PO Box 24
SUNSHINE VICTORIA 3020
13 Barrett Street
KENSINGTON VICTORIA 3031

We are currently running short of both tapes and mailers. To ensure that we will be able to continue to send both SoundAbout and BCA News in a timely manner, we ask that, over the next few weeks, you check your cupboards and all those other places where tapes/mailers may be hiding and return them to the National Office. Please tell anyone who may be posting the mailers for you that there is no postage required. If you have mailers that have been around for a long time when turning the address card over please have someone check that the address is PO Box 24, Sunshine Vic 3020

Welcome to the first edition of Blind Citizens News for 2006. As we have many articles in this issue, including many introductions to make and much information to tell, I won't prolong my editorial. Please keep your contributions coming in!

Dear Editor

I am writing to pay tribute to Neville Kerr and thank him for his many years of service in producing and presenting Horizons.

Although the program is no longer, it has been a source of disseminating loads of information from staff changes in BCA to technology to loads more. My first encounter with this program was in Melbourne in early 1984, I was staying at Guide Dogs doing some intensive cane training and heard an interview with an English lady I think it was. The details of the interview elude me, but it was a good way of introducing people to BCA.

I hope that in the future someone can take up the challenge and fill the huge shoes that Neville has left. Well done Neville and thanks a bunch!

Lisa Hayes

Dear Editor,

Having spent the best part of the past two years completing postgraduate study while working concurrently I have only just found time to catch up on reading various publications not directly related to my course released during this period - including Blind Citizens News. I am impressed by the work done during recent years by BCA in its efforts to change what it means to have a vision disability.

At this time of reflection, I look back with appreciation at the work of BCA and others to facilitate access to various spheres of community life for people with disabilities over many years. While not perfect, instruments such as the Commonwealth Disability Discrimination Act (DDA) have significantly improved the situation for us - a thought I will certainly carry with me on graduation day.

My appreciation of the difference made by the DDA through the work of BCA and others to community life was reinforced at a personal level upon commencement of my postgraduate course in educational leadership and management undertaken at Macquarie University in Sydney. Life as a totally blind student was so different from that of my undergraduate days of the 1980s when access to course material in accessible form was anything but timely, computers as an educational and information access tool unheard of and hostile attitudes displayed by staff commonplace. Upon undertaking my recent studies, computer technology was an essential resource for all students with timely information available, on the whole, in electronic form and (where required) Braille. Support staff were, with one exception, also encouraging, teaching staff and students receptive to my needs - even welcoming - and classroom activities and assessment tasks were organised in a manner, which ensured my participation on the same terms as others. It was really nice to be able to devote myself to the task of studying the subject matter covered in the program instead of having to constantly concern myself with chasing up late texts, finding readers to assist me in accessing journal articles and other references available from the University Library etc.

There is no doubt the technological revolution, despite its challenges, has proved to be a wonderful source of empowerment for people who are blind or vision impaired in education, work and other aspects of life. However, our access to such technology and the resultant wealth of written information contained in course texts, newspapers and other valuable resources would have been far more limited without the existence of the DDA as an instrument for fundamental change in our society.

The recent passage in to law of the DDA Education Standards will greatly assist people who are blind or vision impaired and those providing support services to them to assist their equitable access to education in all sectors of the Australian education system. However, it should be remembered benefits now available to us did not suddenly fall from the sky. They have been long fought for and we owe much to those leading the fight for which we are now starting to reap real rewards.

We have been informed in Blind Citizens News from time to time regarding work on efforts to finalise and pass the Education Standards which, after almost a decade of hard work, are now in force. For those who think this should be the end of efforts to make education fully accessible to people who are blind or vision impaired in Australia, think again! Systemically or as individuals, we cannot take our achievements for granted. Furthermore, while the situation is certainly a far cry from the earlier years for students of my generation and (of course) those who came before, we still have a long way to go in levelling the playing field for students who are blind or vision impaired. For example, the goals of securing accessible student information access systems and enrolment processes in all Australian universities have still to be achieved.

