The magazine of Deafblind UK - putting you in the picture
Summer 2015
Inside:
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Focus on digital inclusion
Breaking the Silence by Jo Milne
Royal Garden Party
p21
2
Editorial
What’s inside
7
News:
25th Annual General
Meeting
Celebrating 100th
birthday
Subaru Owners
Ireland Charity Car
Run
Life Walks scheme
Ikea launches wireless
charging furniture
35
Regional focus
36
Tommy and Dan’s
visit to Brighton
Editor:
David Evans
Email: davidguidedog145
@btinternet.com
Production:
Jo Rohman-Johnson
Email: jo.rohmanjohnson
@deafblind.org.uk
Tel: 01733 358 100
Design:
Tonic Media
Published by:
Deafblind UK
© Deafblind UK 2015
A word from
our Editor
Hello members,
As the old song said way back
in the early 60's ‘the times
they are a changing’. It was
with some very personal
sadness that I learned of the
decision of Dr Rosemary
Sandford to retire as the Chair
of Deafblind UK. Speaking
from my own personal
Editorial
recollections, Rosemary has
been the Chair of the Board
of Trustees for many years
and has steered the
organisation through some
very difficult times.
Looking back over the past
few years, Deafblind UK is a
very different sort of
organisation now to what it
once was. We are now
reaching a far wider number of
members with the current
projects that we are
undertaking.
deafblind people on a daily
basis are very close to my own
heart. I will continue to work
with passion to ensure that
our staff and volunteers have
the right level of skill to
communicate with, and assist,
both old and new people
joining our family. I also aim
to work to give individual
members the freedom and
choice to live in the
community with the best
quality of life and the support
that they need.
Since Dr Sandford took over
the role of Chair at Deafblind
UK, I have been the Vice Chair
working closely with the team
and have a very wide and
varied experience of the
voluntary sector. At a meeting
in March 2015 the Trustees
decided to appoint me as the
new Chair of Deafblind UK.
Speaking for myself, I feel
very privileged to have been
offered this role and as the
Chair of the organisation it
falls to me to edit the contents
of Open Hand amongst my
other duties.
Some of the issues that affect
Dr Rosemary Sandford
3
4
Editorial
Staff training
I have started working with
members of the Head Office
team to train the new staff
who are joining us. Most of
these new staff are working
with people in the local
community.
Very few people of working age
will not know that Personal
Independence Payments are
starting to be rolled out across
the whole country and now
replace Disability Living
Allowance for people under the
age of 64.
As part of my role, I'm working
with colleagues to ensure that
this process goes as smoothly
as possible for our members.
Once again, Open Hand is full
of articles and information
which I hope you will find
interesting and informative.
With both autumn and then
Christmas not being very far
away, we will need something
to give us a final boost in
preparation for the remaining
year ahead. I look forward to
updating you in the next issue.
Best wishes
David Evans, Chair
Chief Executive’s Report
A thank you to
our colleague
and an update
about our
recent work
I hope that you have enjoyed
the summer sunshine and any
recent holidays that you have
all been having. I would like to
extend my thanks to Dr
Rosemary Sandford, our
previous Chair of Deafblind
UK. Dr Sandford has guided
the organisation with passion
and determination, serving our
deafblind members by being a
member of our Board of
Directors since 2000. Dr
Sandford has also been the
editor of Open Hand magazine
for over 11 years. We all thank
her for the support and service
she has given to improve lives
for people with deafblindness
and wish her very well in the
future.
So far, 2015 has been a very
busy year for Deafblind UK.
Our Outreach Team in Greater
London has been making great
strides in their work to support
older deafblind Londoners like
our member Martin who is
coming to terms with the loss
of his beloved wife.
As always, our army of
volunteer befrienders across
England, Wales and Northern
Ireland, are making an
immediate and positive impact
by providing invaluable
support to our members who
are isolated and excluded from
day to day life.
Our network of 44 deafblind
social groups provides an
environment where people can
come together to enjoy
companionship, take part in
tactile activities such as cakemaking, benefit from
5
6
Chief Executive’s Report
stimulating outings and
receive important information
to improve their lives. Our
groups make a significant
difference. One member told
us, “How nice it is to sit at a
table with other people and
have lunch and not be alone. I
have eaten more sitting here
than I would have in my own
flat. I would have thrown half
of this away.”
We are also extremely proud
to provide bespoke services to
our war veterans who now live
with combined sight and
hearing loss. Members such as
John, who is 90 years old, with
dementia and sight and
hearing loss. He came to life
when Tim Locke (our Digital
Inclusion Officer) showed him
what an iPad was capable of,
using screen magnification. By
using iMaps Tim was able to
trace John’s route all the way
from Normandy to Berlin
during WWII. In spite of his
dementia, this evoked
memories for him of
abandoned farms and food
parcels parachuted in over the
Rhine. Tim was also able to
trace John’s childhood years
and found the Dr Barnado
home he was brought up in as
an orphan. This remarkable
connection completely made
John’s day.
With support from funders we
have been able to make new
improvements to our respite
holiday caravan where
members are able to enjoy an
accessible seaside break on a
beautiful, award-winning site
in Hopton, Norfolk.
We are also very pleased that
our new Outreach Officer for
the Yorkshire region, Claire
Baldwin is in post and up and
running. Claire will provide
home visits, social welfare
assessments and volunteer
pairings. Claire will also be
working closely with local
agencies so that even more
people with combined sight
and hearing loss are linked
into Deafblind UK and all we
can offer.
I hope you have a lovely start
to autumn and as we move
towards the end of 2015, I
look forward to updating you
again very soon.
Very best wishes.
Jeff Skipp, CEO
Deafblind UK News
25th Annual
General Meeting
Members of Deafblind UK are
invited to attend the 25th
Annual General Meeting of
Deafblind UK on Wednesday,
7th October at 10.30am.
Refreshments will be provided
at 11.15am. The meeting will
be held at The National Centre
for Deafblindness, Cygnet
Road, Hampton, Peterborough,
PE7 8FD.
