Retina New Zealand Newsletter August 2013 No 58
Retina NewZ
The Newsletter of Retina NZ Inc
A Member of Retina International
From the Editor ................................................................................... 2
From the President’s Desk................................................................. 3
Research News: A free alternative to JAWS ..................................... 5
Tomorrow’s white cane is sounding very smart………………………6
Cataract researcher runs for Retina NZ ............................................ 8
Breast feeding limits AMD…………………………………………………9
Legally blind artist raises $1 million for charity………………….…..10
Retina NZ AGM : who will be speaking this year………………….....11
Meet a Member: Kiran Valabh - succeeding against the odds .......13
Giles Baskett: White Cane - the culture of helping - or not ............16
How 3D printing will help blind “see” paintings ..............................18
Trevor Plumbly: Cane and Able - Eyeing things up ........................19
Undergraduate wins Retina NZ/Ombler Trust inaugural award .....21
Reading and Audio Books play a vital role in well-being………….23
From our Mailbag...............................................................................24
Employment, Groups, Contacts, Branch News ...............................26
Notices ...............................................................................................19
From the Editor
The other day I was shopping, carrying my white identity cane. I used my
cashflow card and as usual, asked the shop assistant if she would enter
“cheque” for me before I keyed in my PIN number. This is because the
machines all vary and I cannot always identify where that cheque key is
located, although I can still find my way around the numbers on the
keypad.
“Get some reading glasses,” she snapped, clearly irritated by my
request. I took a deep breath and explained that no reading glasses
would improve my sight. I try to be polite with those few members of the
public who show no understanding of sight loss. Once we snap back we
stigmatise blindies as grumpy and aggressive which might discourage
future offers of assistance.
On a more positive note I am often astounded by the helpfulness of
strangers. I was recently at a concert in Devonport, Auckland. After
buying a glass of wine during the interval I inadvertently left my coin
purse on the counter. I did not realise I had done this until, ten minutes
later, a woman approached me to ask if the purse she was holding was
mine. She had opened it, found my Total Mobility card inside, and using
the photograph on it moved around several hundred people until she had
located me. Of course not everybody is so saintly as the woman who
found my purse. I do recall blind friend Bill cheering for the wrong side at
a school rugby match. Another bystander threatened to punch Bill’s
lights out. “I’m afraid you’re 50 years too late,” Bill replied mildly.
In this issue two of our regular columnists, quite co-incidentally, both
chose to explore the theme of helping the blind. Gyles Baskett sent us
his thoughts from Argentina and Trevor Plumbly from Ponsonby,
Auckland. Perhaps they will inspire other members to write of their own
experiences and tell us what they find helpful or unhelpful. I do think it is
a tricky business, gauging just how much to offer help to the disabled.
My friends complain that they sometimes do not know when to offer me
help and when it would be patronising. Of course I like to be independent
and don’t want them buttering my toast or treating me like a baby.
It is tricky when it comes to being guided. No matter how many times I
say “I will follow you” and take their elbow as a guide, some friends still
insist on doing it the other way round. They want to take my elbow and to
steer me ahead of them, scarily putting me first into the traffic “No, you
go first,” I insist, but this advice does not always take hold. It may be
ingrained gallantry on the part of some men that they always allow the
woman to go first. What I really appreciate is being told when steps or
uneven terrain are approaching.
This is my last issue as editor of the newsletter. I am hoping to put more
energy into lobbying for more services for the partially sighted. To do
this effectively I need to be able to speak out when necessary, to be free
to critique the RNZFB when I feel it is heading in the wrong direction.
Like other journalists I am concerned about increasing constraints on
making information available to the public and fostering honest public
debate. This is most insidious when plain speaking is replaced by spin
doctor talk, which can make real dialogue impossible.
I have gained a lot from my Retina membership. I have made life-long
friends, found support when I needed it and learned much more about
retinal disorders. My newsletter work has pushed me into grappling with
information about technological advances, whether adaptive technology
or new medical treatments.
I have also had the satisfaction of compiling the newsletter with
production assistant, John Wishart, who has been a pleasure to work
with and Elizabeth East too has been unfailingly helpful.
All the best to readers, to Retina and to our future editor.
Camille Guy
From the President’s desk
Dear Members, Friends and Family,
I recognise that many of you will read this newsletter, attend our public
meetings or call our 0800 LOWVIZ number because you are curious
about, or interested in, the relevance of a new technological
advancement in medical science or in assistive technology.
It is my view that a patient group like ours, as a conduit and advocate for
important messages associated with technology and its rapid
advancement, should take our responsibilities in this area very seriously
and indeed recognise our importance in advancing the interests of those
similarly afflicted now and into the future.
Some of you may be aware that I think we have an obligation to embrace
and promote proven and accessible advances that can genuinely help a
significant proportion of us. In my view, our ability to do this will define
our prosperity. In a world where digital technology developers with
humanitarian values can direct their attention towards people of all
manner of disabilities, where medical science ultimately relies on the
quality of the data acquired from human participants and a world where
our level of independence is now often defined relative to our ability to
interact with contemporary technologies, we can’t realistically expect
others to do so, or to do so in effective ways.
I have an iPhone. It is in no way unique or superior to a range of similar
devices but it allows me to read and write anywhere, anytime. It lets me
verbally communicate in almost any language, it tells me where I am and
where I’m going, it provides a basic verbal description of my
environment and it gives me access to whatever entertainment content I
wish to access or carry with me. But most people I interact with,
including work colleagues and eye health professionals, would assume
smartphones are not for blind people because they can’t see the screen.
If I don’t demonstrate, correct assumptions, provide feedback for
developers, participate in testing, remind content providers of
inaccessibility issues or promote our resulting independence
enhancement in the media then what are the implications for me
personally? What are the implications for us as sight-impaired people
collectively?
In August we will farewell from the executive one of the most dedicated
and valuable contributors in the history of our organisation. Elizabeth
East from the Kapiti coast will be known to many of you for her caring
voice of empathy and pragmatism on the peer support line. Her sector
experience, administrative efficiency and her objectiveness in matters of
governance will be missed at the executive table but she plans to
continue to contribute as a peer supporter in her local area and on the
telephone from time to time.
