Relaxacise, Feldenkrais exercises, Contact Dancing and Aquafitness. Some of the activities I got up to during these relaxation sessions were not to Wendra"s liking. She worried about me lying on the floor during exercises and dashed to my assistance whenever she thought I needed help.

The formal dinner on Monday night was a very successful function, with the Hon Fay Lo Po MP as guest of honour. A very fitting guest, as she holds the portfolios for Women's Affairs and Disabilities. Other guests were shared around the tables and her policy officer for Women's Affairs was the guest at our table. Although, regretfully, I simply cannot remember her name I do remember her as a very pleasant, informative, interesting and interested person who helped to make the evening most enjoyable.

Our accommodation during the workshop was a pleasant room facing the quadrangle and the meals were definitely better than the usual institutional cooking. In fact when I described the meals to a friend who had lived at Sancta Sophia twenty years ago she had trouble containing her disbelief.

All in all it was a very enjoyable, informative and interesting if exhausting four days and the committee, Lynne, Barbara, Trish, Marie and Fiona who organised the venue, the speakers, participants and then pulled the whole thing together deserve a huge vote of thanks. This was a great experience that I would not have missed for the world. Yes, it had its problems but they were minute when compared with the experiences, knowledge and memories that I took with me when I reluctantly left Sancta Sophia College on Tuesday afternoon.

Jessica Richards

My name is Jessie Richards. I'm 21 and have been vision impaired since birth. I'm currently in my last year of a Social Science degree at the University of New England in Armidale. I run a sort of get together group for vision impaired people and spend time advocating for disabled access issues in my town. I was one of the youngest people who attended the women's workshop in February, indeed because of my age I didn't seriously expect that I would be considered for a place and I was very excited when the caravan park where I camped in the summer received an emergency telephone message for me indicating that if I rang a certain number quickly air transport to somewhere could be arranged. I've got rather a quirky habit of brushing my teeth before important telephone calls. This time I brushed my teeth very carefully, removed some of the beach from my hair and ears and rang Barbara to find that I'd been given a place in the women's workshop. Needless to say I was extremely excited by the news.

The reason why I applied to participate in the workshop was that I was finding the task of leading our support group and trying to find activities to suit people with wide ranges of abilities, most of whom had much more age, wisdom, and experience than I, rather daunting. When Lynne asked me to write this article she asked how the workshop met up with my expectations ... I think she was hoping for a slightly more positive answer than the one I'm going to give.

I still have absolutely no idea what to do with a support group in a small town where people of widely differing ages and interests and only one unifying problem need to find some sort of support in each other's company. But I also know that other people from other places and with more experience have similar trouble. I don't find it encouraging but I left the workshop smiling and feeling more confident. One of the most important aspects of the workshop was meeting other people who seemed to have the same problems and some different solutions and having enough time in a secure enough environment to really get a lot of talking done. In order to prove that neither vision impaired people nor women should be given second class treatment few expenses were spared in choosing a beautiful venue for the workshop. Sancta Sophia College, at Sydney University, was peaceful with comfortable rooms and a beautiful courtyard garden. It was easy to get around and I felt comfortable enough to really express my self without that terrible fear of non comprehension I experience when expressing my frustration's to sighted people. Between the sessions we discussed everything from serious issues relating to our advocacy and access committee frustration's to the problems associated with eating and foraging in strange environments and clothes shopping, which is one of my favourite annoyances. Of course there were numerous dog conversations and even more chances for the labs to show just how well trained their owners were.

I found the workshops themselves rather fascinating. The practically oriented workshops on things like public speaking, using the media, and conflict resolution helped me name and think about and consolidate skills that I probably already have and provided me with new ideas on how to use them. But I think one of the most important roles of the workshops was in disseminating information about the different advocacy groups available to vision impaired people and of their specific areas of expertise. I think this knowledge is the most important thing that I can take back to my community. Since few people are fully aware of all the roles that Blind Citizens Australia has, and even fewer know what the Disability Discrimination Legal Centre or the Disability Council of NSW do, I've been attempting to slowly pass on this information to our support group. Luckily the membership hasn't diminished since I started. I'm hoping that greater awareness of these groups amongst disabled people in country areas will help people know who to turn to when really serious problems do arise and perhaps more importantly help them to feel less vulnerable. Knowing that there are structures in place to protect people's rights tends to give them the freedom to fight more vigorously.