BCA and others advocating for access to education for people with vision disabilities cannot afford to rest on their laurels. It is critical that they turn their attention to implementation of the Standards by supporting efforts designed to promote and ensure compliance with them by schools, TAFE colleges, public and privately funded universities and other organisations providing formal courses of study. I'm pleased a resolution regarding this very issue was passed at the recent BCA National Convention, which I sincerely hope will be acted upon.

BCA must also work toward providing comment to government and bodies such as the Australian vice-Chancellors Committee on the effectiveness of the Standards through refinement of its policies as appropriate an input to consultative processes in an attempt to fine-tune them prior to the end of their five-year enforcement period. Like any organisation, BCA is only as effective as its membership allows. With this in mind we all have an important role to play in informing branches, NPDC representatives, Board members and the National Office regarding positive and negative experiences of students who are blind or vision impaired in their efforts to fully access the education system during this period. From both the perspective of a person supporting students with disabilities in an educational setting and a consumer of learning support services given my own vision disability, I cannot stress strongly enough the importance of and necessity for eternal vigilance if the hard-won right to accessible education for students who are blind or vision impaired is to be ultimately preserved.

Sondra Wibberley.

In this my first column for 2006, I want to bring members up to date on a number of things which have been happening at BCA and also let you know of what is planned for the coming year.

In 2006, BCA will hold its State Conventions throughout Australia. We currently have dates for three State Conventions. They are:

• Victoria State Convention - Saturday 21-Sunday 22 October. Please note that the BCA AGM will be held on Friday 20 October as part of this State Convention;
• South Australia State Convention - Saturday 14 October;
• New South Wales State Convention - Saturday 14-Sunday 15 October;
• Western Australia State Convention - 22 July.

Further details regarding these and other State Conventions will be disseminated to members in the following months.

As many of you may be aware, after the voting results were announced at the BCA National Convention in Perth in October last year, there remained three vacant positions on the Board. In line with BCA's Memorandum and Articles of Association, it is the Board's responsibility to fill any vacancy which arises on the Board. As a result, at its face-to-face meeting in November last year, the makeup of the Board was finalised. The Board now stands as:

• Robert Altamore, President - ACT;
• Sue Thompson, Vice-President - NSW;
• Craig Magill - ACT;
• Tony Starkey - SA;
• Robyn McKenzie - Vic;
• Natale Cutri - Vic;
• Jayson Hanrahan - Vic.

I welcome Natale, Robyn and Jayson to the Board. They bring to the Board expertise in the areas of marketing, accounting and management and this will assist BCA greatly in working towards implementing our Business Plan.

Following the 2005 elections for nomination to the NPDC, there remained three casual vacancies. Two of these vacancies have now been filled and the NPDC currently comprises:

• The Board of BCA;
• Michael Curran - Vic;
• Bill McKennariey - NSW;
• Lee Kumutat - National Women’s Branch;
• Terry Boyle - Qld;
• Eleanor Waight - ACT;
• Kym Hand - SA;
• Greg Madson - WA.

At its face-to-face meeting in November last year, the Council decided to review the way it carries out its policy work. The Council identified several issues which it felt needed prioritising in the short-term. These included: copyright, dissemination of the BCA Pedestrian Safety Policy and Library Services Policy, accessible voting, welfare/industrial relation reforms and membership and development. In order to deal with some of these issues, some task groups were formed and have met to further this work.

Since the last issue of BCA News, the National Office has undergone many staffing changes. John Smithies has finished his term as Business Manager and has left us with much work to do to implement BCA's Business Plan. We have appointed Mary Latham to the newly created position of Operations Manager and one of her tasks will be to assist BCA to implement many of the recommendations contained in the Business Plan. As a result of my change in role, Jessica Zammit has recently been appointed as the new Victorian Advocacy and Information Officer. We also have Alyena Mohummadally working on a casual basis to assist Aileen McFadzean in her national advocacy work. I welcome all our new staff members and hope that they will find their time at BCA both challenging and rewarding.