To our retiring Newsletter Editor, Camille Guy, a sincere expression of
gratitude to you from the executive and the membership. Camille’s
professional acumen and dedication to the objectives and aspirations of
members has been invaluable in recent times and her willingness to
provide guidance to our incoming editor is testament to her kindness
and empathy with fellow patients.
If you are in the Auckland area on Saturday 24 August, it would be great
to see you at our AGM and conference day in Parnell. We have an
interesting and inspiring programme and this will be your best
opportunity to meet fellow members and prospective members this year!
Fraser Alexander
President
Research News: A free alternative to JAWS
Need a screen reader but can’t afford JAWS?
NVDA (Non Visual Desktop Access) is a free screen reader for the
Microsoft Windows operating system. First released in 2006, it is still
being actively developed and improved. The fact that it costs nothing is
obviously of immediate appeal, as commercial screen readers can cost
thousands of dollars. This also means users of NVDA can always be
running the latest version – not lag behind due to the cost of upgrading.
The software was developed in Australia by two programmers – Michael
Curran and James Teh. Both are totally blind, and met at a music camp,
bonding over their self-confessed nerdy computer interests.
Since it is open source, any programmer can examine and modify the
software. Furthermore, that it is a non-commercial product provides
freedom to be fully open about the flaws of the product. A database of
issues is maintained, which anyone can read or submit additions to. This
includes not only problems with the software that are yet to be fixed, but
requests from users for any new features they might want.
NVDA can be used in two ways. The first is simply to install it on a
specific computer. But it can also be installed to a portable USB drive,
which a user can carry with them and plug into, say, a friend’s computer,
making that computer instantly accessible to the blind user. All that is
required is that the computer run Microsoft Windows – from Windows
XP to any later version.
In addition to reading the text on screen, NVDA can report formatting
information like the chosen font style and size. And hover the mouse
over, say, the close window button of an application and the function of
the button is described. There is also support for many electronic braille
displays.
For more advanced computer users, there is support for both the
Windows Command Prompt and the PuTTY program. The latter provides
secure, remote command line access to UNIX and Linux computers via
the SSH protocol.
The software is also being adopted by libraries in New Zealand. For
example, the 20 public libraries in Christchurch have installed the
software.
For those interested in learning to use the NVDA screen reader, New
Zealander Gene Gibson’s website provides useful information. This
includes what programs have been tested with the screen reader. It also
features audio files for download which describe different things that
can be done using the software.
The official NVDA site – www.nvaccess.org – also has its own podcast.
The latest episode covers recent work bringing the ability to work in the
presentation software PowerPoint using NVDA.
Gene Gibson’s website:
http://homepages.slingshot.co.nz/~hurrikenny/index.html
Thomas Graydon-Guy
The white cane of tomorrow is looking and sounding very smart.
A new navigation gadget could soon replace the white cane indoors
The most reliable navigation tool for the blind, the white cane, is set to be
enhanced by a new gadget built by six Curtin University PhD students.
The white cane has been a successful innovation for decades, and by
using special multi-sensor array technology, the Indoor Navigation
Project will enable people who are blind to sense their surroundings
beyond the cane’s tip.
Project leader Dr Iain Murray of Curtin’s Department of Electrical and
Computing Engineering said the gadget would resemble a smartphone
and would sense an entire room’s features, build a virtual map of it and
communicate this to the user.
“A cane is beneficial for going up and down stairs or detecting if
obstacles are right in front of you, but is not capable of telling you if
something is more than a metre or two away,” Dr Murray said.
“What we are developing is a multi-sensor device for people who are
blind, who are also often hearing impaired, to tell them what is exactly
around them from wall to wall.” Dr Murray said five students will each
take on the development of one type of sensor, whether it be sensing the
change of velocity, images or noise.
The sixth student will be responsible for pooling the sensors into one
gadget, which will ultimately contribute towards building a map of the
indoor environment including both moving and non-moving objects.
“While many indoor locations already have a map that people who are
blind can use to find their way around, they don’t allow for change and
can therefore be quite dangerous,” he said.
“For instance, a conference room is forever changing, the chairs are
always set up differently and people will move around. We are
developing a map system that can adjust for these movements, and then
upload this new data to a network for the next person who is vision
impaired to enter the room and use on their own device.”
The five research projects will develop sensors to do the following:
• Determine the direction and distance a user walks whilst indoors along
with identifying features such as stairs and inclines.
• Extract the edges of paths and obstacles using stereoscopic cameras,
classify what they are, and build a map of the environment using image
processing techniques.
• Pick up audio cues to help locate and track moving objects from a
mobile receiver.
• Allow for efficient methods of communicating map and sensor data
across networks, to ensure data is available before a user collides with
an obstacle (in less than 1/6 of a second)
• Enable efficient methods of security and trust within networks, to
eliminate risk of leading the blind into dangerous situations.
Once obstacles are identified, a map will be constructed using a Building
Information Modelling system suitable for the vision impaired, developed
in the sixth research project.
Dr Murray said building owners do not need to put in any infrastructure
for this technology, as the sensors discover everything required for the
map.
Cataract Researcher runs for Retina
On November 3 up to 3,750 runners will run the full Auckland Marathon,
and another 7,250 for the Half Marathon. For some competitors this will
be a return to the marathon track, but runners like myself who are more
comfortable with shorter distances, it will be the first time they have run
so far.
I am an Old Boy of Hamilton Boys’ High School, a graduate of the
University of Auckland, and in April started a PhD in Optometry, where I
study the ocular lens with a view to combating cataract formation (or
‘cataractogenesis’).
I have considered joining a marathon in previous years, and this year
decided to test my comfort zone in the name of a deserving cause:
Retina NZ are the benefactors of my fundraising attempts.
It will be my first marathon, and training for the marathon will be the first
time I’ve run so far. In high school athletics I preferred the 400m event this is short enough that you don’t get tired.
The marathon will require months of training to be completed
successfully. I am aiming for an ambitious time, of within 3.5 hours,
though within three hours would be amazing.
I expect the highlight of the event to be crossing the Harbour Bridge on
foot. The track, similar to last year, starts in Devonport and goes through
Narrow Neck beach and Takapuna before crossing the Harbour Bridge.
Full marathon runners will continue along the waterfront to a turning
point at St Heliers Beach and return to the finish line at Victoria Park.