On a much more personal note I am extremely thankful for the workshops since they provided me with a large number of good role models. I come from a town where only one of the large number of vision impaired people I know has a job and have felt very depressed about my own prospects. Meeting and remaining in contact with a large number of blind women who seem successful in that aspect of their lives has given me a huge boost. I really need to thank everyone who organised the workshops, as well as everyone who presented things there and my fellow participants for making them a really practical and memorable event. Thanks!

Postscript:

Since the workshop in February the participants have been meeting regularly by teleconference. A very strong peer support network has been formed, and much information continues to be exchanged. Many of the participants have used their newly developed media skills to get coverage in their local press. Some have addressed community organisations about the workshop and about issues affecting blind and vision impaired people in their communities, and most have registered with the Department For Women as available for public speaking. Advocacy training has been arranged in a couple of areas, politicians have been lobbied, and at least one new support group started. In fact, the project has met all our expectations and exceeded them many times over.

At the conclusion of the project in September we will be producing a report. If you would be interested in obtaining a copy please contact Lynne Davis on 02-9438-5675.

In the January issue of Blind Citizens News I mentioned that a highlight for me in 1997 was a visit to Vietnam. It was a tremendous experience and I thought that you might like to hear a bit more about the visit and in particular about the Braille Literacy project which Blind Citizens Australia auspices.

I had better explain up front what chuc suc kheo, pronounced chooks akway, is. It isn't a secret incantation you mutter when throwing a white leghorn over a cliff but rather the Vietnamese version of "cheers". It is this phrase which is used when toasting friends, clinking glasses and welcoming honoured guests. I can assure you that by the time I left Vietnam I had heard and used the term on many occasions.

I travelled to Vietnam in the company of June Ashmore. this was June's second visit and I felt reassured because she had paved the way through friendships she developed on her previous trip. We flew Vietnam Airlines from Sydney to Saigon airport at Ho Chi Minh City. A flight taking about nine hours. Flying Vietnam Airlines was a great way to begin as all of the cabin crew were Vietnamese and the food mildly Asian. We went through customs at a very steamy Saigon airport before boarding another two-hour flight up to Hanoi.

Vietnam is of course in the Northern hemisphere and December is getting into the winter season. Saigon airport, being in the south of Vietnam, is about two thousand kilometres closer to the equator than Hanoi so it has seasons very much like Darwin. Hanoi on the other hand was very much like early autumn in the southern areas of Australia. Even though it was winter the temperature most days was in the high teens or low twenties.

We landed in Hanoi in the early evening and after a slightly nervous half hour, where June and I were stood to one side of the arrival terminal and asked to "wait", we were ushered through to meet Miss Le Van Son and Mr Thanh. Miss Son is our contact within PACCOM, the People's Aid Coordinating Committee, and Mr Thanh is the Vietnam Blind Association's driver. PACCOM oversees any international aid work being undertaken in Vietnam and it is clear that it has a very high regard for the Braille Literacy project supported by Blind Citizens Australia.

Miss Son and Mr Thanh took us to our hotel in Hanoi where we met up with Bill Jolley who had travelled to Vietnam three days earlier. Unfortunately we were a bit late to join in the first round of chuc suc kheo for the welcoming ceremony for delegates attending the World Blind Union East Asia Pacific Regional Executive meeting. This meeting was one of the three main reasons for our visit to Vietnam. The main one of course was to see how our Braille Literacy project was progressing, and the other was to attend the official opening of a new training centre for Vietnam blind Association (VBA) in Hanoi.

The WBU regional Executive meeting was held over the first two days with delegates and observers from Australia, Philippines, China, Hong Kong, South Korea, Japan and Vietnam in attendance. As part of this meeting Bill Jolley had arranged for the Australian Embassy in Hanoi to host a dinner for the meeting participants. This was another chuc suc kheo occasion where we were hosted by the Australian Deputy Ambassador and other Embassy staff. We had good Aussie style food and great Western Australian wine. It was a highlight for delegates from other countries, who enjoyed the Embassy hospitality and having a tiny taste of Australia.