Over the past 18 months, BCA has been looking at reviewing its various forms of communications with its members. As a result of a number of circumstances, a decision has been taken to discontinue production of BCA's Horizons Program in its current format commencing the week of 20 March 2006. Horizons has been part of BCA for many years and BCA would like to express its gratitude to Neville Kerr for the enormous amount of time and resources he has devoted to the weekly production of this program. We would also like to thank RPH Australia for assisting BCA in providing broadcasting time on its various RPH Stations. We are working hard to identify ways in which BCA can continue to communicate regularly with its members and we would welcome feedback from you regarding how this can be done.

Late last year, Stephen Jolley informed the Board that, as a result of a number of circumstances, he would no longer be able to undertake the role of presenter of SoundAbout. By now you will all have received your SoundAbout magazine and I'm sure you will have noticed that we had both John Simpson and Robyn McKenzie undertaking this role and BCA would like to thank John for his assistance and welcome Robyn to a new role with BCA. We would welcome feedback from members regarding SoundAbout.

On Sunday 19 February, Blind Citizens Australia's Melbourne Branch and Overseas Branch held a joint function at the home of Ivan Molloy to officially present him with the David Blyth Award in recognition of his service to both blind cricket and blind and vision impaired people at an international level. I am reliably informed that the day was very successful and many Melbourne Branch members were very impressed with the amount of work which this Special Branch does for children living overseas who are blind or vision impaired.

Some members have requested information about how to prepare and lodge a complaint of disability discrimination. To assist members I have prepared the following information.

Does my issue fall under the Disability Discrimination Act 1992 (DDA)

Sometimes it can be difficult to know whether the unfair treatment you might have experienced is actually disability discrimination under the DDA.

The Human Rights and Equal opportunity Commission (HREOC) has a very useful web site www.humanrights.gov.au. This web site contains information about all areas covered by the DDA. It also fully explains the complaint process.

At BCA we are very happy to provide an advice service to advise whether an issue is covered by the DDA and to provide an advocacy service. The process is designed to be able to be used by people with little or no experience of the complaints process. HREOC also provides a Complaint InfoLine - 1300 656-419. By calling this number you can have clarified whether or not a complaint is covered by the DDA and be advised of the next step to take.

There have been a number of complaints from members regarding the use of Graphical Verification Tests on websites. The most recent complaints centred on PayPal and the use of their graphical test when setting up an account. After contacting PayPal on this matter, BCA decided to lodge a Disability Discrimination Act complaint against PayPal with the Human Rights and Equal Opportunity Commission (HREOC).

In response to this complaint and our understanding of other web sites using the Graphical Verification Test, BCA has established a working group to further research the issue and develop a systemic strategic approach with the aim of calling on organisations to provide alternatives to these tests that are secure and usable for people who are blind or vision impaired.

My name is Jessica Zammit and I have recently accepted the position of Victorian Advocacy and Information Officer at BCA National Office. I have a strong interest in issues relating to vision impairment and have worked extensively in the area, with experience in a volunteer capacity at Retina Australia (Vic) Inc. With a focus on fundraising, I have also contributed to the creation of state and national publications.

Internship experience with the Department of Infrastructure has also proven useful, providing opportunities to work closely with transport providers, VicRoads, local and state government on issues relating to infrastructure in the built environment and how this may affect the amount of walking completed by people who are vision impaired.

In my spare time, I enjoy spending time with friends and making the most of warm summer nights.

I look forward to working with BCA in 2006 and addressing the issues raised by our members.