Donations can be made via the web page I’ve set up:
http://www.fundraiseonline.co.nz/MitchellNyeWood/ or by donating
directly to Retina NZ Research Account - ASB Bank number
12-3013-0845604-51 or contact treasurer@retina.org.nz or 0800 569849
option 3 for more details.
Mitchell Nye-Wood
Breast feeding limits AMD
No, elderly women are not being advised to induce lactation. But
researchers in Norway have discovered that the more months women
spent breast feeding in their child-bearing years, the less likely they are
to develop age-related Macular Degeneration in later life.
A study conducted since 1974 of 40,000 people included a phase where
elderly participants had photographs taken of their eyes. An
ophthalmologist diagnosed those with AMD from those photographs.
Strikingly, 52 per cent of those diagnosed did not know they had late
stage AMD. The researchers concluded this may have been because the
condition had affected only one eye.
The women were then asked about their gynaecological histories,
including age of first menstruation, number of children, time spent
breast feeding and whether they had ever taken artificial hormones.
The only significant correlation was with length of time the women had
spent breast feeding. This effect was “very significant” and meant that
for every extra month spent breast feeding, the risk of developing AMD
was reduced by 20%. Researchers speculate that breast feeding may
affect women’s cardiovascular profile, perhaps reducing blood pressure
on a long term basis.
This study has been published in the British Journal of Opthalmology.
The researchers hope that more studies will be done to investigate this
curious link.
Camille Guy
Legally blind artist raises $US1 million for charity – and he’s only 20.
It would have been easy for Jeff Hanson to mourn at the tender age of 12
when doctors discovered an optic tumor that helped explain why he was
losing his vision, but the soon-to-be philanthropist had a better idea,
reports USA Today.
He became a self-described “accidental artist” showing others how he
saw the world with vibrant illustrations, first on note cards before
moving to canvas paintings and later to designs for dresses.
Seven years later, with roughly 1,300 paintings under his belt, Hanson
has reached a goal originally set on his 19th birthday: to reach $1 million
in donations for charities by the time he was 20. He did it with time to
spare, reaching the mark at the annual Make-a-Wish Gala in North Texas
earlier this year. He turns 20 on September 30.
“I thought it would be good to give back to the world and not use it for
myself,” says Jeff who lives in Texas. He points out the effort was never
actually about the money, but the help it would provide. “My art makes
people happy.”
A large portion of the funds were raised by donating paintings to more
than 100 organisations including Make-a-Wish Foundation, the
Children’s Tumor Foundation and Children’s Mercy Hospital in Kansas
City. Hanson and his family also make sure to keep a small portion to
support Jeff and his business created when he was 17. Make-a-Wish kids
must have a long-term illness and be nominated by physicians. Jeff
qualified after being diagnosed with Neurofibromatosis and optic glioma.
The Hansons renamed the condition CLOD, a bully that would be made
fun of, beaten down and defeated.
“You can pick the pity path and be disabled forever,” says Hal Hanson,
Jeff’s father. “Or you can redefine yourself and find your passion. Focus
on what you can do instead of being the kid down the street with the
tumor.”
Neurofibromatosis is a genetic disorder, making it easier for kids to
develop tumors typically along the nervous system or under skin. In rare
situations, like Jeff’s, the tumor grows on the optic nerve and is treated
with radiation and chemotherapy in extreme cases. The tumor in
combination with treatment left him legally blind, able only to vaguely
see shapes and colours.
Alan Gamis, Jeff’s doctor and the chief of oncology at Children’s Mercy
Hospital in Kansas City, says though a cure doesn’t exist yet,
advancements in treatment have been made.
Jeff no longer has the tumor and he doesn’t let the threat of resurgence
bog him down. Because of his can-do attitude, he has traveled around
the world, met the likes of Elton John and Warren Buffett, and received
many awards. His work has sold collectively at auctions for roughly
$46,000 to $68,000, and his hand-painted dresses have even made it to
the runway.
“We were just sitting at a lemonade stand (seven years ago) and I was
actually crying because I thought that’s all we could come up with,” Hal
Hanson says. “Jeff wasn’t supposed to be an artist. This is so surreal
that I just don’t even know how to interpret it.”
“He’s always doing the right thing and it gets him into the most amazing
experiences,” says John Risner, the president and CEO of the Children’s
Tumor Foundation.
“But it’s his long-term commitment to philanthropy that’s rare.”
Book now to attend Retina NZ Annual General Meeting held this month.
Retina New Zealand Inc invites you, your family and friends, to our 2013
National AGM and Conference on Saturday, 24 August 2013 from
10.30am at Royal New Zealand Foundation of the Blind, Awhina House
Cafeteria (Parkside entrance), 545 Parnell Road, Parnell, Auckland.
Sighted assistance will be provided at the venue.
Programme:
10:30am Retina New Zealand Inc 24th Annual General Meeting
12:00noon – 1:00pm. Lunch provided.
1.00pm – 3:00pm. Three presentations and an ample opportunity for you
to ask questions.
Carissa Sutherland – researcher.
Carissa is the Inaugural recipient of the Ombler Trust/Retina N.Z.
Summer Studentship (full story Page 14). She will give an insight into
how the studentship gave her valuable experiences in researching in a
medical genetic context, in critically evaluating current medical
research, in developing academic writing skills and benefitting from
one-on-one consultation and guidance from a research and medical
professional. Carissa’s research project - an investigation of
genotype-phenotype correlations for patients with mutations in the
ABCA4 gene which is causative in Stargardts disease - may well
facilitate improved management of this condition with new treatment
regimes.
Shireen Ali - “What is available to low vision technophobes - what is
cheap and easy?” Shireen Ali’s experiences with providing rehabilitation
services to low vision and blind people are extensive - Equipment
Services Manager, adaptive daily living and communications instructor,
service coordinator and now low vision therapist leading the RNZFB’s
pilot programme “vision solutions”. Shireen will give some daily living
tips and answer any questions you may have. Shireen will be joined by
experienced RNZFB Adaptive Communications Instructor, Leeanne
Wojtowicz. Leeanne will introduce you to the simplest ways to negotiate
your way around the digital world.
Dr Jo Sims: - Refractive cataract surgeon, Medical Retina and Uveitis
Specialist. As the only ophthalmologist in New Zealand to have full
sub-specialty training in uveitis and the management of ocular
inflammatory disease, Jo currently runs the uveitis clinics for the
Auckland region, based at Greenlane Clinical Centre whilst providing
tertiary care for complicated uveitis patients from across New Zealand.