The Australian Embassy in Hanoi is a relatively new complex with the Ambassador's residence and accommodation for other staff on the one compound. The Embassy has many Australian features including lawns and swimming pool, which are not very common in Hanoi, and an entrance with good old Australian corrugated iron.

The third day was a sight seeing day for all delegates to the WBU Regional Executive meeting; however, Bill, June and I missed out on the visit to Ho Chi Minh's mausoleum and other sites around Hanoi, as we had project meetings with AusAID, VBA and the Norwegian Association of the Blind and Partially Sighted.

The opening of the new training centre for VBA took place on the morning of the fourth day. It was a huge affair with entertainment provided by blind students of VBA. There were official speeches from Government Ministers; Mr Thuyen, President of VBA; and Arne Husveg, International Director of the Norwegian Association of the Blind and Partially Sighted (NABP). It was through sponsorship and project management by NABP that the new training centre was built.

The opening received good coverage in Hanoi media including radio, television and daily papers. Of course the official opening was followed by more good food and chuc suc kheo.

After the opening June, Bill and I set out for Thanh Hoa, a province south east of Hanoi. We were accompanied by Miss Son from PACCOM, Miss Phuong, who is the representative of Blind Citizens Australia in Vietnam, Mr Noan from the Education and Training Department of VBA, and Constance Lee - a blind massage and acupuncture specialist from Singapore who was attending the WBU Regional Executive meeting.

The trip was only about one hundred and thirty kilometres into the country but because of the heavy traffic and road conditions it took around four hours. We stopped only once along the way to have a rest break at a small roadside tea house. These are usually small covered areas built on the front of a house and only about three metres (ten feet) off the main road. It is quite an experience sitting there, close to the road with trucks, tractors, cars and thousands of motor bikes honking their way past while you try to relax and have Vietnamese tea and cake.

We were welcomed to Thanh Hoa by representatives of the Provincial People's Committee and the Thanh Hoa Blind Association (the provincial branch of VBA). After getting settled into the hotel which had formerly been the People's Committee guest house we were hosted for another chuc suc kheo dinner by the People's Committee and VBA Branch. The meal was fabulous and we were told that it was good old fashioned country style cooking. June and Bill, who are much more adept than me, ate most of their meals with chopsticks but I found them a little difficult - especially when it came to eating chicken noodle soup with chilly which is the main Vietnamese breakfast dish.

On the morning of the fifth day we had three official engagements. The first was a meeting with the Thanh Hoa Branch of VBA to hear their proposal for the running of braille literacy classes in Thanh Hoa province and to discuss a budget and time frame. The second was an official meeting with the Vice-Chairman of the People's Committee. The third was a visit to the Branch's workshop and training centre where we sat in on massage classes, and looked at broom and toothpick manufacture.

After another lunch to bid us farewell, hosted again by the People's Committee and VBA Branch, again with lots of chuc suc kheo, we set out for another four hour bus ride to Hanoi. The visit to Thanh Hoa was most positive and it is easy to see the respect that VBA have for Blind Citizens Australia because of our project and the way in which Bill and June, in particular, have overseen its management. Through Bill and June we have built up strong relationships with VBA Central and Branches as well as with many of the local People's Committees. These are influential and most important committees with whom to foster good relationships because it is often through these that the teachers coming out of the Braille Literacy classes are employed back at the district level.

On the morning of the sixth day we made a final visit to VBA in Hanoi to have a wrap-up meeting with the President, Mr Thuyen, before another lunch - more chuc suc kheo - and a ride out to the Hanoi airport. June and I returned to Sydney. Bill went on to make Braille Literacy management and related visits in Da Nang, Quang Nam and Ho Chi Minh City before returning to Melbourne four days later.