The AGM is a business
meeting reviewing company
accounts. Members who would
like to ask questions, across
other topics, should send
these in writing no later than
Monday, 5th October, within
48 hours of the AGM.
Responses will not be provided
to questions received after this
point.
Unfortunately, we are unable
to reimburse travel expenses
for members or carers who
attend the AGM.
Agenda
1. Welcome from the Chair of
Deafblind UK
2. Apologies for absence
3. To receive and approve the
minutes of the 24th AGM
4. To receive the audited
accounts and annual report
for the period 1 April 2014
to 31 March 2015
5. To appoint and agree the
remuneration of auditors for
the period 1 April 2014 to
31 March 2015
6. Election of any Directors
7. Any other business
If you are planning to attend
the AGM and would like a copy
of the meeting papers in your
preferred format, please
contact Lena Hartley on:
[email protected].
uk or 01733 35810, ext:
243 by 30th September.
7
8
Deafblind UK News
Humanware Brailliant for sale
One of our volunteers has a
Humanware Brailliant
Generation 1 machine
manufactured by Baum for
sale. The machine has 64 Cells
and just has Braille display
functionality but no Braille
input functionality.
It is eight years old but has
only been used for the first
three years after purchase. It
has not been used for the last
five years but has been stored
safely away.
Our volunteer would like to sell
the device for £1,250.
Please contact our Digital
Inclusion Officer, Tim Locke on
01733 358100 or email:
[email protected]
for more information.
Deafblind UK News
Member at our Newport
deafblind group celebrates
his 100th birthday
Trevor Wigmore was
surrounded by fellow members
of our social group in Newport
for his celebrations.
Trevor is partially sighted and
has difficulty hearing. Tea and
cake were provided to all
those who joined in the
festivities and marked this
fantastic occasion. Trevor had
a lovely and very special day.
Our Newport group meets
monthly at the Salvation Army
on Hill Street in the town
centre and work with guest
speakers, take part in
activities, go out on trips and
connect with each other.
Anyone interested in joining
the group can contact
Rhiannon Crocombe, our
Senior Outreach Officer by
emailing
rhiannon.crocombe@
deafblind.org.uk or calling
07827 309770.
9
10 Deafblind UK News
Royal Garden Party by
Deafblind UK member,
Dawn Stopper
and I to take full advantage of
the days proceedings (though
a few hats were blown across
the lawn in a strong breeze!).
We enjoyed exploring the
lovely gardens with a
summerhouse, lake, temple
and urns. We viewed with
amazement part of the interior
of the palace, listened to two
beautiful brass bands and
indulged in an amazing array
of delicious sweet and savoury
delicacies, ice creams and
drinks.
Our member, Dawn Stopper
recently attended the Royal
Garden Party at Buckingham
Palace with her husband, Mike
on behalf of Deafblind UK.
Dawn said: “I had a wonderful
day and the weather was kind
to us, enabling my husband
The highlight of course was
seeing Her Royal Highness the
Queen (and how tiny she is!),
the Duke of Edinburgh, Prince
Charles and Camilla, Prince
Edward and Sophie, Beatrice,
Princess Anne and many other
Royal family members in close
proximity!
What an honour to be part of
this colourful spectacle of
fashion, tradition, celebrities
and VIP’s. Wow, a fantastic
day to remember indeed.”
Deafblind UK News 11
Subaru Owners Ireland
Charity Car Run
Subaru Owners Ireland hosted
a car run in support of a local
Deafblind archer. John
(Johnboy) Nicholl, who is
profoundly deaf and severely
visually impaired, achieved 3rd
place in the recent British
Indoor Championships and has
competed in the British
Outdoor Championships.
Johnboy also hopes to
compete in two important
competitions early in 2016,
which will hopefully allow him
to compete in the World
Championships later in 2016.
Johnboy says “My ultimate
goal is to compete in the
Paralympics, possibly in Japan
2020”.
Johnboy, who is currently
ranked 3rd in the UK, has to
self fund all his archery
activities, which give him a
tremendous focus in his life,
and Subaru Owners Ireland
are proud to support such a
dedicated athlete and worthy
cause.
Norman McCudden, Project
Manager for Deafblind
Northern Ireland explained “It
is a costly activity for a
deafblind athlete, with a
combined sight and hearing
loss, because of the extra help
they need in getting around
and communicating with
others. It takes a team of four
people for Johnboy to train in
between competitions and to
travel and compete at the
actual championships. We are
extremely grateful to Subaru
NI and the Subaru Owners
Club for supporting our
member in this way. It will
make all the difference to his
chances of success”
“We admire John’s talent,
dedication and hard work” said
Alastair Kerr, Regional
Manager of Subaru NI. “We
are delighted to be involved
with such a worthy local
cause. We will do all we can to
help Subaru Owners Ireland
maximise fundraising from this
event and Johnboy to realise
his Paralympic dream”.
12 Deafblind UK News
Life Walks scheme in Epping Forest
Deafblind UK is working with
Epping Forrest Council. They
have developed a scheme for
people who want to get out
and about by taking short
walks in the countryside which
in turn improves their health
and well being. Co-ordinator
Karen Murray is looking to find
local volunteers to get involved
in Life Walks because the
scheme has been so successful
it is now attracting over 100
people per week.
Karen says: “We don’t just
need people who can walk fast
and be a front leader, we also
need people to walk at a
steadier pace to guide slower
walkers around the route and
we especially need volunteers
for walkers with specific needs
such as the deafblind, those
who are visually impaired or
those that have Alzheimer’s.
We have several people on our
waiting list who would love to
be able to come to the walks,
just once a week or even every
other week, but they need the
support of a guide who is
willing to give up a couple of
hours of their time to walk with
them or transport them to and
from the walk”.
All volunteers will be given
deafblind awareness training
and guiding training by
Deafblind UK, if the person
they are supporting is deafblind
or has a visual impairment. At
a later date they also have the
chance to attend a recognised
first aid course.