Jo also has fellowship training and expertise in the field of medical retina
including the management of age-related macular degeneration (AMD)
and diabetic retinopathy. She regularly lectures and provides clinical
teaching to other ophthalmologists and ophthalmology trainees, medical
students, hospital physicians, optometrists and general practitioners
and is a Senior Lecturer for the Department of Ophthalmology,
University of Auckland.
Jo has provided a medical retina service to the Cook Islands on an
annual basis since 2002 and previously spent three months running a
charitable eye clinic in rural India. Jo will speak on her professional
experiences and will answer some basic questions you may have.
After the Retina NZ announcements around 3:00pm, our traditional
informal afternoon tea will begin. We provide sweets, savouries, juice,
tea and coffee. Please RSVP by 22 August 2013 for catering purposes.
Phone Camille on (09) 3787 553 or 0800 569849 and press 5 for
Petronella. e-mail: peersupport@retina.org.nz
Meet a Member: Kiran Valabh – succeeding against the odds
“Text Camille Guy,” a blind man in his 40s commands his iPhone. He
dictates a message and listens as that message is confirmed. He
instructs the phone: “send”. Seconds later I receive Kiran Valabh’s text
message.
Kiran, who I first met on an RNZFB computer training course, is an
inspiration to me. I am in my late 60s and struggle with ever changing
technology. But Kiran, blind for 20 years now, has a good grip on it all.
He also goes out of his way to help others.
“I have always wanted to give back to the community because I have had
people help me in the past,” he says.
As a new law graduate he volunteered at his local Neighbourhood Law
Office. He did the same for Victim Support and for Youthline. He spent six
years as treasurer for Retina NZ. Kiran’s family have been a great support
at Auckland Retina meetings, helping with the catering and hospitality.
Kiran’s story is unusual. At 15 he contracted Lupus, an auto-immune
disease. He was still at Auckland Grammar. The son of Indian immigrants
from Gujarat, (they were only infants when they came here) Kiran was
born and raised in Herne Bay in Auckland. He is the second-born of four
children.
Lupus (SLE), an autoimmune disease, took a heavy toll on Kiran. He
was diagnosed in 1984 and his teenage years were blighted by the illness
and frequent hospitalisations. He suffered from lung and brain
inflammation, rashes and fatigue.
By 1990 Kiran had kidney problems. He had by then completed a
commerce degree at the University of Auckland and was embarked on a
law degree. During his second year at Law School, in his early 20s,
Kiran’s kidney function was so poor that he needed treatment with
Prednisone and a chemotherapy drug. He was in critical care and nearly
died.
Kiran’s eye problems stem from the radical drug treatment he needed to
survive. His blindness is related to toxoplasmosis infection.
On February 17, 1993 (Kiran is remarkably good at remembering dates)
and about to go for a swim, Kiran looked in the mirror and noticed
something wrong with his eye. His GP referred him straight to hospital.
Doctors noted inflammation in both eyes and retinal scarring.
A few weeks later retinal detachment began. In hospital the retina in his
better eye was reattached surgically. But this was not to last.
“By mid-1994 I was basically blind,” Kiran says.
He cut back on the number of papers he was studying but continued his
law degree.
“I needed to stay in the real world,” he says. “I didn’t want to stay at home
and feel sorry for myself and get depressed.”
Kiran tape-recorded lectures and some of his fellow students narrated
texts for him.
Greg Morgan, then a law school librarian, now an RNZFB board member,
noticed Kiran bumping into sliding doors. Concerned, Greg suggested
that Kiran contact the Foundation.
By 1994 Kiran was a full Foundation member. He now uses a long cane.
As Kiran and I talk we compare notes about what we can each perceive in
Kiran’s living quarters in his family home. Kiran still has some light
perception and can see bright colours in sunlight
But like me, he is dependent on adaptive technology to work.
These days he is not reliant on a cassette tape recorder and he no longer
uses a CCTV for reading. Instead he uses a Victor Reader MP3 player, a
smartphone and JAWS screen reader on his computer. He can scan
documents or books and convert the text to speech. At the Blind
Foundation he was taught to touch type.
As a young man Kiran was active and keen on sport. He still swims and
goes to the gym. He completed his law degree “with a lot of support from
family and from friends at university”, he says.
“Homai College and what became Enable was helpful too.”
Kiran travels regularly, usually with friends or family, but occasionally
undertakes side trips on his own
“I like to venture out and try things by myself,” he says. “It is challenging
but the benefit of travelling alone is that I am forced to immerse myself in
the culture and I meet all sorts of people.”
Kiran is still studying, currently for the NZX Diploma. He worked for
around ten years for a property management company. He now does
regular contract work.
Between work and study commitments he is in regular contact with
fellow Retina members and his wide circle of family and friends. He is
active at the gym and enjoys reading poetry and audio books.
He mentions that lately he has enjoyed The Economist online, now
available in audio version. He listens to music and to radio podcasts. Like
me, he has given up on television, but still enjoys occasional movies. “In
terms of reading I am spoiled for choice,” he says.
Kiran’s doctor says his lupus has burnt out. He is on the waiting list for a
kidney transplant, but keeps well and fit and productive. Kiran’s life may
not be the easiest but in many ways it is a very rich one. “My health
issues in the late teens and twenties provided the opportunity to develop
good habits that now serve me well in my life and work,” Kiran concludes
in his typically upbeat and positive way.
Camille Guy
Proof that stem cells repair vision cells hailed a huge leap forward.
The prospect of reversing blindness has made a significant leap,
according to scientists in the UK.
An animal study in the journal Nature Biotechnology showed the part of
the eye which actually detects light can be repaired using stem cells.
The team at Moorfields Eye Hospital and University College London say
human trials are now, for the first time, a realistic prospect. Experts
described it as a “significant breakthrough” and “huge leap” forward.
Photoreceptors are the cells in the retina which react to light and convert
it into an electrical signal which can be sent to the brain. However, these
cells can die off in some causes of blindness such as Stargardt’s and
age-related MD.