With the launching of the Braille Literacy Training Course in Thanh Hoa we have now supported courses in five provinces. The first two in Thai Binh and Long An through initial funding from AusAID in 1994/-95, and more recently in Ha Tay just north of Hanoi, Quang Nam in central Vietnam, and Thanh Hoa south east of Hanoi. The project is fully funded by AusAID with ACROD and Blind Citizens Australia providing management and planning expertise.

The classes in each province are usually for around twenty women students with many of them being blind. They are live-in courses with students usually going home from time to time for weekends. The classes can run for up to nine months with the graduating teachers going back to their local districts to teach braille to blind adults and children. There is an estimated half a million blind people in Vietnam. I firmly believe that the project which Blind Citizens Australia runs is having a huge impact on the lives of thousands of blind people and that as a developed country we should continue to help where we can.

I am pleased to have had the opportunity to see first hand how our project is going in Vietnam and just what sort of impact it is having. The visit reinforced my belief that we have much to offer and much to learn from being involved with blindness organisations and blindness related projects at an international level.

Recently, I have had a number of questions from members about the progress of a national identity card for blind and vision impaired people. A resolution at the 1996 Convention called for the development of a national identity card because blind and vision impaired people experience difficulty when asked to produce some photographic identification for purposes of accessing goods and services or for business transactions such as opening a bank account, where the accumulation of 100 points of identification is necessary.

There is a small working party within Blind Citizens Australia which continues to look at this matter. This working party comprises Bill Jolley, Michael Simpson, Robert Altamore, Peter Johnson and myself. Initially, Mary Ward was engaged as a consultant to carry out some preliminary investigations. The original idea was that the identity card should have the same status as a driver's licence. We were advised, however, by the Attorney-General's Department, that this was not possible. Since it would not be issued by a government authority, the identity card could only carry the value of 25 points. This means that the card can still be used to access goods and services, but it will carry fewer points than a driver's licence when opening a bank account. The working party considered that it was still important to move forward with the project.

The details of what information will be contained on the card have been discussed, but not finalised. The logistics of producing the card are now being considered. Costing for the equipment is now being sought and our next step will be to identify ways of accessing necessary funding for the purchase of this equipment.

The identity card continues to be a Council priority and in future editions of Blind Citizens News I will keep you informed of our progress.

Employment Services

In December last year, a discussion paper by the Department of Health and Family Services (DHFS) on employment services for people with disabilities was released. This Discussion Paper outlines how Centrelink will function as the "gatekeeper" through which people with disabilities will access employment services, and seeks community comment on issues such as: assessment and classification, referral, arrangements, rights and responsibilities and complaints procedures.

Under the proposed reforms, a person who wants to access employment services will have to go first to Centrelink. Centrelink will be the gateway through which the person enters the service provision process and is assessed, classified and referred to the appropriate service. The tools used by Centrelink to assess, classify and refer people to services are the Job Seeker Classification Instrument (JSCI) and the Work Ability Tables (WATs). The JCSI is administered to all people who apply to Centrelink for services and measures a person's labour market disadvantages such as geographic location, language or disability. The JCSI determines the level of funding which an employment service will get for the person.

If a person answers "yes" to the disability question in the JCSI, this triggers the requirement for Centrelink staff to assess him or her against the WATs. The WATs were originally devised to assess a person's eligibility for the Disability Support Pension. It is proposed that they now be used to stream people with disabilities into various services. The alternatives are either DHFS funded services or one of the three levels of flex services funded by the Department of Employment, Education, Training and Youth Affairs (DEETYA). The specialist employment services which we, as blind and vision impaired people, access through blindness agencies are the DHFS services.

The WATs measure the impact of a person's disability on their ability to work. The WATs are designed on the premise that there are a number of core abilities which affect our ability to handle most types of jobs. The application to blind and vision impaired people of these WATs is a major concern to Blind Citizens Australia and to blindness agencies.

First, eligibility for the specialist disability DHFS funded employment services, which are most relevant to blind and vision impaired people, will be determined by a person's WAT score. At the time of writing, I do not know the score which will admit a person to DHFS services but it is envisaged that DHFS services will be for persons with higher WAT scores. We also do not know the relative weighting between the nine questions in the WATs or the scores within each question. Bill Jolley has tried to find out from DHFS, so-far without success - either the Department does not know or the information is being withheld from people with disabilities.

