National Policy Council Report

By Fiona Woods

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The NPC was delighted to launch the Blindness Service Provider Expectations Policy at Convention. The policy clarifies for service users and service providers what we mean when we say, in BCA’s mission statement, that we strive for “high quality and accessible services which meet our needs”.

It sets out our aspirations for entitlement to service, service delivery, product sales, communications and access to information, complaints procedures, fundraising, marketing and publicity, employing people who are blind or vision impaired, governance and leadership and service user representation and advisory bodies. We explained the policy through a dramatic presentation, scripted by Lynne Davis and performed by Lynne, Helen Freris, myself and Steve Richardson, who also provided our musical theme. The policy was later unanimously endorsed by the Convention, through a recommendation, moved by Martin Stewart (Victoria’s NPC representative).

The Board recently approved two of the NPC’s other pieces of work: the Position Statement on Mobility Parking Permits, and the Position Statement and Environmental Scan on Accessible Voting. In both areas, the Statements describe the legislative background in each state and territory. BCA supports the entitlement of blind and vision impaired Australians to a Mobility Parking Permit, should they choose to apply for one. BCA has also clarified the best way of allowing blind and vision impaired citizens a secret, independent and verifiable vote. BCA will work to change the legislation in those states which currently preclude blind and vision impaired Australians from these opportunities for community participation.

All the documents mentioned above are available on this website, or in your preferred format upon request. Please contact me if you have any questions or comments on fionapawoods@gmail.com.

The NPC’s focus is now turning to the provision of healthcare. BCA already has some useful resources and a policy on hospitals, which we intend to expand and update. I chaired a panel on “Life Hacks for Surviving Hospital when you are blind or vision impaired” at Convention, which gave some insight into the issues we commonly experience and some ideas for what a successful hospital stay might look like. Healthcare includes a range of contexts, from medical, allied health, complementary, community to preventative medicine. We will be enunciating some fundamental principles and detailing how they apply in various situations. We are looking for members’ experiences and ideas, so please share your thoughts at npc@bca.org.au.

Your representatives on the NPC have achieved a lot. I thank them for their work and look forward to creating another comprehensive and comprehensible policy. Who knows: perhaps it will culminate in another live performance.

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On Multiple Disability: The Bare Bones of my Story

By Steve Richardson

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At our recent National Convention, I was invited to chair a session on the issues and challenges of living with more than one disability. Possibly the most notable question raised was “why should those who identify as having one disability care about these issues?”

Another question I might ask is “why is it so important for me to label my condition?” Often when we meet to talk about disability, the concern is not around the individual cause, but focussed on areas of common impact. I have two completely different, but equally important disabilities, blindness, and fragile bone structure.

Each of these on their own has a significant impact, but the combination of the two sometimes means that I face problems and situations that others may not need to deal with.

I don’t share this story to elicit sympathy, nor do I use this forum to complain about the cards I’ve been handed. My hope is that sharing this experience will help bring about a better understanding of those of us who live with more than one disability. As we age, we may all find ourselves with additional acquired disabilities we weren’t expecting – arthritis, hearing loss, cognitive impairment, just to name a few. As my old scouting leader might have said, “it never hurts to be prepared!”

The journey to obtain the correct diagnosis of my condition has been long, and often frustrating. It has only been in the last six months that I’ve had a definitive answer. We all know the question, on every application form, every medical request from a health care professional. “Cause of blindness?” and in my case, “cause of weak bones?” Being quite different forms of disability, nobody ever suspected that they might be linked, so when my very astute GP asked whether I knew anybody else with a similar combination of disabilities, it was a red letter day.

When I finally got my answer, Osteoporosis-pseudoglioma syndrome, it felt a bit like winning the lotto. “Congratulations! You’re one in two million! You win this rare and precious genetic condition. Symptoms may include congenital blindness, and juvenile onset Osteoporosis.” Since the journey was so arduous, perhaps I should carry the letters of my new label after my name.  “Steven Lyle Richardson, OPPG!”

I grew up in Brisbane, in what would be considered a mainstream family. While my parents allowed for my disabilities, they were also determined that my life would be as rich and rewarding as that of my other siblings, neither of whom have a disability. I was punished for not doing my household chores and was as involved in just as much sibling rivalry as any other child in a similar situation. My Dad is an adventurous person, so this included a year living in Canada and six months in the US, where he taught high school industrial education. Some people at the time thought this was quite outrageous, and actually asked, “are you taking Steven?”