There are already trials in people to use stem cells to replace the
“support” cells in the eye which keep the photoreceptors alive. Now the
UK team have shown it is possible to replace the light-sensing cells
themselves, raising the prospect of reversing blindness.
White Cane: The culture of helping – or not. Giles Baskett.
A social anthropologist or a psychologist might give us the answers.
Why do some people immediately offer assistance when they see a blind
person and why others look the other way? You will note I use the word
“blind” instead of ‘visually impaired.”
For the life of me I cannot see what is wrong with the simple word “blind”
instead of two awkward words denoting the same condition. Why use two
words when one is sufficient? Personally I feel no shame in being blind.
In a way, this is relevant to my theme of “Why people no longer offer to
help.”
I think they are so brow-beaten as to how to act with political correctness
that they just opt out and do not offer at all.
Here are three obvious situations where we appreciate help:
1. Crossing busy streets.
2. Help in flagging down our bus.
3. Choosing items in shops.
Yes, we all have waited on a road curb trying to get help from pedestrians
who saunter past as if we do not exist. We all have had that depressing
feeling as we realise our bus has just whizzed past without stopping. And
in a shop we wonder why others pass avoiding us.
Why don’t people like to interact in a gracious, helpful way? It is partly
because they have been hammered about the blind wanting to be
independent but I think this is just an excuse to opt out.
Our society is now fragmented in little nuclear units, individuals who
seek their own goals without regards for others. From kindergarten age,
everybody is brainwashed: be careful of strangers. “Don’t get involved.”
Now let’s look at the small percentage of those who do stop to offer
assistance. In Auckland I find that 80% of those who offer help are
Chinese and Indian. Polynesians in South Auckland are also great! The
white middle class Anglo-Pakehas? Well, most of them just look the other
way.
Why is this? My theory, for what it is worth, is that people from less
affluent backgrounds have a greater sense of family loyalty and
responsibility.
They recognise that in a way we are all one big family. They are used to
helping an older or a disabled uncle or sister and they are very observant
of others around them. It is what the Argentines call “Solidarity.”
How do we improve the situation? Never be afraid to ask for assistance.
When engaging with someone, try to impart as much information as you
can, for example, as you cross the road together let them know your
specific destination, be it a particular shop or bus stop. This often leads
to them helping you more.
Also, do not feel humiliated by asking. 90% of people actually get
pleasure in assisting. Bus drivers have a boring job so they like to break
the monotony by helping you. I find Indians love to talk; the Chinese feel
pride in assisting.
Finally, may I address the recalcitrant group: middle class white New
Zealanders. Some of you, those thoughtful ones who do not hesitate to
help, are wonderful. A special thanks to the young lady who insisted in
running with me across the downtown bus terminal on a dark rainy night
which enabled me to leap onto the Devonport ferry with only a minute to
spare.
Her gesture was spontaneous and intuitive. Bless her! I remain forever
grateful.
How 3D printing could help blind “see” paintings with their fingertips.
Constantine Tarabanis, a Harvard sophomore, is sighted. But back in
Greece, where he grew up, Tarabanis worked with the visually impaired
community for several years, volunteering at a school for the blind in
Thessaloniki.
He became close friends in particular with a young man named George.
Close enough, in fact, that Tarabanis began to feel a gulf when trying to
communicate experiences only a sighted person can have - like seeing a
painting, for instance, reports Fast Company website.
Tarabanis had George in mind last semester when a roommate came back
from a class carrying several 3-D printed objects. The light bulb went off:
what if there was a way to use 3-D printing technology to somehow
“translate” paintings into a form the blind could appreciate?
Tarabanis and several other roommates began applying themselves
wholeheartedly to the idea (never mind that Tarabanis is ostensibly a
molecular and cellular biology major). They began to design a system that
would create “tactile representations of paintings”.
Using a combination of computer aided design software and 3-D printing
technology, Tarabanis and his partners believe it should be relatively easy
to create what he calls “two-and-a-half-D models” of paintings. You would
“protrude the image,” he says - similar to the sculptural technique known
as relief.
They called their idea “Midas Touch,” evoking the tactile nature of the
project, while also paying homage to the Greek heritage of Tarabanis and
one of his partners on the project, Vaios Triantafyllou. (Other team
members are all in Harvard’s class of 2015.)
Representations of the “Mona Lisa” or “Starry Night” already line the walls
of art aficionados everywhere, in poster form. Tarabanis’s team wants to
bring the age of mechanical reproduction of art to the blind as well.
Two-and-a-half-dimension paintings could form part of the special
education wings of museums, or even accompany textbooks on art for the
blind. Currently, says Tarabanis, much art education for the blind is often,
understandably, somewhat rote - remembering if Michelangelo preceded
Da Vinci, or vice versa.
Tarabanis’s team recently won some seed money to develop their idea
further; they’re now finalists in the Harvard Deans’ Challenge for Cultural
Entrepreneurship, hosted by the university’s Innovation Lab.
As finalists in the Harvard challenge, the Midas Touch team has already
scooped up $5,000 in funding (should they win the grand prize, they’ll
wind up with $75,000). They ordered materials with the money and
planned to have a working prototype of their design two months ago.
“You go online and see people 3-D printing a gun,” says Tarabanis. “We’re
wondering why people would be allocating resources this way when
there’s clearly a more socially responsible way this technology can be
used.” In fact, the Midas Touch team thinks 3-D printing is just the
beginning when it comes to translating paintings into something the
visually impaired can appreciate. The team is also interested in creating
pressure-sensitive regions that would furnish audio commentary when
pressed.
Over Christmas break, Tarabanis returned home to Greece, and went to
see his friend George. He pitched him Midas Touch. “The thing I was most
happy about,” says Tarabanis, “is he seemed really excited about it. He
himself wanted to test the idea.” Seeing that excitement was all Tarabanis
needed to press forward.
Tarabanis sometimes likes to cite a quote by Esref Armagan, a
congenitally blind Turkish man who, remarkably, taught himself to paint. “I
do not know if the things I make are beautiful,” he once said, “I only know
the reactions of others.” Midas Touch, says Tarabanis, “would help him
understand why his paintings are beautiful.”
Cane and Able: Eyeing things up.
Trevor Plumbly.
I’ve reached the conclusion that a lot of folk have a problem when they
encounter someone with an obvious disability such as blindness. I guess
I’m lucky having some sight remaining but not enough to function well.