For more information about Life
Walks or about becoming a
volunteer leave your details for
Karen on 01992 564222 or
e-mail kmurray@
eppingforstdc.gov.uk
News 13
New Bespoke
Blue Badge Wallets
free timer clock and are made
in the UK. The exclusive
‘Hologram Safe’ feature means
they comply with the
Department of Transport’s new
guidelines. The Hologram is
not behind plastic, or rubbed
when taken out, so permits
are displayed legally and
protected from damage.
The Blue Badge Company
have produced a new range of
over 60 designs of wallets to
keep your Blue Badge
(disabled parking permit) safe
and water proof. The extensive
range of compact and easy to
use wallets offers plenty of
choice. All wallets come with a
The wallets are designed to
store and protect the
European Blue Badge parking
permit and makes it easier to
display the permit clearly on
the dashboard of your parked
vehicle. With your badge and
timer stored conveniently
together, they are easy to find
within your car or bag and are
at less risk of sliding out of
view and incurring a parking
fine.
Visit www.bluebadgecompany.co.uk wallets to view the full
range on the Big Badge Company website and add voucher code
BAT15 to get 15% off all products.
14 News
Deafblind drivers try out
motor racing in Poland
19 deafblind drivers took part
in a race on the tarmac of the
Lodz airport in central Poland
recently.
"Out of the 19 participants, 12
had never driven a car before,
whilst seven used to drive
before they became deafblind"
said Mateusz Kotnowski, from
Poland's Deaf and Blind Aid
Society (TPG).
"Some are completely deaf
and blind. Those who can still
see or hear a little wore masks
and helmets to ensure that
there was an equal playing
field for all," he said.
Each participant had to
complete two timed laps of the
circuit under the watchful eye
of a co-driver. In the run up to
the race they had two days of
training to get a feel for the
steering wheel.
Three driving schools donated a
free practice car park, five cars
and a handful of instructors who first learnt touch based
communication techniques to
communicate with the drivers.
When the co-driver touched
the left side of the knee, the
driver knew to turn left and
when they touched the right
side of the knee, they knew to
turn right. Touching the top of
the knee meant straighten the
steering wheel, pressing down
accelerate and pulling on the
knee the signal to brake.
For safety, the co-driver could
stop the car at any point. But
with every kilometre, the
drivers became more and
more confident.
One driver, who is blind in one
eye and partially deaf, made it
up to 50 kilometres (30 miles)
per hour by the end of the
straight.
By taking part in the event,
the drivers hoped to help
break stereotypes of those
with disabilities.
News 15
Contact the Elderly
Contact the Elderly organises
monthly Sunday afternoon tea
parties for small groups of
older people, aged 75 and
over, who live alone. This
offers some friendship and
connections with others.
Each older person is collected
from their home by a
volunteer driver and taken to a
volunteer host’s home for the
afternoon. The group is
welcomed by a different host
each month, but the drivers
remain the same so that
people know who will pick
them up.
The tea parties bring people of
all ages together, develop
fulfilling friendships and
support networks, and give
everyone involved something
to look forward to each month.
The tea groups operate at
weekends when most
community services for older
people are not available and
Sundays which can be a bit of
a lonely day of the week.
Find out more about tea
parties in your area by looking
on the Contact the Elderly
website at www.contactthe-elderly.org.uk or calling
0800 716543.
16 News
Deafblind people use hightech glove to communicate
Researchers in Germany have
developed an innovative hightech glove for deafblind people
to try to make communication
more accessible. They interact
with one another through a
tactile alphabet called Lorm (a
form of the deafblind manual
alphabet). Touching certain
points on the palm can create
words. The new gadget called
the Mobile Lorm Glove, will
enable deafblind people to
communicate with a broader
range of people and support
them to have more social
interactions. They will be able
to send texts through a smart
phone or messages through a
computer.
The way it works is simple and
original. The glove has sensors
on the palm side of the hand
and the deafblind person
touches them in order to
create the message. The
sensors translate Lorm into
text in German. The
transmission between the
glove and the phone or
computer occurs via
Bluetooth.
The receiver can then text
back in German and the
deafblind person gets the
message across to them in
Lorm. The vibrating motors on
the back of the glove transmit
the message. While the glove
is a prototype at the moment,
researchers believe that this
gadget will be the next step in
creating a better and easier
way of communicating for
deafblind people.
News 17
Ikea launches wireless
charging furniture
charging plates (set in the
base for the lamps). You just
place your phone on them and
you can easily charge it. Some
brands and models of mobile
phone need a charging case at
the moment, which you can
buy separately.
Ikea has unveiled new
furniture and items with builtin technology that can
wirelessly charge mobile
phones. The new furniture
works with many of the
leading mobile phones
available on the market and
stops you having to search to
find your mobile phone
charger or trip over wires. Any
wires that the furniture does
have is hidden away at the
back and connected to your
electric socket.
The company has developed a
beside lamp, table lamp, floor
lamp, bedside cabinet and
other items that have built in
Ikea have also developed a
piece of technology called a
charging pad. They come in a
single pad (for charging one
device at a time) or a triple
charging pad (where you can
charge three devices in one
go). They also have pads and
connecters that can be fitted
into your existing furniture,
eg, a table top to create your
own bespoke wireless charger.
It is expected that technology
like this will continue to
develop and new products will
be produced over the coming
years.
Find out more on the Ikea
website by using this link:
www.ikea.com/gb/en/cat
alog/categories/departme
nts/wireless_charging/30
611/
18 News
New play called The
Touchables in Moscow
An unusual play recently
opened at Moscow's Theatre of
Nations. The production is
called ‘The Touchables’: A Life
in Art. It is the first social
theatre effort undertaken in
Russia and also the first ever
theatrical piece to involve
deafblind people performing
beside sighted and hearing
actors. The play offers an
interesting experience for
audiences.
‘The Touchables’ looks to use
the stage as part of the
performance and it takes place
on a large catwalk in the
centre of the hall, with
spectator seats placed on both
sides of it.
The lighting, sound and seats
are all designed to support the
deafblind actors to find their
way around easily. Each
deafblind performer has a
sighted and hearing actor with
them. They support them to
tell their story and translate
their emotions.