It is clear from the content of the WAT tables that the criteria they measure are criteria which are either inappropriate to a blind or vision impaired person, or if appropriate are matters on which a blind or vision impaired person would register a low score. The WAT tables do not deal with the key disability related employment issues for people who are blind or vision impaired, namely: access to information, access to adaptive equipment or low vision training, access to training and support in times of workplace changes.

The result of all this is that, in the absence of changes in the manner in which the WAT tables are applied to blind and vision impaired people, we will be inappropriately streamed away from the specialist blindness support services which are geared to meet our needs and into DEETYA services which lack the skills required to assist a blind or vision impaired person in the quest for work. Under the proposed reforms, as they affect blind and vision impaired people, Centrelink will not be a "gatekeeper" but rather will serve as a "Berlin wall" obstructing our path to employment services and real jobs.

There are other issues arising from the WAT tables. The tables are worded in such a way as to portray negative images of and rely on negative stereotypes about people with disabilities. They focus on the obstacles to their employment rather than on the potential to overcome employment barriers by support services, training and appropriate adjustment. There is the whole issue of the appropriateness of using a tool designed to assess disability for the purposes of pension entitlement for the very different job of directing people with disabilities to appropriate employment services. I like Ivan Peterson's analogy of using an "angle grinder to mix concrete".

These issues, and more, were brought sharply into focus at a seminar titled "Real Jobs for Real People" conducted by Blind Citizens Australia in early March this year. I attended the seminar and was able to join with the key agency personnel involved in employment services from around Australia in examining the proposed reforms, questioning Centrelink and DHFS representatives, and developing a response from the blindness sector. This is an issue on which we must work closely with service providers, and our contribution has been strong in its leadership and input.

Work is proceeding in other areas of the Community Access portfolio. Our working groups on education, transport and access and information services are meeting and I will report more fully on them in the next issue of Blind Citizens News.

In the meantime if you have any questions on employment, education, transport, access or information services I would be pleased to hear from you. My telephone number is 02-6282-2805.

Since our last Blind Citizens News in January there have been quite a number of issues raised with me through my regular contact with Organisational Members. Some of the issues raised during this time have included:

• Review of Disability Support Pension (Blind)
  
• Transport and Pedestrian Safety
  
• Public Transport, including automated ticketing
  
• Two for one air fares with Qantas
  
• Shopping centre accessibility
  
• Continued reduction of visiting teachers

The action taken with respect to these issues has varied. They have all been thoroughly worked through with the organisation raising the issue and referred to the appropriate Council or Staff Member for handling. Of course, there are still ongoing issues that are being dealt with by Ivan Peterson or Isabel Anton out of our Melbourne office.

As we have a number of member organisations covering a variety of areas and activities, I hope to feature one of these organisations in each edition of Blind Citizens News. In this way, we can all gain a better knowledge of the type of work, or services, provided by these diverse groups. My profile this time is SensWide Services.

SensWide Services operates throughout Victoria, and is a specialist agency which offers, to employment services and employers, the additional support required to enable jobseekers who are vision impaired hearing impaired, or deafblind to find employment. Finding a job is hard at the best of times, but if you are blind or deafblind the task can be made twice as difficult.

SensWide's consultants are professionally trained in the field of sensory impairment and are available to provide resources, training, education and advice to help to create positive employment outcomes.

In addition to providing employment support SensWide also runs a comprehensive training course. The Sensory Employment Education Kit (SEEK) is a specially designed training package for use by persons who work with or for people who have a sensory disability. SEEK is conducted by highly skilled consultants and gives participants an insight into sensory disabilities in a friendly and fun environment.

For assistance or further information on SensWide, contact the Manager or the Customer Service Co-ordinator.

Tel: 03-9642-8848
Fax: 03-9642-8750
TTY: 03-9642-8754
E-mail: senswide@smart.net.au

I look forward to your continued input on any issues or concerns. Please do not hesitate to contact me at home: Tel: 03-9434-3832, fax: 03-9650-5088,
or by email on boyd_family@msn.com
or through the Blind Citizens Australia Office.