It’s an odd feeling, half dependent and half not, trying not to resent the
former at the same time as clinging on to the latter.
But it’s a bit of a mixed blessing. On the one hand it’s nice to be able to
struggle through a book or a crossword puzzle, but on the other hand it
does sometimes induce false confidence, which all of us know can be
quite dangerous. Another interesting aspect for me is being able to see
peoples’ reactions when dealing with blind people. I continue to enjoy a lot
of happy and funny encounters but naturally a few I find intensely
annoying.
Footpaths are always a problem, I don’t really expect to have one all to
myself but some cyclists on Ponsonby Road seem to regard the footpath
as a personal cycle track, and since we can’t see or hear them surely it’s
only a question of time before a serious injury occurs. More than being
inconsiderate, this is the worst form of arrogance. But of course like a lot
of things in life for blindies, walking around is a bit of a mixed bag out
there for us, and in my wanderings there’s certainly been no shortage of
people anxious to help.
But since I enjoy a good moan lets start with the little things that really
grate. Bus drivers who insist that you take your ticket, which I’d be happy
to do if I knew where the damn ticket was. People offering to help speaking
in a slow monotone, as if my brain was impaired rather than my vision.
Those who freeze in their tracks at the sight of someone with a white cane
approaching - please walk round me rather than act like a deer caught in
the headlights. Those who address their conversation to a sighted person
if I’m with one, I’m not deaf as well folks and it’s a real joy feeling like a
spare part. Skateboarders all. (scary). People who make a gaff such as
“look at that!” then apologise. It’s my sight that’s faulty folks, not my
sense of humour.
But my personal bugbear is.... THE HOVERER!. Hoverers aren’t something
out of a horror novel, quite the contrary, they’re usually kind people who
sincerely believe that because you’ve got a sight problem there’s little in
life you can achieve independently. The bad news is that there’s a lot of
them. Domestic hoverers work at close range - they simply can’t cope
watching one of us washing up or ironing, chronic hoverers can snatch
things out of your hand in mid-fumble. It’s almost a silent command to sit
down and wait for appropriate, safe little tasks to be delivered? Not bloody
likely!
Wild hoverers usually lurk around street corners and pedestrian
crossings.Their sole mission in life seems to be to help us across the
road, I’ve found its easier to agree whether I want to cross or not, it seems
to makes them happier and anyway there’s sure be another one at the next
corner to help you back over.
But even for a grumpy old bugger it’s not all gloom, there are bright spots
to report. Air New Zealand staff can take a bow, unflaggingly helpful in a
professional, polite way without condescending. Harrison and Graham
Optometrists in Jervois Rd. Auckland. If you’ve forgotten what the term
‘professional service’ means, give them a visit, always friendly and always
helpful.
Most bars are friendly and helpful but Justin and Co. at ‘The Franklin’ on
Ponsonby Road stand out along with Shane at Sliders just along the Street
for making you feel comfortable. Staying on Ponsonby Road ‘Bouno’
pasta restaurant in Three Lamps is worth a call. If there’s a happier, more
helpful waitress in the city I’ve yet to find her and the food is good too!
Finally - on a personal note - my blogging mates Emily and Angela for the
words and the fun we all share. You can visit us on verbalberbal.com we’d enjoy your company.
Undergraduate wins inaugural Retina NZ and Ombler Trust award
At the end of the Summer I had the opportunity to award our Retina NZ
and Ombler Trust Summer Studentship award to Carissa Sutherland, an
MBChB student at Auckland University.
Seven students were congratulated on their achievements as part of the
Ophthalmology Department’s annual Excellence in Ophthalmology &
Vision Research Awards. The student awards included a collection of
summer studentships, postgraduate scholarships for overseas studies,
and the top ‘all-rounder’ in clinical ophthalmology was awarded the
Calvin Ring medal.
The awards evening took place at the Faculty of Medical and Health
Sciences at the Grafton campus in Auckland. Professor Charles McGhee
superbly chaired the evening, and it was nice to also have an opportunity
to speak to Assoc Professor Bruce Hadden and Dr Wendy Hadden over
nibbles and wine, as well as learn of the work of the Fred Hollows
foundation in Papua New Guinea. Primarily though, the spotlight was on
the upcoming shining stars of ophthalmology, and it is plain to see the
dedication, passion, and extraordinary work the students put into their
studies.
Carissa is the first recipient of the Retina NZ and Ombler Trust Summer
Studentship award. It is open to undergraduate students keen to
participate in the summer studentship programmes offered in
ophthalmology and optometry at the University of Auckland and the
University of Otago.
In her third year of studies, Carissa worked under the supervision of
senior lecturer Dr Andrea Vincent in investigating the ABCA4 gene. This
gene was first cloned and characterised in 1997 as causing Stargardt
disease, an autosomal recessive disease that causes macular
degeneration. Stargardt disease is the most common inherited disorder
affecting central vision, and symptoms can begin in early adolescence.
As Carissa explains, “The ABCA4 gene codes for a transporter protein,
which pumps waste products out of the photoreceptor cells at the back
of the eye. If the pump is not working properly, or as well as it should,
then these wastes accumulate, eventually damaging and killing the
cells”. She adds that once they have died, no more of these cells are
produced.
Retina NZ has partnered with The Ombler Trust to establish this award.
The Trust was established around 15 years ago with the core objective of
funding scientific and medical research leading to treatments for people
with retinal disorders.
The Trust supports researchers in this area at all levels within New
Zealand universities and hospitals. Further information about the award
can be found on our website (www.retina.org.nz), and students
interested in submitting an application should email our President,
Fraser Alexander.
It is a pleasure to support Carissa in her studies and we wish her all the
very best. Her future plans are to first complete her studies, and she will
be using the next few years’ clinical placements to help make a decision
regarding what specialty she would like to pursue.
Carissa will be one of three guest speakers at our Annual General
Meeting on Saturday the 24th of August, where she will speak about her
studies. To find out more about the AGM or to RSVP your attendance,
please contact Petronella on 0800569849 option 5.
Zoe Hill
Reading and Audio Books play a vital role in well-being
Reading is a lifeline for blind people according to recent research reveals
that reading plays a vital role in the lives of blind and partially sighted
people, helping them to overcome daily challenges, boosting mental
well-being, enabling them to develop learning and skills and providing
opportunities for social contact through reading groups. This research
was published on the eve of Read for RNIB Day, the charity’s appeal to
raise funds for services such as braille, giant print and Talking Books.