Mum and Dad struggled for the same answers I sought in adulthood, against a baffled medical system, against an inadequate education system, and against community attitudes that didn’t accept square pegs in round holes. Despite the best of intentions, it wasn’t long before I got the feeling that I didn’t quite fit in. Even among my blind peers, there was a difference. I had to be a little more careful, couldn’t fully participate in the rough and tumble of the sports ground or lunchtime antics for fear of a broken limb.

Things escalated during my teenage years, when the bone fractures became more frequent and severe. I was no academic genius, so my struggle to keep up with the demands of high school only intensified when I began experiencing more difficulty walking, with constant reprimands for being late to class. The final straw was a fall caused by a stress fracture while being pulled along, by a teacher, faster than I could manage. After that, I went into a wheelchair. I spent two consecutive birthdays and Easters in hospital, and at one time, had all four limbs broken within a six-week period. I felt like a real hamburger with the lot.

While the school had a special needs unit catering for blind and vision impaired students, it was completely the wrong design for wheelchairs, with steps and stairs everywhere. I couldn’t get to classes I wanted to attend because they were halfway up a building, which meant no home economics, and no music. Even extracurricular activities like Braille Music Camp, which so many of my friends raved about, were not possible because of an inaccessible environment.

At one period of time, I sat in the special needs unit all day, because there was nobody to assist me to and from classes. Nobody wanted responsibility for fear of litigation, and trying to navigate around the school myself had already led to another disastrous fall from the chair. All of this had a major impact on my socialization and well-being. I felt like a nuisance, and very much in the way.

There were lighter moments. My friends tended to congregate around me, which made me feel a bit like a king on a throne. One of them was a bit of a lark, and would let air out of the tyres of the chair, just a little each day, so that it was only at the end of the week I would realize just how flat they were.

Thankfully, I haven’t had further occurrences as severe as those of my teenage years. Apart from two femoral fractures, and a broken collar bone, I’ve come off fairly lightly. I do get aches and pains, which can sometimes be small fractures, and my knee also has Osteoarthritis. Consequently, my walking pace is usually a lot slower than average, making walking from A to B a longer process. However, walking more slowly and cautiously is beneficial, as it prevents upcoming unseen hazards, lowering potential risk of falls and fractures. Safe travel is always an innate concern.

Throughout my adult life, I continued to baffle doctors, whose only advice was that my bones are like eggshells, and that I really need to avoid falls. I first heard the name Osteoporosis-pseudoglioma from a genetics expert about ten years ago. My clever GP had the right idea. Some testing was started, but unfortunately the funding ran out, and it was discontinued. Last year, I had a serious fracture while training with a guide dog. While talking over my plight with a friend, we discussed another friend of his who had similar circumstances to mine, and he casually mentioned the name OPPG.

Coincidentally, my hospital specialists were in the process of changing my medication, and started a whole series of tests. I took that opportunity, and got them to include genetic testing for OPPG. It took a further six months, but I finally got the much sought after phone call. I could now mark my medical forms with pride!

Despite the adversity, I generally enjoy life. I work part time, serve on a number of boards and committees, including BCA, live independently, enjoy singing in a choir and jamming with muso mates. I love playing blind table tennis, and all too infrequent visits to the beach. I also like to spend time with family and friends, some of whom tell me I have a keen sense of humour. I own one house, and I’m in the process of buying another. I feel blessed to be in the position I am.

Having a second disability gives me a unique perspective on life. It’s given me the chance to be more empathetic toward those who feel unfairly judged, or even more marginalized in an already marginal community.  I’ve learned not to take the simple pleasures in life for granted, and my experiences give me courage and strength.

My situation has also taught me that it’s our differences that make us unique, and that it’s perfectly OK to be the person I want to be. I may never climb Mt Everest, or jump from a plane, but I will embrace life to the best of my ability. Steven Lyle Richardson, OPPG, will survive.

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Life Hacks for Hospital and Travel

By Susan Thompson

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In October’s edition of Blind Citizens News, I introduced a new feature I hope to bring to readers. With the help of Convention sessions past and future, various online resources and contributions from readers, I want to create a resource of “Life Hacks” for meeting some of the challenges we might face as people who are blind or vision impaired.