Banks - Fee Exemptions and Concessions

This report will focus on the policies various banks have adopted in relation to people with disabilities who cannot access electronic banking facilities such as ATMs.

In recent years most banks have developed policies which limit the number of free over-the-counter transactions and which impose charges for excess transactions. Many banks impose higher charges for excess transactions over-the-counter compared to ATM and EFTPOS transactions. Clearly some of these policies discriminate against people with disabilities who cannot use ATMs, including people who are blind or vision impaired.

The Commonwealth Bank introduced a fee exemption policy for people with disabilities two years ago following complaints of discrimination lodged by Blind Citizens Australia and Disabled People's International (Australia). Since then some other banks have also developed concessions for people with disabilities. In order to apply for an exemption or concession rate customers with disabilities will need to identify themselves to branch staff.

I will briefly summarise the policies which have been adopted by the Commonwealth Bank, the National Australia Bank, and the ANZ.

Commonwealth Bank - The Commonwealth Bank provides exemptions from account keeping and withdrawal fees for over-the-counter transactions on a range of accounts. To be eligible for the exemption a person must have a disability that prevents them from using electronic banking and must be an existing customer of two years' standing. Customers with a disability are able to apply for an exemption at any branch. The exemption can apply to one account nominated by the customer.

National Australia Bank - The National Australia Bank allows all customers eight free transactions per month (with a maximum of four over-the-counter transactions). The following fees apply for excess transactions: $2 for excess over-the-counter transactions, $1 for an excess cheque transaction, 50 cents for an excess ATM transaction, and 35 cents for an excess EFTPOS transaction.

However, customers who cannot use an ATM because of a disability can qualify for concessions on the above fees. Each excess over-the-counter transaction for a person with a disability incurs a 35 cent charge.

ANZ Bank - The ANZ offers fee concessions on certain accounts to customers who are unable to use an ATM. For example, the ANZ Access Simplicity Account allows customers 6 free withdrawals each month, including a maximum of 2 over-the-counter withdrawals. Customers with disabilities are charged a reduced fee in relation to excess withdrawals over the counter.

Other Banks - Readers who are adversely affected by policies which operate in other banks should consider approaching their bank manager to negotiate a concession rate. If you experience problems please feel free to contact me at the National Office of Blind Citizens Australia.

We hope that ATMs will be accessible to people who are blind or vision impaired in the near future. Blind Citizens Australia has been lobbying banks to investigate new technological options to overcome the barriers blind and vision impaired people encounter. In the meantime, we must ensure that we do not suffer discrimination in the application of policies regarding over-the-counter services. Once again, I encourage you to contact me at the national office if you have any queries.

Medical Reviews of Blind Pensioners

In the last edition of Blind Citizens News I reported on the medical reviews of blind pensioners which Centrelink is currently conducting. Since then I have received a reply from Centrelink to the issues which I had previously raised in correspondence.

The first issue I raised with Centrelink was the difficulty some pensioners were encountering in providing an ophthalmologist report within the stipulated 21 day time frame. I have been advised by Centrelink that pensioners who have any difficulty complying with this time frame should contact their local Centrelink office to obtain an extension of time. Further, Centrelink management have emphasised to their staff the necessity of making every effort to personally contact blind pensioners before they are suspended for failure to return the report in time.

I also argued that Centrelink should accept a report from a pensioner's General Practitioner in cases where a person was clearly permanently blind. Centrelink advise that in some rare circumstances a report from a General Practitioner may suffice and that this would need to be negotiated with the local office on a case by case basis. However, Centrelink's policy is that a report from an appropriate specialist is required where it is necessary to actually measure the degree of vision loss.

I recently received in the office of Blind Citizens Australia three copies in Braille of the Second Progress Report of the Commonwealth Disability Strategy. The document comprises two Braille volumes. The Braille is embossed on both sides of the page like a normal printed book.

My confusion, frustration and annoyance started when I discovered that two of the copies had the wrong print and Braille labels on the front cover - volume one labelled as volume two and volume two labelled as volume one. I selected the copy with the correct labelling to take away with me to read, only to find that the page numbering was wrong - the odd pages were on the left and the even pages were on the right.