I have recently joined BCA as Operations Manager in the Melbourne office. I am a qualified accountant and my career background to date has been in chartered accounting and the financial services industry. I spent eight years working in chartered accounting firms, firstly in country NSW and then in Sydney. I then followed that with an 18 month working holiday in the UK, based in London, working for Unibank (a Danish bank). I then returned to Sydney and spent six years working for Merrill Lynch (a US banking, broking and investment firm). I then moved to Melbourne and spent seven years working for IOOF (an Australian funds management and financial planning group).

During my time at IOOF, I established the IOOF Foundation which is a charitable trust supporting disadvantaged families, aged care and disadvantaged children and youth. I also support several other not for profit organisations by undertaking volunteer work.

Robyn McKenzie has been a member of BCA since 1991. She has held a range of positions within BCA including Treasurer of the Melbourne branch, Secretary of the national Womens branch and Board appointed nominee on the Victorian Coordinating committee.

Robyn is the Manager of Vision Australia's Employment Services in Victoria. She is currently studying a Masters degree in Careers Education and Development. Legally blind since the age of eight, Robyn uses an identification cane when travelling in unfamiliar or crowded environments. Robyn learnt to read Braille nine years ago, and has become a strong advocate for Braille literacy.

At last year's Convention in Perth, Robyn chaired a session on Employment. She is very passionate about increasing employment opportunities for people who are blind or vision impaired. In particular, she is concerned about addressing the under employment issues faced by people who are blind or vision impaired.

Robyn brings to the Board a strong background in Management, blindness and low vision services, and a broad understanding of the welfare to work reforms which are about to impact on most Australians with a disability. Listeners to our SoundAbout magazine will soon become familiar with Robyn's voice. She is now the national presenter of SoundAbout.

Jayson Hanrahan is the most recent addition to the BCA Board of Directors, attending his first official board meeting in December. With tertiary qualifications and professional experience in business, marketing and fundraising, Jayson brings to BCA a range of skills in many aspects of not-for-profit organisational management. In his current role as Marketing and Communications Manager with the Royal Victorian Eye and Ear Hospital, he is responsible for all aspects of the hospitals marketing, fundraising and public relations activities.

Jayson's professional experience has been gained over a number of years working within the not-for-profit sector with such organisations as the Royal Victorian Institute for the Blind, the Adelaide Festival of Arts, and the Sydney 2000 Paralympic Games.

On a more personal note, Jayson is also an avid water-skier, and has competed at a State, National and International level in tournament competition under the V2 disability classification.

I am from Victoria in my mid 30s. I have congenital cataract and nystagmus. I use adaptive equipment such as closed circuit television and speech output and text enlargement software on my computer both at work and at home. My major primary education was at St. Paul's School for the Blind in Kew. I was sent there after it was established that I had difficulty coping at a local Catholic primary school. I was then integrated to my local Catholic Secondary College, St. Bernard's in Essendon. I then completed a Bachelor of Arts degree at the University of Melbourne followed by a Graduate Diploma in Accounting at the Victoria University of Technology. My family is of Italian origin and I speak and write fluent Italian including the local Southern dialect. As a child I assisted my family in the family fruit and vegetable business at the Queen Victoria Market.

I learnt from a very early age when I was at school that I needed to advocate for myself and though they wouldn't directly admit it, my parents were very good advocates for me and themselves, particularly my father who was instrumental in obtaining a car and a driver so that students like myself who had working parents could be transported to school on a Monday morning and transported back home on a Friday. This service established at St. Paul's was extended to a full time service and for school activities. I was the first to have a portable large print manual typewriter.

At University I was required to advocate for myself in an era where there were no DLOs to ensure I was able to have material in a suitable format within a reasonable time frame. I also needed to advocate for myself in terms of getting extension for examination times etc.

I found it very difficult as a blind and vision impaired person looking for work particularly in the accounting area as it was considered traditionally not a job for blind and vision impaired people. I enrolled in some short computer courses to develop my skills. My family accountant offered me the opportunity to participate in voluntary work at his firm, but I was unable to get any adaptive equipment on loan or to get access to such equipment to undertake the work. I lobbied CRS, my local member and the blindness organisations. I didn't meet the criteria so therefore I was denied the opportunity.