“I believe I would go insane without reading for pleasure. I really do. It’s
that important,” one survey participant told researchers. (Sarah, aged
50-64 years, England.)
According to this new research into the impact of reading for pleasure
on the lives of blind and partially sighted adults 82 per cent of the people
said that reading for pleasure was ‘very important’ in their lives, whilst 95
per cent read for pleasure more than once a week, with over half (55 per
cent) reading more than ten hours per week, figures which appear to be
considerably higher than the general population.
The research was commissioned by leading sight loss charity the Royal
National Institute of Blind People (RNIB) to mark Read for RNIB Day and
conducted by The Reading Agency, the charity working to inspire more
people to read more, and LISU research and information centre at
Loughborough University.
Linked to its impact on quality of life and well-being, the new research
also reveals that reading plays a significant role in helping blind and
partially sighted adults cope with life’s pressures, including significant
moments such as bereavement; engaging them in meaningful activity
that passes the time, occupies the mind, and represents a stimulating
alternative to activities that are no longer easy or possible to undertake.
Avril believes reading “keeps me completely in touch with who I am”.
Now 60, she was in her early forties when her sight began to change as a
result of macular dystrophy in both eyes. She felt that people’s
perceptions of her changed, but reading is “the one thing I hold on to.
I’ve had to change things or give up things but reading keeps me in
touch”.
The recommendations of the report centre around ensuring that authors,
publishers, RNIB, public libraries and local authorities all work and
collaborate wherever possible to ensure that appropriate materials are
available in a variety of formats including, for example, text-to-speech
enabling on e-books. The research also indicates the importance of
accessible presentation of reading material to enable selection without
sighted assistance and the value of library reading group provision as a
significant social, well- being and learning experience for blind readers.
It also recognises the importance of library services continuing to build
on the valuable framework provided by Six Steps to library services for
blind and partially sighted people, in particular, building the needs of
blind and partially sighted readers into the organisation of reading
events and promotions.
Lesley-Anne Alexander CBE, chief executive of RNIB, says: “So many of
the people who come to us are at breaking point, struggling to adjust to
living without sight. And often it’s our reading services such as Talking
Books, giant print books or telephone book groups that people
undergoing this traumatic and life changing transformation describe as
a lifeline.”
From our Mailbag
Elva Robert was inspired by a contribution to our newsletter some
issues back by Lynley Hood
In my sixties, I was waking to a fading world, a “crooked” world with
broken fences (so I thought). No straight lines anywhere. An odd world. I
coped, recognising the introduction to AMD.
I so agree with your article by Lynley Hood, having gone through exactly
those frustrations, depressions and despair. No reading, no driving,
unable to see people when out so withdrawing from socialising to the
extent of “wishing I was more advanced with AMD to become a RNZFB
member”. Sad to have to wish that.
My luck changed when I found a low vision consultant at Sight Loss
Services in Auckland who helped me face myself. My computer became
my friend, with the help of this service, to enable all to be readable again.
I was lucky, but not all AMD sufferers have found this service yet.
Then came the day I could become a member of RNZFB and my life
became a pleasure. Depression evaporated. I was able to have half price
taxis and venture out, even just to be amongst people. I was still unable
to shop, but then online shopping became my weekly pleasure. Now
being a member, I had access to the RNZFB library of talking books and
once again I took pleasure losing myself in ‘reading’ with audio books,
postage-free.
Then the Foundation rang offering ‘meetings’ to meet others with AMD;
lessons to help with make up; money handling, magnification classes,
on it went, a wonderful service for the low vision people, so needed, and
sadly just the “lucky” (low vision loss!) few who could have this access.
All around are more elderly people, despondent, depressed, just wishing
as I did, to “become worse” to have help and the company of the
similarly afflicted. The phrase “Donations needed” is no longer just
words as more donations mean more services to help the elderly enjoy
their later years and use their remaining vision. Lynley Hood wrote what
we AMD people all cry out for - thank you Lynley.
Postscript: Now I have progressed much further, finding more and more
modern technology which is so wonderful. I have MAGIC on my
computer which reads to me! It enlarges to huge when needed. Audio
books are my sanity savers. We are so lucky these days, with so much
help available, It will always be a crooked, shaded, and too bright world,
but with AMD there will always be peripheral vision, again we are so
lucky. I realised this more when meeting the totally blind; the positive
approach they have, and wisdom they can pass on to us AMD folk.
Elva Robert
Auckland
Retina NewZ seeks a New Editor
Retina New Zealand seeks the services of a newsletter editor for its
quarterly publication (readership 500). Your audience will include people
with retinal dystrophies, their families, opthalmology and optometry
professionals and rehabilitation providers.
The content of the newsletter will include scientific and opthalmology
research news, strategies for coping with sight impairments, Retina NZ
activities and items of general interest to the RNZ community such as
profiles of our members. The editor will ideally be proficient at MS Word
and internet applications, can work to timelines, and can compile and
write accurately and concisely. An interest in scientific and medical
research would be an advantage, along with a knowledge of the blindness
community.
Expressions of interest including a brief covering letter and CV should be
sent to: president@retina.org.nz by 4pm on Friday, 23 August 2013.
Branch News
Kapiti VIPs
This year our monthly meetings on the third Monday of each month have
generally attracted 24 to 30 people. Tips and practical information about
living with a visual impairment are shared at each meeting and we often
have a guest speaker.
Topics covered recently include: eating for good eye health; the life of
someone working at Parliament; supplements for eye health;
magnification and speech reading options for your computer.
In June on a stormy day, 24 people came to the mid-winter luncheon with
entertainment provided by a local ukelele band.
If you would like to join this friendly support group, please contact
Elizabeth East on (04) 299 1800.
Dunedin VIPs
VIP meetings in Dunedin are going well. We have a regular group of
attendees and numbers have increased recently with Lynley Hood’s
creation of VICTA (Vision Impaired Charitible Trust Aotearoa).
We meet regularly at Dunedin Public Library, 4th floor Dunnington Suite
on the 4th Wednesday of every month at 1.30pm. We are currently
working with the public library on a public awareness project and have
formed an IT support group to seek support for vision impaired to join
the modern IT world.