During their stories the
deafblind people tell the
audience how they lost their
eyesight and hearing. They
describe any struggles they
have had growing up and how
they live day to day. They also
mention the positive aspects
of using the internet.
Another aspect of the
production deals with
relationships. People describe
their relationships with
partners, parents, brothers
and sisters as well as with
teachers and significant people
in their lives.
The idea behind The
Touchables was first
mentioned by Yevgeny
Mironov, the artistic director of
the Theatre of Nations. He was
inspired by the Israeli
Nalaagat Theater Ensemble –
a troupe from Tel-Aviv made
up solely of deafblind
performers.
News 19
Tap, Tap, See
TapTapSee is a mobile camera
app (application) which is
designed specifically for blind
and visually impaired people
who use iOS or Apple devices
such as an iPhone or iPad. The
app uses the devices camera
and the VoiceOver functions to
photograph objects, identify
them and speak out loud to let
the user know what they are.
TapTapSee lets a person
double tap on the screen on
their device. It will then
photograph any two or three
dimensional object, at any
angle and will then accurately
analyse the object in a few
seconds.
The app also includes some
more features such as
repeating the last object it
photographed using VoiceOver,
sharing the object you have
identified on social media and
saving it in your camera roll to
use at a later date.
This is a very useful app for
deafblind people who do use
an iPhone or iPad. A few
members have let us know
that they have found it to be
of use to them. One
gentleman used TapTapSee in
the supermarket to make sure
he picked up the right type of
milk because many of the
cartons and bottles feel the
same.
TapTapSee is available to
download from Apple store
and via iTunes.
20 News
Text Relay Service called Next
Generation Text
Text relay enables people who
are deaf, hard of hearing or
have a loss of speech to make
and receive telephone calls.
Since October 2014 the
service can be accessed
through smartphones, tablets,
laptops and PCs. Voice and
text can now be transmitted at
the same time. The new
service is called Next
Generation Text (NGT) and
can be used via the ‘NGT Lite’
app. Text relay can still be
used on textphones, but it
doesn’t give access to the new
features of NGT.
To understand the views of
text relay users following
these changes, Ofcom, the
communications regulator,
want to talk to many different
users. This includes users of
text relay who are deaf, hard
of hearing or have a loss of
speech as well as users who
do not have speech or
hearing loss.
They would like to hear from
anyone who:
• is 16 or over;
• uses text relay at least once
a month involving a relay
assistant, and
• is willing to take part in
research (either online or
face to face with an
interviewer) and use a diary
to document their use of the
service
Participants do not need to be
using the new NGT Service on
smartphones. They are
interested in talking to any
users of the text relay service
regardless of whether they are
accessing it on smartphones,
computers or text phones.
Communications support will
be arranged, if participants
would like this. To say thank
you for taking part there will
be a £30 payment. Anyone
interested in taking part in the
research, please use this link:
http://survey.euro.confirm
it.com/wix/p1842059610.
aspx
If you have any questions
please email
[email protected] or
call one of the research team
at Facts International on
01233 648532.
News 21
Breaking the Silence
by Jo Milne
Jo Milne was born in
Gateshead in 1974. She was
diagnosed as profoundly deaf
at sixteen months old and just
before turning thirty, Jo was
diagnosed with Usher
Syndrome. Jo was told that it
was likely one day she could
lose the majority of her sight.
This was a difficult time and
Jo experienced depression,
but she has always been
determined to live her life to
the full.
She never let her disabilities or
the childhood bullying she
suffered as a result, affect the
way she embraces life.
However there was always so
much that she was missing.
So in 2014 she made a lifechanging decision to undergo
major surgery.
She had cochlear implants
fitted allowing her to hear for
the first time, and when a
video capturing this moment
was posted on YouTube, Jo
became an overnight news
sensation. The video has
now been watched by nearly
9 million people all over
the world.
22 News
Every moment of Jo’s life since
the operation has been a
journey of discovery. She has
been able to hear the voice of
her mother who has stood by
her and helped her through
some of her darkest moments.
She has heard birds sing,
children chatting and the
sound of rain on her bedroom
window. She is also catching
up on a lifetime of music –
from the hymns that she
missed in school assembly to
the songs of The Smiths and
Elbow. And thanks to the
overwhelming public response
to the YouTube video, Jo has
had classical concert tickets
sent to her in the post by
complete strangers and had
seven songs written especially
for her.
‘Breaking the Silence’ is a
remarkable and beautifully
written memoir that will serve
as an inspiration to everyone
who reads it, and anyone who
has faced any type of
adversity in their life. It is the
incredibly uplifting lifestory of
a woman who refused to give
up hope and always lives life
with a smile upon her face.
Jo’s book can be purchased
online or at all good book
shops across the UK.
News 23
Huggies delivers 3D
printed ultrasound to
blind mum to be
Nappy brand Huggies has
created a 3D cast of an
ultrasound scan that was
taken for a blind mother.
The brand, in Brazil, has
created a video showing a 30
year old expectant mother
‘meeting’ her baby for the first
time via the 3D cast of her 20
week ultrasound scan.
The mother, Tatiana, went
blind at the age of 17 and had
therefore been unable to see
the scan.
The video shows her
describing how she imagines
the baby would feel before the
team from Huggies surprised
her with a cast of the child's
face for her to feel.
The video has been posted
online and has received more
than 8 million views as people
share this experience.
24 News
A new test for hearing loss
Maria Bitner-Glindzicz is
Professor of Clinical and
Molecular Genetics at the
Institute of Child Health,
University College London, and
runs the UK Genetic Deafness
Clinic at Great Ormond Street
Hospital. Her research focuses
on genetic deafness.
She has led the development
of a new test which aims to
improve the identification of
the genetic cause of a person’s
hearing loss. This test has
recently been made available
on the NHS.
Have you ever wondered
about the cause of your
hearing loss?
Most people do not know why
they or their child have a
hearing loss. For some people
this may not matter, but many
families do want to know the
cause. Hearing parents of a
deaf child often wish to find
out more about the cause of
their child’s deafness; they
may want to know whether it
is genetic and whether they
may have more deaf children,
or whether the deafness is
likely to get worse over time.