An opportunity presented itself when I was finally employed at Victoria Police. I have been working in Finance and Budget for almost 10 years in various departments at Victoria Police. I have had a couple of promotions since I started and am well supported with my adaptive equipment needs. It is a great feeling to know that you are an integral part of the organisation and that my vision impairment is no barrier.

I am a Carlton supporter and attend games regularly by myself. I am also a keen traveller and have travelled around Australia, NZ, Europe, America and the Middle East independently. I have met many good friends on Contiki tours along the way.

I have been an active member with BCA since 1999. I have been on the Victorian Coordinating Committee and am now current Chair. I have been on the Melbourne Branch committee for five years, three of those as President. I have been programme coordinator for SoundAbout Victoria/Tasmania for several years. I have also been on several consumer advisory committees of the old RVIB and am currently on the Vision Australia Client Representative Council.

I hope to bring to BCA at board level my financial experience as part of the new Business Plan, which is to grow BCA's financial base. I am also keen at seeing increased membership and strong and thriving branches with the development of branches into regional areas. I am also keen to see improvements in the access to information particularly with the ever developing modern technology, to ensure our blindness organisations provide the services we require, and contribute to lobby governments and the general community for greater initiative that ensure we can participate equitably in our society. I look forward to working with each of you to achieving these objectives because essentially BCA is our organisation and it is only as strong as its membership participation.

The committee of the National Women's Branch are getting to know one another as we continue settling in to our term, coordinating branch activities for the next two years and addressing the issues pertaining to blind women. I am finding my role as president very enjoyable particularly with such a dedicated group of women on the committee.

To assist with prioritizing ideas and projects, the committee is developing an action plan which is a good way to define in detail what ideas each member brings with them before embarking on any large projects. It is designed to be a working document and can be modified to reflect ideas relevant to the time frame of each term and thus may change as the months progress. Each committee member usually takes on the responsibility of coordinating a project if they would like to work on an area of particular interest and we are determining those areas at the moment. So far, some of the projects that have been highlighted during recent brainstorming sessions or by the previous committee are:

Through a forum investigate key issues of interest concerning younger women, Hold seminars on leadership training and committee involvement/responsibilities, Hold an information session/seminar on health for young women.

It is my hope that branch members will express interest in some of these ideas and become involved in organising and assisting with the projects. Some of the sessions will be held at the local level and others may be address through written publications. If you are intrigued by any of the ideas outlined or have some of your own, please contact the branch. Stay tuned and look out for us at your state convention and in future BCA publications.

We have made some decisions regarding Aspirations, the quarterly magazine of the women's branch. Christine Simpson has kindly offered to continue on as editor, and we are grateful for her constant work and dedication to the branch. To support Christine in this task we have set up a subcommittee whose role is to write and source articles so that the workload is spread out a little. We thank Christine for her tireless efforts and hope this new initiative will assist in publishing a magazine that is a source of enjoyment and information for our membership.

If you are curious about the work of the women's branch and would like to become a member, please don't hesitate to contact the national office, or write to us by email: nwb@bca.org.au

Membership is a once-off cost of $10 and we welcome your involvement.

Editors Note: Taken from Blind Citizens News (/April 1998)

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.

2006 is the twentieth anniversary of the passage of an important piece of legislation for people with disabilities in Australia. In 1986, the Commonwealth (Labor) government introduced the Disability Services Act, which required service providers in receipt of Commonwealth funding to meet various standards in the provision of services to people with disabilities. The legislation was part of a series of major reforms which had followed on from the International Year of the Disabled Person in 1981 and which had been strongly influenced by the development of a disability rights movement in Australia and around the world. The Commonwealth Disability Services Act was followed in time by similar pieces of legislation in the States and Territories.