In my last article, I started the ball rolling by giving you my very own tip for peeling potatoes. In this edition, I am bringing a few of the great tips from workshops on both travel and being in hospital which were part of the recent BCA National Convention, held in Hobart.

Taking the Stress out of Travelling Alone

This workshop featured three seasoned travellers – Jaci Armstrong, Rikki Chaplin and Judy Small. They shared some of their strategies for getting the most out of a trip and practical ideas that make things run more smoothly and help avoid stress.

Three of their key tips were:

  1. Consider saving up just a bit more to enable you to afford some of the things that can make your trip smoother or more enjoyable. These include an annual subscription to airport lounges where you can receive better personal assistance, or arranging personal tour guides who can help you get that much more out of your visit.
  2. Packing is important! One panellist said she tries wherever possible to pack all she takes in one carry-on bag so she doesn’t need help finding luggage at airport baggage collection. Some other suggestions about packing included a power board to plug in all your devices in one place, downloading relevant information or apps in case you lose internet access, and packing using pack cells (nylon and mesh bags) to help you keep items sorted in your bag.
  3. Stay calm so anxiety doesn’t overpower your ability to problem-solve when things don’t go so smoothly. And keep a friendly attitude as generally people are very willing to help.

Surviving Hospital When You’re Blind or Vision Impaired

This workshop featured Martin Stewart, along with Susan Thompson and Helen Badge from the NSW Centre for Clinical Innovation, who are conducting a project to improve the in-hospital experience for people who are blind or vision impaired. We heard about personal experiences of hospital from Martin, and some practical ideas for both planned and unplanned trips to hospital. Then Helen and Susan Thompson outlined the project on improving the hospital experience, and some of the findings from interviews with people who are blind or vision impaired as part of the project.

Although there is still a lot of work to be done to improve hospital experiences for people who are blind or vision impaired overall, some ideas for making our stay easier included:

  1. Take advantage of pre-admission meetings when available and make sure there are good precise notes about you and your needs.
  • Develop your own hospital plan, containing no more than five points you would like or need in relation to your care when in hospital. One particular thing to consider is whether or not to have signage advising of your vision impairment for all staff to read and your preferred wording for this sign.
  • Consider utilising My Health Record to have this plan stored and available to health professionals whenever you are in hospital.

More information about these and other tips for travel or hospital stays can be heard in recordings of these sessions, which are available to stream or download via the “Audio” page on our website.

Contribute your Life Hacks or ask the collective oracle

In future issues of Blind Citizens News, I will bring you more great tips on dealing with our frequent challenges from fellow blind and vision impaired people. If you have a question to ask, or a tip to share with others about how you have overcome a challenge, we’d love to hear it.

To submit questions about daily tasks in which you’d like some advice, email bca@bca.org.au with the subject line “Question for Life Hacks”. Likewise, those with great tips to share can send an email to the same address with the subject line “Tip for Life Hacks”.

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BCA on Expert Advisory Group for 3D Printing Project

By Ramona Mandy

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I am representing BCA as part of an expert advisory panel for an Australian Research Council funded project. This project is looking at 3D Printing for accessibility. The project title is “Using 3D Printing to Improve Access to Graphics by Vision Impaired People”. It is mainly being carried out by researchers at Monash University, but they are working in collaboration with several organisations from the blindness sector, such as the Royal Institute for Deaf and Blind Children (RIDBC), Statewide Vision Resource Centre (SVRC), Round Table on Information Access for People with Print Disabilities Inc. and the Department of Education and Training, Victoria.

In brief, this three-year project will investigate the use of 3D printing as a new means of accessing graphics for people who are blind or vision impaired. Generally speaking, it is about exploring feasibility of 3D printing for such things as STEM materials, tactile literacy and maps for O&M.  The project’s goal is to overcome the existing barriers to accessible 3D printed models by developing evidence-based guidelines for their use and design, and building capability in the blindness sector.

There are four research aims:

  1. Determine the kinds of purposes for which 3D printed models are well-suited, with a focus on education and O&M training.
  2. Evaluate strategies for touch reading 3D prints.
  3. Develop design and production guidelines for accessible 3D prints.
  4. Develop effective interfaces and low-cost technologies for augmenting 3D prints with interactive audio.

The project has been broken into six work packages, each with distinct objectives and areas of application. They vary in their planned start and end dates but usually span one to two years. The work package areas are: teaching tactile literacy, maps and plans for O&M training, adding interactive audio labels, teaching place and geography, teaching STEM, and building sector capability.