News 25
Other reasons for wanting to
find a cause for a person’s
hearing loss include the
evidence that particular types
of deafness may have good
outcomes after cochlear
implantation, or that it may be
useful to find out early
whether a person’s deafness is
related to a syndrome. In this
case, early monitoring for
complications may be put in
place. For young adults who
are thinking of starting their
own family, more knowledge
about the cause of their
deafness may be helpful in
trying to determine whether
their hearing loss is likely to
be passed on to their
future children.
Improvements in
genetic technology
make testing easier
Advances in genetic
technology now mean that
more comprehensive testing is
available for many genetic
conditions, including deafness.
The cost of genetic testing has
declined in the last few years.
This means that it is now
technically and financially
possible to test a person’s DNA
for a large number of genes,
instead of just one or two
genes. Therefore, genetic
conditions that may be caused
by any one of a large number
of potential genes, such as
hearing loss, are now
amenable to much more
comprehensive genetic testing
than was previously possible.
By no means will people all
receive a diagnosis as a result
of a gene panel test, because
doctors and scientists don't yet
know all of the genes involved
in hearing. However, many
more people now know the
cause of their deafness, as a
result of the test. Since it is
possible to add more genes to
the ‘panel’ as more genes are
discovered the testing will
improve as the knowledge
increases.
How to find out more
People who are interested in
the gene panel test should ask
their doctor to be referred to a
local genetics centre to discuss
investigation of their hearing
loss. Those with a family
history of hearing loss, or
those without a family history
who have severe-profound
hearing loss from birth without
an obvious cause may well
have a genetic hearing loss.
26 News
Guide Dogs’ Chairman
to step down
Guide Dogs’ Chairman, John
Stewart, has decided to step
down when his term comes to
an end this month, as he has
taken the personal decision to
reduce his workload.
Guide Dogs has now begun a
search for another person,
who is passionate about
helping people living with sight
loss, to become their
Chairman.
Guide Dogs Chief Executive,
Richard Leaman, said: “I
would like to extend our
warmest thanks to John for
the invaluable part he has
played in making Guide Dogs
the fantastic charity it is today.
“During his time with us, John
has overseen many significant
projects including our
collaboration with Vision 2020,
our work with Microsoft and
the Future Cities Catapult on
Cities Unlocked, and Blind
Children UK becoming part of
the Guide Dogs family. He has
also overseen some excellent
initiatives to improve how we
manage and govern ourselves
as an organisation.”
Help to protect pedestrians –
Stop, Look and Listen campaign
New research has shown that
electric and hybrid cars are
40% more likely to be involved
in a collision with a pedestrian,
and every year thousands
more of these quiet cars are
appearing on the roads. Guide
Dogs wants the Government to
ensure that quiet vehicles are
fitted with effective artificial
sound generators so that
everyone – especially people
with sight loss – can get
around safely and without fear.
Paralympic sprinter, Libby
Clegg, is backing the
campaign with a change.org
petition. If you are interested
in supporting this please visit
http://chn.ge/1KDyNxi and
sign the petition.
News 27
Technology to improve TV
Viewing for people with
colour blindness
New technology has been
developed to enhance
television and video signals
which will improve viewing for
people with colour blindness.
The technology called Eyeteq
is being brought out
commercially by Spectral
Edge, who are a company
working with the University of
East Anglia.
The company announced that
Eyeteq has just been linked
with a maker of cable TV
receiver technology and set
top boxes. Manufacturers of
set top boxes who opt to use
the technology will be able to
offer colour blind customers
new products. Future plans
are being looked at to put the
technology into TV’s, computer
monitors and other types of
displays to further support
people.
28 News
Disabled Students' Allowance
The Government are making
changes to the Disabled
Students' Allowance (DSA).
They plan to alter the way in
which disabled students
following Higher Education
courses receive support; they
are looking at how support
can be provided and who
should be responsible for
paying for it.
RNIB are concerned that the
Government feel that some of
the support that blind and
partially sighted students
currently receive through
support workers, could be
provided by assistive
technology alone. However,
they don’t believe that
assistive technology can fully
meet the access needs of
many students with sight loss.
RNIB would like to hear from
anyone currently receiving
DSA funded support or if you
have done so in the past.
What kind of support did you
receive through DSA to help
you in lectures, in the library
or to access books, journals
and other course materials?
They would also like to hear
how support workers helped
you and if you believe that
assistive technology such as
'text to speech' or 'text to
braille' software could have
given you the same level of
support or access to
information that a support
worker had.
Contact the team at RNIB on
[email protected] or
call 020 7391 2123.
Information 29
Do you have money
worries?
money issues and talk through
any money concerns that you
may have. To use the service
on Facetime just use the email
address:
[email protected] and
to use the service on Skype
type in: deafplus.helpline
The helpline will be open
everyday on the following
times:
Monday: 10am – 2pm
Tuesday: 10am – 2pm
Wednesday: 1pm – 5pm
Thursday: 1pm – 5pm
Friday: 10am – 11.30am
The deafPLUS BSL Money
Advice Helpline is now open.
The debt helpline will be
delivered via live chat using
either Skype or FaceTime
(used with Apple devices).
They will be able to provide
people with information,
advice on debt, advice on any
Need an appointment?
If you prefer to book your
appointment in advance click
onto this web page and scroll
down to see the online
calendar and appointment
service:
http://www.deafplus.org/
what-we-do/helplines/
30 Information
Emergency text service for people
who are Deaf or hard of hearing
There is now a new text
service to access the
emergency services for people
who are Deaf or hard of
hearing.
Step 1: Register your mobile
phone with the service before
an emergency happens. You
will need to register again if
you change your mobile phone
number.
Step 2: If an emergency
happens create an SMS
message containing the details
below:
Which? Need Ambulance,
Coastguard, Fire Rescue, or
Police
What? Briefly, explain the
problem.
Where? Exactly where is it.
Please give the name of the
road and town with some
more information like a house
number or nearby landmarks
or main roads.