One of the most significant aspects of these Acts was the requirement that the recipients of services (that is, people with disabilities) should be involved in making decisions about the services which they received, not only on an individual basis but also at the level of policy and decision making about organisation-wide matters of service delivery. This was a very significant departure from most previous practice, in which these services had been seen as charitable or benevolent actions performed for the benefit of disabled people by those (well-intentioned and/or professionally trained people) who knew what they needed.

In the twenty years since 1986, this requirement of the various Disability Services Acts has been differently interpreted by organisations in the disability sector, with varying degrees of adherence to the original philosophy underpinning the legislation. In most cases there has been considerable room for improvement.

The three organisations which merged in 2004 to form Vision Australia – the Royal Blind Society of NSW, Royal Victorian Institute for the Blind, and Vision Australia Foundation – each had different mechanisms for meeting the requirement for client/consumer involvement. In the merger process it was necessary to decide how the new organisation would meet its responsibilities under the Disability Services Acts. There was also a strong feeling among many involved in the process that this was an opportunity to take a fresh look at the issues which had been raised by the disability rights movement back in the 1980's, and to reconsider how best to enshrine the philosophy underpinning the legislation in the processes of the new organisation. Over a period of more than a year, much effort was expended in hammering out the details of how Vision Australia would address these objectives. The result was a Client and Consumer Advisory Charter, outlining the way in which the organisation would involve both clients and consumer organisations in determining policies and processes which impinge on the lives of blind and vision impaired people.

The Charter is quite a lengthy document, which describes a complex set of structures for client and consumer consultation. It is available on the Vision Australia website, and in a range of accessible formats from the Policy and Advocacy Unit of Vision Australia. My intention in the remainder of this article is to briefly outline the main elements of the Charter and to describe the progress so far in implementing it. I should declare an interest here: since October 2005 I have occupied the position of Secretariat Coordinator with Vision Australia, my job being to implement the Charter and oversee the support provided by the organisation to its various consultative bodies. Quite a daunting task!

The Charter outlines three levels at which interested clients will be able to provide input to the organisation: Local Client Groups, Regional Client Committees, and the Client Representative Council. Each Local Client Group will elect a representative to their Regional Client Committee, and each Regional Client Committee will elect a representative to the Client Representative Council. Meetings of the Client Representative Council will also be attended by two members of the Vision Australia Board, providing a direct link between these two bodies. In addition to these internal client groupings, external organisations representing the broader constituencies from which clients are drawn will be eligible to participate in the Consumer Advisory Body, which will meet with the Chief Executive Officer on a quarterly basis.

So much for the theory: now begins the difficult task of making it work in practice. What has been accomplished thus far?

Last year Vision Australia called for applications from clients interested in filling 12 positions on the initial Client Representative Council. Over 60 people, including many BCA members, applied for these positions. The CRC has been meeting monthly since July, and its members have begun the process of getting out to speak with both clients and staff members about the new consultative process. An increasing number of client issues are being raised, and the agendas of the monthly meetings are very full.

At the beginning of this year, interested consumer organisations were invited to apply to become members of the Consumer Advisory Body. At the time of writing, four organisations, including Blind Citizens Australia, have been invited to join this body, which meets for the first time in March.

The next phases of the implementation involve the development of regional committees and local client groups, and it's hoped to have the whole structure in place by September 2007. To some readers this may seem like a long time, but there's a huge amount of work involved in turning the words of the Charter into a functioning reality. My hope is that, when it is all in place, we will have met the expectations of those who framed the Disability Services Act way back in 1986. And, of course, the magic ingredient will be an interested, committed and lively constituency of clients and consumers!

If you have any questions about the content of this article, or would like a copy of the Charter, please feel free to contact me at lynne.davis@rbs.org.au or by telephone on (02) 9334 3293 (direct) or 1300 13 45 60.