Not to be deterred I started reading. I do not understand why on the title page in each volume the word "Volumes" was written as "VolumeS" with a capital s. But it aroused my suspicions. "These guys haven't learnt", I thought, "I better make some more enquiries". I went to the Table of Contents, just to see if the page numbers corresponded to their section headings. I found the set-out curious, but I can't prove that it was wrong - I haven't seen the printed copy. I think the transcriber did not properly understand the hierarchy of headings in the document. Apart from this, the Table of Contents in Volume Two was okay. Volume One was a different story. Everything was out by two pages. So if the Table of Contents showed page 26 I had to turn to page 24 to find the section I wanted. The two-page error was consistent, not increasing as one might expect in view of the next point.

I started to read Volume One. It seemed a bit strange. I looked at Volume Two and it felt normal. The penny dropped. Volume One was transcribed with a 33-character line length (instead of 40). I shall give RBS the benefit of the doubt. I know that blindness agencies quote and charge by the Braille page (something I agree with), and I know that this event increased the number of Braille pages by about fifteen per cent. But I'm sure the problem was caused by failure of the transcriber to negate a command used in the Table of Contents.

There were not many errors in the body of the text - I noticed just a few caused by some strange event that I cannot put down to typing errors or translation errors - things like the letters "st" missing from the word "statement". Presumably the document was received by RBS in electronic form and was spell checked. But there was one thing which attracted my curiosity. The Commonwealth Disability Strategy is written in sections specified with the decimal point as a deliminator (2.2.8 followed by 2.2.9, for example). RBS used the literary apostrophe or mathematical comma (dot three) instead of the decimal point (dot 2). I found this curious and checked with one of Australia's foremost Braille experts to be assured that there has been no change to the Braille rules.

One might ask "What is the point? Where is this leading to?". RBS believes that proofreading for Braille is over-emphasised. Last Year I sat at a meeting of the Committee of Australian Blindness Agencies where we discussed a document of principles concerning the Australian Braille Library Service and associated Braille production. The Chief Executive from RBS submitted that the reference to Braille being proofread should be omitted. I disagreed, stating that the term "proofread" may need to be qualified and that the type of proofreading or quality control is dependent on the precise form of Braille production being used. I resolved to take up the matter with the Chief Executive at another time, which I did.

Last year I received a Braille copy of "When Even Glasses Don't Help", a report of research carried out by Royal Blind Society. It was quite a good report - good methodology, well presented findings, interesting conclusions. But the Braille was shocking! Lots of errors showing that the work had not been checked by a blind person reading the Braille. I don't mean the occasional typo, I mean other things - basic formatting mistakes like missed headings. I don't remember all the details and I don't want to over-emphasise the point. The report presented its findings using tables and many figures were given, expressed as percentages. Throughout the report the percentage sign was wrong. Instead of being written as dot 4 followed by the "sh" sign, it was written as dot 4 followed by the "sh" sign followed by the letters "all" - every time.

I later raised my concerns about this Braille with staff at the RBS - working both from the bottom up and from the top down. Again I heard a senior manager at RBS (one who is no longer there) denigrate the importance of Braille proofreading. RBS Braille is not cheap - it's the most expensive in the country. If we Braille readers do not complain, both privately and publicly, we will be lumbered with second class service and the resultant devaluing of Braille. In my opinion RBS Braille is not expensive because the quality is good, it's expensive because the efficiency is poor and the format is considered a premium format for a small group of users. I hope in the future that I will be proved wrong about RBS. I also sound a warning to other blindness agencies which have a responsibility to Braille users. RBS is not the only one deserving criticism. And just maybe, next time, it won't be the (only) one which gets it.

The closing date for articles for the next issue of Blind Citizens News is Friday, June 12, 1998. Articles should be sent to Lynne Davis at the Blind Citizens Australia Office, in large print or in electronic form (disk or email attachment). If you would like to discuss your ideas for a possible article please call Lynne on (02) 9438 5675 or send her a message via the Office.

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