For example your SMS text
message might read:
'ambulance. man having a
heart attack. outside post
office. valley road in watford'
If you include this information
then the emergency services
will not have to ask as many
questions and will be able to
respond quicker.
Step 3: Then send the SMS
message to 999.
Step 4: The emergency
service will reply to you either
asking for more information or
telling you that help is on the
way. Don’t assume that your
message has been received
until you get a message back
from the emergency service,
this can take around two
minutes. If you have not
received a message within
three minutes you are advised
to send another message
straight away in case there is a
technical issue. An SMS
'Delivery Report' does not
mean your message has been
received.
For any non emergency
situations a minicom system is
available by contacting 18001
101.
Information 31
Caseworker FAQ’s - Hearing
loop systems for the home
Hearing loop systems help
people with hearing loss to
hear more clearly by reducing
the impact of background
noise.
How does a hearing loop
system work?
The hearing loop converts
sound into a magnetic field.
This is then picked up by
hearing aids that have a T
programme or setting – this is
now commonly known as the
hearing loop setting. The
hearing aid converts the
magnetic field back to the
original sound and amplifies
the sound making it louder.
How do I set up a hearing
loop system in my home?
The hearing loop system can
be installed by yourself or
someone who is good at DIY.
Full instructions should be
included with the equipment.
The loop wire is placed round
the edge of the room, usually
at skirting board level. Cable
clips are normally supplied to
clip it down and you can take
the cable over doors and
window frames but again, any
information should be
mentioned in the instructions.
The system will have an
amplifier. This is normally
32 Information
placed near a TV or connected
directly into the TV’s audio
output socket (usually on the
back of the TV) using a plugin
lead. If your TV doesn’t have
an audio output socket then it
is often possible to use the
SCART connection instead.
Most home loop systems
are also supplied with a
SCART adapter.
missed the doorbell or
telephone. We would definitely
recommend that you look at
systems with more than one
microphone or with the
potential to add more
microphones later if the cost
fits your budget.
If you can’t connect your
hearing loop system directly to
your TV using a plugin lead or
SCART cable, you can use a
microphone (which is also
normally supplied with the
loop) to pick up sound from
the TV loudspeaker. You need
to position the microphone as
close as possible to the
loudspeaker to get the best
sound. Many new TV’s also
have a Digital Optical Audio
Output and you can use this
connection with your home
loop system.
You can expect to pay
approximately £80 for a
hearing loop system and there
are a wide range of systems
available. Hearing loop
systems are normally exempt
from VAT. You will need to fill
out a VAT exemption
certificate, which you can get
from the supplier.
On some loop systems, you
can use an extra microphone
to pick up the sound of your
telephone or doorbell ringing.
Then you don’t miss these
whilst watching television.
Some members have
contacted us to say that
having just one microphone
for their loop system attached
to their TV means they have
How much do these
systems for the home cost?
You may be able to get a
hearing loop from your local
Social Services department.
Social Services departments
do vary though, in terms of
the equipment they supply
and whether they charge
for it.
Information 33
Action Talking Therapies
Network
Action Talking Therapies
Network offers face to face
counselling sessions to people
living, working or studying in
London whose lives are
affected by sight loss or have
a visual impairment. The
service also supports families
and carers.
The service supports people
who have lost or are losing
their sight, especially those
who may be worried about
how they will cope. People
may feel depressed about the
changes. They could also
experience feelings of sadness,
anger or anxiety and this could
be affecting them on a day to
day basis. It could be causing
people to worry about the
future.
If family members are
supporting a person with sight
loss, they may experience
similar feelings and may need
someone to talk to. People
could find it helpful to explore
ways forward in their life and
talk about how they are coping
with living with, or supporting
someone, with sight loss.
Counselling can help
individuals get a clearer
understanding of their feelings
and the challenges they face.
Action Talking Therapies
Network is a team of
counsellors offering support
and counselling. They will look
to:
• talk to you about your
situation and how you're
feeling.
• organise a regular time and
confidential space to explore
your feelings.
• offer one-to-one support and
counselling so that you can
talk things over in more
depth with the same person.
Your counsellor will discuss
and agree the number of
sessions with you – initially six
but can be increased up to
twelve sessions.
Once they have your details,
the senior counsellor will
contact you by telephone to
have an initial conversation
and if appropriate will arrange
34
Information
a convenient time for you to
come in and meet them for an
appointment. They aim to
make contact with you within
five working days of receiving
your details, although it may
take longer at busy times, or if
it is difficult to contact you.
The first appointment offers
you an opportunity to talk
about your situation and to
explore what further support
you might find helpful.
The service is completely
confidential. This means that
what you say will remain
within Action Talking Therapies
Network and will not be
passed on to anyone else
without your consent.
The only exception to this is if
they have very serious
concerns about your safety or
that of others. In such
exceptional circumstances
they might need to ensure
your safety, but would strive to
discuss this with you and
assist you in seeking
emergency support. They
adhere to the British
Association of Counselling and
Psychotherapy Ethical
Framework and comply with
the Data Protection Act.
There is no cost to you for the
service as the Action Talking
Therapies Network is funded
by the Department for Health.
You can get in touch with
Laura Smart, Senior
Counsellor, at Action for Blind
People, London and South East
on: 020 7391 2022 or email:
laura.smart@actionforblind
people.org.uk
Regional Focus 35
Introducing Claire Baldwin,
Senior Outreach Officer in
West Yorkshire
I started working with
Deafblind UK in March 2015
after a lovely (and
exhausting!) 18 months
maternity leave. Before this I
managed an extremely busy
volunteer programme for an
LGBT charity in Manchester for
four years. I’ve worked with
Action on Hearing Loss
delivering employment advice,
as a Deaf Role Model and
Trainer for the NDCS, and I
am a qualified teacher. My
first job after university was
in the education department of
a prison!