The Jot a Dot, the Pocket Brailler designed and produced by Quantum Technology, is a low cost and easy to use manual braille-writer. It is a fraction of the size and weight of traditional mechanical Braille Writers and uses regular paper. Jot a Dot will be of interest to anyone involved with braille, braille writing and braille education.

Jot a Dot has a standard 6 dot Braille keyboard, and enables writing from left to right. The six keys have been ergonomically designed to suit a range of hand sizes and shapes. Jot a Dot is made of high impact resistant plastics and weighs less than 0.5kg, so it can be easily carried by anyone to write and read Braille anywhere efficiently and conveniently.

Quantum Technology's Jot a Dot Pocket Brailler one of eleven finalists for the Saatchi & Saatchi Award for World Changing Ideas!

We were excited and honoured for Jot a Dot to be selected as one of eleven finalists in this prestigious award. Saatchi & Saatchi established the Award to recognize, celebrate and promote the power and potential of ideas and innovation to change the world we live in. Other finalists included the on-line encyclopaedia Wikipaedia, a revolutionary cancer detection system and a new wireless power delivery system for re-charging battery operated devices.

Tim Connell, Managing Director, Quantum Technology, attended the award ceremony in New York, on 26 January 2006. While we didn't win, the publicity and recognition has been a reward in itself.

For more information on the Jot a Dot please call one of our offices or visit the Jot a Dot webpage:

Members of Blind Citizens Australia and generous members of the public have, for many years, partly funded the work of BCA through donations and lotteries. In recent times a number of friends and members have also shown their support by leaving a bequest or legacy from their estate in a Will.

This kind of support is vital for our ongoing work and we encourage all members and friends to ensure that Blind Citizens Australia will be here to work for blind and vision impaired Australians in the future. BCA's advocacy to ensure that services and facilities do not discriminate against our members and other blind people has proved to be of enormous benefit to all blind Australians and we need to make sure that our work continues.

You can help by making a bequest in your Will. Please include Blind Citizens Australia in your Will by using the following wording:

"I give to Blind Citizens Australia the sum of (include sum both in words and figures) free from all duties or other taxes, whether State or Federal."

We would like to thank all members who have generously donated to BCA recently. If you would like to make a donation to BCA, but find it difficult filling out forms you may like to call the National Office on 1800 033 660 and donate over the phone using your credit card.

Articles for the next issue should be submitted no later than Friday, 5 May. Articles should be sent to Blind Citizens Australia National Office, if possible in large print (16pt or larger) or preferably in electronic form (disk or email attachment).

If you would like to discuss your ideas for a possible article please call on 1800 033 660, or email bca@bca.org.au.

Blind Citizens News accepts material in the following categories: Information about new services, facilities or events of wide interest among blind and vision impaired people is accepted for inclusion within the news content.

Announcements, for sale notices and other advertisements from individuals and small non-profit organisations may be included in a "Notice Board" section, provided that they do not exceed 25 words and are targeted to a national readership. A charge of $20 will apply for each notice.

Advertising on behalf of government, commercial or community organisations that is considered to be relevant to the general readership will be included under the heading "Advertisements". Advertisers must provide a copy suitable for inclusion in all formats of the publication and the following rates will apply.
Full page (320 words large print) $375
Half page (150 words large print) $200
Quarter page (70 words large print) $105

For greatest impact, why not consider sponsorship of an entire issue of Blind Citizens News? For $800 you will obtain:
a credit of up to 25 words on the front cover;
2 print pages for the sponsor's message (equivalent space in other formats).

Blind Citizens News is published four times a year and is now read by more than 3000 people with a direct interest or involvement in the services and facilities available to Australia’s blind and vision impaired population. We circulate 980 large print, 1000 audio, 200 Braille and 50 electronic (computer disk and email) copies to members, libraries, service agencies, government departments and equipment suppliers throughout Australia. Blind Citizens News also appears in full on the internet website of Blind Citizens Australia.