Contact Karen Manning (03) 455 2207
Waikanae VIPs
Waikanae VIPs meet on the first Monday of every month unless the first
Monday is a Public Holiday and then it is on the second Monday. It is
held in the Cameo Rooms (Pop-in Centre) on Mahara Place. Our average
attendance is 17 -18 people and we have the assistance of two ladies
who volunteer at the Centre.
In the last quarter we have had a general discussion day where three
people discovered they had the same uncommon eye condition and
realised they weren’t on their own. One guest speaker, a totally blind
man, spoke about train journeys in NZ and in July we had a mid-winter
Christmas celebration. We were entertained by the Kapiti Village
Strummers who played their ukuleles and had toes tapping all around
the room.
Generally we are a very happy group and enjoy meeting our friends
every month.
Sue Patterson (04)293 5174
Have you paid your Retina NZ subscription?
Thank you to all members who have paid their subscriptions after
receiving the membership renewal notice which was included with the
May newsletter, or posted out separately to those receiving an audio or
email version of the newsletter.
We are pleased that over 40% of the payments received to date have
been submitted electronically or made at an ASB branch. This saves us
time. If you have not yet paid, we would appreciate receiving your
payment as soon as possible as your 2013/14 subscription is now due.
Payments may be made electronically (by phone or internet banking),
over the counter at your local ASB bank or by cheque. When making an
electronic or branch payment please put your surname and initial in the
reference column. The Retina NZ bank account number is:
12-3013-0845604-00.
If you have mislaid your renewal notice, please phone 0800 569 849
option 3 to request that our Treasurer, Mike Smith, send you another
one. We look forward to receiving your payment soon.
Contact numbers for Retina NZ have changed
A general administration line has been established on 0800 569 849 (0800
LOW VIZ).
All members of the Executive and the Newsletter Editor may be
contacted via the general administration phone number.
Anyone dialling 0800569849 is greeted with the message…Welcome to
Retina NZ...
To speak with our president Fraser Alexander press 1
To speak with our vice-president and small groups coordinator Sue
Emirali press 2
To speak with our treasurer Mike Smith press 3
To speak with our membership officer Elizabeth East press 4
To speak with our peer support officer Petronella Spicer press 5
To speak with our retina youth coordinator Zane Bartlett press 6
To speak with our awareness & publicity officer Linda Bartlett press 7
To speak with our administration secretary Lyn Morgan press 8
To speak with our newsletter editor press 9
The peer support and information line will continue on 0800 233 833. This
line will continue as the first point of contact for people seeking
information or wishing to talk about eye conditions. The 04 299 1801
number has been closed.
Retina Groups
Retina NZ aims to establish support groups throughout the country.
Anyone with any level of sight loss or an interest in sight loss is welcome
to attend.
Our groups provide friendship, information and support.
Our Small Group Co-ordinator is
Sue Emirali (04) 298 4028.
Local contacts are:
Auckland Group: Zoe (09) 638 5154 (evenings only) or Fraser (09) 638
5048 (evenings only)
Hamilton Group: Mike (07) 560 0266
Tauranga VIPs: Sara (07) 570 0917
Hawkes Bay Group: Linda (06) 844 5993
Otaki VIPs: Maxine (06) 364 6640
Waikanae VIPs Genevieve (04) 293 6158
Kapiti VIPs: Elizabeth (04) 299 1800
Newlands VIPs: Gael (04) 970 3575
Christchurch: Petronella (03) 338 1559
Dunedin VIPs: Karen (03) 455 2207
Retina NZ – The First 25 Years – stories and photos required
The August 2014 Retina NewZ will feature an article about the history of
our society.
Kay McKenzie wants people who were involved in the early days to
contact her to share any memories they have and to help her check her
facts.
Photos would also be welcome if you think they would be of interest to
members.
Contact Kay by phone on 04-567-5732
or by emailing
editor@retina.org.nz
with “for Kay McKenzie” in the subject line
Mission Statement
To promote public awareness of retinal degenerative disorders;
To provide information and support; and to foster research leading
to treatment and an eventual cure.
Editor
Camille Guy
Phone: 0800569849 opt. 9
Email: editor@retina.org.nz
Peer Support Coordinator
Membership Officer
Elizabeth East
PO Box 2232 Raumati Beach 5255
Telephone: 0800569849 opt. 4
Email: membership@retina.org.nz
Please note: The deadline for articles for the summer issue is October
15th 2013. If you are planning on sending in an article or letter for the
newsletter could you please inform the editor before this date so room
can be set aside for it.
The opinions or position expressed in articles are the author’s own
views and do not necessarily express the policy or views of Retina New
Zealand Inc.
To order:
Email Newsletters:
Please ring 0800 233 833 if you would like your newsletter emailed
to you. Tape Newsletters have been replaced by CD newsletters:
Please ring 0800 233 833 if you require your newsletter on CD and
advise if you also require a print copy.
If you wish to contact Retina NZ please use the above contact
details or ring us on 0800 233 833 or email as above.
Publications
Coping with some sight loss or a degenerative retinal condition
Supporting people with retinal degenerative disorders
Detached Retina - a matter of urgency
Take the Amsler Test - a self testing card for early detection of
macular degeneration.
Members can obtain these brochures free from the Membership
Officer by ringing and requesting the ones you require. A charge is made
to non-members to cover printing and postage.
Retina New Zealand Inc is grateful to the Royal New Zealand
Foundation of the Blind for funding the printing of this newsletter.
Retina New Zealand would like to thank the New Zealand Lottery
Grants Board for helping to fund this newsletter.
Do You Need Help or Advice?
The Retina NZ Peer Support programme is a free and confidential service
operating nationwide. To make contact with one of Retina New Zealand’s
peer supporters telephone 0800 233 833. All calls are treated in strictest
confidence.
Ring any of the following free-phone numbers if you want to speak to a
geneticist or genetic counsellor about your own diagnosis of RP,
macular degeneration or other retinal degenerative disorders.
Auckland Genetic Hotline (Northern Regional Genetic Service)
0800 476 123 or 09 307 4949 ext 25870
Wellington Genetic Hotline 0508 364 436 or 04 385 5310
Christchurch Genetic Hotline 0508 364 436 or 03 379 1898