Born the only deaf person in a
hearing family, I wear hearing
aids in both ears and was
educated in mainstream
schools. I started to learn BSL
in my early 20’s when I
realised I wanted and needed
to meet other deaf people. I
have a lifelong passion for
equality and inclusivity, and
am really excited to have the
opportunity to bring the
fantastic Deafblind UK
outreach project to West
Yorkshire. I’ll be matching
members with volunteer
befrienders and drivers,
setting up groups for deafblind
people where there aren’t any
currently in place, and carrying
out casework with our
members. I believe in strong
partnership working, and have
already met several likeminded organisations who are
really keen to work together in
supporting our members.
I would love to hear from any
members who have questions
36 Regional Focus
or suggestions. Those I’ve met
so far tell me that there have
been many services lost for
deafblind people in West
Yorkshire. I’ll be working very
hard to change this! I look
forward to meeting as many of
you as possible very soon.
If you would like to contact
Claire you can call her on:
07920 802668. Claire’s usual
working days are Monday,
Tuesday and Thursday.
Special thanks to our team
of volunteers from Lyn
Pollard, our Volunteering
Programmes Officer
I would like to say a big thank
you to our team of volunteers
who work on the Information
& Advice Line and who keep
in touch with our members.
Welcome to our new
volunteers joining the team
who are Vicki, Andrew, Sarah
and Michelle. You will be a
great addition to our existing
team and it will mean we can
keep in touch with more of our
deafblind members.
Welcome to our new
volunteers who do a very
similar role to our Information
& Advice Line volunteers but
from their own homes. They
are Roland, David L, David B
and Andrew. You are all a
great help in looking after our
members in the south of the
country.
A big thank you to our admin
volunteers, based at our
Regional Focus 37
Peterborough Head Office and
they are Craig, Tracey, Fay and
Mariami. They assist with
volunteer recruitment and our
membership scheme.
Thanks also go to Carol and
Nick who contact our members
on their birthdays to send
them our best wishes and also
welcome to Michaela who has
recently joined the team.
You are all very much
appreciated and we certainly
couldn’t provide this service
without you. We hope you all
continue to enjoy your role
with us.
38 Focus on Digital Inclusion
Using the Apple Watch by Tim
Locke, Digital Inclusion Officer
During Deafblind Awareness
week this year, and in
partnership with Southwark
and Lambeth Council,
Deafblind UK attended an open
exhibition to promote the dual
sensory support services we
are able to offer these Borough
communities.
The platform offered a good
opportunity to showcase
Deafblind UK’s digital inclusion
project and demonstrate the
positive benefits of breaking
down social isolation in the
community.
Brian and Teresa visited the
exhibition. They live in the
South London Borough of
Southwark. They are both
registered blind and
accomplished users of iPhones.
They rely upon voiceover
accessibility to use their
phones. They use the phones
to perform every day tasks
such as browsing the Internet,
sending emails, messaging and
using the calendar. They are
technically curious and feel the
Apple product range is well
developed for visually impaired
Focus on Digital Inclusion 39
people. They feel they are
easy to use and cost effective.
Brian and Teresa had recently
purchased Apple Watches and
they were keen to share some
of the positive experiences the
new technology was having on
their daily lives with me.
Brian enthusiastically
explained: “To work with the
Apple Watch you need to pair
it with your iPhone. Once all
your Apple Watch apps are
synced with your iPhone apps
you’re ready to go.” To Brian,
the Apple Watch is like ‘a mini
iPhone’ and it lets him read
emails, messages and receive
phone calls all from his wrist.
Brian described it as an
‘amazing gadget’.
Teresa was equally
enthusiastic. She excitedly
showed me how she uses the
Siri voice recognition on the
Apple Watch to set alarms –
useful she says for “waking me
up and helping me cook!”
Brian continues to explain how
the new technology can appeal
to users with multiple sensory
losses. He shows me how, by
raising his wrists that he can
‘automatically’ activate the
Voiceover accessibility feature
on the Watch.
Teresa uses her Apple Watch
to send Brian a text message
and then makes a demo call.
Brian’s watch ‘intimately’ taps
his wrist to inform him of his
wife’s call saying it “appeals to
my sense of touch” and offers
40 Focus on Digital Inclusion
“endless possibilities for the
hearing impaired community”.
Teresa has also learnt how to
turn features on with her nose
and to silence audible
feedback with her cheek which
she says is: “all useful when
washing up!” She has heard
that you can listen to music on
the Apple Watch and is eager
to try.
Teresa breezily concludes: “It’s
all about trial and error really
– experimenting with what you
can do”.
Brian and Teresa have agreed
to come back to Deafblind UK
in the future and tell us more
about the positive impact that
this new device is making on
their lives.
Brian and Teresa are good
examples of how the Deafblind
UK Digital Inclusion Project,
with its focus on off the shelf
tablet technology, can have
real relevance and appeal to
the lives of Deafblind UK’s dual
sensory impaired members.
Focus on Digital Inclusion 41
Apple Force Touch technology
supports people with a visual
impairment by Haley Hobin,
our Digital Blog volunteer
First debuting in the Apple
Watch and the new Macbooks,
Force Touch is a new
technology which could be
introduced later this year to
the iPhones – which will help to
support people who are deaf or
blind to use these devices.
The new Force Touch trackpad
uses pressure sensors placed
in the four corners of the pad
to feel when a person clicks on
it. Force Touch can allow clicks
to be made anywhere on the
track pad surface including
along its top edge. On many
other track pads you have to
click somewhere on the lower
half of the pad to register an
action. This could be useful for
users, for example, with a
visual impairment as they will
be able to click on the whole
trackpad without the
frustration of having to find the
bottom buttons.
42 Focus on Digital Inclusion
Furthermore, this new
technology can be easier to
use as it can indicate several
different clicks according to the
type of touch or ‘force’ given.
For example, a light click can
perform one action, whereas, a
hard click can perform another
action such as speeding up the
fast forward of a video or
finding the definition of a
specific word. Also, when
clicking on the trackpad, to the
user the trackpad (through
haptic feedback) is made to
feel as though the trackpad is
moving down and clicking as a
button would - even though it’s
not.