The Expert Advisory Group comprises the researchers from Monash University, the partner investigators from RIDBC and SVRC, and representatives from Round Table, the Victorian Department of Education, Guide Dogs Victoria, Royal Society for the Blind, Tactile Mapping Solutions, Vision Australia and BCA.

The expert advisory group met for the first time in November last year and will meet every 3 months from March this year. The group’s role is to:

  • Help guide the research, making sure it is on track and addressing the needs of the sector.
  • Facilitate communication, representing our respective organisations and liaising between the Expert Advisory Group and our own organisation.
  • Disseminate what the project is doing within the broader community.
  • Help with evaluation, connecting the researchers with testers.

The work that the project staff are undertaking in this first year includes:

  1. Having brainstorming sessions with stakeholders, looking at some initial 3D models of shapes and book characters for education, and experimenting with methods for connecting pieces. Magnets are working best so far.
  2. Investigating maps and plans for O&M training and components being developed that will be used to construct models for a variety of road crossings, and exploring methods for representing multiple floors/levels on a 3D map.
  3. Commencing investigation of methods for adding interactive audio labels to maps and STEM materials.

There are a number of planned activities for reaching out to the blindness sector and promoting the project work and developments as the work progresses. This includes presentations and workshops at sector conferences such as Round Table and SPEVI and national and international O&M conferences, media releases and placing articles in organisational newsletters and journals.

It is very pleasing and important that those undertaking the project have included the consumer voice in the form of BCA representation on the advisory panel that provides guidance to the project. I’m very happy to be involved in this way. I am totally blind, a braille user and I have personal experience of my learning being enhanced through 3D models.  I look forward to the exciting outcomes that I anticipate will come of this project, and I expect you will be hearing more on this topic before too long.

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What is a Peer Mentor, and How can a Peer Mentor Help You?

By Naomi Barber

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Peer mentoring is a form of mentorship that usually takes place between a person who has lived through a specific experience (peer mentor) and a person who is new to that experience (the peer mentee). (Wikipedia)

BCA members often have significant life experiences, and newer members may be seeking the knowledge and expertise of someone who has walked in their shoes. More than a support worker, or a formal support, a mentor is someone with whom we can develop a relationship and trust to listen to us, someone who understands our challenges, walks beside us and helps us find the answers to our questions. That’s why BCA has invested in a group of people who are blind or vision impaired to become the next generation of mentors, people the community can look to for guidance and support to help them adjust, achieve and succeed.

In 2019 BCA has been delivering training through the Information Linkages and Capacity Building (ILC) funding as granted by the National Disability Insurance Agency (NDIA).  Specifically, a group of approximately 30 people met on a weekly basis to learn, develop skills and competencies, and explore the challenges and the powerful impact of Peer Mentoring.

The group was comprised of people of various ages and life stages, people who were born blind and those who have lost their sight more recently.

There were men and women, those from non-English speaking backgrounds and many from remote and regional areas. The group members linked via teleconference and shared their thoughts and experiences with the weekly facilitator. The ultimate aim was to equip BCA members with the skills and resources to act as confident mentors, supporting other people within their community to achieve their own goals.

The topics covered included communication, expressing yourself, boundaries, learning styles, perspectives, empathy, self-management, stigma, considering others’ viewpoints, coaching vs mentoring, setting vision statements, advocacy for others and for yourself, empowering others and motivation.

While conducting a teleconference with around 30 participants posed some unique challenges, it also provided us with significant lessons, and ideas on how to progress our learning and development strategies into the future. Congratulations to all who completed the training, and will now look to acting as peer mentors to others on their journey of life.

Some of our participants have shared the following insights:

“I have grown in confidence from being part of this training.”

“I’ve met other blind people and heard their stories for the first time.”

“I’ve learnt that I have skills and capabilities that I have developed over the years that I can now use to help others.”

“Having access to a teleconference means that I can talk to people from other states in other parts of Australia. This includes access to facilitators and presenters. This training has opened my eyes to so many possibilities.”

“I’ve really enjoyed it.”

“Thank you for the information during the last six weeks. It’s been invaluable and lovely to meet other members.”

If you are someone seeking a mentor, give BCA a call to discuss your needs, as we may be able to assist in linking you with a suitable graduate mentor.

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