Force Touch could also be
introduced in the new iPhone
6s and iPhone 6s Plus this
year. An Apple insider believes
that this will be the most
notable change to the new
iPhone system.
Focus on Digital Inclusion 43
Julian’s story
Julian has an Apex Humanware
Braille computer. He initially
asked for a befriender who
could help with the features on
the computer. Sue sent Julian
some information about
activities that she thought
would interest him and they
talked about a befriender who
could play scrabble or just visit
for a chat.
Julian Bradfield has been a
member of Deafblind UK for a
while. He lives in Fulham with
his wife, Jenny and two guide
dogs (one retired). He is a
chess player and Sue Sinton
Smith, our Senior Outreach
Officer in London arranged for
Julian to attend the Kensington
and Chelsea Disability Alliance
Chess Club which is held
monthly. He attends regularly
after his first successful visit.
He likes to be active and
enjoys Blind Week, an annual
sailing event and cycling on a
tandem with a friend in
Norfolk.
Julian met his new befriender
Jolyon Fenwick who plays
chess with him. Julian also
continues to attend the Chess
and Scrabble club run by
Action on Disability Kensington
and Chelsea.
Sue also met Mike Brace at the
London Visually Impaired
Forum. Mike has an Apex
Humanware computer. He has
offered to support Julian with
his computer and they are in
touch to chat further.
If you would like some support
to access technology please
contact our Digital Inclusion
Officer, Tim Locke on
[email protected]
or 01733 358100.
44 Article
Tommy and Dan’s
fantastic visit to Brighton
Dan was waiting outside his
flat, stood still, slowly soaking
up the light rain. We set off
and the rain got a little worse.
The streets were still quiet, if
anyone had woken up this
early on this Sunday, they had
decided to stay in.
At Stockwell we boarded the
train and made our way to St
Pancras arriving in plenty of
time for the connection to
Brighton, a nice train guard
helped us through the barriers
without inspecting our tickets
and on the train we sat next to
a group of sleepy foreign
teenagers on a school trip of
some kind. One stared for
most of the journey before
plucking up the courage to ask
about Dan. He spoke in good
English, but didn’t seem to
understand me when I replied.
Maybe it was the northern
accent!
The wind made it rain from all
angles in Brighton so we took
shelter in a café and had
coffee and cake. I then
googled ‘things to do on a
rainy day in Brighton’ which,
as it turned out, ended up
making the day! We found the
Brighton Pavillion.
At £10 per person the Pavillion
seemed a bit pricy, but in
hindsight it’s a total bargain.
It’s the most beautifully
Support Us 45
decorated building I have ever
seen, the 9 meter chandelier
in the banquet hall is stunning
and the rest of the room is
bordered with priceless and
precious items made from
sparking silver and gold! The
colours of the walls in the
music room and the dome
ceiling took my breath away.
I tried to describe everything
as I saw it for Dan and I
translated the guide into
deafblind manual but
unfortunately words cannot do
it justice. Dan wanted to touch
the objects but unfortunately
there were signs and security
guards everywhere to stop
people touching anything. Still,
I think Dan enjoyed hearing
about the history of the
building and the day out.
Before catching the train back
we went for a drink at an
ancient little pub. A guy sat
opposite quizzed me about
Dan. Just being with Dan
attracts people to come over
for a chat who I would never
normally come into contact
with. His name was Spencer
and he lived in Barcelona. He
was back visiting his mother
who had sadly just been
diagnosed with cancer. He said
‘maybe it’s just me being
sensitive because of my
mother, but seeing you two
has made me very emotional’.
He described Barcelona as a
‘blinding city’ several times
without noticing his accidental
faux pas! He offered to buy us
a drink but we had to rush off
to get our train back to
London.
It was a tiring day and the
English summer let us down,
but it’s never boring with Dan
and it was great to get out for
a full day!
46 Support Us
Run the London Marathon
Deafblind UK has some Golden
Bond running places for 2016’s
Virgin London Marathon to be
held in April. If you know a
family member or friend who
is a keen runner and they
have always wanted to run in
London, please consider
asking them if they would run
for us. Taking in all the famous
sights alongside over 36,000
people the London Marathon is
an amazing experience.
For further information about
supporting Deafblind UK and
taking up a running place, call
us on: 01733 358100 or
email us at: supportus@
deafblind.org.uk
Social Networking 47
If you would like to find out more about events, news and
views at Deafblind UK, keep up to date with us by finding us
on Facebook and Twitter:
Find us on Facebook and ‘like’ our
page by searching for Deafblind UK
Find us on Twitter by
searching for DeafblindUK
www
Or look on our website at
www.deafblind.org.uk
You can also contact our fundraising team on:
01733 358100, email them at [email protected]
to find out more about our upcoming events and activities.
About
Deafblind UK
Who we are
Deafblind UK is a national
charity offering specialist
services and human support
to deafblind people and those
with a progressive sight and
hearing loss acquired
throughout their lives.
Our aim is to enable people
living with this unique
disability to maintain their
independence, quality of life
and reduce the isolation
deafblindness creates.
What we do
We achieve this through
campaigning, the provision of
practical and emotional
support via our Information
and Advice Line, volunteers
and social groups.
Please send submissions to
Open Hand using the
contact details on Page 2.
Postal submissions can be
sent to the address below.
Submissions are required
for the Autumn issue by
30th October 2015.
The views and opinions
expressed in Open Hand
are not necessarily those
of either Deafblind UK or
the editor and we reserve
the right to edit
submissions. Open Hand is
available to all members of
Deafblind UK free of
charge and to nonmembers at £20 per year.
Open Hand is available in
Braille, large print, tape,
audio cd or via email from
Deafblind UK and can be
downloaded free from
www.deafblind.org.uk
Contact us
Deafblind UK, National Centre for Deafblindness,
John and Lucille van Geest Place, Cygnet Road,
Hampton, Peterborough, PE7 8FD
Tel/Textphone: 01733 358 100
Fax: 01733 358 356
email: [email protected]
www.deafblind.org.uk
Registered Charity No: 802976
Company Reg No: 2426281
Cover image: A digital inclusion session at Rainbow Court